Kadin's Journey

Happy 2nd Birthday, Kadin!!

2010-11-03T09:57:00.000-05:00

I am having the typical response today to the realization that my miracle baby is already 2 - where has the time gone? What have we spent the last 2 years doing?? The first 4 and a half months of his life seem like a dream to me. I know God carried us thru that time in his life because most of it seems like a blur while other times are extremely vivid to me. After coming home, I know we spent the next year going to Dr. visits in the metroplex. We are so blessed that Kadin was released from regular check ups with his Dr., but we really miss taking those trips to see the people that had such a miraculous hand in allowing us to keep him! He keeps me so very busy. It is so amazing where he has come from in his short little life. This birthday snuck up on us. We didn't have a big party for him when he turned one because we had sooooo much going on in our lives. I think at that time we were still going to the Dr.'s in FW about twice a month. We will be having some kind of party for him in about a week and a half, because again, we have soooo much going on. I wanted to do it this Saturday, but we have Harvest Ball that day and no free time that day when the whole family can get together.

For being 2 already, my little man is still tiny. He might weigh about 19 pounds and is wearing 12 month clothes (some 2T and under fit him, just depends on what they are!) He talks non-stop but it's pretty much Kadin-Language. He can definitely say "Hook Em" and "Wreck Em" and many many other words that you would recognize, but as far as putting sentences together, we aren't there just yet. I am not able to work with him as much as I desire and as he needs because I am still working from home, but that is hopefully going to change very soon. He isn't in therapy anymore as I wrote about a few months back, but we may have him evaluated this month just "to see" how things are going. He seems so very normal to me. He is quite stubborn and likes to wear his sissy's fake pearls. He likes to sing in my microphone and sit in my lap while I work. He can't wait til Daddy gets home so they can "fick it" and take out the trash! Even though he doesn't see his big brother JT often, he hasn't forgotten him and runs to him every time we see him. The other kids are like air to him. It's so awesome to witness...

I realize I will be 56 when Kadin graduates high school, but living for God and my children is all that I desire, so bring it on.... lol :)

Happy Birthday, Kadin-Poo!! We love you soooo much baby boy!!!

Your Emails

2010-02-28T16:48:00.000-06:00

If you are interested in Kadin's Journey and continuing to read about how he is doing, please submit me your email address so that I can send you an invite to this blog. Soon, it will not be public anymore and I want to make sure those that sincerely care about him and my family can continue to read and follow him.

I will give it a few days ... Thank you very much for your consideration!!!

Leslie

ECI

2010-02-03T12:52:00.000-06:00

Well, today marked another "milestone" in Kadin's Journey. His therapist Marnie and our program coordinator Cindy came to visit him today to evaluate him. Although he is still considered "delayed" somewhat, we have opted to discontinue our ECI monthly visits. They will come see us quarterly for the remainder of the year.

Kadin has come such a long way and it is so nice to be able to sit across from someone STILL who knows how small he was, how he had difficulties doing "this" or "that" and can see what a remarkable journey he has taken. He is such an awesome little boy ... I still call him my "baby", as he is still small like one.

We are so very excited at his progress and how he continues to improve every single day. I know I don't blog enough about how things are, but for the most part, we have been cleared with all of our specialists and we just grow now. We still have appointments throughout the year, but they aren't monthly like we experienced for the first year of his life.

Kadin is 15 months old today and we couldn't be more proud of him. Our whole world revolves around him ... he is the world to most of those in our family. I look forward to his continuing growth and achievements to come .....

Thank you for continuing to follow us ... it's been quite a ride!

Long Overdue!

2009-12-26T13:31:00.003-06:00

Well, I tried to post this once earlier in the holidays but it didn't post, not sure what the issue is/was, but I'm trying again...

Kadin has come a long ways in the past few months. It seems that he just started doing everything at once. Once he learned to army crawl, the "normal" crawling was upon us before we knew it ... and though his therapists kept saying that he needed to be sitting up before he crawled, he did both within a few weeks of each other (crawling first) and it didn't seem to make much difference in him. HE IS DETERMINED! He began crawling and then sitting himself up on his side, then he was finally strong enough to sit all the way up and now, today, he is pulling himself up onto everything and cruizing along furniture, walls, doors, ANYTHING he can hold onto, he is GONE! lol He is so precious!

Kadin was sick for a couple of months and we were really concerned. I was having to give him breathing treatments two and three times a day, he rattled, he coughed, he threw up ... it was not easy and definitely not pretty, but we managed our way thru it and today he is just fine ... guess it was mostly allergies because no one has really been sick. We went to the doctor once every week for a couple of months so they could monitor his sats and even had some xrays to check for pneumonia and any other infection that was keeping him stirred up ... glad all of that is over now.

Our little man is even clapping now. He claps when he is happy or when he likes something, especially if you ask him if he wants a bottle and his answer is to clap, that means YES! He also throws his hands and arms up in the air when we say YAY! ha ha It's so precious. He laughs uncontrollably when you growl, and he even growls when he wants something (like food) and needs to get your attention!

I can not believe how much this baby is eating. I have to feed him about six or seven times a day. He eats big people food and really turns his nose up at baby food ... but he just barely has 2 teeth showing so he can't eat much other than soft mushy things. It's still awesome to see him enjoy all of our meals with us. If you are evern chewing anything, even GUM ... he knows it and wants whatever you have.

He has become so strong willed lately, but I actually think this is a characteristic that was present in him from day one, it is part of the reason that his fiesty little self made it thru all he has been thru, with little to no problems now, but for instance, he wanted my daughter's laptop tonight and had a throw-yourself-backwards-type of fit when she wouldn't let him have it! I missed it, but I heard about it when I got home, and I can so envision it anyway that I'm almost glad that it was Daddy who got to deal with that one and not me! He is very demanding, he requires a lot of attention, loves to be held, and is slowly but surely learning to cuddle with us. Cuddling is not something that he has ever done. I attribute that to him being used to not being held once he was outside of the womb ... yes he was held in the NICU, but for 10 weeks he was on the ventilator and if I got to hold him it was for an hour at a time and not every day, depended on his strength and issues present at the time....

So I guess we move on continuing to see our pediatrician and specialists as the appointments come up and work with him every day as he continues to grow ..... and just love him. He is the greatest blessing I think we have ever had. No matter what he does, he brings tears to my eyes (especially when he tries to rip my lips off, lol) and a smile to my heart. He is so loved and adored with everything that is within us .... THANK GOD for our little SPOILED miracle baby!

Thank you all for your continued prayers, and if you would like to see Kadin dancing to the tunes of my 8 year old playing Rockband, go to www.youtube.com/redlady88 and you can get a good belly laugh! There's a little air guitar in there too, just watch....

Blessings.....

Leslie

Glad that is behind us now!

2009-10-15T23:53:00.000-05:00

Surgery, procedure, operation, whatever you wanna call it, it is behind us now, thank GOD! We were scheduled for hypospadias repair and circumcision on the 14th, but our surgeons couldn't get their schedules to coincide for emergencies so we rescheduled for the 15th and everything went just as planned. Nothing like having to do pre-op and then answer all the same questions over and over to many many people! ha! So, to make a long and boring story short, we were discharged from the hospital around 11:30am and then we went to get a motel because of the exhaustion ...... and here I am, after a nap and a meal and wide awake!

Kadin is doing well, he is sleeping right now. He has been a little fussy, which is to be expected, but otherwise he has been everywhere on the floor and in his bed. He has not eaten well but he is taking his bottle and other fluids so that is good ... the main idea right now is to get him to pee. So, while he is asleep now, I should be getting myself to be also.

I just wanted to again thank all of our family and friends for all their prayers, emails, calls, texts and their prayers and concerns for us and this 3-4 day experience! It is greatly appreciated and we are so thankful for all the encouraging and uplifting words that kept us going when we were ssooooooo tired. I know normally it probably isn't likely to be so tired, but I am not a morning person so having to get up at 4:45am and get to the hospital not one but TWO days in a row just flat knocked me down! lol So THANK YOU for everything ....

I will update more after we get home. For now, I am going to veg and do nothing !!!!!!

So it's here, and oh how I hate it ....

2009-10-13T23:54:00.000-05:00

It is 11:37pm and we have to be at the hospital in a little over 6 hours. That means little to no sleep for me tonight. Kadin is still awake, as they wanted us to keep him up for about an hour longer than his regular bed-time but it is way past that already and he is still blowin and goin! I just pray that I hear the alarm in the AM and don't sleep past time to get up and go... I have a real fear for doing that, you know - missing the important things in life because I overslept. I sleep very lightly these days, but on occasionally I will fall into a deep sleep and NOTHING wakes me up. Just can't do that tonight, lol....

We went to Kadin's pre-op appointment and it was quick and painless, unlike tomorrow's scheduled events. They weighed and measured him, we talked in great detail about his past medical history, we visited with the anesthesiologist, and Kadin fell in love! That's right ... he loves Tracey from the anesthesiology department. She came in and he lit up, he leaned over many times trying to get to her, and when she held him, he went right for her beautiful hair and cute stylish glasses!

I have never been as convinced as I am right now that Cook Children's Medical Center has an abundance of angels working there. While we were there, Kadin was passed from nurse to nurse and HE LOVED IT! Oh my, I mean he LOVED being in all those arms today. He NEVER reacts like that to strangers, but today, the nurses were not strangers to him. It was as if he were "home" again. He was comfortable, he was smiling, happy, energetic, and very much in a happy place.

We are the first on the list in the morning. We are scheduled for 7:30am, not sure why we have to be there at 6am! *insert frowny face emoticon here* I know, we do what we have to do for our children but man ... I am just NOT a morning person so the fact that I am not even going to have adequate sleep is a sure sign that Starbucks will be my best friend in the morning and no one else should even attempt to speak to me until around noon. I know ... you are thinking "Then what the heck are you doing on the internet blogging at this hour?" Well, I logically am asking myself the same thing, but I assure you, even if I were to go lay my head on the pillow, as nervous as I am about this entire procedure, I would still not sleep a wink ... and then we go back to the fact that I fear I will not even wake up in the morning on time. This is an extremely vicious cycle, and we have to wake Kadin in the morning and give him a breathing treatment before we get to the hospital.

We don't know how long the surgery is going to be ... the Dr. we spoke to this afternoon said anywhere between 30 minutes to 2.5 hours. He also said he hopes we are prepared to stay as you never know how things will go with little ones who have CLD (chronic lung disease). We are prepared ... well, ok, not really, we don't want him to have any setbacks and it would be somewhat devestating, but we can handle it. I am unable for some strange reason to get on Facebook while we are here. I can only access it from my phone in the mobile version so I will just have to write my blogs here on blogspot and let it automatically feed it to Facebook ... so if any of you have any questions or concerns, go ahead and post them on Facebook as I will get the notifications that you have left me something. I will have my laptop in the hospital and will update as soon as I can. Recovery is supposed to be a few hours if everything is looking good .....

So now that I have pushed the limits and it is almost midnight (I have always told myself if I can go to bed at least before midnight, I will get a full night's sleep! lol) I should be going. Thank you for your prayers and concern for Kadin. Please pray for us to have strength tomorrow as I am sure we will be exhausted. And on top of all that ... we are missing the kids back home.

More updates tomorrow . . .

Still sick ...

2009-09-25T09:46:00.002-05:00

Our little man is sick and I'm so worried about him. His cough seems to be worse today. I managed to get the meds down him without him throwing up. YAY MOM! But with him propped up beside me, I can clearly hear him wheezing. Going to give a breathing treatment while he is asleep so he will breathe in all the medication. He likes to play with the tubes when he is awake and lick on them and all that, lol ... so we don't know how much of the meds he actually gets. Tried the mask last night and that didn't work either. He wanted to eat it. Anyway, took him to the Dr. day before yesterday and he said if he had not been so cheerful at the visit he would be admitting him into the hospital and that we need to keep a close eye on him because he could turn worse within a matter of no time ..... He didn't drink all of his bottle this morning so I am concerned, and I have a road trip to make this evening and will be away from him for about 8 hours, give or take. I just worry ... and worry some more ... and then some more. He has surgery coming up in October and I am praying nothing hinders that. Have to go get things ready for my road trip, please pray for Kadin and I will try my best to update soon. I've gotten bad at updating, life just seems to take control and whiz on by .... Thank you for your prayers!!

The Helmet

2009-09-13T00:40:00.003-05:00

We didn't really know what to expect when Kadin was put in this cranial helmet. I was afraid he was going to fight it, but the minute that the Orthotist put it on him, he was good to go. We started out alternating off and on every hour. That was a little challenging, since we got it and went straight to eat and then had a ride home. But anyway, it was on and hour, off an hour, for the first day. The second day, we did 2 hour rotations with an hour off ... the next day, three hours... and finally, on the 4th day, it was an all day thing...something like that. You get the idea. He wears the helmet all day now and is allowed to take it off for an hour at a time. So every night, about 8pm, we take it off and give him his bath. We clean the helmet in the time frame that he has it off. He LOVES that thing!!! When you take it off of him, he reaches for it. I guess it has become some sort of security for him ??? It might itch a little too, but he doesn't seem to complain. His head is growing, which is a wonderful thing! He gets little "knots" on his head and when these appear, the Ortotist then cuts a hole in the helmet to allow for the growth. I still don't fully understand it, but it is working, so I will not question the process. I met a couple of other mothers in the rehab center who's babies also had helmets and one little boy had the entire top part of his cut out! That is GOOD progress, they say. We will get there. There is already a great change in the shape of Kadin's head. He looks WONDERFUL with it off. Kids everywhere look at it and just love it. Some even think it's a football helmet, especially at the games! I will post a pic of the helmet, but for blogging purposes, it has firetrucks and firefighters on it ... even a Dalmation puppy!!! He is even starting to play games with it. While he is sitting in his high chair, he leans his head down til the helmet crashes on the tray part of the chair. It's funny ... We will have to ween him off of it when it's time to not have it anymore because I am afraid he will be a monster without it. He sleeps in it and everything! He is doing wonderful with it and we can see the shift in his skull too.... It is awesome!!!

Kadin is scheduled for his next surgery on October 14th at Cook Children's Medical Center. This is the hypospadius (sp) and his circumcision. It is expected to be out-patient, but he has CLD and will be intubated for this surgery, so we just have to see how things go. We will be traveling to FW the night before and should, if everything goes as planned, be returning home that afternoon at some point. The Dr. (surgeon) told us that he will be swollen and bruised for about six weeks, so I am not looking forward to diaper changes and things of that nature for that month and a half! Poor baby ... I pray he does well and gets thru it ok. He has been thru so much and we feel this is one of the last things to conquer now! I appreciate all your prayers for this upcoming time in our lives.

As far as the development stages Kadin is going thru, he is doing soooooo much these days. He is able to roll over and over and over and over. He can sit with some support, but he is not sitting on his own at this point. He is not crawling either, but he is getting up on his knees and pushing/scooting himself. He babbles all the time and laughs so heartily! We just crack up when he laughs. It is from his innermost parts that the laugh comes all the way up!!! He sleeps thru the night still and wakes up so happy.

Kadin is enjoying real foods these days too ... mashed taters, mac and cheese, but he still loves his fruits and veggies! His daddy does not like veggies at all, lol .... so I don't let him feed him, ha ha ha. If I did, it would be bananas and applesauce all the time! Bless his heart ... he is such a sweet daddy and takes care of our son ALL the time. He and I help each other so much and sometimes we argue over who is going to get the bottle or change the diapers!!! Such nice things to argue about, but that's ok ... it's the only things we argue over, thank GOD! :) I am so blessed to have Danny as my husband...

Ok, so the helmet ... we go for a check up again the first part of October. I think Kadin is doing so well that they scheduled us out further than normal and said to just call if he had issues. So far so good ... no issues to worry with to this point, so we will just wait it out and see how things are the first part of October!

I just wanted to give a quick update since I don't do it near as much as I used to. LIFE happened once we got home and hasn't slowed down since! :) I will try to do better ... thanks for still keeping up with us. Drop us a line to let us know you have been here or look us up on Facebook (my email there is redlady88@yahoo.com)

Be blessed,
Leslie

Encouraged

2009-09-13T00:28:00.003-05:00

Sometimes life can beat you down. Sometimes you think you can't go on much further. My faith has always been my foundation for everything that I do. No, I have not been "perfect". I only know ONE who is perfect. He is my example, and I have often failed him. I don't feel worthy of good things being said about me ... so tonight, when I was reading some comments from a very sweet friend regarding what she thought about me and my family and the love we exhibit, I was humbled, and reminded that the kind of love she showed me is the kind we should show everyone. You see ... she and her husband walked the almost exact same path that Danny and I (and our children) walked for 4-5 months, and in many ways, we are still walking the same path. Our preemie babies were born within a month of each other, none of us were prepared for what awaited us, that's for sure. So tonight ... when I was reminded once again that there was someone out there that knows what we went thru, that knows what it takes to make it thru that uncertain time in life with a preemie (micro-preemie), that thinks as much of our family as we think of theirs, I was encouraged that there are still good and sweet people left in this world, who don't compliment you to get something out of you or to just blow sunshine up your backside ... they tell you these things because it's what's in their heart ... I pray special blessings for Hilarie for making my night and renewing my faith that things really will be ok in this life ....

I Believe We Can Handle Anything

2009-08-08T23:37:00.002-05:00

We finally had our CT scan and appt with Dr. Jeter on July 28th. The scan went very quickly, it took all of about 5 minutes maybe. Kadin was very cooperative, too. I took ALL the kids, since it was only the day after Robbi returned from her summer with her dad. I think there were 7 of us on the trip that day. Very busy ... but anyway, we had the scan done and then went to visit with the cranial/facial surgeon. The wait in his office was FOREVER! It was unbelievable. I could write a very long "short" story on my wait in the waiting room and the 3 precious little children that were waiting with their mommy (bless the mommy's heart!!!!) Anyway, that Dr. said that he wanted to refer us to West TX Rehab and go ahead and see about Kadin being fitted for a cranial helmet. He put it all in perspective for me, saying that Kadin's head could continue to reshape itself, but then again, it could not ... it's a chance we would be taking by not going ahead and having him wear a helmet for a month or two. So I called and made an appt with the Rehab and we had the scan for that on August 3rd. Danny was home from work in time to go with us and to be there with any questions. If anyone has ever had to be without your spouse for any length of time so they can work, you know how much better it is when you have 2 parents taking care of the child instead of just one! I was and am so grateful that he was able to make it home to go to this with us. So, in short ... it should be about another week and we will have a helmet for Kadin. We don't know how long he will have to wear it, we will go back every week I think and have it tightened and re-fitted according to his growth. I am apprehensive because I don't want him to hate it, but the Dr. at the Rehab did tell us that the problems usually lie with the parents and the grandparents, and to take comfort in knowing that the children adapt fairly quickly to their change! He will be wearing it 23 hours out of the day and having it off only one hour for me to wash his head and clean the helmet. Summer is not going to be his friend, I'm thinking .... Guess we will see! We are excited to see the helmet though, it is supposed to be firetrucks! :)

After our visit was complete there, we decided to go to my OB clinic and see if, by chance, my OB Dr. was in her office. I had kept in touch with her some during the course of our stay in FW, but had not contacted her much since we returned home. Life just kinda got very busy ... It is safe to say that I absolutely adore my OB doc ... she is/was amazing to me in my desperate time of need. Frankly, she was amazing to me the entire time that I was in her care. I was sick quite a bit with Kadin, and she did everything she could to make sure that I was comfortable, healed, and progressing like I needed to be. Honestly, I could go on and on and on for days about her and what she means to me and my family. She saved not only my life, but the life of our child when she shipped us to FW on October 28, 2008. I remember vividly her sitting on the edge of my bed in labor and delivery, teary-eyed at what was unfolding before her eyes, and believing for the best for me, our baby, and our family. Anyway ... we made it to her office and asked the receptionist if she was in and if she had a minute to visit. I wish I had a camera the minute that we walked around the corner. Her eyes lit up, her draw hit the floor, she was very surprised, but quickly took Kadin from Danny's arms and marveled at God's miracle!!! The few minutes that we spent catching up on what we went thru will forever remain precious to us ... you just don't find Dr.'s like her any more. Even all of her staff remember us and shared in the joy of having such a precious baby boy. She still has Kadin's picture up on her baby board, the pic of him when he was just about 7 days old. It is hard to look at now sometimes. It is amazing how your body adapts to such trying circumstances just so you can make it thru them! That's truly what happened in our situation. I could never see Kadin as the frail, threatened, very critically ill baby that he was ..... I'm not really quite sure why I didn't, but I didn't see it until much later, when the odds had turned in his favor. So anyway, we were glad that we stopped by the OB's office and had that mini-reunion with her and her staff. She is such a blessing, and anyone that works for her is blessed.

I got a call the other day that I am a little concerned about but only maybe because I don't quite understand it all, but our Pediatrician said that he was going to refer us to a neurologist in FW to have Kadin checked out thoroughly. He said that his CT scan did not come back completely "normal" and that it indicated that he had some enlarged ventricles, which could be perfectly "normal" in a micro-preemie such as Kadin, or it could be a cause for concern. Either way, we are not able to get in to the Dr. in FW until around December probably. I have done a little research trying to understand what can happen with enlarged ventricles, and I just get frustrated. I know I shouldn't do that if the Dr. is saying that right now there is really no reason for concern, just something that need to monitor for now, but it is still one of those things where I would like to know what is going on and I just don't. All I heard him say was "shunt" waa waa waa waa and a few other words that I can't even bring myself to type and I refuse to accept. Kadin's progress and development is amazing, and it's all because of GOD, and I know he is going to be just fine ... I will still do the smart thing and have him checked out but I will not get down about any of it, especially because of how we see him interact and behave with us. There is nothing abnormal about the way that he interacts with us or behaves. He is truly a miracle and I will not give a foothold to anything that will tear that apart!!! Don't get me wrong, I adore our Pediatrician, and I respect his professionalism and his expertise, and that is why I will go along with his referral to FW to have things monitored. I just won't accept that this is anything except routine for what micro-preemies go thru ... especially because Kadin had six brain scans while he was still in the NICU and they all came back NEGATIVE for brain bleeds, which we understood was also to be a miracle in itself !!! YAY GOD !!!

He had his 9 month check up today and it was fantastic! He is now weighing 14 pounds 8 ounces, he is 25.5 inches long and is doing very well!!!!! We are also looking at scheduling an appt with his pediatric surgeon to have the one last surgery that he needs to be finished with all that. We also scheduled is one year check up while we were there and it is so hard to believe that in just 3 short months, Kadin will be one year old. We will celebrate November 3 ... February 23 ... and February 28th! You think I'm kidding ... I'm not, but at the friendly advice of my OB Doc, no, we will not make a brat out of the miracle baby !!!! ha ha ha ha

Thanks for sharing in our latest journey with Kadin. I know I have probably left out a bunch in this update, but it is late and I'm tired ... if I remember anything else I will add it. Going to bed now, long day tomorrow also. We will be retrieving our car from my husband's "job" since it's been sitting there for almost a month now !!!

G'night...
Leslie

What? An update finally?

2009-07-26T11:57:00.002-05:00

Yes I know. I am horrible at updating anymore, but that is really a good sign if you think about it. Life is in full swing around the Kirkpatrick household and we couldn't be happier! I actually can't believe it has been 2 months tomorrow since I have updated anything. That's so hard to imagine it has been that long and it only seems like yesterday since I wrote the latest entry.

We did have another appt in FW in June. We went to see the eye Dr. and everything there checked out just fine. They said Kadin was a bit far-sighted, but that it was normal for a baby his age. Dr. Norman also said that he couldn't tell anything had been a problem with Kadin and that he truly is a miracle child! Yeah, just what I wanna hear !!!!! Every time we go to the Dr. we realize more and more just how blessed we are and have been with Kadin's progress in his life. We encounter so many families that have seen sooooo much with their children already. Don't get me wrong ... we have seen a lot of turmoil and troubles with Kadin, but it seems like it is nothing compared to what we learn about the struggle of other family's with their babies. We are extremely blessed!!!

Kadin is doing so well. He is still in occupational therapy but even the therapists say that he is more like a 7 month old (he is 8 months old) than the adjusted 4 months that he "should be" for being so early. He is pushing 14 pounds right now so he is healthy at that ... He loves his bottle and is reaching for it now, will hold it for just a few seconds but more like is just touching it while he feeds. He loves apples and cereal, bananas and cereal, and just like his daddy, is NOT much on the veggies! He is not sitting up unassisted or anything like that, but we are working on it and frankly, as long as he is taking it at his own pace, I'm not worried about it ... he is still progressing every day.

Kadin is also very much a happy baby. He isn't smiling at us because we smile at him, he is smiling because he is happy. He laughs and giggles, babbles all the time ... he LOVES his voice. He loves to make noise. For awhile I was concerned that he wasn't crying when he was hungry, or crying for any reason, but that has all changed, lol ... HE CRIES! I think it was just a matter of discovery in that area, but he's doing just fine at letting me know his needs and his disapprovals!

Finally ... he is rolling over and getting on his stomach, holding his head up, and looking all around. When he first started being on his stomach (of course) he could not hold his head up, we were working with certain neck and back muscles to strengthen him because he favored one side a LOT. It has misshapen his head too and it was feared he would have to have a special helmet to reshape it. Our appt for that CT scan and visit to the specialist is scheduled for July 28th, but the therapist that just came to the house said that according to her experiences, Kadin's head is not meeting the requirements to be fitted with a helmet. I have noticed that in the past month, his head has continued to take on a new shape (a normal one!) the more that he is not laying on his back and turning his head to that favored side. He now likes to lay on his side and flip flop around in the bed when he sleeps, so his head is getting fair coverage on all sides !!! YAY! Guess we will see .....

I'm concerned about the way that he vomits sometimes during a feed. It's as if he gets choked and out it comes. Even in Wal Mart ... all over himself and all over me. It's ok ... he's not in the hospital hooked up to tubes and machines, so momma can handle ANYTHING that he has going on! I just want to make sure there isn't anything going on with his little tummy that causes him to give his feeds back ...

It is so hard for me to believe that Kadin is almost 9 months old. It just seems like yesterday we came home with him, at 4 months old (newborn size!). Life has been so full and busy around here that the time really has passed rather quickly. For awhile, my mind had been preoccupied with several other things and I feel like I was just going thru the motions of some aspects of life, but with my children, I soaked in every moment I could, and still do. I am so proud of the progess that Kadin has made and how my older children have been so instrumental in his development. They carry him around, particularly the 7 year old, my daughter doesn't let him cry, so anytime he is a little fussy (even when I have put him down) she is right there picking him up to soothe him ... and my oldest son, who hasn't really spent much time with Kadin except the last few weeks, has been very helpful without me even asking for his assistance ... he will take Kadin to the couch to "watch tv with his big bubba" and has even fed him a bottle or two. Awesome awesome children I have ... I am so very blessed. Now if we could only get my husband a local job so that he could be here also ... family is just not complete without Daddy!

I just wanted to update for a few minutes since it has been so long since I have done so. I am going to add a couple of pictures on the site, so I hope you enjoy them. If you are on myspace or facebook and reading this, the pics are actually on my blogger acct so you may have to browse to that site to see them ... it is http://kadinsjourney.blogspot.com in case you don't have it.

I will try to blog more often and add more pictures ... Blessings to all ...

Leslie

Kadin's Visit to FW (written 05/27/09)

2009-05-28T09:30:00.000-05:00

We are on our way home right now. Kadin's appt with his lung doctor went well. She gave us a schedule awhile back to start weening him off the oxygen and we started that when they gave it to us. Shortly after we started, Kadin got sick. He was sick for a couple of weeks so we had to keep the oxygen on him during that time. We started all over on the weening after that. They had given us a target sat that they wanted Kadin to stay above and he always stays above it unless he has the monitor on and is kicking his feet. (since the probe goes on his foot) Today his pulmonologist told us she is writing an order to have the oxygen company come pick up their equipment since he is doing so well. This doesn't mean that he doesn't need to be watched. We will still need to keep a close eye on him all the time. She also said if he needs steroids between now and his next visit with her in August then we will have to look at getting inhalant steroids to keep. Not sure why, but im not worried about it either, mainly because the only time he needed them he caught a cold from one of the kids ... and since they wont be in school, chances are minimal that they will be sick this summer. So, YAY! We will see how it goes.

Before our appt this afternoon, we went to Harris Methodist to the NICU to see if we could see any of our little angels working there ... they announced we were there and within just a minute one of our favorite RT's came running out! It was awesome to see her again and all the nurses that we saw too. We also saw an off duty secretary that we absolutely ADORED and our favorite tech, too!!! The only sad part about our trip was we had planned originally to go ahead and go to Danny's daughter's graduation (KAYLIE) in Texarkana but that was made impossible since our bank acct got seized ... thank GOD for health insurance for Kadin since they pay mileage for us to go back and forth to his appointments or we wouldnt have been able to go to FW either!

Thanks for all your prayers and well wishes for Kadin and his progress ... I still can't grasp sometimes just what a little miracle he really is.

Kadin Rolls Over

2009-05-23T12:43:00.002-05:00

Seriously? Already? Yes, he did it today and we were all amazed !!!

We had him laying on the office room floor, on a huge quilt. He was kinda fussin', nothing was really pacifying him, and then we realized it seemed as if he was just babbling.

My husband laid in the floor with him and was talking to him. We had noticed for a week or so that he was "throwing" himself, sorta kinda kicking his feet, arching his back, and pushing off to one side. He started doing that while laying on the quilt and then my husband said "He just rolled over!!!" I was in disbelief ... I am so proud!

Danny rolled Kadin back over onto his back to see if he would do it again, and YEP! He did ... this time he left him on his tummy (he was in a position that the occupational therapists have recommended we attempt to get and keep him in) so we just left him there for a few minutes until he kicked his feet enough that he rolled himself back over to his tummy.

Amazing! I am just so proud of Kadin!!! Wish I had video, since youtube is now one of my favorite sites!!

General update on Kadin

2009-05-21T16:45:00.000-05:00

I know, it's been a LONG time since I have updated on our little miracle ... my bad, but we have been so busy living life here it is unbelievable!

First of all, let me say what a blessing this baby is. He is the most precious thing ever and I don't say that just because I am his mommy, I say that because of what a gift he is to all of us. I watch his interactions with his daddy and I melt. I watch him look at his big sister and brother and I melt. I see him recognize his Nanny and my sister, Ti, and my eyes water .... you know what I mean?

He wasn't supposed to make it. He wasn't supposed to be here. He fought tooth and nail from the minute he was born to make it to where he is today and I am so thankful to God for being able to have him. He is with me almost 24/7 and my thoughts are constantly toward him in what he might need, or is he breathing, or is his head turned the right way, etc .... When he's sleeping I check on him all the time. What mother doesn't worry about their child? I just had some extra worries to go along with this baby.

Our pulmonologist suggested we start trying to wean him off the oxygen. About the time we started, he got sick. The dr. thinks it was a little cold. He was wheezing and had rattles in his chest ... really scared me! But I gave him his meds, antibiotics, steroids, and breathing treatments, and today he is all good!

I don't know what he weighs exactly, but at the Dr.'s office on April 29 he weighed 11 pounds and 4 ounces. I am sure he has gained since then. He is outgrowing all the clothes we have for him! He is just amazing! Have I said that already ??? :)

I am giving him rice cereal now. He doesn't quite seem to like it and is learning how to move it to the back of his mouth to swallow and sometimes he flat refuses to eat it, but that's ok .... I talked to his pediatrician and expressed my concerns for him drinking half a bottle and pushing it away, but still grunting and groaning like he was hungry, not to mention trying to eat his fists. (which I think is a darling instinct that almost all babies exhibit when they are hungry!) I was worried because I would feel like he should be hungry but he would not ever cry. He doesn't cry very often, but when he does, he means it. So, the Dr.'s office told me to try the cereal to see if keeping his tummy heavy for a little longer helped, and wow ... He is SLEEPING for a good 3 hours during naps when before we started cereal he would just nap for about half an hour and be back up acting hungry again! *sigh, I was exhausted!*

Kadin is sleeping thru the night and has for about the last month. He usually turns in around 10:30 after his last bottle, and he is very good about sleeping until about 7:30 every morning! It's like clockwork, you can count on him being awake then! We are putting the oxygen on him only at night and his pulse-ox monitor too because most of the time he will work the cannula around to give his ear some oxygen too. If he sats good thru the night, we never even know anything, but occassionally it seems he gets into a deep sleep and breaths are shallow and then his monitor will go off ... or then again, we have the times he wakes up a little earlier and kicks his feet wildly and his monitor goes off WITH EVERY MOVE, ha ha ha ha ha.

I have a video I wanted to post but it has me making a fool of myself in it to make Kadin laugh. It's hilarious. Maybe I will upload it to youtube and let you all see it. he is so cute in it ... smiling and laughing. He does a lot of that lately ... just brings tears to my eyes !!!!

We have an appointment in FW one week from today, on the 27th. We were going to go to that and then travel on to Texarkana for Danny's daughter's graduation, but since our bank account got wiped out, the extra travel will not be possible ... which sucks really really bad. She wanted us there and we wanted to be there, but it isn't going to happen. And I hate it. Anyway, we MUST go to his appointment and his insurance helps us with the travel and the motel room, otherwise, that would be a big problem also. I will update on him after that appointment and try to post some more current pictures as well !!

That Blasted Cannula!

2009-04-14T10:13:00.002-05:00

Yeah, I'm put out with it, lol. We can't get it to stay on unless we put tons of tape on the poor baby. It stinks. I mean, he's adorable, and with all that tape on him, well, his cuteness is being hidden!

The other morning, I woke up because he was wiggling around. I figured it was time to feed him. When I looked at him, he wasn't quite awake yet, as he usually is. So I watched him for a few minutes and figured I would go ahead and get him up. Maybe he was uncomfortable, maybe he needed a diaper change ... and when I got a better look at him, that blasted cannula was in his ear! Oh yeah, his ear was getting plenty of oxygen ... No telling how long it had been like that, but he was hooked up to the pulse ox and it never went off. I watched him for about 20 minutes with the cannula around his ear and he was satting in the high 90's and even at 100. Okay ... well, Dr. Schultz did say that if it came off, just give it a little bit and see how he does ...

So, with him doing so well with it in his ear, we decided to not worry about it fitting right in his nose all day long. It came out several times and finally my husband decided to just take it off and see how he does. We left the pulse ox on and watched him all day and he did wonderful. Now ... he has been on the oxygen ever since because we aren't sure exactly what it was Dr. Schultz wanted us to do as far as weening him. She did say when we were in her office that, at the time of March 23, she would give it another couple of weeks before we tried him off the oxygen. So ... the miracle of it all is ... he went 12 hours Sunday without his oxygen. He never changed colors, he never seemed to labor in his breathing. He seemed, overall, much happier just to have that thing off his face! But like I said ... he's had it on ever since Sunday evening because we aren't sure what we are really supposed to do.

So, we're just waiting. I pray he is ready. He seems to be doing ssooo well. He is growing like a bad weed. He gets chunkier every single day! And more alert, and he stays awake for much longer periods of time. And LAST NIGHT ... He slept from 11PM to 7AM and WOWEEE! I enjoyed sleeping from about 1 to 7 .... very nice!

I have some pictures of him from Easter that I will add when I get them off the camera. It's just a matter of doing it. I'm taking a break from working right now because I work remotely and needed someone to remap the drive for me ... since it's done now, I will go finish what I was doing and then cook some lunch for my husband!

Oh ... I almost forgot, we have selections for his baby shower at Wal-Mart and Target. You can look them up online or go to the store. I think you need to know my first and last name in order to look them up online, but it's a neat set up if you can't get to a store! If you have trouble or questions, give me a shout and I'll try to help ... Thanks! Looking forward to seeing you all on May 3rd at Kadin's Shower !!! YAY !!!

Leslie

A Baby Shower Honoring KADIN!

2009-04-09T21:57:00.002-05:00

Yes, I am so excited ... I was notified the other day that there will be a baby shower for Kadin on May 3 at 2PM. There are something like 12 hostessess - I am so honored!!!! I can't wait ... It will be so much fun! I am going this weekend to make selections at Wal-Mart and Target, so that should be a lot of fun.

There is an open invitation for anyone that wants to come - I believe it is going to be in our local newspaper. I am just excited about seeing everyone that I haven't seen in a long time. Since we have been home, I have spent the majority of my time in the house with the baby and have only gotten out for ball practices or games and occassionally to go to the store, but nothing else. It will be nice to visit with everyone!

Just wanted to put this here for my friends and family that read that I have not gotten to tell just yet.... Hope to see you all there !!!

This baby is .... SPOILED!

2009-04-09T19:11:00.002-05:00

He definitely has come into his likes and dislikes! He knows that anyone in our family is more than ready to pick him up and hold him at a moment's cry ... yes, no kidding, this child is held and passed around more than he probably should be, but we just can't help it and probably won't stop! I'm not complaining at all. I am learning to work on my computer with him in my lap, feed him while I answer a text message, but I do lay him down for making bottles or cooking a meal! I draw the line at putting him in one of those little front-side baby holders ... although I did try it, I realized quickly it just wasn't going to work. So I threw that thing in a box.

Kadin is staying awake for longer periods of time and is now taking in more formula than he was just 2 days ago. He slept for a full six hours last night and he is (adjusted) just six weeks old. I hope by the end of his 2 months, he will be sleeping like that regularly. It will be nice, but then again, I kinda liked getting up at 3am and realizing I could sleep for another 4 hours as soon as I fed him and put him back down!

Kadin is smiling a lot more too, except the last couple of days he hasn't really. He's just been clingy to me, wanting to be held, crying if I even put him down to make him a bottle, except right now, he is laying in this playpen beside me and relaxing - not sleeping, just chilling.

This cannula is about to drive me MAD. It will NOT stay in his nose. It slips thru the tape or the little circles and ends up trying to give his eyeball or his ear some not-so-much-needed oxygen! He turns his head so much when he's laying down or in the swing that it just moves it and I don't know how to keep it still. When I am holding him, he likes to rub his face or his nose in my shoulder or my shirt and that moves it too ... it's like his nose itches and he is scratching it with my shirt. It's probably that cannual getting on his nerves ... poor baby, I can't wait til it is not needed anymore.

Guess I'm gonna go see if Kadin wants to visit his bed ... mine is calling my name, maybe I can fake him out!!!

Night!!!

Six Weeks Old

2009-04-07T15:25:00.002-05:00

That calculation seems a little strange since we have been with Kadin since November 3, 2008. However, for 16 weeks of his life, he rightfully should have still been in my tummy. It's hard to believe that all this began 22 weeks ago. We have to adjust for his age beginning around his due date, which makes him now about six weeks old. And wow, how quickly he is growing!

He is beginning to stay awake for longer periods of time now and "babble" a little bit. He gets the biggest, silliest, most tickled smiles on his face when he has his big sissy and big bubba talking to him. And you know THAT makes them feel on cloud nine every single time! It blesses me and Danny also to see Kadin react to his siblings that way. When someone talks to him, he gets all wiggly and opens his mouth as if he wants to say something - you can tell he is excited that someone is paying him attention .... as if mommy holding him throughout the day and night isn't enough, lol .... he's an attention hog, for sure, but frankly, we don't mind a bit.

We have developed quite a pattern and thankfully!!! We lay him down for the night around 11 after his bottle and he awakes again around 3 for another feeding and back down til approximately 7. Sometimes we get off schedule by half an hour or whatever, but who cares when I am getting about six or seven hours of sleep a night, even if there is an intermission ... I enjoy holding him in the middle of the night anyway.

He is traveling better these days also. Granted, we aren't going anywhere long distance, but he seems to really like getting out if even for a little bit. We did take him to a baseball game last week and he slept the entire time! I am a firm believer in introducing the "sounds" of it all tho ... that way, he will recognize it all later and not freak out (like Dakota used to do at basketball games when that big nasty mean buZZZZZZZZZZZZZZZZZer would go off).

We have appointments in May and June as it stands. At that time, we will visit the NICU again for the first time since we departed for home on Feb. 28, 2009. I pray we get to see all those that we came to love so dearly...

Speaking of those that we love ... I can't get Dr. Porter and Dr. McGuirk off my mind. I wish there had been some way to get their information (email) so that we could keep in touch. I know they were so proud of Kadin before they both ceased to being his primary Dr. Kadin really took off in his progress right as Dr. Porter left the unit. I left him this URL so that he could visit if he never thought about it and I pray that he does ... so if you are reading this Dr. Porter, know that my family is eternally grateful to you for all that you did for our miracle child and I know you would be so proud to see him today. And Dr. McGuirk ... we appreciate your willingness to push Kadin a little bit and challenge him in his growth! We miss you all, the nurses, the secretaries, the respiratory therapists, the techs ... EVERYONE. We even miss that cafeteria, lol ...... oh, and Starbucks. Sheesh.

It is great to be home though and watch our little baby growing. He has dealth with some allergy issues, but we all have. The climate here is HORRIBLE and for example, today I have done nothing but sneeze and blow my nose! I am excitedly awaiting what's next in Kadin's growth ...

ECI has come to the house twice and is scheduled to come again around the middle of the month. It will be for occupational therapy and I'm excited about that. Kadin's little head seems to be misshapen a little bit because he truly favors one side and hates to lay on the other side ... we work on it but you know, he's stubborn - which has gotten him this far in the first place, so I'm not gonna gripe!

Until next time ......

Allergy Issues Already

2009-03-30T13:35:00.002-05:00

We have been home approximately 4 weeks and we are now already experiencing allergy issues with Kadin. I called his Dr. and am giving him benedryl now every 4 hours to treat the symptoms, but have to watch him for signs of infection, i.e. tugging of ears, crankiness, not eating or wet diapers, etc ...

I laughed on the phone with the nurse earlier because she had told me to give him children's benedryl and I said ok, I have some. When I checked the bottle, it said DO NOT GIVE for children under 2. Above that, in the children 2-4 it instructed to consult a physician for dispensing. Alright, so in my mind I needed a different medication for him. The nurse assured me that he could have it cuz the Dr. said so ... and that's where I laughed ... I'm 39 years old with my 4th child and STILL asking! lol I justified it by saying I didn't wanna poison him! And it's true ... but mostly because I am scared to death still with a preemie who's adjusted age is only 5 weeks.

I suctioned him out all night and got virtually NO SLEEP. Not good for me but even worse for Kadin since he didn't sleep much. At 8 this morning, I put him next to me in the bed and he slept solid for 2.5 hours ... until he woke up because he couldn't breathe. He is now sitting semi-upright in his swing to help with the drainage. And me ... with my 7 year old home early today (release at noon for track meet that our daughter is in!) wanting to help him color and play video games and this and that, I'm running low on energy! :) Not to even mention trying to work for my dad in between all of that and pay my own bills that have to be taken care of today ....

On a brighter note, my husband came home today telling me that he had a message for me. He said his niece had contacted him and told him that I needed to pick a date in April (other than one weekend she designated) for a baby shower she is putting together. She said to tell me that my "favorite niece" was getting the ball rolling, lol .... and I needed to make her a list of my friends that wanted to help with it. So, I'm really excited about that .... And Kadin will be bigger and able to handle being at the big par-tay !!!

Guess I better get more things done around here ... Robbi is running after 5 today and Kota has TWO ball games tonight - back to back - and I have to get everything ready for all of that as well. I have TONS of pictures of the ball games that we played the other day at the season opener, so I'll be posting those also when I can!

Have a great day!

Our 10 pound 2 ounce baby!

2009-03-24T13:49:00.002-05:00

He just keeps getting bigger and bigger, stronger and stronger...

We traveled to FW on Sunday so that we could be there for his appointments on Monday. It was FULL day with having 3 appointments to make it attend. We barely had enough time to grab lunch.

The first appointment was with the eye specialist, Dr. Norman. Great guy, by the way. He always welcomes us with a handshake and a "Great to see you" ... They prepared Kadin's eyes before he came in with some eye drops to dilate the eyes, so when Dr. Norman came in, I exited. I saw a little bit of the eye exam while Kadin was still in the hospital and I really don't care to watch those. I could hear him screaming down the hallway but when it was over I went in and held him. Dr. Norman was very optimistic in his assessment of Kadin's eyes and how they have progressed. He had the laser surgery in the left eye and he said it has totally regressed in the "wrong" way that it was growing and is not growing properly and that his right eye is completely matured. His exact words were he expected him to have no vision problems ... perfect vision - unless he gets the genes we all got that have required corrective lenses in grade school. Other than that ... no problems! YAY!

The second stop we made was to the pulmonologist, Dr. Schultz ... She is also great. The nurse asked us most of the questions about how his oxygen is etc. and how often he is desatting ... long story short, we went for an xray since he hasn't had one after being released from the hospital. Dr. Schultz said that you would never know he was a 24-weeker, his lungs look perfect and are growing well! YAY AGAIN! She said we could take off the monitors, but if we are asleep or he is napping in another room we need to have at least one of the monitors on him. We have opted to leave the pulse oximeter on him instead of that big old bulky band around his chest. He seems to really like that thing being gone! He is doing well with the oxygen and will require it for a little while longer ...

As far as visiting the pediatric surgeon, everything went well there. He checked his hernia sites and they look wonderful. He will need to be circumsized in about 4 months or so and we will return to him for that and another small minor surgery in the area. It all looks wonderful tho, he said, and we're on the right road!

We made it home around 2AM. It was a long drive. It is hard to travel with Kadin when he needs to stop every little while and be taken out of the carseat to stretch, rest, be changed or fed ... whatever. So our trip took us longer than it normally would and we are exhausted today, but doing well.

When we were in the motel room in FW Sunday night, I made Kadin a bottle and put him in the feeding position so I could feed him. He was looking right at me ... made my tummy flip flop, ya know? But the sweet thing is I put the bottle in front of his face and he looked at it, and then I said "What is that Kadin?" and he GRINNED really really big !!!!! We repeated this a few times and every time he grinned really big. It was so sweet .... I tried it again today with my sister here and yep, he smiled REALLY big for me ... he knows that it's grocery time, lol. And he took it ALL!

So we are most pleased with his progress at this point. Kadin is technically almost 5 months old, but his adjusted age is about 4 weeks. He is a newborn really and developmentally, that is how we have to look at it. It's not difficult, and actually, if we tried to make him 5 months old we would only be frustrated. So to us, his adjusted age is all that matters ... they say by the time children hit 2 years of age, they are "caught up" so to speak with their peers. Guess we will see.

We are all loving having this baby here with us. He makes our worlds go around. The kids are fantastic with him. They all call him their PRINCE. (may have mentioned that before) Robbi will just pick him up without even asking. She loves to take care of him and love on him. She is very helpful and at times, I take the opportunity to let her know that "this is what kissing gets you!" ha ha ha ha And when it's YOURS ... it's serious time. She realizes what I mean and says "EEWWWW!" Thank goodness ....

Kota is so in love with his baby brother. He just beams when he is with him. He loves to hold him and feed him. He hasn't asked to help change him yet, lol ... but everything else he is more than happy to help with, even playing with the toys, etc. Kadin is the first one Kota wants to see in the morning and the last one at night ... He is already the best big bubba.

And then there's JT ... He came to visit us this past week but had to stay away from Kadin for the most part because he had strep throat. Of course, we didn't know he had that when he came, we just knew he wasn't feeling very well and he rested a lot while he was here, but then he got to feeling really horrible so we got him to the Dr. and got some tests done and BAM! Strep throat ... Bless his heart, he was so worried that he was going to give it to Kadin, but I called the pediatrician and they said it is very uncommon for babies to get it because you basically have to swap spit or some bodily fluid to get it and he had never even gotten close enough to Kadin's face to do so. He is also the best big bubba ... I think Kota learned from him because he is wonderful with Kota. JT wanted to badly to hold Kadin so I did put him in his arms for about 20 seconds but JT refused to breathe the whole time so I then took him back, lol .... He apologized so many times for not feeling well the entire time he was here, but it didn't make a difference to me, I want my children with me at all times, not just the good times. We so enjoyed him being here with us.

So I guess that's it until I can make time to blog again. As you may have realized, times for blogging are coming fewer and further in between! I pray you are all well and enjoying our new Spring that is upon us!

So Worth Reading!

2009-03-20T08:55:00.003-05:00

I found this on Kristen's site and she found it on another lady's site ... for those of you who don't know Kirsten, she is AMAZING! She and her husband Joshua have a special needs son, Layne, who is just PRECIOUS! I just could never say enough about them and what wonderful parents they are. Anyway, here's the entry she had, and even tho it is unknown at this time whether or not Kadin will have any special needs, it still touched my heart ..... I pray it touches yours.

Many of you I have never even met face to face, but I've searched you out every day.I've looked for you on the Internet, on playgrounds and in grocery stores.I've become an expert at identifying you.You are well worn.You are stronger than you ever wanted to be.Your words ring experience, experience you culled with your very heart and soul.You are compassionate beyond the expectations of this world.You are my "sisters."Yes, you and I, my friend, are sisters in a sorority.A very elite sorority.We are special.Just like any other sorority, we were chosen to be members.Some of us were invited to join immediately, some not for months or even years.Some of us even tried to refuse membership, but to no avail.We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms and during ultrasounds.We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films and heart surgeries.All of us have one thing in common.One day things were fine.We were pregnant or we had just given birth or we were nursing our newborn or we were playing with our toddler.Yes, one minute everything was fine.Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.Something wasn't quite right.Then we found ourselves mothers of children with special needs.We are united, we sisters, regardless of the diversity of our children's special needs.Some of our children undergo chemotherapy.Some need respirators and ventilators.Some are unable to talk, some are unable to walk.Some eat through feeding tubes.Some live in a different world.We do not discriminate against those mothers whose children's needs are not as "special" as our child's.We have mutual respect and empathy for all the women who walk in our shoes.We are knowledgeable.We have educated ourselves with whatever materials we could find.We know "the" specialists in the field.We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments.We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them.Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.We have taken on our insurance companies and school boards to get what our children need to survive and to flourish.We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy.We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects.We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.We have learned to deal with the rest of the world, even if that means walking away from it.We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line.We have tolerated inane suggestions and home remedies from well-meaning strangers.We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.We have learned that many of our closest friends can't understand what it's like to be in our sorority and don't even want to try.We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother."We keep them by our bedside and read and reread them during our toughest hours.We have coped with holidays.We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween and we have found ways to help our deaf children form the words, "trick or treat."We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas.We have painted a canvas of lights and a blazing Yule log with our words for our blind children.We have pureed turkey on Thanksgiving.We have bought white chocolate bunnies for Easter.And all the while, we have tried to create a festive atmosphere for the rest of our family.We've gotten up every morning since our journey began wondering how we'd make it through another day and gone to bed every evening not sure how we did it.We've mourned the fact that we never got to relax and sip red wine in Italy.We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent.And we've mourned because we left for the airport without most of the things we needed for the trip.But we, sisters, we keep the faith always.We never stop believing.Our love for our special children and our belief in all that they will achieve in life knows no bounds.We dream of them scoring touchdowns and extra points and home runs.We visualize them running sprints and marathons.We dream of them planting vegetable seeds, riding horses and chopping down trees.We hear their angelic voices singing Christmas carols.We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall.We are amazed at the grace of their pirouettes.We never, never stop believing in all they will accomplish as they pass through this world.But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.By Maureen K. Higgins

Home for a little over 2 weeks

2009-03-15T16:10:00.002-05:00

I have not had much time to blog with us being home. Things are so busy lately. Good thing tho, this past week was Spring Break and we kinda had some leisure time - didn't have to get up early in the morning and take the kids to school, we fed Kadin when he wanted and slept when he did. It has been great, however, tomorrow begins a new school week for the kids and we must be on a more regular schedule starting ... uumm, tonight!

Kadin has been doing VERY VERY WELL since we have been home. He has not had any episodes of not breathing or anything of the kind. We have monitored him very closely and until today, we kept both the apnea monitor and the pulse oximeter on him. Any time he would move his feet his pulse ox would set the alarm off - this gets very annoying in the middle of the night. His pediatrician in Angelo did tell us that we did not have to have the pulse ox on him during the day when we are awake, it would be better to have it on him at night when we are asleep. So ok, today we were finally comfortable enough with how he has been doing to take that off of his foot and just rely on how he looks and sounds. So far, he has loved it ... we noticed that when he would be laying on a blanket kicking and playing around, he would not move the foot that had the pulse ox probe on it. He would kick the other one, but it was like his foot was chained down with that probe on it. Now, he has a kick-fest and it's great to see him so active.

He has appointments in FW on the 23rd. We are not looking forward to the travel, but will be excited to hear what the Dr.'s will have to say.

I am sure he still needs the oxygen ... when he throws it up 'tween his eyeballs, he desats regularly. I am not sure how much desatting is "ok" or what the rules are for that, but it seems at other times he does ok for a few minutes. I don't condone chance taking where that is concerned. If the Dr. thinks he can be weened, I'm all for it. She knows better than we do, of course.

We have had lots of visitors. Not many have touched him or gotten very close, but we have had some "lookers", if you will. Kadin is taking what seems like a lot of milk during the day, too. I am starting to wonder if he needs maybe something more, like maybe cereal?? I know his pediatrician mentioned it the other day but I thought he said in a couple of months we can start him on that. He is taking 100 ml of milk regularly and last night he took a bottle at 11 then at 1 wanted another one and FINISHED IT. But then he also slept from 2 til 8 this morning! YAY for mommy and daddy ... just about a full night's sleep!

I am really enjoying the luxuries of cooking and cleaning at my own pace, not having to get dressed and run to the hospital (though I would do it all over again in a heartbeat!) - the words of a wise nurse ring thru my ears when I start revelling in being at home ... she said that once a baby is released from the hospital, he goes home and really starts to flourish. He is held by mom and dad, he is in the family's element, his needs are met by the ones who love him most, etc ... and they really start to grow and develop quickly! After being home for 2 weeks now, I can see exactly what she was talking about. When Kadin cries, at first we let him cry for a second to see if he will soothe himself back to sleep or whatever ... if not, we pick him up and see if he just wants to be held ... sometimes this is the case! Then of course, we eliminate everything else like changing diapers and feedings. It's pretty awesome how we can communicate with him ... just like it's supposed to be.

The hard days of the NICU are fading swiftly. No mistake here though ... those days were hard and tough, touch and go, uncertain yet full of joy - and they will never completely be forgotten. I am thankful for those days because they changed my life forever. The life we are living right now is what we were waiting for the whole time and I am eternally grateful to our God who has allowed us to have what we have ... I wouldn't trade any of it for the world.

It's almost been a week

2009-03-06T22:19:00.003-06:00

We have been home almost a week. Things have been going really good. It took a few days of being tangled up in monitor wires and having to get accustomed to not being very mobile in the house to really get comfortable. I wouldn't say we are COMFORTABLE as in not cautious - we are very cautious about everything we do and everything Kadin does. It's just gotten a little easier for us after almost a week...

We have 3 "stations" set up for him in the house. One is in our bedroom where he has his baby bed (Thanks to Dane and Codi Canning, they sent us home with it when we went to Oklahoma for my 20th HS reunion!) - the 2nd station is in the family room where the kids play video games, it's just between the living room and the dining room/kitchen so it's a great central location for me to sit and feed him and be able to talk to anyone who isn't in a bedroom - and the 3rd location, we set up the pak n' play in the office since probably beginning this next week I will be working in the office! The concentrator is located centrally in the house (the laundry room) and the tubing goes anywhere in the house ... we just have to move the monitors when we go and that is no trouble now.

Kadin had his first pediatric appointment and the Dr. said he looks WONDERFUL. He is growing just like he is supposed to. It's strange to think about, but even tho he was born on November 3, being in the NICU is like an artifical womb ... he really doesn't start on the right path until he is term, or around his due date, so really, it's like we have a week old baby right now. He is 4 months old, but of course he wasn't supposed to be here and we had to finish growing him! It makes perfect sense and I don't think of him as 4 months old because he is so small like a newborn (tho he weighs 8 pounds and 8 ounces!) So we look forward to all the developments he will accomplish soon...

Early Childhood Intervention is coming to the house in a couple of weeks. They will get people to come out to the house to monitor his development - occupational and physical therapists and maybe even later speech therapists. I am familiar with these types of programs from when I owned and operated my daycare in Breckenridge ... several of the children I kept had a need for these types of services and I loved watching the children and their therapists. I learned how to help them individually do a lot of things also ... very interesting.

The Dr. told us now to just feed Kadin when he is hungry, give him as much as he will take - he will know when he has had enough and he will probably sleep better and longer with a full tummy. It has worked. I even thought "He is sleeping too long" but when he woke up he was ready to eat and then stayed awake for quite awhile just playing and interacting with us.

The kids have been so wonderful with him. Robbi calls him her "Little Prince" and Kota loves helping with everything we do with the baby. He helps feed, change diapers, change clothes, turn off beeping monitors, make bottles, YOU NAME IT ... that little man is RIGHT THERE helping! He even brushed Kadin's hair tonight while I fed him and when my hand would get tired, Kota would have a turn holding the bottle while I brushed. Tonight is bath night so Kota is also eager for that moment....

We were able to get some much smaller oxygen tanks from Oxycare in San Angelo. That will help greatly with any traveling we do ... especially the running the kids to school real quick in the mornings. Lugging that big ole tank around to go 1.5 blocks ... I was kinda not wanting to do that!

So, that's my update for now ... I hope you all are healthy and happy and full of blessings. I have to go feed the baby and try to get some sleep. I have had a headache for several days from a lack of sleep .. that's just what happens to me - ugh! Have a great weekend . . . .

Love,
Leslie

So Much To Say ...

2009-03-01T21:43:00.004-06:00

I am making this quick because I just don't have much time...

We made it home with Kadin on February 28th at approximately 9:30PM. It was surreal for us ... everything seemed to move slowly and I wondered is this really happening? Living with a monitor and oxygen is proving to be a little difficult, but it isn't something that can't be mastered and overcome within about the next week or so. The most difficult part of it all is trying to get a working system down so that we are all comfortable with everything.

We set Kadin up a little area with a pack-n-play (Thanks so much Terri and Michael!) with his concentrator and his monitors nearby. There is a LOT of cable with everything so dealing with those hanging everywhere is not foreign to us, but it's just annoying! I want to be able to pick him up and walk where ever I want to in the house, but it just isn't going to happen right now. We have explained the monitors to the kids and the importance of the oxygen also. They are aware when the monitors alarm we look to see what is happening. The kids have been just AWESOME! They know when or if the canula comes out of Kadin's nose to put it back in ... they are also very good about GERM-X before having contact with him. I just can't explain how good they have been about Kadin being home ...

We promised Kota a long time ago that when Kadin came home, he would be the first to get to hold him. He remembered that this morning when he walked in the door from spending the night at his daddy's house. He came in and the first thing he said was "Kadin's home, huh mommy?" and of course, I giggled and said "Yes, baby, he's here!" ... And as we were walking to the bedroom where he was, Kota said "Be quiet so we don't wake him up!" It was so cute ... he was even afraid to flush the potty for fear of waking the baby. I explained to him that Kadin is used to a LOT of noise from the NICU and it is quite alright to do our daily things here and talk at a normal level so that we don't get him used to the quiet.

We went to Kadin's bedside and Kota looked at him for the first time ever in person ... he said "Aaawwww!" I asked him what he was feeling and his response was simply "Love!" ... Talk about welling my eyes up with tears. My sweet little 7 year old knows what it is all about. There is no jealousy ... except for Robbi and Kota fighting over who has held him how any times. They are both being extremely helpful. I had to let them know ... that Kadin is as big as he is (8 pounds 2.5 ounces) partly because of THEIR help. I reminded them of ALL those times they waited in the waiting room with the huge chalkboard on the wall, with coloring books, magazines, munchies and snacks, etc. that they were waiting while Kadin grew and got better. It finally fell into place for them - I am so proud of my kids and how they handled themselves and our situation over the past 4 months. We look back at it now and reminisce about the things we did and how we miss certain things. Kota loved the donut holes every morning at the RMH. Robbi loved getting the quarter bottles of water out of the machine every day. They loved playing games with Darren and watching movies. They loved having Wal Mart close and going to McDonalds! So I reminded them ... while we were "living" like that, Kadin was growing so we could all be at the point we are right now. They had HUGE smiles on their faces as we all 4 cuddled on the bed together this morning.

I said I was gonna make this brief but uh huh ... whatever ...

We had several visitors today. My parents came by ... My dad had never seen Kadin either. He was there before he was born but had returned that day to go back to work and was never able to make it back to FW again. Danny's sister Sandy came over for awhile and visited, too. Our dear family friend C'Ann came over and brought a darling little outfit with a monkey in a firefighter helmet! It is ADORABLE! My sister and my nephew came by also and brought some much needed items that I really hadn't thought of ... wipes, shampoo, etc ... plus she bought me an Espresso machine for my upcoming birthday and the goodies to go with it. Danny and I experimented tonight to re-create STARBUCKS and did so successfully .. SO THANKS SIS AND CAM !!!!!!! Awesome ... just awesome!

This week is full for me ... I have appointments and phone calls to make, and court on Thursday (ugh, not looking forward to that at all!) and still some adjusting with Kadin here. It is going to be just fine, though. I am loving having him here and like my precious daughter said this morning, we are "starting all over again" with having a newborn in the house. I never imagined I would be having another baby, but here it is and I wouldn't trade this experience for the world.

Thank you all for being patient on my blogs after arriving home. I know some of you have asked why haven't I written, lol ... cuz you know, I write about EVERYTHING, so this is about all have time for right now. I wanted to publicly thank all the members of the First Baptist Church of Big Lake for the meal that they provided for our family this past Wednesday evening before we went back to FW to get Kadin! It was delicious and very much appreciated. I sent the URL to this blog to the church in a Thank You letter, so if any of you are reading this, know that your love and generosity is very much appreciated in this time for us and will be for always.

God Bless You All!

Leslie and Family

Life

2009-02-25T16:44:00.000-06:00

It is an awesome feeling to be home. It is a horrible feeling to be home without our little man, but it is still nice to be home. Danny and I have worked on the house some and tried fitting all of the things that helped make our life in FW back into our home here and we are thinking we just have too much stuff! lol Time for a sale ....

We have walked to the school to get Kota the last 2 days. We have taken the puppy with us to take an afternoon walk. I need to walk anyway, so it felt really good to get out and be in the fresh air and sunlight. Kota loves us walking to get him ... he loves to lead the dog home with her leash! We turned the corner today to come to the house and Kota and the dog just started running. It warmed my heart to see his little legs running down the street with his dog and his backpack flopping on his back. I said to my husband ... "You can't do THAT in FW!" There was no traffic on the road, birds were singing, and just the sounds of Kota and Pumpkin running down the road. Brilliant!

Sounds silly but the sound of cereal pouring in the kitchen, a DP can being opened, the doorbell ringing, sitting on the front porch, opening the windows ... washing our own dishes, cooking our own meals (and as BIG as we want to!) are all things that I am just savoring this week. I mean, I am taking in EVERY single sound, every single sight, smell ... you name it. I am cherishing it all.

This experience has changed me and my family. It has changed who we are forever. We will never be the same again, and that is a good thing. We are much closer, filled with more love, more patience, more kindness and goodness, mercy, joy ... the fruits of the spirit that God wants us to possess run abundantly within this family. Life is so much sweeter when you come so close to losing someone.

We don't have a lot in the way of material things and we don't need them. It's only what's in the heart that matters. I think of the days we were in that small 10x20 room (may not be that big actually!) and had all we ever needed right there with us. EACH OTHER. That's it. God has such an awesome way of showing himself to us ... his gifts are in my children's smiles, their laughter, their jokes, even their tears. You can't begin to imagine how grateful I am for the experiences we have had since October of last year. It has been amazing....Simply amazing.

Possibilities

2009-02-25T16:05:00.003-06:00

It is POSSIBLE that Kadin may get to come home this weekend. The Dr. called and said he has had no problems since his last issue ... Should I even be saying all this? I don't want to jinx the possibility of us being able to bring him home. I'm like any other mother that cares for her babies, I want to be with our child. I miss him so much ...

Will update when I have more to say. Thanks for your prayers and well wishes for us all.

Still Numb

2009-02-23T08:47:00.003-06:00

Talk about having the life kicked out of you ... I don't think I have recovered.

As you have probably read in my previous blog titled "Numb", we had a hard day yesterday. We knew yesterday was the day we were going to get to take our little miracle home! Danny and I woke up so excited. It was difficult to even get to sleep the night before. We spent the night before doing laundry and getting ready to leave our room at Ronald McDonald the next day after picking up our little man. We were joyful, happy, excited, couldn't believe the time had come ....

We got to the hospital and everything seemed fine. It was time for Kadin to have his bottle, so I sat down and fed him after changing him and taking his temperature. Again, he seemed just fine. I sat with him for awhile during the time that Danny was packing all his stuff. I got him to burp and talked to the nurses ... nothing out of the ordinary for the day, except that this was what we thought was going to be our last time to sit and visit with Kadin in NICU. An oral antibiotic was ordered so Danny and I left Kadin asleep to go fill the med at the pharmacy ... we also loaded the carseat in the truck and grabbed the monitors to take into the NICU to hook Kadin up to before leaving. We were gone about an hour and a half to get everything done.

Upon our return to the NICU, we walked into the unit where Kadin is and the nurses had long faces ????? What's wrong? The nurse taking care of Kadin walked over to me at the bedside and said "We aren't getting an order for him to be discharged. The Dr. will visit with you in just a few minutes." I was like .... "UUUhhhhhhhh.... with my jaw to the ground."

It was like someone had kicked me in the gut, knocked the wind right out of me, like I was having a very bad dream, it was unreal, I was not believing my ears ... I just sunk into the side of his little crib. I couldn't even cry. Disappointment at it's lowest. Then she proceeded to tell me ... it was garbled in some spots, but I did hear that he dropped his heart rate and had to be stimulated ... somewhere in there she said he turned blue after about 15 seconds and something something something .... I heard it all, but couldn't process it for a good long while. I just stood there staring at my precious baby. He looked wonderful. You would never have known he had an issue only a short time prior to our arrival.

Obviously, he wasn't ready to come home. They say how weird it is that a baby can do these things ... they can rock right along and be fine, but the day comes to go home and they "act up" preventing them from leaving. Most of the time it is a very good thing ... the nurse told Danny of a story of a daddy having to do CPR on his infant right after they left the hospital because he quit breathing. That isn't a place that either Danny nor I would want to be. We are thankful that things happen the way that they do, but the disappointment is beyond shattering to your heart.

So ... as most of you know, we traveled home without him. The Dr. suggested we go home, spend time with the kids here waiting on us, get the nursery ready, do more cleaning if we need to, get things settled and ready for Kadin (the bed is up and that is all that we have done!) so that is where we are ... home. It is so hard to not be getting up and going to the hospital. I am glad that I am here for the kids, they missed us so bad and we missed them. Life is in limbo right now and I'm holding it together. I can't wait to go back to FW and pick him up. I had said last time Dr. Stevener suggested we go home that I would never leave my baby ... but this time it seemed appropriate to take care of things at home and get settled back into our routine before Kadin comes. I can't imagine trying to get all this laundry done and rooms cleaned while getting up every 3 hours to feed the baby ... I would be exhausted.

So this is where we are and we sure could use more of those prayers that have so selflessly been said on our behalf. Danny called about Kadin already this morning and he is doing fine, no problems at all, and the nurse said half the time he is wiggling around and his canula is not even in his nose and he is still satting at 100 (can't get any better than that) so wow ... who knows! God has a way and I'm not one to question him about it ... just be thankful that we still have our son and he will be home soon . . .

Numb (repost from 2/22/09 on myspace)

2009-02-23T08:44:00.002-06:00

I am numb. I don't even know what to write here. Danny and I are on our way home. Kadin is still in NICU. We were one hour away from loading him in the truck when he had an A&B episode. Dr. Stevener suggested he remain hospitalized until he can go 5-7 days without doing this. We weren't told this information but he has had 3 episodes this week with this same thing but he brought himself back up within 30 seconds without stimulation from anyone. They said we weren't told cuz it wouldn't be something to keep us from going home. Regardless, it is information we would have liked and needed to have known. Had he done this on the road I wouldn't have known he had done it this week ..... you get the idea. Not much more to say right now. Like I said, I am numb. Danny is experiencing his own emotions too. The radio is playing. The ride home is long. Pray for Kadin and for us ... thanks.

This just in ... and we're not telling Kadin ...

2009-02-21T11:49:00.001-06:00

The only news I have for today ...

... The Dr. just told us we are going home tomorrow !!!!!!!

Praise GOD!

Past Due Update

2009-02-20T19:46:00.002-06:00

Things are going ok for now. I am having to update on the RMH public computer which does not allow me to access myspace for some reason, but anyway ... things are looking great for us and here is a bit about what we are doing...

Kadin has done very well since his infection started on Sunday (or actually the day that it was discovered!) He was immediately started on IV antibiotics and a blood culture was taken. The next day when the surgeon made his rounds, he actually was able to get some "stuff" out of the site and sent that off for a culture also. Both of those cultures came back negative so he is really out of the woods on that. A couple of days after being on the antibiotics, the surgeon made rounds again and was able to squeeze what appeared to be a suture out of his infected site. YAY! AN EXPLANATION !!!!!! It was 10 days after his surgery so we were really quite surprised that he ended up having this issue, but anyway, it's healing very well. We are putting peroxide on it and keeping it covered with gauze and he is doing great.

His IV antibiotics stopped today and we will continue oral meds for a week after we go home. I know he will do fine with those, he has done well with all the meds I have given him orally. His breathing and heartrate are staying in a good zone, so we really just need to go home! He is eating very well, finishing every bottle he is given, burping like he should, loving to be held afterwards, tolerating his baths very well .... and the Dr.'s have said that if everything continues to go as it is right now thru tomorrow, we will probably be out of here on Sunday! I can't wait ... life finally begins outside of the world of NICU!

It's scary, for sure ... not sure how I will be able to handle it, but I don't have a choice! I did learn today that my folks are going to let me work from home so that is good !!!! There is a lot for us to do when we get home, plus, Kadin has Dr. appointments the first week of March so we will be right back up here then for those. His last appointment is March 12th and then he will be finished for awhile. I think we will be able to have referrals to San Angelo Dr.'s at that point. I am very excited about that.

There is a lot more going on in our lives, but I just don't have the time or energy to type about it all. Danny and I are very happy and doing well despite the circumstances we have faced over the past several months. We are stronger together than we have ever been, we lean on one another and are there for each other in absolutely everything ... When I am able to blog about all that I will, and post it on myspace and also on my other blog here on blogspot. Don't know when that will be ... maybe tomorrow I will take my laptop to the hospital and utilize their internet for a little while.

Darren is here this week so we got to see him! It is great, although he is here because he isn't doing as well as we wish for him to be .... it is still great to see him and his parents, and we got to meet his little sister also.

So, I guess look for an update from me later, gotta go now, husband is taking me out for a little while tonight since we are about to be at the "never go out" stage !!!! That's ok ... I can have just as much fun with him at home with the kids as I can going out alone - he just rocks like that!

Have a great weekend everyone .....

Another Delay

2009-02-15T18:06:00.003-06:00

This will be quick. We are moving back to Ronald McDonald House again. Kadin has an infection in his hernia surgery site (just one) and they are starting antibiotics tonight to fight it. They said we should be here for another 5-7 days. I am just devestated, but I understand.

I won't have my computer in the room but you can text me if you wish .... Thanks for your prayers.

Someone Always Has It Worse Than You ...

2009-02-15T09:15:00.001-06:00

This is a valuable lesson that we have learned while being away from home for the past almost 4 months! (Feb. 27 will be 4 months for me!)

You meet so many people when you are thrust into these types of situations. I know being in the NICU is hard no matter how long your stay but there are people that always have it worse than you do ...

I remember giggling a few weeks ago (to myself of course!) because as I was scrubbing in, a very young couple was next to me talking about how hard it was going to be for them to be here for the week. There was nothing seriously wrong with their baby, they knew they were going home within a few days, yet they were so distraught that they were having to be here. I giggled ... mostly out of nerves, but somewhat because I wanted to say the right thing to them ... I ended up only saying that I prayed their stay was quick one and that their baby was alright.

This is one reason I have not griped about our situation ... I have never questioned "Why me, God?" There are plenty of reasons why we have gone thru what we have gone thru, there are many lessons that have been learned, there is a part of life I never knew existed and we have found it ... and after talking to many people that have been in the hospital and at the Ronald McDonald House, it didn't take long to know that SOMEONE ALWAYS HAS IT WORSE THAN YOU DO!

We talked to a mom in the NICU the other day (who also stayed at RMH with us) who has not only been thru the NICU this time at age 39, but also 21 years ago with her oldest child, and then 4 years later she actually LOST a daughter ... OH MY! My heart just sank when she was telling us. She is an old "pro" at this, but it never gets easy.

We are so thankful for our experience with Kadin coming out as well as it did. He is going home only on oxygen and a small dose of diuretic. All of that will possibly be stopped in one month when we see the pulmonologist anyway ... it's not like he will be on it for months and months and months. He just needs to grow a little bit over the next month. Things could have been soooo much worse for him.

We are so blessed and have been so blessed by meeting so many people thru this journey. I can't even begin to name all the circumstances, but we are very fortunate. We met another mother in our CPR class that told us last night her baby is terminally ill. It broke my heart. His muscles will never develop like they should, which includes his lungs and he will eventually pass. She is so strong and devoted to him. She asked us if we would like to meet her baby. He is precious. You would never know by looking at him that anything is wrong. His beautiful blue eyes just roam around looking at you .... he was a full term baby, too. I remember seeing her in the same room as us (for critically ill babies) and she broke down a lot. I prayed for her from my little section of the room .... and thanked God that we didn't have it as bad as it could have been for us.

I can't begin to explain what this situation has done for my heart. I have always been a tender person, but I am much more tender now. There are still a lot of things that I won't tolerate, but I do believe in goodness and mercy in this world much more than I did before. I believe in love a million times more than I did when we came here. I believe in mankind like I never have before .... I am truly humbled by everything we have been thru in the past 4 months and pray God will continue to use me and our situation for the good of others in our path .....

Rooming In - Day One

2009-02-14T14:57:00.003-06:00

It has almost been 24 hours and quite frankly, I am exhausted. I remember how difficult it was to have a newborn and really, that is what we consider Kadin at this point. He will "catch up" at about 2 years of age, but for now, he is a newborn. It wasn't that long ago that I was having to get up every 3 hours to pump the liquid gold, but now, I have several new steps in the process of feeding the baby. I get to prepare his formula for his bottles, change him, take his temperature, and chart it all, too. That happens every 3 hours (8, 11, 2, and 5) so I get 2 hours in between to hold him or sleep or eat or shower or whatever ... They have him on a good schedule here and we can't deviate from it at all unless our pediatrician says we can. We will be seeing him on Thursday after we go home...

We will be leaving here on Monday morning after Kadin sees the eye Dr. We thought we were going to have to go to his Arlington office but he is coming here to the hospital and then we will be able to go ... that is, if there are no problems. It is going to be a long ride home. We have to stop every little bit and take Kadin out of the seat, change him, feed him ... basically stick to his routine while we are on the road. Then we have to stop an hour before we get home and get the oxygen concentrator for the house. It will be nice to finally get home. I have missed my kids ssooo much this week. I know they had to go home when they did or we would not be able to be doing what we are right now.

I have been having some weird dreams. I am not sure where they are coming from but they bother me. I hope next time I lay down and close my eyes I won't be having any crazy dreams.

So many people have stopped by our room to say "bye" to us and many have also said they will stop by again tomorrow or Monday morning before we leave. It makes you feel good that after staying here for so long, people express how happy they are for you that you are going home. Some of the nurses were actually surprised to see our name out on the board outside of our room!

I'm gonna close now ... I only have an hour and a half left before I feed again. And I want another nap, lol. No constant sleep for me for a long time!

This is the end ... and also a new beginning!

2009-02-13T00:04:00.002-06:00

We are rooming in tomorrow at the hospital!

Yes, it has finally come. We are going home this weekend and we couldn't be more excited!

Kadin is going home on .25 liters of oxygen. It's just a whiff, but he still needs it. So, this will probably be my last blog until we get home, unless I am able to have my computer set up in the hospital while we room-in with him.

He has changed so much in the last 3 or 4 days. He is eating well, his oxygen is great, he is sleeping well, moving like he should ... everything is just fine. We have been busy making Dr. appts and finalizing a LOT of things. Life at home is going to be much different for us for the next year at least, so we have to make the best of it and just go with it.

Tonight we attended a CPR class. I pray we never have to use it, but if we do, we are prepared.

We have already taken the kids back home and re-enrolled them in school. They are excited and to tell you the truth, so were we ... because of how excited they are about being back HOME and with their friends!

I can't believe it is actually here ... it's been 3 and a half months since I was admitted to the 3rd floor for high risk pregnancies! I couldn't see my way thru it all for a long while, but now, it's hard to believe that we've come this far!

I have said it what seems like a hundred times, but I know that we wouldn't have made it without the love and prayers of so many people. We are eternally grateful for the prayers and well wishes of all of you who have taken the time to keep us in your thoughts and ask our mighty GOD to perform miracles in our lives! We would not be bringing our little angel home with us this weekend if it weren't for a merciful God who is faithful to those who love him! So THANK YOU from the depths of our hearts and know that your unselfishness will be remembered forever and always......

Until we meet again on this journey . . . . . .

The Latest

2009-02-10T23:47:00.003-06:00

I have failed now to post the last 2 updates from myspace on here ... I apologize! If you are on my myspace you can go read them there and if not, well ... I'm not sure when I will be able to copy them over. I am pressed for time right now.

We are going to be able to go home very soon. We are waiting on a few minor accomplishments (well, they can be major, but he's accomplished them before, just has to do it again since surgery!)

I apologize for not getting the updates here ... our internet at RMH has been down and I have posted some from my phone ... it doesn't allow for the copy and paste feature of such magnitude!

Keep praying please ....

Kadin's Surgery and Recovery

2009-02-05T20:13:00.002-06:00

Wow, what a long day we have had.

When your 3 month old (or any child for that matter) goes thru anything that will cause stress, it really wears on you. You think of all kinds of things. I worried so much last night I don't think I rested while I slept. I woke up this morning solemn about everything because I just couldn't get my baby off my mind. There he was, laying in the hospital, not having a clue what is going on in the world with him. He knows hunger, wet/dirty diapers, and love from his family. He knows the occasional IV, stick in the foot, nurses talking to him and caring for him, respiratory treatments, etc .... but SURGERY? Ok, so he could be considered a veteran after having had heart surgery when he was 10 days old, but really ... again? It was necessary and I am grateful, but just dealing with the stress of hurting because of what he is going thru is very draining. I am wiped out and all I did was sit and worry today!

We got to the NICU about 8:45am or so. We had been told two different things about when his surgery would take place so we decided to get there as soon as possible. We weren't there but about 15 minutes and the surgery team was calling for him. We (or our fabulous nurse Courtney!) had to administer 3 different types of eye drops in his eyes and do it 3 different times. So, we did that and he did not put up any kind of fight. He was resting in my arms. Then the RT came in with his transport bed and I put him in his bed. He was going to town on his pacifier because he had not had any formula since 3am. He had pedialyte at 6am and that was it. So Daddy and I walked from our hospital to Cook's to deliver him to the surgery team. That was all too quick .... the worry set in even more, but I felt ok about it anyway since he needed everything that was done today.

He had laser eye surgery to correct ROP in only one of his eyes. The surgeon showed us pictures of his eyes (very cool pictures, by the way!) that showed how the blood vessels were growing and then showed us what he did to help correct it. Kadin will be examined again in a week and then again in 2 weeks to see if he needs another treatment. The laser surgery was the second surgery he went thru today ... thank goodness they put him to sleep only once and he will recover only once.

First though, they repaired his hernia. He had it on both sides of his groin area and tho it wasn't really a problem, we didn't want it to get that way, and luckily he never developed any issues from it. He has two little bandaids in that area now and there is a chance they could come back but I understood it isn't a big chance.

He came off the ventilator fairly quickly today after the surgery. I was told they gave him some meds to reverse the effects of the anesthesia but when we left this evening he was still suffering thru some of those effects. He was not wanting to breathe for being sooo relaxed. He is now back on the bubble cpap until the effects of the meds wear off, hopefully by tomorrow. He is also not getting any formula either, so little man is going to be CUH-RANKY when he fully wakes up.

So now, we are resting at the room. We finally ate at about 7 tonight and I was so exhausted I couldn't even finish my dinner.

I am just ready for him to recover and get back to the growing he is doing and the process to getting back home. I am so ready ..... *sigh*

Surgery

2009-02-05T10:30:00.000-06:00

Kadin has been in surgery since 10 am. They will come get us to see him as soon as its over. The plan for recovery was modified a little bit. I will elaborate on that when I can type more. Please pray for him ... thanks!

Eye Surgery Scheduled

2009-02-03T14:24:00.003-06:00

I visited with our neo today and he got on the phone right away with the eye Dr. that has been following Kadin. Then our Dr. told me that Kadin is in the window/time frame for having the corrective surgery for his ROP. So I got on the phone with the Dr. and he explained a few things to me and why this surgery is necessary. I had read all the literature they have given me and really expected it to be a very serious issue ... While I don't minimize the severity of what is happening, I do feel more relaxed about the surgery possibly being necessary on only one eye instead of both. The left eye has progressed to definitely need correction and the right eye is still kinda on the fence. He said that we will perform the laser treatment on the left eye and take a closer look at the right eye while he is in surgery. If it looks like it might be worsening they will go ahead with the corrective surgery on the right eye. The Neo also mentioned that we could possibly get a surgeon in there to do the hernia surgery at the same time. Kadin's respiratory issues are cause for him to have to have this surgery on the breathing machine and not on the cpap. He has been having some a's & b's the last couple of days and actually had to be "bagged" yesterday after an eye exam. It's fairly traumatic for the babies. He is still eating well, but was having some issues with not wanting to breathe for the eagerness to take in his feed ... He was bumped up to a higher pressure today - from 1.5 to 4 and his oxygen is a little higher also just to help compensate so he doesn't have to work so hard right now. His blood gas was good today and they did an xray also because it sounded like he had a little fluid in his lungs. He will be given the meds again to pull that fluid off .... I expect him to lose a little weight, but otherwise he is doing really well. (when I say that, I am speaking in relation to how a 24-weeker normally does ... it's not always great, but for their condition, it is pretty miraculous!)

The surgery will be within the next 2 days, just don't know when exactly yet. I will keep you all informed as quickly as I can and if I can't then I will get someone else to come update! Thanks for your prayers in everything and blessings to you all ...

Love,
Leslie

Just as I was posting this ....

2009-02-01T10:37:00.002-06:00

.... my husband came in the door saying that Kadin is now on ALL nipple feeds and has moved down to 1.5 liters on the oxygen. He is staying between 23 and 25% oxygen thru the canula ... so dang, this is moving quickly!

Just had to get that on here since I may not have a chance to come back to do it today.....

Closer to Home

2009-02-01T10:10:00.003-06:00

I know my updates are coming fewer and further between, but we have been busy! Since Kadin has started taking 2 out of every 3 bottles, we are there a lot more often. I was first shown how to feed him with him sitting up, but then another nurse showed me the "sideline" position and both Kadin and I love it much better. He is positioned more like he is at the breast and since this is very natural for him, he is finishing his feed in about 12 minutes. Amazing! He is still taking 47ml, which is 13ml shy of 2 ounces! He doesn't go up on his feeds quite as quickly as he once was, but he is doing very well and although he hasn't mastered bottle feeding at this point, he knows when it's time and tries his best!

We had a couple of episodes yesterday with his feed where his heartrate dropped and he quit breathing. It was so scary. My husband had never seen our baby turn blue, until yesterday. I have never liked being in there with him when it happens, but the nurse was able to help him recover from it and then he fell asleep from exhaustion afterwards! I had worried maybe he was getting sick or something and called a few times after that to check on him and he seemed to be doing just fine.

We had a lengthy conversation with his Dr. the other day. One of the first things she said was that it was her last day with Kadin, it was now her turn to rotate to Cook's and we were getting a new Dr.! My jaw dropped ... So we have yet to meet our new Dr.!

She was very encouraging in everything we talked about, though. She said it looks like maybe we will go home in about 3 weeks. BUT ... that's just a guess. It is not anything definite. We have to wait and see how Kadin is doing, of course. He is already down on his liters ... down to 2 now, from 3. He has to be at about a half a liter before he can go home. She said she might even project that he could be one that goes home without oxygen! WOW! She said he is doing THAT well. That is exciting for me to hear.....

I had asked what changed from us being told it could be 2-3 more months outside of his due date of February 23 ??? She said we are always given the worst case senario ... i.e. when we were always told "IF" he makes it out of the hospital. But as I wrote in another blog, he has exceeded all expectations of the medical staff and is doing very well! He loves not having all that junk on his face and has developed quite a little personality! I miss him more than ever when we aren't with him at the hospital. We have been able to really bond lately with his feedings.

We need to go buy a carseat now. He will have to have a carseat test and a hearing test before he goes home. He will also need to have hernia surgery and recover a few days from that, too. He will follow up with a pulmonologist and a urologist about once a month after we go home and we will see how he does. His is still on the fence with the eyes and it is to the point they think he will recover on his own but still can't make that call. If they seem to be getting worse, he will then have to have the eye surgery before he goes home. I believe the case worker said that there is a pediatric eye surgeon in Angelo, but not the others, so we will have to travel to FW for those visits. It is possible, depending on how well he does by the first visit, that our visits will be spread out a little more than once a month!

If he doesn't do well and it looks like he is going to have to have more care than we can handle with driving long distance, we have been encouraged to make a move closer to FW. I really don't want anyone other than the people here to take care of him if it gets to where we have to have more care .... but that isn't looking like it will happen so I am not going to even think about all that right now.

Just as it was an adjustment to come here and not get to go home, it is going to be an adjustment going home. I miss our home horribly, but there are things about being home that I do not miss and am not looking forward to being back around. That's for another blog, lol .... I talked to our Dr. about my working and she said it would be very dangerous for Kadin to be out with me at in my office, so I am going to have to figure some way I can work from home. There is a lot to do to catch up the books at my folks' business. I know it can be done and it will be no problem with living just 2 blocks from the office, but having him there where there is a lot of dust will be a big issue for his lungs, she said. And she said absolutely do not have him around any smoking. Ok........sigh......... lots of do's and don'ts headed our way, but it's all worth it for him to remain healthy and grow like he needs to.

My little mama .... she is starting cleaning on our house today. She is going to do the things that need to be done before we can go home, like bleach everything, shampoo, etc .... I know I owe her and my dad BIG TIME for all they have done for me and for us thru all of this, but how can you ever repay anything like that ??? In my opinion, "Thank You" is not enough. Guess I will have to figure it out ....

Well, that's about it for the update today. Kadin was last 6 pounds 2.2 ounces. His growing has slowed down a little bit because he is more active these days, and being more active burns calories, so he has slowed down .... the feeds are part of why he has slowed down, he has to work at getting his food now! We will be going to see him again in just a little bit ...

For now, I've gotta take something for these allergy and sinus issues I woke up with this morning. I hate it!!!! No fever, just sneezing and blowing my nose type of stuff .... worries me, but I gotta keep going.

Have a great and blessed Sunday people ....

Quick Update - not much time lately

2009-01-28T14:30:00.003-06:00

Just wanted to give a real quick update before we head back to the hospital...

Kadin is doing remarkably well. His Dr. said he was exceeding all expectations at this point. I knew our little man was a fighter. He has been a fighter since day one and with so many people praying for him and us, we can't help but win!

He is now as of today, SIX pounds! I can't believe it. He is growing so much right now. We have been at the hospital a LOT lately because he is taking abou 4-5 bottles a day now and they like for us to be the ones to feed him, of course. He does so well. Amazingly his instinct is unbelievable ... he turns to my breast to feed, but mommy doesn't have any of the liquid gold anymore. After the first time I bottle fed him, I went home and went to bed. I woke up the next morning with a wet shirt! This was after not pumping for several days! But that's all I had and haven't pumped anymore.

I have contacted my mom because she told me she would clean our house from top to bottom for his HOMECOMING ... several nurses and the Dr. said we should start making arrangements to go home ... lining out our pediatrician and other things. I was like ... WHAT??? It's time??? They have said around his due date, possibly sooner, could be later ... just depends on how Kadin does, he's the boss!

I have a lot more to write about but that will be in my other blog on here ... we have been very busy lately and there was no school today for all the ice. Danny said there 366 wrecks in a 12 hours period up here ... wow ... it was coming down GOOD and we didn't dare go anywhere, even the 3 blocks to the hospital!

Alright .... I've gotta take some pics off the camera so we can have some for what we are doing tonight - will write about that later when we get back!

Much love to you all,
Leslie and family

Our First Bottle

2009-01-24T09:32:00.002-06:00

It is hard for me to get in to visit Kadin when it is just me and I have the kids. I am not complaining, but I leave them in the visitation room (it's all enclosed, not open for just anyone to come in) and go visit for a little bit. I missed Kadin's first bottle this morning because I was planning to go at noon. They said he sucked down 43 ml of milk and were waiting for him to burp! YAY! Another milestone. I am so excited for where he is right now. I am just so proud of him.

He hasn't had anymore a's and b's (apnea and brady) and is on 24% oxygen and doing well. I can't believe we have come this far. I know they have all said we are just waiting on him to grow .... I think he's grown! It's here.

Praise GOD!

Let's Do A CHEER ... K! A! D! I! N! YAY KADIN!

2009-01-23T20:34:00.002-06:00

Ok so that seems a little silly but I am serious, I am cheering for that little boy laying in that hospital bed right now. You wanna know why? He is such a big boy now ... He was removed from bubble cpap today and put on the nasal canula and is doing FABULOUS! Dr. Sidebottom came in the unit and listened to him and asked why he wasn't on it yet.. ??? I said I didn't know, but that his Dr. mentioned by about Mon or Tues we would try him on it.

I called just a few minutes ago and he is still doing just awesome! He was on 21% oxygen when they put him on the canula and now he is at 23%. They did say that sometimes they have to be bumped up a little bit.

I pray this is the road we have been waiting to get down. Now we just have to wait it out for him to go down on all his settings now on this ... it's a high flow and I believe there is still another step under this one.

The next thing we will be learning how to do is to nipple feed - YAY! I can't wait to give him a bottle and see his little eyes (which I saw clearly today and they are Daddy's ocean BLUE! OMG, I almost screamed!!!!!!) looking up at me while I give him his bottle. I will get to hold him more often and everything now. It is just so exciting for me to know that when I go in I won't have to just sit and stare at him and wait for his feeding, lol ....

I did cry ... shed a few tears at being so proud of our baby! I can't believe how well he has done. Some people were not so faithful in their believing that he would make it, but I couldn't believe anything but he would make it and do well. He is still on the fence with the eyes ... can't decide whether to do surgery or not. I know he will have the hernia surgery right before he goes home, whenever that will be, but it's a simple one and no big deal really.

So ... that's my good news for the day with our little sweet bundle! I can't wait to go see him tomorrow. My mom is coming and she will not even recognize the little toot !!!!!

I'm outta here for now ... got a headache.

Finally!!!!

2009-01-22T20:08:00.000-06:00

Here I sit, in my room, WITH INTERNET! I am so thrilled! The only problem, my wireless keyboard isn't working and it would be scarey to let you see how I am sitting!However, I'm not going to gripe cuz I am online with something other than my phone or the computers that are shared downstairs! It's just more personal to be online in your room if you can be. They fixed it today at about 5:30PM, I was taking a nap and woke up thinking we had internet and BAM! Cool ... way cool.

I am sorta sick. Guess it's just allergies since I don't have a fever or anything but it's annoying and I have not been to see Kadin but only once in the past 3 days now. If I am doing better tomorrow I will be there to see him.

Kadin is doing so wonderful, it's unbelievable. If he continues to do well like this by Monday or Tuesday Dr. McGuirk said she will take him off bubble cpap and put him on nasal canula! I am so excited about that. He is currently at 21% oxygen (room air) and doing fine, no desatting or anything. His breathing treatments have stopped except as needed and he hasn't needed so COOL!He is closing in on six pounds. Hard to believe really that he started out at one pound and six ounces!

My liquid gold has depleted. I am confident that it was taking a toll on my body and my body said "Enough!" The Dr.'s said my body knows best and that I have gone far above and beyond what most mom's are able to do and that he has absolutely gotten what he needs from that milk I provided. So now, with that news, I am looking forward to returning back to "normal" whatever that is, lol ... I intended to work out toay but I woke up not feeling well AT ALL and that was enough to deter me to wait til tomorrow if I am feeling better.

Danny has been out working a lot this week, finally. I am proud of him. What he does is a very hard thing to do and he's doing it for us. He is tired and has odd hours, but I'm ok with that as long as he is.

The Rodeo and Carnival are here and our kids wanna go. We will be taking them as soon as we can. I think it's quite expensive, but we haven't done anything in a very long time so ... we'll be trying that out this weekend maybe.

My Aunt Ro-Ro made me breakfast on Wednesday and I sat and visited with her for a couple of hours. She is crazy, but I just love her. It's like having another piece of "home" here while we are here.

We saw JT today. He flew in from DC last night and was heading home today after his trip to the inauguration. He got us some really really nice souvenirs and I was so proud!!! He didn't have to do that, but he did ... and Cassie too. Those two are wonderful. We had pizza with them and Shonda and JT's great-granny. It was good to visit with all of them.

Seems like so much has happened in the last few days that I haven't been able to post about cuz I had no access to do it. There is always someone wanting on the computers downstairs that I hate to tie it up as much as I can sit here and type.So anyway ... that's kinda it for now. I have not had a chance to read anyone's blogs and don't know that I will either.

I am waiting for visitors (TAMMY!) to make plans to come see us. I think my aunt said my mom might come Saturday? I dunno. She hasn't said anything to me about it. I know she is very busy at home with the shop and Cam while my sis works.

I have another blog to write, but it's not the right time for it. I am tore up inside and tired of feeling the way I do about things.

The kids are in the game room right now with a young kid that we met while here. He was here last time we were here and he is soooo cute. His portrait is hanging on the wall and Robbi first saw it and said "Oooh la-la!" ... Then she saw him here and went goo-goo. Well, I asked him if that was him in the big portrait and he said yes, so I made sure he knew my daughter thought he was sssoooo cute! So tonight what happens? He asks Dakota if he wants to play video games with him and Robbi follows. They are all in the game room playing PS2 now! lol Crazy! But they need friends here too and it's nice to know they can go hang out with other kids here and have some fun.

Ok that's enough for now, I got other things to look up while I have internet, lol ....

Love love love,
Leslie

More Changes

2009-01-20T09:01:00.002-06:00

For anyone interested, we have moved back to RMH and we love it. I was excited to leave here and go to the suites because of being able to have tv in our room and cook in there, etc ... but the kids missed this place with the playroom and outside playground, and I missed having the luxury of riding the shuttle when I wanted! (no parking garage alone or ever!)

I am posting from the public computer in RMH cuz the wireless internet is not working for some reason. I will post from here as long as I can't access anything from my room. They did say that they were going to put in a call to their computer guy today if resetting the router did not work. I have to have internet so I can help my family with some business stuff, plus I check banking information etc when I can.

Kadin is 5 pounds 10.6 ounces today. They said he looks a little puffy. I haven't seen him in 2 days because I am having some scratchy itchy throat and eye stuff going on. We don't need anything to compromise his respiratory system so I have to stay away. Ugh. I miss the little toot. I looked at Danny this morning and said "What am I supposed to do?" My whole day seems shot since I can't go visit. I pray I am not getting sick.Better get off here now, others want their turn and I don't wanna be a computer hog. Hope to hear from you guys!

Kirsten, how was Laynes appt today? I can't wait to hear. I hope he is alright. I prayed for him a lot last night - how did all that go???

Leslie

5 pounds 7.8 ounces

2009-01-19T11:55:00.002-06:00

He just keeps crawling up and up and up and up! I know some of it can be fluids he is holding onto but he usually always gains weight from day to day and it is usually a couple of ounces at a time! I just can't believe how big he is ... yall that haven't seen him, you need to come see him!!! You won't recognize him.

My aunt came for a visit Saturday and she said the same thing. She couldn't believe how big he is. Last time she saw him he had just had surgery. He looked like a little old man. Seriously. She said now he looks like a real little baby! I have to admit, with his growth, I am getting more and more excited. One day soon I will be able to pick him up out of the bed and look him in the eyes and love on him, kiss and squeeze him, etc ... and have him respond.

Speaking of responding ... I rubbed his cheek gently the other day and he smiled. I told Robbi to look while I did it again ... AND KADIN LAUGHED!!!!!!!! OMG! I was so thrilled. It brought tears to my eyes. It was so precious. I can't wait to experience more and more of that!

Well, I have a lot to do today and Kirsten is coming and bringing tons of clothes for us, so I'm outta here to get things cleaned and packed up in case we get to go to RMH tonight or tomorrow!

Have a great day blessed friends ....

Leslie

Our New Dr. Takes Over

2009-01-17T14:43:00.002-06:00

The very first Neo we ever spoke with was Dr. McGuirk (hoping I spelled that correctly!). She came into my room on the 3rd floor (high risk pregnancy floor) to talk to us about the viability of Kadin should he be born prior to the 24th week gestation. I was not fond of the things that she said but in hindsight, they had to be said. With hormones raging and emotions high, some of the things she had to say were not welcomed easily, but we know she was only doing what she had to do at the time in order for us to understand our chances with Kadin's survival, not to mention his development later in life.

I would see her in the unit from time to time. She was always nice and seemed to be conducting business like every other Dr. that we saw. I never had any dealings with her other than that initial consultation before Kadin was born....

We found out the other day that she is the Dr. that has taken over Kadin's care, and to be honest, I am ecstatic about it. She called me today while I was getting ready to come visit and I told her I would be there shortly and so she said she would swing back by in a little bit and visit with me. Great ... I couldn't wait to meet her. Setting aside that initial conversation we had with her, I decided I would give her the benefit of the doubt . . .

I am glad that I have an open mind and heart about these things. SHE IS WONDERFUL! She sat and visited with me for about 20 minutes and we really discovered that we are on the same page and that thrilled us both. I enjoyed visiting with her and could really see some positiveness coming from her being our primary dr. at this point. I am really excited about Kadin's progress with her from here on out. She is really excited also about how he is doing and for the first time ever, we heard a Dr. say "He's gonna make it just fine!" WOW! I wanted to cry ... it's always been a day to day, hour by hour basis ... but now, I see us going home. I can't wait !!!

Dr. McGuirk said that he will probably be on the bubble for a couple of more weeks and if his oxygen stays down around 25% or lower we will consider moving him to the nasal canula! I am excited about this because you can be much much much more interactive with the babies then and even possibly start introducing the bottle to them !!!! YAY!!!! I am already holding him during his feeds right now so he is associating me with his full tummy! Speaking of that ... I am producing MUCH MUCH more milk while being on the Reglan! WOW! I pumped about 3 times my normal amounts today! This is keeping me ahead of Kadin even tho he is now getting a little bit of formula.

I am so proud of Kadin and his journey ... like Dr. Porter said before he left, it is really the journey for all of us - Dr.'s, NNP's, RN's, RT's, parents, siblings ... ALL of us are on the same journey and we just hope to end up at the same place in the end!

Bitter-Sweet Day ... Good-bye to Dr. Porter

2009-01-14T19:21:00.003-06:00

I hated to see this day come. Our most favorite Dr. ever has resigned and is moving to a northern state to practice. We knew this day was coming but man, I wasn't really ready for it. I am going to miss Dr. Porter with everything within me. That man is more than just our son's Dr. - he has been an encourager, a friend, a mentor, a comforter, and we are going to miss him so very much. I don't know how things are going to go for our son, but I pray that his replacement will be just as dear to our hearts as he is!

Dr. Porter called us this morning with an update on Kadin. He is so very excited and pleased with Kadin's progress over the past couple of weeks. It was a little "iffy" about how he would do, but Dr. Porter was confident enough to take the chances that needed to be taken and challenge Kadin to move forward.

During his update, he expressed himself about how he feels about Danny and me. He has expressed these things before, but it is so wonderful to know that you have such a bond with someone, especially someone you have to trust every hour of the day to make sure your child has the best possible care available. We were greeted in the unit this morning by Dr. Porter and he had open arms for us ... I wanted to cry. I will miss him so very much. He is such an inspiring man.

One of the most adoring qualities I love about Dr. Porter is that he is always willing to talk with you. He brings things into a perspective that helps you grasp what is happening, what can happen, what isn't happening, etc ... He isn't afraid to be personal with you and make sure you are doing ok. It's not one of those "How are you?" 's where he is just looking for something to say ... he means it.

I dig people like that. It seems there aren't very many REAL people left in this world. I am just so blessed that we were able to be given the experiences we've had with Dr. Porter. We will truly and deeply miss him .....

On another note ... Kadin is almost 5 pounds! I believe it's 4 pounds, 15.9 ounces. His eye exam yeilded some unexpected results. His left side is abnormal and will probably require some correction, but the right side has not changed much. This means it could be improving ... really it could go either way. We will know more on that in about a week. His feeds have gone up to 39mls and I am not pumping near enough to keep up. My Dr. in San Angelo has prescribed me some meds to help in my milk production and they seem to be working right now. If they have not helped boost my supply enough to take care of what the baby needs they will be starting some formula for him. They are adding some powder to help increase his caloric intake and even one nurse said that maybe my supply is not as plentiful because I might be making what calories he needs without the bulk of milk. His oxygen is at 30%, which is down from the increase over the past couple of days. His picc line came out today also and the nurse was going to try to give him a scrubbing on his little head to get the junk off .... His antibiotics are finished so no need right now for the lines or the meds. Dr. Porter said that he never had the full infection, just the presence of the bugs, which I guess I misunderstood. I understood that he had the infection. Dr. Porter also showed us the most recent xray and it was very good!

So ... ok, we are going to the hospital in a few minutes, taking some more clothes for him (like he doesn't have enough!) and his mobile that my sister bought him long before he was born! I will take pictures !!!

Night . . .

Bath Time

2009-01-13T23:15:00.002-06:00

It was sorta unexpected and a little crazy, but we managed! Nurse Laura asked if I wanted to give Kadin his bath today and well, who am I to say "no" ??? I will take every opportunity to do anything with my son!

It was a little production, I can tell ya that! Of course, after getting the hang of it, it shouldn't be that difficult, but making sure we kept the towels clean after I had taken off his diaper was a little more challenging that I had really realized! HOW DO THESE NURSES DO IT??? Practice, I assume. And LOTS of it.

Got him all washed up and clean ... all except for the head since he has the line in there and he's taped up. He now has what they called a "Richard Simmons" bandana on to keep his bcpap on so it doesn't come down over his eyes. He doesn't seem to like that much.

He is not de-satting much at all and if he does, he comes right back up. Everyone is so happy and impressed with his progress. I really can't believe it. I am praying we are able to go home from the hospital sooner than we originally thought.

Walking out of the unit tonight I got a little emotional. When we see the nurses, or the Dr.'s, and even the RT's, they greet us with hugs, smiles, how are ya's, and even lengthy conversations. It has become our life. After all, it's been 10 weeks now that we've been here. I told Danny I will certainly miss these people when we are gone. OH, and I can't forget all the ladies at the front who always call back to tell them we are scrubbing in and to see if it's ok if we come back for a visit. They all know our names (and have for some time now) and when we walk in the door they are already picking up the phone to call back to the room. I will miss all that. This experience has taught me and unbelieveable lesson in love and patience. Not that I didn't already know about either of those, but they are more intense in my life right now.

Kadin is doing so good right now. I am just so pleased with how well he is moving along. I pray that this just continues and soon he is stepping even more forward from the bcpap!

Proud as PUNCH!

2009-01-12T22:27:00.002-06:00

Today was an awesome day at the hospital. I just love Donna ... she let me do all kinds of things with Kadin. I guess it just seems the better he is doing, of course, the more interactive I can be with him. I got there and she immediately asked me if I wanted to hold him today. Of course, I was eager to say YES!!! So I changed his diaper and took his temperature first. He got a little mad at me. But one thing I noticed was when I pulled his legs out of the little outfit he had on, he drew his legs up JUST LIKE A NEWBORN does! If you are a mom (and well, even a dad!) you KNOW what I am talking about! Right??? It was so adorable! More and more, as the days pass by, I get so very excited about having another son. Being able to interact with him makes it so very precious, even tho we are somewhat limited. So I changed his diaper (and he decided to desat to let me know he hates it!) and played quickly with his chunky legs! Then I swaddled him back up and got ready to hold him.

He's on 30% oxygen right now. Not sure why the change upwards, but it's ok, he is doing so wonderful. This time holding him, I did not have to sit and wait for the nurse to hand him over to me. I stood at his big boy bed (yes, he was moved to an open crib again last night!) and picked him up on my own and sat down with him in the rocking chair! YAY ME! and YAY KADIN for being so tolerant of it. Donna taped his tubes to my shirt and I just sat there for the next couple of hours during and after his feeding. He only dropped his sats twice and it was for only about 3 seconds each time. I am so proud of that little boy, I can't even tell you !!!!! His face is a little swollen, as is expected being on the bubble again .... even his little eye lids appear to be turning inside out ... I know, how sad, right? But I'd much rather be worrying about that than about infectious lung secretions! Who's with me ?!?!?!

We had another firefighter outfit waiting on us from Hilarie, Preston, and Colton!!! It is sssooo cute! Hil, if you are reading this (or Preston, too) please know that we LOVE YOU GUYS so very much and THANK YOU from the bottom of our hearts for the clothes. Danny was so touched when he saw the "Daddy's Hero" one ... It means so much to us that you do the things you do! We are pulling for you guys to go home soon, although I know that means we won't be seeing you like we do now.

I didn't go to the hospital tonight because I have such a horrible headache! It started with me probably sleeping the wrong way the other night and has just gotten worse. I FINALLY broke down and took something, ugh .... which for those of you who really know me know that it is like pulling teeth to get me to take medication! I did it though because nothing else was working....nothing else meaning, trying to cure it with caffeine or rest. Wasn't happening!

So, that's all for today! I am looking forward to my visit with Kadin in the morning . . . More then.

What a little trooper we have!

2009-01-10T15:24:00.002-06:00

Kadin is doing awesome today. I pray this "honeymoon" phase this time around on the bubble cpap is an indicator that he is going to fly thru this.

He is now on 27% oxygen, which is much better than he was doing on the vent. He is so stable that they have cancelled his xrays and his blood gases for now. THAT is confidence! I have to believe that this is one of the most positive steps forward that we have yet to take and it can only get better from here on out.

His oxygen levels while on the vent were floating anywhere from 34% to 40% just depending on what kind of day he was having. The goal is 21% - room air - and right now we are only 6% from that. I am on a high right now with this news.

I brought Dakota home for the weekend so that he could spend it with his daddy so I have a lot to be doing right now while I am home. I just wanted to get a quick update on here and to give praise to God for all we have been thru with this experience. I truly wouldn't give this up for the world.

4 Pounds 12 ounces

2009-01-10T01:35:00.002-06:00

Miraculous! That's all I can say about it really. I called tonight to get an update and Kadin's nurse said he was doing very well on the cpap right now ... she also said earlier in the night that his gases were better than when he was on the vent! YAY KADIN!!!!

He is de-satting some but brings himself right back up. She also said that he is fighting mad every time she gets in his bed for anything. He's a fighter, she said. Good, I wanna hear that! I don't want my boy complacent in that bed acting like he's giving up! Got way too much of his mommy in him to do anything like that....

And yep, she weighed him - 4 pounds 12 ounces tonight. I can't believe it. My milk supply is coming back up (YAY MOMMY!) which is very good considering he keeps gaining and they keep "upping" his feeds.

I'm so impressed. I pray he continues to do well. We just may make it if he does...YAY US !!!!

It is 1:39AM and I am beat. Me and the kids came home for the weekend and I'm tired. Kinda had a stressful trip home.

More later...

A Bold Move

2009-01-09T17:01:00.002-06:00

I don't have but a minute ...

Kadin is off the vent and on the bubble cpap again. His Dr. wanted to make the move today with his lungs looking better on the xrays and him having had one full day of antibiotics in him. He has a Per-Q line in his scalp (sigh), but he will not have to be stuck over and over at this point.

Our latest call to the NICU verified that he is doing WONDERFUL as of right now. I just wanted to get that on here real quick ...

Will update more as I know more.

Infections ... plural.

2009-01-09T00:51:00.002-06:00

We talked to the Dr. again today and Kadin has 2 different bacteria growing in his secretions ... one is staph and the other is something that will cause pneumonia. The antibiotics have had a full day to target these infections and he has actually shown immediate improvement both thru the xrays and in his sats ... He did not de-sat one time while I was visiting him this evening. To know Kadin is to know that he doesn't sat routinely high or low, he is all over the place ... weird. But anyway, he looked so good tonight. He was getting his feed and sucking on his tubes ... cute. I tried to give him his paci but it didn't happen. He got mad and clamped his mouth shut! :) Atta boy ... got that stubbornness from his mommy!

I had to sign a consent form for them to insert another PICC line (Per-Q, whatever it's called!) because they had to take his IV in his head out and insert another one on the other side of his head. I understand this is being done (again!) because he is such a difficult stick. Fine by me, I don't like him having to go thru the procedures of having several IV's when ever he needs something like that...

I can't wait to see him tomorrow! I will update as soon as I can.

Night ... or is it morning??

Leslie

Setback

2009-01-08T12:24:00.002-06:00

Just a brief update before I head to the hospital...

Kadin's tracheal secretions from the culture 2 days ago have tested positive for an infection. They were about to start his IV yesterday when I got there, so I spent maybe 5 minutes looking at him and then left. My heart can't take watching him get an IV, especially since it took awhile for them to get it. It ended up being inserted in his head, which they say is a really good place - it frees his feet and hands - but still ... it looks awful. It's necessary, I understand this, but the sight of it is a little uneasy for me.

Antibiotics began yesterday afternoon. Not sure what kind we are getting but they are obviously for a broad spectrum of infections. He will receive this one until the "bug" is identified and then a med to target the infection will begin.

I know these are all aspects of the life of a 24-weeker, but I am ready for him to flourish. I just want to see him "ok" ... I know he will get there when he is ready, so I just keep plugging along patiently.

He now weighs 4 pounds 6.2 ounces! They sent home some of his preemie clothes saying he looks like a tootsie roll in them! :) So I guess it won't be long and he will need newborn clothes. YAY, shopping time! We went to Babies R Us over the holidays (to look at carseats and pack 'n plays) and saw some really cute clothes there.

That's it for now on how he is doing. I am not feeling well ... very very tired and my body just doesn't feel right ... not sure what is going on there, but I have a good guess. It isn't "sickness" or anything like that, but still ....

More later when I know more ... Have a great Thursday!

Letting A Few More Days Go By

2009-01-06T17:06:00.003-06:00

So it's Tuesday ... and I am having a hard time sometimes with keeping up with what day it is exactly. It's probably because of us having just got off of Christmas Break. With the kids home, we did the very same thing every single day. Wake up, eat, go to hospital, go home, eat, read, play games, go to hospital, eat, bed, lol ... Every single day! I'm sure there were a few variations, but the past 9 weeks have flown by for me when in the beginning I could not see how I would even make it the first week. Strange how our hearts and minds can become adjusted to such volitale situations and make it work. I never imagined being able to cope in an environment where there is such unexpected changes as often as is in the NICU.

Things have pretty much been the same for the past few days. It's the same road with different scenes now and again ... JT has gotten to spend more time with Kadin and even Robbi has gone in a lot more lately with me. Kota will be seeing and holding Kadin FIRST when the time comes since he has never gotten to see him.

We are still on the vent but he is putting on good weight. Currently, he weighs 4 pounds 5.1 ounces. His feeds have been increased again. I am thinking they increase it due to his weight. He is on 34 mls and is about 16 1/2 inches long. I helped measure and weigh him the other night when Kimber (way cool RN!) was on duty. That Cadillac of a bed is fabulous!

I was able to hold him yesterday with JT in there with me. Kadin did very well. I helped with his breathing treatment also. I held the vibrator on his sides/chest to help break up the mucous in his lungs. Dr. Porter said that it isn't really fluid, it's more like mucous from his body fighting the vent being in there. They have taken a culture (again) of the lungs secretions to see if he is getting another infection. The nurse tonight told me his secretions were a little yellow now, but that he is not acting sick. Not sure what they will do about it except give him antibiotics again and wait it out. Dr. Porter will be gone on about the 14th, so we will have to become adjusted to another Dr. at that time.

There's not really much else to report on him at this time. He is really growing. A nurse that had him when he was much smaller (and who I can quote as saying her paychecks were not nearly big enough for the butt-whoopings he gave her while she was his nurse!!!) had him last night and tonight and commented several times on how big he has gotten !!!! He really is growing ... I'm just more ready than he is. It's been 9 weeks now .... can you believe we have endured this for NINE weeks? Again, I'm ready to get off the ride.

I think I wrote about the eye exams. Something about the zones and stages and something something ... I'm not a Dr. but I understood the basics of what he told me. I will let you know when he has his next exam and what the results of it are.

For now, I'm going to pass out in my bed and TRY to rest. JT went back to Breckenridge today and we miss him terribly.

Buenos noches .......

Leslie

Our Visit With the Dr.

2009-01-03T13:21:00.002-06:00

I am both discouraged and encouraged with our discussion with Dr. Porter last night. Sometimes when I think I have all the hope and faith in the world, something is said or our baby makes a turn that kind of deflates that a little for me. I am not sure what to make of everything that he says, but we just roll with it. I have to admit, though, that some of it makes me a little uneasy, but regardless, Kadin is our son and we love him, now and always.

First of all, they were able to ween him down on the vent yesterday morning and when the Dr. came in last night, he weened him a little further. He is on a rate of 36 breaths per minute from the vent and from watching him last night his settings indicated he was breathing over the vent twice that. As long as his pressures are ok, he does fine, even with the fewer breaths from the vent.

Kadin is now weighing 4 pounds 2.3 ounces. He has meds last night again to pull off the fluid so he didn't seem to increase as he has been the past few weeks. He doesn't look puffy or anything, but the fluid in his lungs is still present.

The goal, as has been this entire time, is to get Kadin off the vent and back to the bubble cpap. After that, the goal will be same ... getting him off the bubble cpap and onto the nasal canula. Then, as pattern has determined, it will be to get him off of that with no extra oxygen! We are only 8 weeks from his due date and that seems like quite a LOT to get thru. I am having doubts about our coming home date and that is driving me nuts. I guess it's fairly common for the Dr.'s to not be able to tell you anything definite about that since it all depends on how the baby will do. He does well, he just doesn't breathe well on his own, which is absolutely to be expected being born at 24 weeks. As the lungs grow, the old lungs are taken over by the new, but it will never be like new healthy virgin lungs. Should we have to stay here longer than February 23, I pray I will have the strength to do it. I am trying to stay positive of it all and believe that he is one day going to all of the sudden just take off and show us all !!!

He had his eye exam on the 1st. He is scheduled for another one a week later. Dr. Porter said there was an indication of ROP but it will be monitored extremely closely. I can't go into details about everything he said because, although I understood what he was saying, I don't know how to articulate that back to everyone else. I do know that Kadin is at level 2 in his retina development and can stay in that level for a long time. He is also in stage 2 of level 2. There are stages 0 to 5 with 5 being retinal detachment. It is not uncommon for a baby to get to stage 2 and regress back to level 0 and be perfect. This is why they will monitor him very closely. If he progresses to a higher level, he will be a candidate for the laser surgery to correct the retinal issues. I asked him if any of that meant he will not be able to see and he said "Absolutely not!" He said it really doesn't affect acuity since they also closely monitor the levels of oxygen that the baby receives. He said it could possibly affect his peripheral vision but that won't be known until later ... So, we are waiting now for the second eye exam and will know more about that later.

He looks so adorable in his bed dressed in his clothes! We have sssssooooooooo many clothes for him now (Thanks to Kirsten/Joshua and to Hilarie/Preston!) I love to see him dressed in his clothes. He is keeping his temperature steady also, but is still in his isolette (with the top up) because it drowns out the noise enough that he can rest well.

Kadins calorie intake has been decreased ... they took most of the human milk fortifier out of the composite and he is still gaining weight! His stools are much better now tho he still has them very frequently. I am still pumping, but with our trip home, my milk decreased a little. I have not been able to build it back up as of today. I pray it doesn't dry up.

Insert Random Thought: My little man just asked me for a "Popper Pepper" ... even tho he is 7 and perfectly able to say "Dr. Pepper" ... he still calls it the same thing he did when he was small. And of course, here is his big brother sitting here talking about what he used to call it ... ROOT-ROOT. Yeah, not sure where that came from but it has stuck all these years. Robbi never cared for it much so there isn't a word she called it. She still prefers water to anything!

I can't think of anything else to update on Kadin right now. Really, other than what I have written about, nothing has changed much. He is just resting and growing. I can't wait to see him today. JT saw him for the first time since he came for a competition in November and he can't believe how big he has gotten.

So ... until my next blog, be blessed and if someone has done something nice for you today or recently, pay it forward. The results are heartwarming and inspiring!

God Bless .....

Missing Our Baby

2009-01-02T01:32:00.002-06:00

I don't know how we had the strength to leave FW for a night, but we did it. NYE we traveled home to see family and friends and I must say it was a very emotional time for me. I had not been home since October 27, 2008. I did not really want to come home, but for several reasons we decided a quick trip home would be best. Saying good-bye to our son on Wed. was so difficult. I know he has no concept of time or that we are going home, but it killed me to leave his bedside that day. It was one of the few times that he was really awake and looking at me and responding to my voice and touch. I felt it was as if he was telling me it was ok to go home ... I had said I was not going to come home until I could bring him with me. I knew entering our home would be more than difficult for me. Since Danny and the kids had been home before during my stay in FW, it was not as difficult for them. I entered our living room and broke down. I never dreamed it would affect me so hard. And now, I don't want to leave. My whole world revolves in these walls and we have so many memories here in this house. I am just more than ready to bring Kadin home and begin the rest of our lives.

Robbi had a bunch of friends over for NYE. One of her buddies, Eddie, walked in the door and was sssoooo surprised to see me. He gave me the biggest hug and I cried like a baby. He kept giving me hugs all night long, bless his heart. I just love that kid. I knew when all the girls arrived because the screams were probably heard for blocks! Since we are not far from the sheriff's office, I figured someone from there would be visiting us soon! Anyway ... we rang in the new year with my sister and nephew and all the kids outside! JT is with us also, which is really nice since he is such a busy teenager and we don't see him as often as we would like. Everyone else went to bed but Dakota decided he wanted to try to see New Year's Day thru the end, lol. We argued about it for a little while. I won! YAY ME! Robbi stayed with Anna and tonight at 11PM is the first time we had seen her since then! I don't mind as long as she is happy and having fun!

I was so draggin rear this morning though when Joe called to get Dakota. Since Dakota had been up til past 3 (well ok, arguing with mom about not wanting to sleep!) getting only about 4 hours of sleep was not near enough for him ... or me for that matter, so he slept until about 9:30 and got up. Joe got him a .22 rifle (Davey Crickett, it is the cutest little thing!) for Christmas so every chance that he gets, he takes Dakota to the gun range. Dakota has been asking me if I will go watch him shoot, so today was that day. JT and I went to the gun range and had a great time. We all took turns hitting the targets. It was great fun ... I forgot how much I loved to shoot. I had not done it in a long while - maybe about 12 years! JT's grandpa taught me how many years ago. Every chance he got, he took me outside for some target practice and actually said I was the best aiming girl he had ever known! Quite flattering for him to say that ... never lost my eye, either. Dakota lined out the ammo ... 2 for his daddy, 2 for him, 2 for his bubba, and 2 for mommy ... but somehow it ended up being like 8 for Dakota and one here and there for the rest of us. It was good fun. We really had a good time.

After that we went to my folks house - THANKS FOR THE COMFORT FOOD MOM! I have not seen my mom in a couple of months either. It was emotional to put my arms around her tiny frame. Of course, my sister is just that ... MY SISTER! She is a nut. She and Cam are living in our home to take care of it til we come home and we are sssooooooooo grateful! I woke Dad up from his nap to get a hug. I guess overall, shedding all the tears in the last couple of days has been good for me. I sense it has given me strength to endure the next 8 weeks. I little touch from home may have been just what we needed. Mom made us baked ham, black-eyed peas, corn, mashed taters, rolls, bbq little wiennies and omg a CHOCOLATE CAKE ...my downfall. I drank my first DP in several days. Trying not to do that.

We are about to get on the road in less than an hour. JT is going to a Texas Tech game with his dad tomorrow so he will be picking him up at our suite. I don't want to have to go back to life as we know it there, but for Kadin, I will do ANYTHING. I can't wait to see his precious little face again.

We have called several times since we have been home and there have been no real changes for him. He is now 4 pounds 0.2 ounces and tonight he was weened on his pressures a little bit because his gas came back EXCELLENT! It's what we have been waiting for. Kadin is the King .... he runs this show so we just have to wait on him and take what we can get. I can smell him even now.

We have hopefully good things in store for Danny tomorrow, but I will write about that later. Right now I have to go extract the liquid gold and then get on the road. Happy New Year to my family and friends . . . . .

Leslie

Disappointed

2008-12-31T00:21:00.002-06:00

So ... today was one of those days.

I walked into NICU and found my son back in an isolette! What? Oh man ... *sigh* ... ok.

He had a bad night. He had the Brady yesterday while Robbi and I were there. I wrote about that. Well, apparently, he had 3 more in the night and had to be bagged at least one more time. Crap!

They were beginning to think the reason that he was doing this is because he was not being able to keep his body temperature up by himself. It takes some getting used to being out of his little cave because once he is exposed, he gets all the noises of the nurses, Dr.'s, monitors, parents, etc.... And he just wasn't able to handle it.

The nurse told us that he has been his fiesty self again since he is back in his familiar bed. He got his bath tonight ... at least he was strong enough for that, and I'm glad! They had him dressed in the cutest little onesie outfit ... footballs all over it!

The Dr. called me first thing this morning to let me know that Kadin had to have some blood this morning. They went up on his vent rate and a pressure or two, but other than that things are ok. He had too much gas in his tummy and will do another test on Thursday to check that out. I just hope none of this is leading to any type of major setback for him.

When Kadin was first born, one of the nurses encouraged us to put Danny's wedding ring on his wrist. It fit his arm like a pinkie finger fits a wedding band. Tonight we thought we would try to put the band on his wrist again, but WOOPS! lol He has grown so much it would not even fit anywhere near going over 3 fingers! yeah, can you believe that ???? So we will have that picture when the camera is full. (disposable) I can't wait to see all the pics on there !!!!

I am exhausted. I am trying to get my sleep pattern back again. Since the kids have been out of school we have stayed up later and later every night. I got really bad and stayed up til 6:30AM the other morning! OMG! I am so paying for it now. JT is coming Thursday and I can't wait! I miss my oldest baby sooooooooo much !!!!

Will try to update more tomorrow ... until then, keep us in your prayers !!!

Leslie

Another Day or Two Down

2008-12-30T12:13:00.002-06:00

It gets a little stressful worrying from day to day how Kadin is going to do. Believe it or not, when the Dr's and nurses tell us he has done really well, I am surprised. I guess I think like that because from the beginning we were told to not get too excited and not to get too upset by the news that we would get every day ... it's a rollercoaster but you have to save your emotions. I would be a basketcase by now had I allowed myself to follow thru with what my emotions dealt me every time. Some days it is overwhelming but then I go in his unit and see him and I totally melt inside. I love that little boy so very much. I know in the end he is going to be just fine ... I have always had the faith that he is exactly what God has intended for him to be, his is perfectly made, he is such a blessing already, and my love for him could not be stronger.

It seems a lot of things are weighing on me heavily right now and the stress of it all has to go. I can not worry about those things or the people that I can not control. I have had a lot of revelations about my life in the past week or so. I have been able to put some of it in perspective and some of it ... eeehhh, still working thru it. I say that to say this ... It has made me stronger. It has helped me to know my focus in life has been and always will be my children. Everything I do, I do to try to better their lives. I have failed a lot and I don't make excuses for those failures, because I failed while TRYING. I continue to do all I can for my children even today. They are my world.

I am really looking forward to the day that we can take Kadin home. I look back at his pictures and see just how much he has grown. I have found it very encouraging that I stayed positive about his survival. I know at times it wasn't certain whether he would make it, but I never gave up hope. And I never will ....

Kadin's night last night didn't seem to go very well. The Dr. said they had to go up on his rate a little bit because of the CO2. His is staying very gaseous and his tummy had a LOT of gas in it in the xray this morning. This is causing the Dr. to make some changes in his feedings. He is ordering more meds to take the water off of him, since his lungs had more infiltrate this morning. He did Brady for quite awhile last night while Robbi and I were visiting him. She asked me what the nurse and the RT were doing to him ... I simply whispered, "They are saving his life." I tried to shield her as it happened very quickly, so she didn't see everything going on but she could tell things were moving quickly and it was necessary.

I was going to help with his bath last night also, but after that, we put the bath on hold. He would not have tolerated that very well. I will just be glad when he is out of this immature stage he is fighting thru ... all part of the premature birth.

He now weighs 3 pounds 13.4 ounces. The Dr said this morning that he has gained another couple of ounces but I am unsure if he meant at that weight or if he is not closer to 4 pounds. The added calories has helped in that department! But again ... weight gain means nothing if the lungs won't function. Dr. Porter was going to try to extubate him but again, he isn't ready. I don't want him to go backwards and with the extra air in his tummy, the cpap would not be a good idea. He would fail.

I am going to get ready to go see him now. I have not seen much of my husband with him looking for a job. He has several good leads, but nothing definite yet. I am sure you will all know as soon as he has a job!

More later ... (see new picture to the right!)

Leslie

No Real Changes

2008-12-28T12:20:00.001-06:00

Kadin is still doing ok, no real changes as of this morning. He did not de-sat or Brady like he has been, but I will attribute that to the pressures being raised yesterday. Those really need to come down before he will be moved to the bubble. I am in no hurry even tho the vent is not good for him but the Dr. wants him off as soon as we can. They tried decreasing a couple of his settings yesterday but he wasn't ready.
I was able to hold him last night for about an hour. He is being fed on the 8, 11, 2, and 5 schedule so if I want to hold him I have to be there an hour before his feed (or just as his last feed is ending!) in order to hold him. He gets his feed over a 2 hour period because so much fluid in his body at once was giving him problems. This leaves just one hour for him to digest the food which is the hour that I hold him. Everything is so time sensitive!!! lol But he did well thru the hold and only had a couple of times he showed some distress. Just getting to hold him for an hour does wonders for me. I love looking at his precious little face, watching his every expression, feeling him nustle up into my arm and squirm all around. It puts me on a high that I won't forget - he is addicting!
He weighs 3 pounds and 11.3 ounces. Yep, he is just shy of 4 pounds already, but like the Dr. has told me ... it doesn't matter how well he gains weight if his lungs are not going to function! MMmmm...true. I pray his lungs continue to grow and mature in the manner that they need to so he can get off that stinkin vent!
I can remember reading other mommy's blogs about their journey with their preemies and reading how their baby was about to hit the 3 pound mark and thinking to myself "My gosh, it will be forever before we are there!" But you know what ... it wasn't. Time has flown by it seems in some aspects and look now, he is almost 4 pounds! He seems to gain anywhere from 2-3 ounces every day, which is very good.
Other than all that ... nothing new. Kirsten is coming thru FW today and bringing us some preemie clothes !!! I am so excited to see her and get the clothes for Kadin! She will be here around 3, I guess. Maybe I will have a picture from the visit!

Tonight's Update

2008-12-27T00:59:00.003-06:00

We went to our evening visit tonight. The night shift is a little bit slower-paced than the day shift so I enjoy just getting to go sit by Kadin's bedside and watch him. I have not been able to hold him in about a week because he has bad days still and then when they bathe him or do any kind of procedure, it wears him out. I am ready to get to the point of getting to hold him when ever I want to and him being ok.

Our nurse had him dressed in a little animated dragon outfit, it was sooo cute! I think he looks fabulous in green!! He was on his tummy and doing ok. They were going to extubate him today but he was not doing well enough on the vent. The RT's looked at his history of the last couple of days and made some adjustments because he was de-satting, and decided to go up on the rate and increase some of the pressures, so this was considered in whether or not to put him back on the bubble cpap. I talked to one of the RT's tonight at my visit and he asked me what I thought and I said I didn't think it would have been a good idea to take him off the vent and he was glad I felt that way, because he said Kadin was clearly not ready. I have been told sometimes parents get really upset with the staff when they don't follow thru with something they say they are planning to do. I don't get that, but ok ...

They were adding the lipids to his breast milk. It's all a strange concept really but they are reducing his breast milk feeds by one ml, adding the lipids (1 ml) because the milk actually put too much fluid on him so the lipids will help do the same thing that the milk does but with lesser volume of milk. Get it? Me neither. Ok ... next.

They did not move him from his isolette to a big bed because with him still on the vent, it is a 3 person job to weigh him, so we are waiting. Either way, he is in a bed that is open. He is adjusting to all the noises he can hear now. It is much quieter in his little cave with the top closed than with it open, obviously!

I have had a headache all day long. I am unbelieveably stressed and it isn't getting any better. My head has pounded all day. I think I am getting a migraine. It's not good for the pumping as my milk supply will decrease some. I just want to go home with Kadin and have my life back. I think it is FINALLY weighing on me.

Have a good night.

Leslie

Fancy New Duds

2008-12-26T18:03:00.002-06:00

Our baby boy is so precious. They have begun to dress him in real clothes. He is no longer laying in this bed in just a diaper. It is so precious to look at. I can't believe he is finally "looking" like a little baby. His face is full, he is gaining so much weight, and he is beginning to grow longer. His breathing is still causing him a little trouble, but that is somewhat to be expected. I am ready for him to be breathing on his own, but since he was a 24-weeker he will probably have a little trouble with his lungs. They are still cloudy and so they are giving him diuretics to pull the fluid off. His hands look much better than they have been looking but the lungs is what we are concerned about. His rate is way down from what it was the other day, but I think the nurse said earlier on the phone that they had to turn him back up. He has had to be "bagged" several times in the past few days, which is not really good, but a lot of that is caused by the mucous and moisture in his lungs. Also, that tubes that carry the air and oxygen to his lungs have to have some humidity so the water will sometimes pool in the tubes and drip down his lungs .... it has a drowning effect, which is also not pleasant and he will stop breathing. So, although the vent is good for him and absolutely necessary, it has it's bad points also ... just like most everything else in this life.

Isn't he cute in his clothes? (see pic to the right!) I think he is precious!!! He is close to 3.5 pounds now but I don't have an exact weight. I usually get it at the evening visit. We will go there a 8 every night and they will have it from midnight the night before.

He is being moved (if he hasn't been already) to an open crib. They are clothing him and swaddling him in blankets so he is able now to hold his own temperature, which is a very good thing. This meets criteria for the checklist for going home! They have had the top popped on his isolette for the past few days to see how he does, basically to prove himself. They nurse told us earlier that he would get his own open crib at some point today. That means we will get to decorate his bed a little more to personalize it for him.

The Dr. ordered something to be added to Kadin's breastmilk. I can't remember what it is called, but it gives him added calories and they reduce his feeding by one ml. Supposed to put some fat on him I guess. He is already looking a little chunky to me! But ok ... Dr. knows best I guess. He also talked about putting him on the bubble cpap again in a few days but I'm not certain he is ready for it. He is barely breathing over the vent right now. I am not sure if he is just enjoying the breathing for him or if he really isn't capable of breathing like he needs to do. Either way, I guess we will see when the Dr. makes that change.

Dr. Porter is leaving us! I may have written about this, but he will be leaving mid-January and it saddens me a great deal. He is awesome and we have gotten pretty close to him. He will be going to Indiana! Now that I write that I think I have written about it before ....

Anyway, we will truly miss him. I am not sure I want anyone else to take our baby but it will happen.

Kadin is scheduled for an eye exam next week. This will determine if he needs any type of laser surgery or not to correct the growth of his eyes since he was born so early. I have read and been told that the 24-weekers are usually the ones who have the most trouble. I pray he is ok, which some babies are just fine, but I pray that if he has issues they can be remedied. He may have to have glasses when he is young, but that's ok ... he was doomed with that anyway!

I can't really think of anything else to talk about. The more sensitive subjects I write about are on my myspace. I try not to interject that material in over here, lol ... but sometimes I fail. Sue me!

Have a great night ... and Happy Upcoming New Year.

Leslie

Thru the Breathing Treatment

2008-12-23T01:02:00.001-06:00

Christmas is near and I am not ready for it. I mean, I am, but I’m not. I am so thankful that we are together as a family, but part of my family is missing. I am used to spending Christmas with my folks and my sister and nephew, but it won’t be happening this year. It is something we have all come to terms with and are looking forward to next year’s Christmas when Kadin will be ripping thru everything and we’ll all hopefully be much better …
Today’s visits were good. We went to the hospital and I spent a lot of time in the back talking to the RT (Debbie) while she gave Kadin his treatment. She let me use the vibrator on his back and sides while she gave the treatment. The vibrator I used on him was very small and irritated my hands having to hold it. He squirmed and got mad and moved all around. After a few minutes I put my left hand over his head and he calmed down. Amazingly, small babies love for you to put your hand over their heads like that….they want to be “cupped” with their head and their bottoms. Its so sweet.
Kadin has become very active. They had to give him Versed today to calm him down because he was so active. They say he is a very fiesty little boy and that he is going to give me a run for my money when he gets out of the hospital. I say BRING IT ON !!!!! He was so active tonight that he was on his tummy and actually turned his head over the other direction … this is a big NO-NO for babies on the vent! The nurse noticed his monitors going off immediately and went to his bedside to see that he had his vent tube bent in half cuz he was turned the opposite direction that he was laying … oh boy!
We visited him again tonight for just a moment and he was still a little fiesty even while on the Versed. He has started to breathe over the vent now, but not by much. With every blood gas they take, he is able to be weened a little at a time to finally get him off the ventilator. His infection has began to clear up with the antibiotics and so he is feeling much better, this is probably contributing to his being so active these days.
He is to an age and weight that he can wear clothes now, but we have to wait until he is off the vent again before we can dress him. It is so difficult for him to be clothes while he is on the vent. I would personally like to see him grow a little before I begin trying to put clothes off and on all the time. They said he is very good at making big messes in his diaper area, lol … so he would have to be changed all the time. I don’t know … I want to see some clothes on my baby but as long as he can be kept warm in his bed without the clothes, I guess I’m good.
The little toot is weighing 3 lbs. and 4.9 ounces! Can you believe that? He is unbelievable! He grows more and more everyday. All the nurses have told me not to be surprised if he loses some weight here and there, but even with meds to pull the water weight off of him, he has never gone down in his weight! It’s amazing!!! He is just an exceptional child … and that is not bias, that is fact! J I was holding him yesterday and talking to him. As I did, he would open his eyes and I could see a little color in them. They were beautiful blue like his daddy’s … of course, they can change as he grows, but still … I was hoping he would have his daddy’s gorgeous eyes. I can’t wait to have his pictures made before we come home. That is one of the things that the hospital does for you … just like a newborn picture, except he will be a few months old already!
I don’t know if I have mentioned this before or not but he has a hernia. His intestines have fallen down into his testicle sacs and they have to be pushed back into his lower abdomen area with every diaper change. This is going to require surgery before he comes home. They told us it is a quick couple of stitches to sow up some space where the abdomen muscles have not developed completely at his 24-week birth. It isn’t causing him any problems but if it does, surgery will be required immediately. So far, he has not had any issues, Thank God!
Other than all that … nothing else has really been going on with him. He certainly keeps the nurses and RT’s on their toes. He doesn’t want to be forgotten.
I think I am going to bed now. Good night and God Bless . . .
Leslie

Draining Visit!

2008-12-21T20:06:00.001-06:00

Let’s see … where are we on this roller coaster of life with Baby Kadin ???
Sometimes I have to gather my thoughts and keep from repeating a lot of what I’ve already written about.
So, ok … his lung secretion culture was positive for some type of infection, but they caught it soon enough and gave antibiotics early enough that it didn’t get bad. Today they changed him over to an antibiotic that really targets that type of infection and he is doing better now. He will remain on this med for 7 days.
I have been able to hold him several times for the past few days and it is such a WONDERFUL feeling. I love looking into his little bitty blue eyes and talking to him. He moves around and reacts to my voice. Today when I was holding him he opened his eyes as soon as he heard my voice. He kept them open and looked all around at my face. It was so precious. He doesn’t do that when he is laying in his bed.
But towards the end of the time frame when he usually gets tired, he had a little spell. The respiratory therapist was there talking to me while I held him. She and I have become great friends. All of the sudden, his sats dropped down to very low numbers. He actually made it down to about 32 when his normal range is from 83 to 95 … It was scary. She finally whisked him out of my arms and bagged him for him to “come up”. He responded well and when it was over she and the nurses commented on how proud they were that I stayed so calm like that. I had never been in there when they had to bag him, but it’s serious business and I just stood there watching, knowing in my heart he would come back up. This all started when he was turning beet red from grunting … like he was making a surprise in his diaper. But when it was over, he turned blue and I told her, “I’m not liking this” while she tried to get him to respond to her. She made the comment that a lot of mothers jump up and run from the NICU when something like that happens to their babies, but you can’t do that … you can’t run at home! So I was proud that it did not freak me out and that we just did what had to be done to get him back up. They even told Danny later when he went in to visit that I was a real champ thru it all … that made me feel good.
Overall Kadin is doing well, but he still has a long way to go. We are waiting for him to be strong enough for his eye exam and to get put back on the cpap. He can’t stay on the vent forever. It isn’t good for him but his settings are fairly low so we are just waiting for him to grow a little and get stronger.
We are going back to see him in about half an hour. It is a nightly ritual to go as soon as the unit opens at 8PM. The kids get tired and bored but they knew before they came that this was part of our life for now. They understand, but I know they get tired of it …..
Thanks for your prayers …. We need all the prayers we can get. Especially for my patience in our little bitty kitchen, lol …. Not really but it takes some getting used to, that’s for sure!
Merry Christmas Friends and Family!

Trying to not let the emotions drown me in my own tears....

2008-12-18T16:43:00.000-06:00

It has been an emotional day. I am heart broken seeing my little baby lifeless in his bed. The nurse told me a little while ago that Kadin does have an infection but we dont know where just yet. They took blood samples and a sample of his lung secretions and they are testing it all to target the infection. Antibiotics are already established but I'm a mess over it ... he just looked bad. He was on sedatives to keep him calm ... please keep praying.

Back On The Vent We Go! :(

2008-12-17T20:27:00.000-06:00

I realize I have not written or even really updated anyone in a week. I have been extremely busy with my family here. We have a pretty good routine down now. I decided I better update everyone so you all can still be praying for us … I just got a call from the Dr. on call.
Dr. Barber called to let us know that he had to put Kadin back on the vent a little bit ago. He has been having some touch and go episodes the past week and the Dr.’s have just been trying to let him work through it, but the last episode he had he almost did not come back from so they put him back on the vent. I was disappointed to hear it but glad that he is at least getting a little bit of a rest now. He is fighting so much to live that he is worn out. He is strong willed and very stubborn, he hates it when the nurses get in his bed and mess with him, and last week he did not even tolerate the occupational therapist looking at him to make sure everything is working correctly.
Overall for the past week he has been kinda weak … He has had what they call Brady’s, which is apnea to make it short, where his heart rate drops, he de-saturates, and you have to work at getting him to breathe again. It’s scary … he’s done it in my arms more times than I care for him to do it, but a rub on his sternum brings him back usually fairly quickly.
So, we are headed to the hospital in a few minutes to see how he’s doing. We are both kinda upset because we thought he was coming along fairly well … I guess he’s tired and needs a little rest. He did much better on the bubble cpap this time than he did before, lasting 2 weeks this time and only 36 hours last time…
Kadin is doing well on his feeds. He is taking in 26ml of breast milk, which is 4ml less than one ounce, so he is getting ALMOST 8 ounces a day. Each feeding is given over a period of an hour and a half. He only gets about an hour and a half break before they start another feed for him. I have been able to very interactive with him this past week, changing his diapers, taking his temperature, helping with his bath, helping with the changing of his bedding, and my favorite, HOLDING HIM! Yes, I have been able to cradle hold him a few different times this past week and I really love it. The nurses tell me I am a good incubator, he actually gets too warm in my arms. He does well in my arms though, his sats don’t go down like they do when he is in his bed and everything about him stays stable…He loves to hold hands, too. It’s precious. One thing about him being back on the vent is now we will be able to see his little face … You can’t really see it with his bubble cpap stuff on and he stays so swollen. He had a bloody nose from the nose prongs today - I didn’t like that very much.
The kids are doing very well in school. They love it. They will be out this Friday (early release) for Christmas Break. I am looking forward to not having to get up so early since they go to school earlier here (Robbi has to be there before 7:20AM). I think they go back on January 5th. It will pass all too quickly, I know …
Well that is basically my update for now, I have to get to the hospital. I have more to blog about but will write it in another blog … Please pray for us still … we have a long way to go, and Danny still needs a job. I am really worried about bills right now but am leaving it all in God’s hands because I have done all I can do at this point. Say a prayer for us if you will … I appreciate it.
By the way, before I go, just wanted to say I posted a bunch of pictures if you are interested … I have more to post but they are on my camera and I have not taken them off of it yet. I will try to do that tonight. Have a great night family and friends … we love you all!

Love Always,
Leslie

Moving Right Along

2008-12-08T23:38:00.001-06:00

I am starting to slack off on my writing. I attribute it to the constant flow of things that I have to take care of, but I am not used to having to rethink several days in a row to give an update. So, I will just do the best I can and go with the flow ….
There is not really much to update on Kadin. He is doing so wonderful. He was moved to the bubble cpap and struggled for the first day, but he has done so very well since then. He did test positive again for an infection but the antibiotics were administered soon enough that the infection was already battled before we knew for sure even had one. As I have blogged about before, his little face is swollen from the pressure in the cpap and we can’t see much of his precious little face, but that’s ok as long as the cpap helps him breathe on his own and matures his lungs at not such a harsh rate. Being off the vent is just about one of the best things he can do, and I am so proud.
I can’t believe how big he has gotten. I know his size is a little distorted because of him being a tad bit swollen, but he really has visibly grown. He is now 2 pounds and 3.2 ounces, which just amazes me. He is taking in nothing extra right now, only my breast milk. I thought I was slowing down on production, but I just started drinking a bottle of water every time I ate and every time I sat down to pump and it seems I am producing a lot more now. Thank goodness !!!! I never realized the importance of the liquid gold until I had a preemie. It helps them so much to build the resistance to sickness and infection. I never realized my life could revolve around a little yellow machine !! J
My family made it on Thursday night, actually it was after midnight on Friday morning, but they made it safely here. I was so glad to see them. They were so excited to be here and kept telling me so over and over. We went and enrolled them in school on Friday. Everyone we met was so very nice. I think I was more nervous than the kids were. I have moved before, several times, and I just don’t want my kids to ever feel like I felt when I moved. Of course, they were not forced to move this time and they both know it is only temporary, so that makes things much easier on them I think. They have expressed so many times how happy they are that they are here and that we are together, which makes things much easier on my heart. It is a little stressful being in this small room with everyone. You don’t really have your own “space” but that will change soon when we get another room for a family ….
The kids’ first day of school was today and they did so well. Robbi has to be there fairly early. School for her begins at 7:20 so she needs to be there a few minutes early. Then she gets out at 2:50 and she really likes that a LOT. Kota has to be there about 7:45 and gets out at 3. So Robbi goes to school first and then I wait a few minutes and take Kota. His school is just down the hill from hers so picking up and dropping off is a breeze. When I took Robbi she was so nervous. She would not even eat the breakfast that they brought into the office for her, but everyone was so wonderful and amazing with her. When I picked her up, she came out grinning. I was laughing so hard cuz she walked past a young guy at the front of the school and he waved at her … she waved back. Then she saw me smiling at her and gave me that “STOP IT MOM!” look. She told us all about her day and how all the kids were “fighting” over her when she went into the rooms … they all wanted her to sit by them. They even told her how pretty she is, how they loved her eyes and her hair, etc …. it made me feel so good for her because she thinks she is not beautiful at all. I think she is just GORGEOUS and maybe finally after today, she feels it. She had so much self-confidence today and I was so proud of her. She had a little trouble with her locker. It has a combination lock on it and I had to help her with that. Took her in the school and made her do it 3 times. She was successful but now tonight here in the room she is doubting herself and wants me to write it all down.
Kota’s first day was also great. I actually had thought Robbi would have a horrible day and Dakota would have an excellent one, so when I learned that Robbi’s was great I thought poor Kota probably had a bad day … could it be possible for them both to have excellent first days ??? When I took him in this morning to the commons area, a bunch of little boys in his class kept saying “My name is So -n- So” so he knew the names of like six little boys before school even started. I left him there with his class and told him I loved him and to have a great day … so after school, we were parked outside waiting to get him when we spotted him walking out. He was hand in hand with his wonderful teacher, Mrs. Branscomb. So I got out and started towards them when he saw me and gave me the biggest grin ever! She bent down to give him a goodbye hug and then I just gently touched her arm to tell her thank you for helping make his first day a wonderful one and she grabbed me up and gave me a huge hug! That was awesome …. Several of Robbi’s teachers have offered anything they can do for us and I just feel so very blessed by their generosity and sincerity. It makes things here much easier to handle when I feel I don’t have to worry about them so much at school. Dakota told me tonight when we were riding around looking at Christmas lights that I did not have to walk him in to the school tomorrow and when I questioned why not, he said cuz he was a big boy now and he could do it himself. AAAWWWWWWWW ….. I just don’t want him to grow up. He is such a sweet heart. All my kids are sweet, very well mannered, and loving. I could not have asked for better children ever.
I stayed in the room tonight to help the kids with homework and stuff while Danny went to the hospital to visit Kadin. I have been there many times by myself, and I just thought I would stay behind and let him go have some one on one time with the baby. He let me know when he was done that our baby is possibly going to be moved to another room tonight. He is currently in Room 4 and would be moved down to Room 3. With each “move” you get closer to going home …. If you get to Room 1 you know going home isn’t too far in the future for your family. I can’t wait to get to that point. I am ready to go home, only when Kadin is ready and not one minute before. So Dr. Karimi said she was going to monitor him a little bit longer tonight and then possibly move him, but that they did not want us to freak out if we called and he was no longer in the room we always asked for. They also need to make room for more babies … I hate to see so many babies needing help, but am so glad we are no longer the sickest of the sick.
JT has a cheering competition in Garland this Sunday. Not sure if I will be able to attend or not. I did see where we could view it live on the computer if we can’t make it, but it is right here close, so I would love to be able to go if possible….
I am posting my favorite picture of Kadin from today. He was sticking his tongue out a lot during his feeding today and I could not resist snapping a few pictures. Of course, this one I loved particularly for the position of his hands …. Isn’t he looking a little chubby ??? He is so precious! Danny and I heard him cry for the first time last night. That’s right … 34 days old before we heard him cry. I melted. I was a bucket of tears. I could not believe how many emotions that stirred, but it made him seem more “real” instead of our baby that we go see every day several times a day and get to hold once in awhile. Diaper changes are fun too, especially when he showers everyone! Ha ha
Well, it’s late and I’m tired, but I have to get my thoughts and such down before I forget about them all, plus I have to let all of you know what is going on with us … please continue the prayers for Kadin and our family, that we may continue to have the strength to get to the end of this peacefully …. And that Danny will find a job soon so we can keep our household running until we get back to it. Thank GOD for the Ronald McDonald House. I never realized just how much this type of organization helped families in our situation. Life for us has drastically changed and I am proud to say I will never be the same … I am printing out my journal entries so that one of these days Kadin can look back and read about it and know how very much he was loved and how much others prayed for his little life …… I truly am eternally grateful for everything you all have done. God Bless You!
Love Always,

Leslie

Changes for Us

2008-12-04T22:40:00.003-06:00

We have had a very busy week. First of all, my family left and that almost killed me. I will write about that in a little bit, but after they left, I have been making phone calls, doing this, doing that, trying to keep up the pace with all I need to do and still manage to pump every three hours! Ever tried that? I doesn’t work very well some days. However, I’m working on it all slowing down a little bit ….

At the first of the week, Kadin wasn’t feeling very well. A blood culture came back positive for an infection, most likely from the PICC line he had, but upon the test results, it was removed and his white blood cell count has gone way down now. He is on two different antibiotics and doing well.

The last couple of days did not go so well. Every time I went to visit him, just walking to the side of his bed made him de-sat and stop breathing. It was frightening for me and while I shouldn’t have, I took it personally. It happened twice when I went to see him. They would have to rub him on his back to stimulate him, or on his feet or hands, to cause him to breathe again. For some reason, he does not do his best breathing on his back. He loves his tummy …. So last night, that’s where they put him. They like to move him around every 4 hours, but since he is doing well, they aren’t going to move him. I stayed at a distance from his bed this morning and afternoon and tonight and he did well. I peeked at him a few times, but mainly watching his chest rise and fall from a distance. At 10PM tonight he will have been on the bubble cpap for 38 hours, which is what he lasted last time. He is doing much better this time, but of course, they grow stronger with each try. If we make it 48 hours, we are doing really good!!!

I have some pictures (I am really bad about adding pictures lately!) that I want to add. Some of them are of him on the bubble cpap again and they put a Christmas ribbon on the top of his hat to hold it together. It is sssoooo cute! I bought him a small stuffed animal with a “My First Christmas” blanket on it, it’s small, but Santa is coming to all the kids’ beds on the 11th to take pictures with them and I want him to have something “Christmas-y” for his pictures!!!
This week has really been a blur. The kids were still here on Monday cuz they did not have school. It was a hard holiday for us. My children have begged me to bring them here to stay with me ever since I came. They do not like mommy being gone, they are taken care of by loving family, but they still have begged me to come up here. At first, I considered bringing them and home schooling them, but quickly realized how difficult that would be to do and to still spend time at the hospital. I would never be giving myself a rest or a break and that could likely result in admitting me to the looney bin! So, while the kids were here this weekend, they kept crying and telling me they wanted to stay here and go to school around here so they could be with me and so we could be a family. I really discouraged it because I kept telling myself it is only temporary and telling them it is only temporary, but that was not pacifying them at all. They would cry harder …. So I told them we would just see what we could do. I did not think I could put them in schools anywhere other than the FWISD, and that was just not going to be a viable option for us. So I called a school district that had been recommended to us and talked to one of their administrators. She said she would come see us and discuss things with the kids. She came on Monday afternoon and answered questions and told us that we could just call her if we decided to go ahead and put them in school. We talked with the kids about it after she left and they were adamant that they wanted to move here with the understanding that it is temporary and we will be returning home when Kadin is healthy enough to leave here. They were both excited when I said we could give it a try ….. They were talking about how many new friends they were going to make, playing football outside on the playground, possibly playing soccer, but when I asked them what was the most exciting thing about them coming here, they both said “Being with you, mommy!!!!” AAwwwwwww …… I cried a river. I thought I was doing the best thing for my children by leaving them home to have a continuance of life as they knew it, but they said it’s just not the same without mommy at home.

I did not want to uproot Dakota for more reasons than just having to readjust in a new school. He has been quite confident that he is going to make new friends and he knows he will be going back to his old school when we leave here. He is going to miss his friends he said, but he will see them again soon. But he is also going to miss his dad and that was another reason I tried to talk the kids out of coming here. I did not want the battle with Joe over Dakota coming, but I got it anyway. I can’t even begin to list for you all the horrible things he has called me and said to me since I told him of my decision. It truly breaks my heart that I was married to him for so many years and he classifies me as sub-human. You would think that he would understand our son needing me and wanting to be with me. I just can’t go into all the things the he says, but I know I am a loving and caring mother who CHOSE to leave her children back home because I thought it was the best thing for them. Apparently, I am still selfish and care about no one else in all of this. Not bringing my children up here sooner has been very difficult for me and I feel I am very UNSELFISH in having done so. He and I are never going to see things the same which is no surprise as we never did while we were married either. I just did not need or want the stress he has dealt to me the last few days and really wish he would stop being so closed minded on this and realize it is just temporary! I said I would take our son so that he would still be able to see him, but like everything else, I am a liar. I’m just glad I have all you friends and family that still love me even though I am such a horrible mother and person.

Another stress factor for me … I was told thru this I will be taken back to court soon for something I did not do. Dakota’s daddy bought him a rifle and Danny tried to give Joe some ammo for Dakota to use and apparently they got into it …. One says they did, one says they didn’t. I don’t know, but now I am being told that I am responsible for all of my spouse’s actions and I will pay monetarily for it in court. I’m not quite sure how I can be held liable for what I did not do, but Joe says because Danny and I are married, we are one, and I am accountable for all his actions. I guess that’s the same thing as he used to tell me about his actions towards me, I was responsible … it was my fault he was not nice to me is what he would say. So … ok. Not something I need on my plate, but I’m sure he’s going to give it to me anyway. I am scum of the earth, a child stealing liar, and a whore on top of that ………… alright.

Ok, I got that out of my system. Sorry for such a harsh update but I sometimes have to vent or I will go crazy. Just pray for me please … I don’t want or need this added stress, especially when I am trying to do everything within my power to see that everyone in my family is taken care of and healthy and happy, on top of worrying about my little baby in the hospital trying to make it.
Now we just have to find a job for Danny ….. More prayers please.

If there is anything I have realized, it is that you really can make it thru anything. Having friends and family to support you is one of the most important things you could ever have in your life. I don’t know what I would do without all of you who have supported us thru prayer and other means, and even those that we don’t know about who have stumbled upon this and maybe said a prayer for our family. It truly does bless me that so many people are willing to give a part of themselves just for us. I am humbled and very honored that you would take the time, whether we know each other or not. I have made some very wonderful friends here while we have gone thru this trying time and I truly feel that they will be my friends for life. They are walking in similar shoes as we are and our circumstances have brought us close. I cherish the time I have had with all of them here and hopefully will keep them in my life forever! Here’s to you Laci, Perry, Tara, Hilarie, and Preston!

Well my family is on their way right now so I’m going to go finish what I need to do to get things in order for them. I will update again tomorrow I hope, on how things go with the enrollment for the kids and with the way things are for Kadin. When I left earlier tonight, he was doing fabulous! I failed to mention that the little turkey weighs 2 pounds and 2 ounces !!! Can you believe that ??? Hilarie and Preston gave us some Preemie clothes for him for when he gets to start wearing clothes. I am so excited about it … finally it is seeming like we really had a baby. I don’t think he can wear clothes til he is close to 3.5 pounds, but when he can, I have ‘em !!!!

Night everyone …. Please pray for us still not only with Kadin but with this new venture with the kids and Danny being here. We need it !!

Love and Hugs,Leslie

For the time I have missed the last several days

2008-12-02T16:47:00.001-06:00

I finally have a few minutes to write an update of some sort. This is liable to be kinda long, so if you are really interested, then good, but if you are not, you might wanna skip out now! Lol

A lot has happened since the day before Thanksgiving. My family got here on Thanksgiving Eve and I was never so glad to see them. My children have been having a difficult time being away from me and it really worries me a lot. So, to see their faces as often as I can is truly a blessing for us all. I miss my husband too, but he and I are adults and we understand things a lot more than they do. Of course, it is still difficult to be away from anyone that you love and care about, so we are just dealing with it the best that we can for now.

On Thanksgiving, I was able to hold Kadin for the first time ever. It was the most awesome experience. I waited 24 days to get my arms around him … Well, I guess I should say to get him on my chest, cuz that is where he went. If you looked at my recent added pictures, you probably saw the ones of him on my chest and my make up all dripping down my face! J I could barely calm myself down when they laid him on my chest. I can’t describe the feelings that stirred in my heart and soul when he was laying on me. It was the most precious thing. He is so small, yet he is gaining good weight and growing in length, too. I was able to hold him again thru the weekend and yesterday, so I have more pictures to add of that.

As far as an update on Kadin, things did not change much for him since last time I updated. However, today the Dr. said he is acting as though he is trying to get an infection. He has an IV in his leg, which is called a PICC line (they call it something else too, but I forget) and it runs all the way into a main artery in a central location of his body. This is necessary because he is not a good candidate for IV’s. His veins are not big enough to hold an IV for very long at one time. Anyway, the PICC line could possibly be the origination of the possible infection. We don’t know yet. A blood culture was done today to find out if there is an infection in his blood. If there is, they will remove the PICC line and just have to stick him however many times it takes to keep an IV in his body. He is receiving 2 antibiotics thru the day right now to help kill off any infection that might be growing. His xrays look great today, an improvement from yesterday when the Dr. had to give him medication to pull off the water. This seems to be a common thing for him. He also likes to de-saturate, which means he is not blowing off the CO2 in his lungs properly. This is a problem he has regularly and it sometimes causes him to “Brady” which means that his heart rate drops and he usually has to be “bagged” to bring his heart rate back to where it needs to be and keeps him breathing. He is taking in 14 ml of breast milk right now every 3 hours, which is just amazing to me. Not sure where it all goes, lol. It is given to him thru his feeding tube over a period of about 30 minutes. He is tolerating that well also and the dr. said as long as he is still doing well thru this possible infection, he won’t stop his feedings. He intended to go up to “full feeds” today but is holding off til we know something about the blood culture. He was also scheduled to try bubble cpap again today but that is also on hold until tomorrow. So, some good and some bad things for today, but overall, it’s just the life of a Preemie and we work thru it. Infections in babies as small as Kadin can very easily be life threatening, so I am worried about this and sat at his bedside this morning praying over him and talking to him. I know he doesn’t feel good. He just looked lifeless laying in his incubator. I have always been told that babies that don’t feel good don’t move and I had never seen Kadin not move, until today. It just frightens me and concerns me, so I pray that we have caught whatever we need to in time to kill it off before anything drastic takes place. I will be going to see him again in just a little bit and will know if he is doing better. He was getting blood when I left earlier and that usually helps him feel better, for some reason.

As of right now, Kadin is weighing right at 2 pounds and has grown an entire inch since he was born. He is so precious, but he is still probably the smallest baby in the NICU. He is one month old tomorrow but gestationally he is 28 weeks. We have to think of him as if he were still in my tummy because that is where he is supposed to be. When his due date comes along, it will be as if he is a newborn. He will then be ready to act like a newborn, etc …. so he will be behind developmentally about 3 months since he was born so early but by the time he reaches 2 or 3, he will be caught up and probably doing fine.

It is still a day by day thing. You never know what is going to happen. Babies this small are extremely susceptible to problems and sickness. Even though he has done very well for the past week or so, he could still suffer issues that can’t be fixed or explained. I spend quite a bit of time at the hospital just sitting there watching him. Occassionally I will ask questions that come to mind but for the most part, I just talk to him and cup him in my hands. I found out last night I am able to give him his baths if I come at the right time. Also, the nurses are so very helpful. That unit is amazing to me. We have our own RN staff just for the babies, the dr.s are there just for the babies, we have our own Respiratory team especially for the babies … it is amazing. One of the girls made him a birth announcement card and a Baby’s First Thanksgiving card this weekend. He will get to have his picture made with Santa next week too. I am so excited !!!!

When my family was here, we spent Thanksgiving with my Aunt Rose and some of her side of the family. I was able to see a couple of my cousins I have not seen in many years. It was pretty neat. They are older than me, but the times we had as kids and teens is still fresh in my mind! After we ate and visited with them, we took off for Breckenridge to see JT. We can’t be gone from the RMH for more than 24 hours so we left at 6PM and came home the next afternoon. It was nice to see him and Cassie and just hang out. The kids really loved being with him and getting to ride in his truck for the first time, especially with HIM driving. He took me for a ride to Allsup’s and I was impressed. My boy can drive a stick shift! Lol It brought back memories for me of first learning to drive and my dad getting me a standard vehicle. And we lived at the bottom of a stinkin hill so starting the car and going anywhere was a real challenge some days. But, I loved that car and have fond memories of driving it all over creation ……

We are trying to find cheap entertainment for the kids since we still have bills to pay and responsibilities to look after thru all of this. So on Saturday, we decided we would take the kids to see a Disney on Ice show. It wasn’t going to be very cheap … $60 for all of us to get in to see the show, but we talked about it and figured we would one thing really special for them while they were here. Since Danny lost his job, we have been very careful about what we do because he still has to find a job. Anyway … so Danny dropped us off at the door to buy tickets while he went to park the truck. I was standing in line thinking “I hope this is a good decision to do this!” when a woman walked up to the woman in front of me and started asking her questions. She asked her how many were in her party and how many tickets she was going to need to buy. The woman just kinda looked at her and said “Just me and my daughter” so she turned to me and asked me how many we had in our party and how many tickets we were going to be needing … I said “We have 4, my husband is parking the truck!” … So she just handed me 4 tickets and said “They are free. We can’t use them and I don’t want them to go to waste!” My immediate reaction was “Oh my gosh! Praise God!” I was so shocked and surprised that I just stood there with my mouth open. Later when we got to the seats, I told her again (since her other seats were right next to ours now) how much we appreciated her kind gesture and a little bit about our circumstance and she was just blessed beyond comprehension. I know she is going to receive many more blessings from that selfless act.

I have a lot more to write about but not enough time really. I will go to the hospital in a little bit and then after that I will attend a support group meeting that has been very helpful for me. I actually look forward to it and I go with a friend I have made here in the RMH. I think I mentioned her, she is from San Angelo and has been a great means of friendship and support for me … and me for her.

I will be here in the RMH until December 18th and then I will be relocating to a motel nearby. It is the rules of the house that you can stay for 45 days at a time and then you have to move to the motel for 2 weeks to allow other families to move into the RMH and also for some to move out. My 45 days will be up on the 18th and then I will be able to move back on January 1st. Not looking forward to that, but I sent a lot of things home with my husband yesterday to help lessen the load.

Another interesting thing that has happened recently … I was contacted by the daughter of a wonderful friend of mine (Sue, HI!) and she told me that some people from her church in Brownwood were wanting to do a benefit concert for us. I was floored … wow, really? Just for us? She wrote and said that the plan was for 3 or 4 Praise and Worship teams to perform then the headlining Christian Band would perform later. I think she said this would be at Howard Payne University and the local radio station there would handle the advertisement of it. It is in the works for her and my family and the headlining band to meet sometime in the near future to get this off the ground. I am so excited. I don’t even know what to say. You know … I am so very grateful for anything that anyone has done to help us, but it is discouraging when you are told that certain things are going to take place and nothing happens. My prayer is to never tell anyone that I will do something for them and then not do it. So my prayer for this is that if it’s God’s will for it to take place, and I believe that it is … then everything will fall into place and things will be wonderful. I can just imagine how many people will be ministered to at this concert. Praise and Worship is the heart of my being … I love music, but Praise and Worship reaches a part of my being that only God can reach. So if any of you think you might like to travel to Brownwood soon, I will update with the date and time of this event should it all fall together like I pray it will.

Not my will, Lord, but yours ….

I am dealing with another issue at this moment that I don’t really care to write about in this blog. I will write a blog specifically for that issue, but I ask for your prayers beforehand and hope God gives me some peace of mind about it. My children are not doing very well without me, though others say they are doing just fine … my children are telling me and exhibiting behaviors that indicate the exact opposite and I know a change needs to be made. I will write more about that later tonight … I think. Just pray for us please ….

I will write more later … the liquid gold is calling my name !!!

Blessings,

Leslie and Family

Just a note ....

2008-12-02T10:34:00.001-06:00

I know I have not updated or written anything since the day before Thanksgiving, but I have been jam-packed busy!!! But never fear, I have a LOT to write about. I will probably take some time to do that a little bit later this afternoon. Danny called the hospital and they said Kadin was not feeling well, like possibly he was getting an infection ... so I'm all in an uproar about that right now and praying it is not so ........ He was scheduled today to try the bubble cpap again if he was doing well, but this may not let that happen. I will be gone for several hours so please pray for him if you read this today. I have tons of pictures to post and I will also be doing that when I get back this afternoon. I am glad you all enjoy the pictures and the updates, I'm just regretful that I have not been able to put anything here til now.
Still looking forward to all the messages you all are sending me behind the scenes. Keep them coming ... I truly need them!

Love to you all,
Leslie

The Day Before Thanksgiving

2008-11-26T14:27:00.000-06:00

It just doesn't seem like it is this time of year already. I can't believe first of all how quickly the year has gone by, but also how quick the past 3 weeks have flown by. This coming week is going to go just as quickly since I will have my family here. It will go by all too fast, but I know I will enjoy every single minute of it.

I have so many things to be thankful for that I can't possibly list them here, but one of the most important things I am thankful for is the freedom to praise and worship my GOD in heaven for all that he has given to me. I am thankful for the experiences I have had lately because of the strength they have built on the inside of me. I was so worried and scared and upset when all this began and had not half the strength that I have now. I am thankful for a loving and caring husband who does his best to take care of whatever needs to be taken care of ... most of the time he has taken care of it all before I even think about it. He takes excellent care of me and the children and tells me a million times a day how much he loves me. I am very excited that he and the children are on their way here right now. I can not wait to see them !!!!!

My visit with Kadin today was good. I am really liking these good days. His blood gases are very good right now so they have turned his ventilator down AGAIN ... and I looked today on the rate he is breathing over the ventilator and he is now doing half the work. When they put him on the vent he was very tired and just let it do all the work. Now, 2 days later, he is up to half the work and I'm so very proud of him. He is wiggle bug, which again, indicates he is healthy and energetic. They have told me that babies that are sick and don't feel good just do not move. He is opening his eyes a lot more now which means he is having more periods of being awake. He opens them when I talk to him and he wiggles and moves around. I am so excited about getting to hold him tomorrow. The nurse said it will be for about 2 hours if he tolerates it well and to expect him to fall into a very deep sleep since he will be close to my heartbeat again. I am so excited. Danny will be taking some pics for posting so expect those at some point tomorrow if everything goes well.

I went to a support group meeting last night and it was awesome. It's amazing how many people have gone thru the exact same things that we are going thru. I was told today that Kadin will more than likely be seeing one of these Dr.'s for quite some time and that our family should consider a relocation in order to accomodate that. Wow. I'm not sure what to think about that. I guess we will see just how well he develops and progresses before we start thinking about that.

I learned today that it is ok for me to have caffeine about once a day. They are actually giving it to Kadin for brain stimulation and for lung development. So I went right to lunch and had a DP!!! YAY! Liked to have killed me, I am not used to the carbonation now since I have just about gone without them. I am drinking mostly water for milk production.

I am going to get caught up on what my children have in store for when they go back to school and then I will be blogging about that. I know Kota has a program at the bank on December 17th and Robbi is still playing basketball. She has a love interest also, and he's from McCamey. I don't understand these young long-distance loves but ok ... I guess so.

Thanks to all of you who have commented wishing us well on the job issue. Neither of us can believe that anyone can be that insensitive but like most of you have said, it will come back to him and he will remember the time he did not show any sympathy or compassion and he will wish he had. I really appreciate each and every message, email, comment, text message, or any other means of correspondence that offers support and love from all of you. I know I have said this before but if I don't write back, please know that it is not because I don't want to, I get so many that it is hard to write everyone, especially when the internet in my room comes and goes in the manner in which it does. One minute I will have it the next minute it is gone ... very frustrating. The messages I get are very encouraging to me and are part of the reason that I have gained the strength and stamina that I have - to know that some of you have been there and pulled thru and telling me what I have to look forward to in no time just blesses me beyond measure. Please keep sending me those bits and pieces of encouragement, I truly need it.

I have to get off this computer and do some laundry before the family gets here. I will try to continue to update while they are here, but as you have seen, when they are here, my time is undivided and I soak up all that I can. I will have more pictures to post later this week so keep an eye out for all of that.

Enjoy your Thanksgiving with your friends and family and know that I am praying for each one of you, that you will be given back all that you have given, especially to me!

I love you all !!!!
Leslie

Kadin as of today

2008-11-25T23:52:00.000-06:00

This has to be quick. I am not picking up internet in my room so I am out in the hallway in a chair by a huge Christmas tree ....

Kadin was put back on the ventilator in the early hours this morning. He just got too tired. He is doing great though and his settings on the ventilator are even lower than they were before he went to cpap. They will try the bubble cpap again in about a week or two, depending on how well he is doing.

He is tolerating everything else really well right now. I got to change his little diaper today and take his temperature. It was difficult with all the wires. I was actually nervous!

When I went to see him tonight his eyes were open. It was so precious. He just looked around for me when I would talk to him. He got really squirmy so I stopped so maybe he would rest.
The Dr. printed a growth chart for me and he is growing right on schedule. The comment was made that most babies don't grow as well as he seems to be. Ok ... another huge positive!!!

My family is coming tomorrow. I am so excited! I miss them so much. We got a puppy and my nephew is going to "dog sit" for us, which I think basically means he is going to check on the puppy, make sure she has food, and take her to potty! YAY! His first "job" ... ha ha ha, cuz I'm gonna pay him to do it for us. He'll like that, I bet ...

Well ... I better get back to my room and do something. Not sure what. I'm a little restless right now.

More later ...

Bubble cpap

2008-11-24T09:57:00.001-06:00

Quick update while I have a minute ....
Kadin is doing fabulous on the bubble cpap. He has had a couple of banner days now. They upped his feeds from 6 to 7 ml so now he is getting about 2 ounces every day. I can see that he is growing and Danny says he can REALLY see it being gone all week. They also removed the arterial line he had in his right arm. I am simply amazed at his strength. His strength helps me not to lose faith. I am so excited about all that is happening with him.
The dr. came in last night to see how he was doing while I was visiting with him. The way his eyes lit up almost made me cry ... wow ... he was nearly jumping up and down with excitement at how well Kadin is doing, but said he is not out of the woods on the cpap yet, he will need about 48 hours to make sure he does fine. So, at about 4PM tomorrow we should have a good idea of how he is going to progress with this. His oxygen requirements go up and down, depending on how tired he gets. I'm interested to see an xray of his chest to see if the moisture in his lungs clears up. The dr. said that the vent tube is a conduit for infection, of course, and it's very good we don't have that right now.
I'm so very excited!!!
Going to run to wal mart with a young girl I have befriended here at RMH. She is from San Angelo and alone like me. We have had a great time together.
More later ....

2008-11-23T23:00:00.000-06:00

I can't believe how quickly last week passed. The weekend came and passed even more quickly than the week, of course, so at this very moment, I am sad that my children have come and already gone. I miss them so very much. It is the absolute hardest thing to stand there with your children crying and telling you that they don't want to leave you. My gosh ... THANK GOD next week is Thanksgiving and they will be here for a longer stay. I absolutely can't wait for that.

My family got here fairly early on Friday night. I was so glad to see their beautiful and handsome faces!!! This whole weekend is a blur because we were so busy. While I was waiting for them to get here, I had a visit from some hometown girls, Robin and Darla! I was sssooooooo glad to see them. They took me out to eat at a nearby Mexican restaurant which was so very good and then we came back to my room to visit for a little while before they had to go get some sleep for their classes that started Saturday morning! It was wonderful to see someone from "home" though and just to sit and visit with them. Robin is a paramedic and Darla is an EMT so they both understood a great deal about what I discussed about Kadin. Also, Darla has a nephew (I think) who was born very prematurely and he is 4 now and doing just fine! It is so encouraging to me to hear all those things like that.

God has sent so many people in our paths that have had dealings with either premature babies in their families, or they have known someone, or they were premature themselves. It is just astounding how that has happened. God knows I need those stories and encouragement that everything is going to be fine. It's as if he is showing himself to me thru others to say "Have faith!" .... It is amazing. Almost every day I meet someone or talk to them on the phone and they have a little bit of faith to spread my way. It is an awesome feeling ....

Friday night, Kadin's blood pressure started dropping again. The Dr. said it was because his kidneys were not putting out enough of a steroid for his body so he was going to start some medication to just jump start things again. They gave the meds at about 5:30 and by 1AM he was off the meds and doing just fine. He continued to do fine throughout the weekend. That baby is just amazing to me. I can't get over how well he is doing. We visited him a couple of times on Saturday but not for very long. Since the kids can't go back there we made our visits short. It was all uneventful really. We spent the majority of the weekend with the kids. We took them to the movies to see TWILIGHT (YAY!!!, no seriously, YAY!!!) and then we took them to ride go carts. We had a great weekend.

When we went for our visit today to see the baby, we walked in and said hello to the nurse. She said we were going to have a BIG day for Kadin today. I was like "Huh? Surgery again????" I just could not imagine what was on the agenda. But she said no, it was that they were going to take him off the ventilator and try him breathing on his own with what is called a "bubble cpap" ... it uses pressure from bubbles in water but it does not do the breathing for him. We called after they did it and they reported he had been breathing on his own for about 30 minutes but tht they had him up higher on the oxygen than they liked to have babies so they were just watching him for a little bit and that the Dr. was right by his side and if he failed at breathing they would put him back on the ventilator. So, I am going over in just a few minutes to see how he has done. Now that my family has gone home and I have sorta kinda pulled myself together, I will go back out in public.

My husand and children will be back on Wednesday since this is Thanksgiving Holiday week. I CAN NOT WAIT !!!!!!!!!!!!!!!!!!!!!!!!!

Just wanted to get an update since I haven't in a few days. I hope you are all doing well .... drop me a line !!

Love,
Leslie

Hospital Rule Number 1

2008-11-19T22:22:00.005-06:00

Never sit out in the lobby all alone with soft piano music playing and look thru the pictures on your camera of your newborn baby and the rest of your family. No ... don't do this ... it's grounds for a bawl fest. :)

Everything is looking up. Kadin seems to be on the upswing from the surgery. When I went to see him this morning, I could see immediately how well he was. He has improved tremendously in the past 24 hours. His vent settings have come down ... 34 breaths a minute instead of 50 and 60 like he had before. His feeds have increased from 1ml to 3ml now. His blood gases are very good which helps them change the settings on the vent. I just have nothing bad to report today. PRAISE GOD!

This picture is Kadin right before surgery at Cook Children's Medical Center. >>>>

I'm just glad he has not been having these episodes where he clamps down and doesn't breathe or have a heartbeat. He did this like 4 times since Friday night after his surgery. They have to "bag" him and give him oxygen and pray his heart restarts. I think the longest episode they said lasted about 45 seconds but that it doesn't damage him, it is just scarey as the day is long !!!! He did it once while I was there and that was about 10 seconds, but it was a very long 10 seconds !!! Don't want anymore episodes like that. The nurses told me that unfortunately it is pretty common for a baby to do this after extremely stressful situations, or during, such as surgery or even infection. They don't like to see it but they are well trained to take care of it should it happen!

This morning when I went to see him, I walked up to his bed and started talking to him. He opened his eyes and just looked in my direction for quite awhile. I kept talking to him and he squirmed around. But he just looked so alert, so interested in knowing mommy was there. It made me cry, of course .... because the nurses say he doesn't do that with them. I wish I could be by his bedside for 24 hours every day. They have his arm "tied down", it's actually behind held to the bed with a huge safety pin so that he does not damage that arterial line, but anyway, he hates it, so he pulls his arm sometimes.

<<<<<>

This evening when I went over, he was ON HIS TUMMY! Yes, the nurse put him on his tummy and said HE LOVES IT !!!! She said she could not get him uncurled off his tummy last night cuz he loves it so much. He is resting so very well like that, and it's probably because he is really snug like he was in mommy's tummy. I finally could see his incision and wow ... you can't even tell it was there. I mean, you can see it a little bit, but it is almost like it was never there. It is about 2 inches long too. It is simply amazing !!!! I forgot my camera for tonight's visit but the nurse on shift took some of him on his tummy for me. His head was turned away from me so I went to the other side of his bed and started talking to him and again, he opened his eyes and tried to see me. I swear this morning he smiled at me ....just melted me !!!!! I got "kicked out" of the unit tonight because they had a new admit coming. Something serious happened, not sure what, but as they were preparing for that baby to come in, someone in the lobby was having a complete breakdown over it. It was horrible ... very emotional. I just pray everything was alright. You never like to see that kind of thing, but unfortunately, that's what happens in an NICU. I did find out from a girl I have befriended that the unit lost a baby yesterday. The baby was one of a set of triplets .... really stinks to hear that but makes me feel even more fortunate that my baby is thriving the best he can at this point.

I am sleepy and need some more rest, even tho I took a 3 hour nap this afternoon. I am exhausted, still .....

It's beginning to look a lot like Christmas!

2008-11-18T18:18:00.003-06:00

..... and I'm not really ready for it.

The entire place here at RMH is decorated. I mean DECORATED !!!!! It's how I would want my house eventually. Every window, every door, every room has a tree, FABULOUS! It brightens the spirits a little and I can't wait for my children to see it. Wreaths everywhere, lights, ribbons, sparkles, etc ... Snowmen, huge Christmas balls, colorful lights, garland, candy canes ... need I say more? I am going to get some pics and show you.

Kadin is doing well. He did that "thing" again where his breathing and heart stop for a few seconds. I was there this time. Scarey. Don't want that anymore, please. He looks really good, seems to be growing to me. He has changed. I love it. The nurse we have had the past 2 days is wonderful. We have a bond. We are a lot alike. She is precious and I hope she comes back, but rarely do we see the same nurse twice.

I wanted to take a minute to thank all of you who have sent me cards....

Beth, I got yours right after I moved to the RMH. The volunteers at the hospital took it to the NICU for them to deliver to me when I got there ... The pics of your animals was good for me. I enjoyed them so much!

Tracey, I love you so much. Thank you for the card and for making my day yesterday. It means so much that you would take the time to write me. I appreciate the prayers.

Kirsten ... same to you precious girl. Thank you so much for the card and the picture of Kadin! I absolutely LOVE the picture and will carry it with me always. I was so excited tonight to find it in my mailbox.

So I am going to finish laundry and find something to eat. Have a blessed evening everyone ...

Lots of love,
Leslie

No real changes except for a climb upward

2008-11-18T09:12:00.002-06:00

As of right now, things are going ok. We had the one major setback, surgery and the night that followed, but as of Sunday, everything has been ok. The only thing now is just facing the preemie issues that go along with having a baby at 24 weeks. It's a struggle, that's for sure.

I was with Kadin almost all morning and afternoon yesterday. I just did not want to leave him. I did go eat lunch and relax in the waiting room for a little while. He had a little trouble while I was gone. They said his heart stopped. Something about a bronchial spasm that can cause that. It's brief and does not do any damage, and all they want is for the heart to start again. The nurse said the episode only lasted about 45 seconds and that this sort of thing was not uncommon for a preemie baby. He is classified as an "extreme preemie".

Again, he is still off all the medication. His ventilator support is having to be tweaked ... lowered actually ... because he is doing so well on his own. He is almost down to breathing room air, no extra oxygen, he is peeing well, and they started his feeds again yesterday. 1 ml every 3 hours to build him back up again. He is restless and does not want them touching him. He is still minimal stimulation but the nurse yesterday let me lay my hands on him for a little bit.

I guess maybe I might get to talk to the Dr. this morning. I am early enough maybe I can catch him. I've been up since 6 taking care of business. It seems I am more busy here than I ever was at home. Or maybe it's just that I loved my routine at home.... ???

I understand my little boy is missing me pretty badly. I can't wait to see him again. Just a couple more days! He called me several times yesterday. I just love to hear his sweet little voice! My daughter played her first basketball game last night and won. She called me as soon as it was over !!! And I missed it ... dang it. Sucks ...

I think I have seen more pregnant women since being here than I have ever seen in my life. It is so hard to not get angry when I see them. I know they are blessed, but I am still trying to get over the feeling that Kadin and I were robbed. Maybe one day I will get past that, but for now, it is hard to see mommy's walking around with their blessing in their tummy, it's hard to see mommy's being wheeled out of the hospital with their new baby in their carseats. I know God will help me thru it, and I will get past it, but it's a difficult process.

I am about to go see the baby so I will update when I can later. Have a blessed day and count your blessings!

Love,
Leslie

It All Runs Together

2008-11-17T00:09:00.003-06:00

I realize I have not updated in a couple of days. There's a very good reason for that. I have been extremely busy and totally exhausted. I have not slept much ... all to my detriment ... but sometimes things just get to me.

I was told Thursday upon my morning visit with our Dr. that Kadin was requiring heart surgery to close the PDA valve on the outside of his heart. They had given him medication to close it, and it appeared to have been closing, but did not get closed completely. It was now causing some issues in the lungs with backflow of blood settling in the lungs and causing it difficult to breathe, thus requiring more help from the ventilator. Ok, lots of repeats here, but I realize some of you are new to reading my blog so I want to cover all bases here ... sorta.

I called my husband to tell him that our baby needed surgery and he was just beside himself. I don't know at what point the decision was made, but he made the decision to come to FW to be with me as soon as he got off work Thursday. I was so surprised and so happy that he was coming. It worked out perfectly because the surgeon ended up pushing the surgery back several times to finally being able to perform it on Friday at around 7PM.

It all went well ... he seemed to be recovering ... until about 10:30PM last night. He crashed. It all went to pot in a matter of seconds. Literally ... SECONDS. My oldest son, his dad and stepmom had come to FW to be in town for my son's cheer competition in Denton today. So they decided to stop by the hospital and let JT see his little brother and to drop off some gifts for Kadin. My son and I went back to see the baby and we weren't there but for a few minutes when they asked us to leave so they could get some xrays. Kadin had already been put on a blood pressure med earlier in the day because his blood pressure kept dropping. It bottomed out while my son and I were in the room with him. So they asked us to wait out in the waiting room for about 5 minutes. Those 5 minutes turned into more than half an hour. We were scared and nervous as you can imagine. JT had to leave so he could get a homework assignment completed and then go to the motel with the rest of his team. Before they left, his dad Bryan prayed for Kadin and all of us. Danny and I then went to be with the baby and it was the scariest thing I have ever witnessed. My limp and lifeless baby was just there in his bed. Tubes were everywhere since they had now strung a total of NINE medicines to attempt to keep him alive. This included some insulin since his blood sugar was also too high. So now he was having 3-4 different blood pressure meds, pain meds, insulin, steroids, and a variety of other things being pumped thru his body. The Dr. started talking about how he was not responding very well to the medication to raise his blood pressure but that there was still hope ... His profusion was good, he was peeing good, and a few other things that I don't really remember ....

The Dr. said a few things that led me to believe that our baby was critically ill. Well, first of all she said he is very very sick. She said she has seen babies sick before, but he was the worst she has seen in a long time. The good thing was they were not having to do CPR at this moment. I was so upset. My husband was upset. They had me sit down in a rocking chair and he knelt down beside me and we just sat there. Tears rolled down my face and I heard him sigh quite often. The team of RN's, the Dr., the Respiratory techs, ALL of them were working so diligently to save his life. Between that and prayers ... it worked.

I am proud to say that he is doing wonderfully today. His blood pressure is holding it's own and he is not on any support from medication for that. THAT in itself is wonderful news. His blood gas reports are coming back excellent and they are able to turn down the ventilator some more every time. He is being weened off the insulin, also. He was receiving some more blood earlier tonight but that, again ... is not unusual and very par for the course in his situation.

He was resting when I went to see him this evening. They had given him a little bit of morphine to calm him down. He was really misbehaving before I got there. His body looks somewhat swollen from all the fluids they were pushing, but it is getting better. They are putting some antibiotic creme onto this feet and legs and I was glad to see that. He was peeling and it just looked bad. He got a paci too and he likes it. I can't wait to see him tomorrow ....

While we were at Cook's, we got the message that my husband's nephew's son (whew!) Michael, who is 14, had been admitted to the hospital with some form of leukemia - I believe they were waiting for the tests before they said definitively, but that is the suspicion. So we walked around the hospital trying to locate Danny's nephew Gary Don and his wife Angela and we finally found them. We had it so bad, but glad we were there and could at least see them and Michael. Michael really seems to be in good spirits about it all. He was just mad he missed his first plane flight because they drugged him up! lol So I guess we'll wait and see how all that turns out. Please pray for them ......

Well, wow, I am sssoooooo sleepy but wanted to get an update on here since it had been 2 days, or something like that anyway. We ran over to Denton real quick to see my son compete this afternoon and then a quick run back before the kids had to go back home. I hate this arrangement but am trying my hardest to make the best of a not so good situation. I just can't wait to take Kadin home and have a normal life again.

OH .... lemme say that the bake sales were great. I am so grateful for everyone who contributed and who worked the sales for our baby's benefit. I just can't say enough how grateful I am for it all .... THANK YOU!

I really enjoyed seeing my children this weekend too. It is still quite an adjustment for them and for us all, but we are going to manage and make the best of it. The kids are making this their "home away from home" when they are here and I am enjoying it. It is still somewhat stressful at times, but until we are used to this routine I expect that. It will get better ... it has to.

Thanks for your prayers still and all the support you all have given to us. It means the world to me that all my friends and family and our community have pulled together to be there for us during this uncertain time. I never dreamed we would be here, but here we are and by the grace of God, we're gonna be just fine!

Love and Blessings to you all,
Leslie

Surgery .... so far so good.

2008-11-14T23:32:00.002-06:00

I know I have not updated at all today and that is because we have been at Cook Children's Medical Center all day long. We were orginally scheduled for surgery at 8am and were told to be there at 7 so we could speak to the surgeon and the anesthesiologist, but not soon after we got there we were told it was postponed a little because the Dr. had been in surgery until 2:30am and had not been heard from at that time this morning.

We decided to go eat breakfast and wait a little while until he came in, but as the day progressed and the surgery kept getting pushed back, we decided to just go to our room and wait. We were not in our room very long when they finally called at 4:15 to tell us we needed to come over and take care of all the consents and other things.

We did not wait very long after arriving until the Dr. came to talk with us. He was very positive about the surgery, explained everything in fairly detailed terms, and then we met with his anesthesiologist. Since I had not scrubbed in this visit, I got to just take a quick peek at Kadin and tell him I loved him (thru teary eyes, of course) before heading back to the waiting area while they continued to prep him. They did his surgery right in his isolette! The whole cardiac OR team for preemies was at his bedside. They all assured us they would take good care of him.

We sat in the lobby and talked to my Aunt Rose for over and hour before Dr. Tam's physician's assistant came and told us that the Dr. was still with Kadin but that everything had gone just fine.

We were able to see him within about 15 minutes. He was paralyzed from the meds and I did not really like to see that. His little hands just fell to his side, and of course, I put them on his tummy. Daddy took his temperature and I changed his diaper. The RN's at Cook are very "hands on" and very interactive with the parents. So many people came and talked to us today that I can't even begin to remember them all, but one I won't forget is the Chaplain DOUG, who prayed with me last night and then again with us today. It was nice ...

When we went to see Kadin, we expected him to be doing a little worse than he was prior to his surgery. The nurses had told us that this surgery was not a quick fix to his issues and not to expect anything when it was over. The recovery would be several hours, but also his improvement would span over the period of several days. I was confused when they told me do not expect immediate results ... ok, so we didn't, but that is what we got. He was requiring less help from the ventilator, his blood gases were down significantly, so I am believing that this was just the fix that he needed to get him regulated and back on track. If he does well and they can ween him off of the ventilator, he will then get a bubble cpap which actually is very good for him. He has to be doing very well for that though ......

So, I don't know if I put everything in here since it feels like I am writing thru sleeping eyes .....I probably won't even remember writing much if any of this.

Good night, I am so sleepy right now ..........

8am

2008-11-13T20:29:00.002-06:00

Kadin's surgery was rescheduled for tomorrow morning at 8AM! My husband is driving up tonight to be with me and the baby tomorrow during this. I am so thankful. The NICU at Cook Children's Medical Center is so large, I felt lost in it. They could tell, lol. They were very comforting there and explained EVERYTHING. The nurses also told me just how wonderful and good Kadin looks for being born so early. They mentioned he moves well, he has no bruising, he is formed perfectly, and he seems to be alert when he isn't sleeping. I was so glad to hear this ....

He did not like being moved to another location. Before he was moved, I was talking to him and praying for him and he kept opening his eyes and looking at me. Of course, they tell me the rods and cones in his eyes are not developed, but that baby was looking at momma, I just know it. He doesn't open his eyes for the nurses, they tell me. I was holding his hand and talking to him. Seeing him look at me is amazing. I just can't explain it.

The NICU nurse at Cook's told me they are going to shut down the NICU in the morning for his surgery to be done at his bed. They will wheel all their equipment from the OR into the NICU and perform his surgery right at his incubator. Anesthesia will come administer their stuff and monitor thru surgery, etc .... so I thought that was really neat. Danny and I will meet with the surgeon and the anesthesiologist in the morning, sign some consent forms, and wait in the waiting room.

When they first took him to Cook's, the nurses there gave him a pacifier. Of course, it was a TEENY WEENY paci, and it was ssooooooo cute. My little baby actually sucked on that. They noticed he was sucking on his ventilator tube so they gave him that paci and he loved it. I cried and cried watching him sucking that. I could not believe it. It soothed him. It's probably what he has needed all this time. I just wonder if at the other hospital they will give him one to soothe him there. So far, I haven't seen one there.

So, right now, I am going to grab a much needed nap. I finally ate some food this evening. TWELVE BUCKS WORTH OF FOOD! And I ate every bit of it. I could not believe it. I was hungry. I needed energy, but now I am sleepy and need a nap. It is going to be an early morning for us to be there at 7AM so I need all the rest I can get.

Thanks for your prayers and please continue them. I will update as soon as I can on the surgery and Kadin's condition. The bake sale is tomorrow too and I'm excited about that. I was told our baby made the local newspaper - I can't wait to see that article !!!!! I may try to get it on here somehow .... not sure how.

Have a good night, and bless you all for continuing to come read our updates and pray for our son. We are so very blessed.

Love,
Leslie

Surgery today

2008-11-13T11:43:00.002-06:00

Our precious baby boy is having surgery today. I met with the surgeon's physician's assistant along with Kadin's Dr. at my morning visit. He said that this whole in his vessel appeared to be closing but isn't closing on it's own and surgery is required. Such a change from yesterday's news .... He told me yesterday there wasn't a Dr. who would touch a baby this small, but then today he tells me that this is a very common surgery for babies this small. Maybe I am just not hearing him correctly, I don't know. I feel like I am, but I am so tired lately that I could be misunderstanding him. Anyway, he will have an incision on his chest and the surgeon will stitch the hole closed and this should eliminate some of the issues he is having with the lungs. They said he will probably get a little sicker after the surgery but that he will start to improve. They said they look for him to do well with this according to how well he has done until now. There are risks involved as with any surgery, but the percent is small ... like 5% chance of bleeding, infection, or even loss of life. So I came to my room to make a few phone calls and post this update for any of you that might see it in time to pray for us. I will be at the hospital (Cook Children's Medical Center) with him while he has the surgery and when he comes back to Harris Methodist. Not sure how long that will be. I guess it just depends on how well he does.

I am a nervous wreck but not falling apart at this point. I really do appreciate your prayers, they help get me thru this. My husband wants to be here and it is killing him that he can't be. He will be here tomorrow with the kids, though.

Thanks for your prayers and continuing support ..... We love you all!

I don't like rollercoasters!

2008-11-12T19:56:00.002-06:00

All my days are starting to run together. I went to see our baby boy this morning and was updated by the nurse that was on duty at the time. She seemed very knowledgeable about what was going on and pretty much gave me the same report the Dr. gave me later.

It seems today's mood about the baby was not as positive as it was yesterday, but I am going to keep believing it is all good. They keep telling me they have never seen any 24 week old baby born without all these issues. I understand that, but I think my baby is going to surpass all expectations of this NICU. That is not being unrealistic, I just pray for good things for my son.

I was unaware that medication for this hole in my baby's heart vessel had already been administered to him on his birthday. No one said anything about him already receiving medication. The Dr. told me today that they did another xray of his chest this morning and it appeared that there was more fluid on the lungs than yesterday. They are still giving him medication to pull that fluid off. This means he is tee-teeing a lot more. So, since his lungs showed more fluid, the Dr. ordered yet another echocardiogram to look at the vessel again. When he came to update me this morning, he did not look or sound so positive about all this. He said that there is not a Dr. out there that will do surgery on a baby this young to fix/close that opening if it needs to be closed. The nurse told me that she has seen babies this young go to the OR for surgery on this issue. She also told me that Dr.'s don't like to give a second round of the medication for closing the opening. So, there is some information that I missed out on somewhere along the way. I will cover this with the Dr. in the morning when I see him.

They have upped Kadin's feeds to 4ml instead of 3 and he seems to be doing well with it. The nurse also made sure I knew that at some point babies will have trouble with their feedings and they will be stopped. This I have never heard from any of the other nurses before. She also said she didn't know what I was eating but it was giving him gas really bad and making his bottom raw, so they were having to put Desitin on his hiney. Made me feel really SMALL!!!!!!! I am trying to stay away from spicey foods, fried foods, carbonated drinks, etc .... So I don't know. I know that made me feel like complete crap! I don't want my baby suffering because of me in any way. I've already done enough to contribute to what he's going thru ...

The nurse told me that brain bleeds were a big problem and it was such a blessing that Kadin does not have any. She said I should be praising God that he is perfect in that area. Little does she know, me and God talk all the time! lol I think she was just trying to be helpful to me. I had never seen her before and she told me she is only there one day a week.

Kadin's blood gases were good but not enough to lower his support on the ventilator. He is still about medium on that. He is not requiring the max help from the ventilator, but he's not at the lowest point either.

My heart broke tonight watching him get his diaper changed. She told me earlier in the day that he absolutely does not want you in his bed, doesn't want you to touch him or anything and he throws a fit when the nurses get in there with him. So she started changing his diaper and he started throwing his arms and legs around and I looked at his poor face and he was making a crying face, but nothing was coming out. I felt so helpless. I teared up and fought breaking down right there in the NICU. Oh my gosh .... that face. I only want to see that face when I can grab him up and comfort him. He HATED what she was doing. I hated watching it. I just wanted to hold him, make him feel better.

It's only been 9 days and I am flat exhausted. My days are running together. I pump every 3 hours so I nap when I can during the day and then wake up in the middle of the night and pump. I handled this type of routine much better when I was home with a newborn. The baby woke me up to tell me when he was hungry, I changed his diaper, loved on him, and nursed him, then we both went back to sleep. It's hard to wake up to a whining alarm clock. The alarm clock isn't very warm to hold and certainly doesn't look up into my eyes for comfort and love. I feel so cheated. I know when we get to bring Kadin home it will be like he is a newborn. He should be the size that he would have been at a full term birth. I am praying we can take him home a little earlier than February 23. I want him to exceed all the expectations of the Dr.'s and nurses. I want them to remember KADIN ISAIAH KIRKPATRICK as the one who left them amazed. Guess we'll see ....

My son called me tonight. He is ssooooooo excited about coming to see me this weekend. I need his little hugs and kisses, those precious arms wrapped around mommy tight, those handsome brown eyes looking up at me in such a loving way. And my daughter, too .... The way she holds my hands and says "I love you mommy" ... yeah, melts me quickly!

And then there's my husband ... and all those thoughts are private! lol

I pray we have a better day tomorrow and everything will iron out with Kadin. It has to ... I won't settle for anything BUT that.

Blessings . . .

A few of my favorite pictures!

2008-11-12T13:07:00.003-06:00

Still learning how to operate this blog and I have not found anywhere to put pictures, such as an album or anything. I am not familiar enough with this to know if there is a photo album ... So these are a few of my favorite pictures!

Video on Myspace

2008-11-11T22:51:00.002-06:00

I was not able to upload the video here on this blog. I am not sure why. My connection may have something to do with it. However, if you want to see a very short video of Kadin (well, mostly of his little footie!) you can view it on the front of my myspace page! I think most of you have that url but if not, it's www.myspace.com/redlady88 and it's on the right hand side near the list of friends!

You can't see his little face cuz of the sunglasses, but you can see his small foot in comparison to my hand. He's so precious.

Enjoy....

Missing Home

2008-11-11T19:53:00.003-06:00

My visit with our baby boy tonight was good. He was just resting. They call it “behaving” … so cute. They ALL do it. He is back under the light so he has to wear his “sunglasses” which I have decided I hate very much. I can’t see his precious face with those things on! It kills me to sit there and watch my little baby lick his lips. There’s junk on them and I just want to clean him up. His little feet are peeling, which is not out of the ordinary, but I want to clean him up. Motherly instincts I guess. It just bothers me.

I sat with him for awhile. He moved around quite a bit. I got some video of him moving around and will post that, but I believe I will have to post it on Kadin’s Journey and not on myspace. I can imbed it into the blog entry on Kadin’s Journey. Guess we’ll see. If it’s not there, you’ll know it did not work.

I know it takes only a short period of time for a mother and baby to bond when a baby is born at term. That is due to the mommy getting to hold and nurture the baby, meet their every need by changing diapers, nursing, swaddling, etc. I feel a bond between Kadin and I similar to that of an on time baby … it’s different though, and I’m so glad I have had those experiences with my other children. I’m just saying … I long to touch him, hold him, change his diapers, bathe him, feed him, take care of him every minute of every day and I’m not getting to do those things. Hormones raging doesn’t help either. I burst into tears just thinking about it. I will be so grateful when I can actually do those things. Our bond is there, though. As I have written before, he responds to me when I touch him or when I talk to him. It hurts me more now to leave him than it did in the beginning as I was trying to process all of this. I need to be touching him. I feel it is a reassurance of some sort for us both.

All this reminded me about the other day when I was discharged from the hospital. They wheeled me out in a wheelchair, as is hospital policy. Danny went to get the truck while I waited with the attendant. When he pulled up, we started loading my things into the truck. I opened the front door and was hit right in the face with the smell of our truck. It brought me to tears. It was “home”. I had not seen outside in several days and now to be getting a smell from “home” was almost more than I could take. My reaction brought tears to the attendants eyes which almost made me feel like a big dork. I didn’t care really, it was a sweet sensation ……

The NICU sent blankets and stuff home with me to wash. We provided some blankets for Kadin’s incubator. It helps kinda decorate his bed and personalize it somewhat. The nurse told me that any of his blankets can’t go to the hospital laundry or they’ll never been seen again. So I will be washing them here and returning them for him…

My family is coming back this Friday. I can not wait. I have been counting down the days ever since they left. My husband is such an inspiration to me. He is so uplifting and encouraging, always positive. He is such a sweetheart. I don’t think I could have ever made it this far without his love and support. I realize not everyone has the kind of relationship he and I share, so I do know how very blessed I am. I miss him being here with me to help me get thru … Him helping me get thru helped him to get thru … does that make sense? He keeps in touch with me all day long via text and phone calls. He checks on me for no reason. He reassures me we are going to make it thru this with flying colors. It is hard on him to not be with me, as it is for me. I just hope he knows how much he is loved and missed … and appreciated.

I am such a softie, very sentimental … so much it is tormenting to me how sentimental I am. I’ve always been that way, but when it comes to someone who reciprocates those emotions, I’m even worse, lol. I care so very much about people and with these dang hormones out of whack, I’m a big ole cry baby. It’s to my disadvantage tho because some people don’t appreciate caring people. That’s a whole nother blog - and not one for today!

I hope this video loads correctly and if it does, I hope you enjoy it. My precious little man. I mostly got video of his foot, since I don’t really like the way they have his face covered and all that.

Until next time …..

Positives!

2008-11-11T13:40:00.001-06:00

My body must be telling me something, as the nurse put it. I went to bed last night at midnight after my 12AM pumping and set my alarm to wake me up at 3 for another pumping. I never heard my alarm and woke up at ten til 9. Wow! I could not believe it. I was upset with myself for not waking up but I guess my body needed rest. I feel good today except the pumping makes me really sleepy. I guess it takes a lot out of me.

I made it to the hospital about 10AM. The Dr. was just looking at the baby’s chart and his results from what they did yesterday. He told me he would be with me in a little while. I sat by Kadin’s bedside and talked to him, prayed for him, touched and loved on him. His monitor went off about 3 times and the nurse said he was excited that I was there. That made me cry. I love to have a response out of my baby in knowing that I am there for him. He calmed down when I talked to him. I told him everyone loves him and is praying for him. I put my little finger in his and he grasps me. Overwhelming feeling ….

So after Dr. Porter finished his assessment of all the records, he came over to Kadin’s beside to talk to me. The first words out of his mouth were this:

“What we are looking at with your baby is a whole lot of positives!”

Wait … did I just hear you correctly? This is coming from a Dr. who only speaks factually … He doesn’t want to get hopes up or down for family’s, but wants us to remain positive thru it all. So my response was “WONDERFUL NEWS!” I am not surprised tho simply because of who God is. God hears our prayers and there are a lot of people praying for our baby. I know for myself when I see him, I pray for him and speak life and healing over his body. I appropriate the blood of Jesus around him and pray that he is whole. I pray that God continue growing and forming everything just to his perfection. I know God won’t let any of us down on this. I feel it in my bones.

Then Dr. Porter began telling me all of the following:

Kadin’s second head scan came back normal. This was just a routine follow up from the first one a few days ago. No brain bleeds. Excellent news.

The echocardiogram that was done yesterday indicates that the vessel we are concerned about appears to be very very small and closing. In babies who are born at term, this vessel usually closes within about 3 days. Kadin’s is very very small so the Dr. is hopeful that it is in the process of closing. If it remains open, it can cause a lot of issues for the baby. One of those is that it backs blood into the lungs. That is what triggered this test … there appeared to be fluid on his lungs. The xrays today show less fluid so we are hopeful. Very good sign!

Kadin will be put back under the light for jaundice. Not sure what he said about all that, but this is absolutely normal for our baby and no worries.

Feedings are being increased from 1.5cc to 3cc.

Dr. Porter said everything is looking very well for our baby. I have said it before, I am believing his only drawback is that he came too early. Everything else will turn out perfectly for him. We just have to wait and let him grow. I could not see myself or my family making it out of this, but I see it now ……

Internet

2008-11-10T19:19:00.002-06:00

Geesh ... I have wireless internet in my room but it only gets like 1.0 mbps and that really STINKS! So, here I am, sitting out in the lobby by the elevator and picking up 48 mbps. My room is just a few feet down the hallway, so I figured I would write my blogs in the room in a word processor program and then come out here and post them! I was told by another resident that she complained about not being able to get the internet in her room and the President of the Board was supposed to be doing something to fix that. Guess we'll see .... I can get it hit and miss in my room, some times of the day are better than others, but it is frustrating as all get out. Anyway ... that's sometimes why I don't get an update on here as quickly as I would like and then why you get 3 at once !!! lol

I am going to go see Kadin in just a little bit. I will have an update after that I'm sure. I hate not being able to be with him all the time. I can't just sit in his room. It seems like there are rarely any parents over there when I go. It's raining here too, so that's a nice change of pace. I love the rain. REALLY LOVE THE RAIN .........

Your Stories

2008-11-10T19:08:00.000-06:00

I have noticed that some of you have had your share of issues with preemies, or with your babies being in NICU. I am not sure how it is that I have never known this or realized it (maybe a couple of you I knew about, but for the most part, I was clueless!) …

It helps me to read about your successes and your ups and downs. It helps me to know that I am not alone in this, that even some of you have been thru a portion of what I am going thru. I hate that we have had to experience it, but I would not change a thing in this world about what all of this has taught me in such a short time.

I am interested in “hearing” your stories. If you can bare to tell them, which I am sure you can, please respond to this blog and tell me your story. I want to know when your babies were born, the ups and downs, the uncertain times, the strengthening times, the smiles, the tears … I want to know it all! I need encouragement here, and I no doubt have had that from all of you precious family and friends … but I am interested, and I know you can provide me with some information on how you handled things, how you may have had no hope and then you found a silver lining, etc …

So please … won’t you tell me?!

Benefit Fund Established

2008-11-10T19:07:00.001-06:00

I learned today that there is now an account set up at our bank to help defray travel and any other unexpected expenses. I am so grateful for this, I just can’t say it enough. So for those of you have asked me, here is the information for the account:

Danny and Leslie Kirkpatrick Benefit Fund
Big Lake Bank
P.O. Box 10
Big Lake, TX 76932

I have the account number but don’t think it is necessary. I was told any donations just need to have it notated that it’s for the benefit fund and the tellers will know which account it is.
I am waiting on an update for the bake sale. I know it is November 14th, but I don’t know what time or the location. Joe has helped set that one up and been involved in it in getting me information for it so I am waiting for him to get back with me with that information. When I have it, I will let you all know.

Thank you so much everyone …. Almost another day down in this new stage of life.

My visit today....

2008-11-10T12:12:00.001-06:00

I slept well last night considering I hate not being with my family. Of course, waking up every 3 hours is a change for me, but now I am conditioned for it. I actually look forward to it knowing it is for the goodness of our son that I do it.

I went to the NICU this morning. You have to tell them at the front who you are and what baby you are going to see. They then call back to your unit and ask if it's ok to come back. They told me "Sure, go ahead!" ... So I scrubbed in and headed back to Kadin's unit. When I got there, there was a tech at hit bedside doing a sonogram on him. The nurse was surprised to see me and said they were supposed to ask me to wait. Woopsie, too late. I offered to go back but she said it was no problem. Anyway ... the sonogram was of his heart. The Dr. said on his chest x-ray there was some indication of fluid on the lungs, which can come from several different things taking place, but one of the most common is that there is an opening in the lines coming from the heart that should be closed. The Dr. said the Tech was not real happy with what he saw on the sonogram, but that they would leave that to the cardiologist to read and decide. If there is an opening, it will need to be closed. Their first option for closing it is to administer medication to shrink the opening and close it. Sometimes that is effective, sometimes it re-opens. Ultimately, if the opening does not shut and stay shut, we are looking at surgery. I was assured we are a long ways from that.

Kadin was receiving more blood this morning. I think this is the 3rd time he has gotten blood. It takes hours to give it to him and sometimes he is a little antsy when they start messing with him so much so the nurse sedated him during all of this and when I left he was resting fairly well. I did not touch him this morning, just wanted him to rest.

Dr. Porter also said that Kadin will get another head scan at some point today. There was nothing that triggered it, just routine to follow up from the first one. He is still tolerating his milk well and I am glad about that. I can actually tell he has grown a little bit since he was born. That is always encouraging to see.

My first night here alone was a little difficult. I made it through, thankfully. I learned from my husband today of all the wonderful things that are taking place back home on Kadin's behalf. I am absolutely blown away by the generosity and care that our community has shown for us. There is an account set up at our bank now, but I don't have the account number or the information. I will post that when it is available. I know several of you have asked me for that information but I did not have anything until today. It will be sometime later this afternoon before I get all the details.

I am just so grateful for every minute that I am alive. My heart has been reformed in so many ways thru all of this. I have forever been changed and I could not be more thankful for it all.

Please continue your prayers for our family. I appreciate the intercessory prayers more than you will ever know ....

Love,Leslie

Alone

2008-11-09T17:54:00.003-06:00

It sucks. Plain and simple. Thank GOD it's only 4 more days until I see my family again. I can't wait. They are such a vital part to my surviving this. More importantly than me making it thru, I worry about them. I have tried to be encouraging and not cry much around them but when my little boy looks up to me with tears in his eyes and says "Mommy I don't wanna leave you!" I can't help but break down. My babygirl grabs onto me and won't let go ... yeah, I tend to get a little more than weapy eyed. I know it's going to be ok, but my children are my world and I want them to be ok.

Kadin is still doing well today. They made some adjustments on his ventilator this weekend but when his doctor came in this morning he did not seem to like the changes and was getting clarification on what the changes meant and all that. He was going to update me this afternoon when I went to see the baby but it seemed like they had a pressing issue with another baby and he was busy. I will get the update in the morning since he will be there. No biggie really since Kadin is doing so well. If anything changes of significance, they will call me anyway.

I never thought I would be so glad to report any news about poopie diapers! But Kadin had his frst really big poopie diaper today about 2:30!! She said he filled his diaper, which really isn't that much considering the size of his diapers, but still, for him, it was a LOT and I was so thrilled!

It is so quiet in my room. What I wouldn't give for some noise from my children. Their presence is very much needed right now. They have only been gone for about half an hour but it seems like forever.

I am battling a headache today. Not sure what it's origin is, but I am thinking it is one of my teeth. Great. That's all I need. My wisdom tooth doesn't seem to be doing very well. Nothing is touching the headache.

I suppose I am going to finish straightening my room now and get everything organized again. We kinda just let the kids take over the room this weekend, trying to make it theirs .... feeling comfortable in the place. My mom bought me some pineapple juice, which I absolutely LOVE, and I need to take that to my fridge. Not even supposed to have it in my room. Woops, rule breaker!!! After I am finished in here I will probably go dowwnstairs to eat and then wait to go see my son again .....

For my family ... I miss you more than words can say. I know we will be together again shortly and until then we will do everything we can to "see" each other, talk, text, whatever. I pray that this time goes swiftly so that we will all be home with Kadin and watching our lives continue to unfold. I LOVE YOU ALL!

A Faith Renewed

2008-11-08T23:40:00.002-06:00

My faith has always been strong. There have been times in my life, particularly in the past few years, that have left me wondering if God still remembered me. He comforted my tears and fears many times, but I still couldn't help question his presence in my life. I have never been more certain that God still performs miracles than I am now. It is nothing less than a miracle that our baby boy is doing as well as he is doing. I pray that it never ends. I pray that he is WHOLE in the name of Jesus and his only drawback is that he came too early. I don't really have a lot to say regarding his condition at this point because, miraculously, there have been no changes. I am NOT waiting for the other shoe to drop. I am believing this is the handprint of our Lord an Savior. I am believing that things are going to just continue to look up from here.

I wanted to share a little story ... it's not magical, it's not fancy, it's not one to keep you on the edge of your seat, but it is real and it is true, and it happened to me just today. I have not shared this with anyone at this point. I'm not sure why I haven't, I just haven't. But as I was getting ready for my day, it came time to shower. I usually pray when I take a shower or bathe, so today was no different. I got the water running, began preparing in my mind what it was I wanted to tell God today ... thanking him was top on the list. I began pouring my heart out to him in a little more than a whisper. Tears poured from my eyes as I tried to form the words thru trembling lips. I am so grateful for how my son is progressing. I know God knows my heart, but I still feel I have to tell him. I remember just whispering the words "Help me Lord" .... My intention was to ask God to continue to give me the strength to get thru whatever comes our way with Kadin. All I did was whisper "Help me Lord" about twice and immediately I knew something was different. I felt a presence blanket me. I actually thought someone had moved the shower curtain and I opened my eyes to find nothing different ... just me standing in the pouring hot water. It felt like a small pressure in the air, like someone had walked up beside me, but I felt was more like several people walking up to me at once ... I can't explain it but I knew when I realized no one had moved the shower curtain that Jesus had visited me right there. He had met me where I asked him to. He comforted me. I know in my heart that no matter what we endure or face with Kadin, the strength will be provided. The peace will reign. I know in my heart that our wait here is nothing but a growing period for our son until it is safe enough for him to go home. If I have ever been sure about anything, it is this ..... God still can.

We did not visit him but once today. My mom drove up this afternoon and made it here in town about 5:15. Since the neonatal until closes from 6-8 AM and PM, I did not want to be rushed in visiting the baby. We met my mom and my Aunt Rose at a Mexican Inn for dinner and visited for a little bit before we went ahead and went to the hospital. We had called a few times today and was told there had been no changes, he was doing just fine. I am amazed every time I hear those words.

So when we made it to the hospital, it was time to scrub in and go visit. They had him laying on his right side. He is just so precious. I can tell he has grown. Even Robbi said he looked a lot different than when she first saw him. I am so eager and ready to hold my baby. I have never gotten to hold him before, of course. As he grows, so does my love for him and my desire to finally get him in my arms. At first I was timid and scared to even touch him, but now, I can't wait to.

The nurse on shift said he had a wonderful day. He is tolerating his milk very well and actually really liking it. I asked if he had been weighed since they told us he weighed 1 lb. 4 oz. - So the nurse looked it up for me since he is weighed at midnight every night. She said last night when he was weighed, he was 1 lb. and 7 oz. - MIRACLE! He has already exceeded his birth weight and he is only 5 days old. They were impressed by this and said it was a wonderful thing for him to be doing so well. Everyone has said to expect ups and downs ... I have had enough of the ups and downs already. His first couple of days were not so good ... they were not "bad" but they were nothing like what we are experiencing for the past 3 days now. the nurse also gave me a formula to figure his weight when they just tell me what he weighs in grams. I have been filled with terminology and equations that I never even knew existed. I feel a little more brilliant, lol.

I suppose this blog wouldn't be complete with letting you know how the visit with my children has gone. It was rough at first. No, wait ... it was very hard at first. They are still not understanding the situation and I doubt they ever do. Robbi has had to deal with a few different issues and they are just things that will take time to iron out. There is not a quick fix for anything that we are going thru right now. Dakota was tearful today not undertanding a couple of things either and it broke my heart to see him cry. I cried a few times today myself just from the reality of how difficult all of this is for my children. It wasn't supposed to be this way, but I keep reassuring them that it will only be 4 days at a time in between us seeing each other every week. Dakota's daddy is going to set up his web cam and I am going to see about getting one so that Dakota and I can "see" each other during the week .... I can't wait for that experience !!!!!!

We took the kids all over this RMH ... they played pool, went outside, rode the eleveator, climbed the stairs, etc .... we bought a Monopoly game and Dakota won. He always wins! Tomorrow we will have breakfast with my mom and then they will go back with her for the week. It is going to be a highly emotional time for me when they are all gone and I am here alone. I will have a lot of "me" time, but without quoting Gary Chapman to my sister, I know that out of the darkest times in my life comes the biggest blessings ... I am holding onto that promise. One day I will look back at this and realize just how miraculous this time has been. Not only is Kadin growing and doing well, I am growing. I am stronger and better for it ....

I will absolutely never take for granted the simple things again ......

Goodnight ......

My TEMPORARY Address

2008-11-08T23:31:00.002-06:00

I posted this already but some are still asking for me to post it again so here is my address where I can be reached via snail mail. You can always email me at flossykirk@gmail.com or redlady88@hotmail.com. It would be great to hear from you!

Ronald McDonald House of Fort Worth

(My Name) - Room 201

1004 7th Avenue

Fort Worth, TX 76104

Don't Let It End

2008-11-08T09:27:00.002-06:00

I pray the experiences we have had in the past few days don't change much. I finally have some much needed relief and peace of mind from Kadin doing so well. There have been no changes in the past 2-3 days and wow, what a fantastic feeling. He is feeding and feeding well. They say he is rreeeeeeeeeeeeeeeeeeeeaaally liking momma's milk. It is such an urgency for me to pump because I know it is going for the goodness of my little boy.

My children are with me and I could not be happier. Ok, well, maybe I could. I could be happier if we were all home, but yeah, you get the picture.

I can't believe I don't really have much to say, but I am taking it and running with it. We will see Kadin later today. Right now I am going downstairs to have some breakfast with the kids and let them have the run of me! lol

More later, when I have something to say ...

Oh wait ... Let me just say that I am blessed beyond measure by all the people that I have met thru this experience. Some of you, the friends that I already have, have sent me new friends who have gone thru the same things we are experiencing. It is very helpful to have that support system of people who have been there, who have had great successes on their own journeys, and who can look at me and say "Hang on!" It is all an added bonus to the much needed support that we are already receiving from our other friends and family. I don't know what I would do without all of you ... and I mean each and every one of you that have taken some role in support for me and my family, no matter how big or small ... it will never be forgotten.

Leslie and Family

Elation

2008-11-07T12:18:00.000-06:00

Only have a minute ... so much to do. Hard to believe, I know.
We visited Kadin again this morning. Partner Dr. Grubbs was there to give us an update. I am so elated right now I never want it to end...
The term he used to describe Kadin's progress is "remarkably well" .... He said he will have ups and downs, but he has done so well for the past 2 days.
Feeding is beginning today. All this pumping has been waiting for this moment. He will get about 2 teaspoons today thru his feeding tube and they will see how he tolerates it and increase or decrease as needed. Very exciting news !!! Even though that is exciting, believe it or not, babies are not "hungry" at this point. He does need it for nutrition and growth.
I just don't really have anything else to update on. The Dr. seemed so positive this morning and maybe even a little surprised at how well Kadin has stabilized.
We took more pictures. They had his bed changed around and it looks so cute. Will do all that later ...
For now, I have to get things in order to go get my children tonight!

Last Night's Visit

2008-11-07T08:40:00.003-06:00

It seems I have been able to visit Kadin about 3 times a day. I get there in the morning when the Dr. is there which is always good because updates are available at that time. Usually mid afternoon I get in another visit, and then a late evening visit. Since the unit closes between the hours of 6-8 both AM and PM, I don't worry about those times.

I wrote last night about our visit, but myspace at the post. Either that, or my internet here is just not very reliable. I am guessing it's probably more the internet than anything, but I had a good long detailed account of last night's visit and it's gone. I will attempt to recall it all. I've slept since then!

When we got to the visit, the first thing we noticed was the blanket that was made for Kadin was draped over his bed. This is a common sight for the unit. In fact, we had wondered if we needed to bring him a blanket, but they told us that the volunteers made them and he would be getting one soon. So YAY, he has one and it is so cute.

The nurse we had last night is a very interactive nurse and I think I will be partial to her. She actually encouraged us touching him. The "min stim" period (minimal stimulation) is over and she said touching now more often is a good thing. She let down the top on his Cadillac and there he was, just laying there for us to hold. Rubbing is not encouraged because of it being somewhat painful for him, but the firm holding is comforting since it helps make him feel swaddled.

As I had mentioned the other day, his left eye was opening. Last night, his right eye was trying to open also and it was so precious to see him try to raise his eyebrows to open them to see. Of course, his field of vision is uncertain at this early age, but she said he can see movement. He did seem to try to open his eyes when I would talk to him and touch him. I like to see that.

I understand it to be that he had a very good day. After the news of his head sonogram being "negative" I have been on a high. The nurse said last night that if they have a negative result from the head scan, usually they don't ever develop any brain bleeds and are considered out of the woods with that happening. YAY !!!!! I know God has his hand on this little man. I don't know why he had to come so early but I know there are great and mighty things in store for him.

As I said earlier, the nurse we had for the past two evenings is a very interactive nurse. She had us taking pictures of him in different poses. She put a measuring tape next to him and we took a picture of that. She put Danny's wedding ring around Kadin's arm and took a picture of that. She took off his hat so we could see his full head and we discovered that he actually has some hair, which we were told in the beginning he did not have ... ok. The hair is dark and his eyelashes are as blonde as they can be. He is just perfect.

When we told the nurse of our misfortune with the breastpump issue, she went and got us the parts that we needed. She said if insurance won't pay for them, it will be billed to us but at least we did not have to shell out the $90 for it right now. What a blessing! So I was able to pump last night and all thru the night just fine! Our water issue seems to have cleared up, which sets my mind at ease a little more.

I made arrangements for my children to be here this weekend. Dakota called me last night and was crying. It broke my heart. I did not have anything definite to tell him as far as when we would see each other because my nephew went in the hospital and my mom said she thought maybe her plans to come were on hold. However, God made a way and I will be seeing my children tonight. I am so very excited about it. I wish I could see JT too and I know I will soon. I talked to Dakota's daddy for a little bit about him and he is doing all he can to help Dakota thru this is. I feel being with his daddy is the best place for him to be if he can be, especially with having separation anxiety. I know he loves to be with my mom and sister and my nephew, but I reflect back to when I was younger and stayed with my grandparents, I was heartbroken from missing my mom and dad. I loved being with my grandparents, but I remember the hurt of not being with my family, and that was only for a weekly summer visit!!! I hate to have my children separated during these times, but that is a whole nother blog. They will be here together this weekend and I just can not wait !!!

I guess it's time to go for our morning visit. I pray all went well thru the night. I did not call the NICU during the night. I was so exhausted. It was all I could do to get up and pump for the baby. I managed, but my head hit my chest a few times.

More later .....

Praise God for ONE MORE MILESTONE!

2008-11-06T19:00:00.002-06:00

Quickly, I wanted to update again. I know I can tend to run on and on and on and on when I update, but we are just so very excited about having just returned from our visit with the baby ....

He looked so wonderful when we looked at him. They had just given him blood so his color was wonderful. They had the light off, his sunglasses were still removed, so he looked more like our little baby boy rather than a motorcycle rider, lol. Nothing wrong with motorcycle riders, butI just wanna see my baby's face. He was resting and looked very peaceful.

While we were standing there, the Dr. on call for the evening came over and asked how we were and said that Kadin was doing very well right now. He also said that the brain scan to check for brain bleeds came back EXCELLENT and there was nothing wrong in that area. PRAISE THE LIVING GOD !!!!!! He said Kadin is just exactly where he should be for his gestational age and he seems to be doing very well. The new ventilator is like a Cadillac for him and he is responding very positively to everything.

He was so cute to watch. You know babies learn how to "suck" in the womb, you can actually see at times them sucking their thumbs while in utero, or even just making the sucking motions. My batteries died, but I attempted to get video of Kadin practicing his sucking motions. It was adorable!!! I can't wait to hold him soon. He seems to be doing so well, I don't want it to end.

We have had a little setback with the nursing/pumping issue. We came back to the room and I was going to clean up all the equipment for the breast pump. The water to the RMH had been turned off earlier today for quite some time for some repairs to be done. Before we left for our visit with Kadin, we flushed the lines, let the air out and any debris that might have been in the pipes. Unfortunately, not everything was cleared out and when I went to wash the equipment, there was black dots (extremely small!) all over the bottles and pumping equipment. I could not imagine what it was, but it wasn't coming off. To make a long story short, Danny has gone over to the hospital to get me some new supplies. I can't pump without clean and sterile equipment. It's just too risky for any baby, but especially a baby as young as ours! I have let the water run ever since he left and he still has not returned and it's been a little while. (Update: I just heard from him and he said I will not be able to double pump, just pump one side at a time or buy more pieces ... the kit is $90. I am wondering if RMH will replace my stuff since it was ruined by their repairs?)

Well, ok, I'm going to try to get some other things done around here and figure out what to eat. This place is amazing, there is tons of food in the kitchen to eat and every night a different type of organization or business or even club at school comes to cook us dinner. The first night we were here it was dinner by the National Honor Society students.

Alright ... I'm out of here for now. More later ...

Another Fruitful Day

2008-11-06T16:23:00.001-06:00

Today has been another good day. When I pumped this morning, I called the NICU and got an update. They told me he was "behaving", lol .... that really there was nothing to update at that time, which was really good news. Anytime there is not really anything to update, that is very good news to us! They said his organs are working well since he finally decided to give them "a little poopie" as she said! He had gotten his antibiotics already, his blood gas was good, and he was resting.
We did get to visit with the Dr. when we went to the unit at about 10AM. He said that he was going to be giving him more blood. They are having to sample his blood and Kadin is small enough that he is not able to reproduce his blood quick enough so his red blood cell count drops. We noticed they had him on a different ventilator. It is a more sophisticated device where they are able to tune it in better and are getting a better response out of Kadin on this machine. His left eye has opened and it is such a precious sight to see him trying to open it even further. Of course, his eyes are not fully developed enough to be open and alert and looking around but he will get there. I was able to take his temperature for the first time this morning. I was terrified .... but I did it. And he did not like it at all. He seemed to calm down when I started talking to him and telling him it would be alright. He was scheduled to have a brain scan today (I think I wrote about that already) and we should have the results of that tomorrow sometime. I will definitely try to get those results on here asap.
We will be going back over in just a little bit. I pray everything has gone well since we visited this morning. I am expecting good news. He is so strong and is moving more and more every day. I am even stronger today, I have teared up a few times, but not all out crying like I was doing. I guess they all knew what they were talking about in saying the first 3 days are the most difficult ... until you finally get a feel for how things are going to go, the terminology that is thrown at you, the ups and downs of the good and bad days, facing the entire situations desperation, etc. It also helps that Danny and I have met some of the other parents of the babies in NICU. Their stories are similar to ours. Their pain is the same as ours. Some of them are far from home, just as we are, so knowing we are not alone is a great comfort.
We have been notified that there are several benefits in the works and I can't even express what this does for my heart. Just to know that others care enough to try to help is such a blessing. People that you never really think will pull thru for you will surprise you. It is amazing and we are so grateful for everything that everyone has done and is continuing to do. I will get all the information posted here if anyone gets it to me. I know there is a bake sale taking place on Friday November 14th, but I don't know where. I know there is an account being opened but I don't know when or anything else about it. I was told today there are a couple of other things in the works and a benefit being organzied in Rankin, even .... WOW! This always happened to and for other people. I know I could never repay what my heart feels about all this ......
I added some pictures to Kadin's album. I hope you all enjoy them. I burst with pride when I see them. I am so proud of the gift God has given to my family ......
Neverending thanks for your thoughts and prayers ... I can't say that enough. I know it is what is getting us thru this.

Love Love Love,
Leslie and Family

PS.... I have an address here at the RMH is anyone wants to write. I enjoy getting mail (cards, letters, etc), so write me !!!

Ronald McDonald House of Fort Worth
(My Name) - Room 201
1004 7th Avenue
Fort Worth, TX 76104

A Victorious Day

2008-11-06T00:53:00.000-06:00

I am praising God that we had a victorious day. I have learned quickly in the first 3 days not to get excited about anything, and not to get upset about anything, just take it as it comes, deal with it, keep a positive attitude, and wait for the next milestone.
I just about finished getting settled into the RMH. It is quite an adjustment to "move" so suddenly. It has helped me a great deal to have Danny here with me for the comfort and familiarity. He helped me accomplish a lot today. I don't think I could have done it without him. Maybe a better description would be that I don't want to. I know you all understand how unsettling it is for you to go thru such sudden change and then have to do it alone. I have never been one who adapts to change very well, so having it slung in my lap has had me doing loops.
I am managing to not cry as much now. Either that, or I have just had a spectuacular day. I pray for the day that I don't shed a tear. It is so difficult though. I miss my whole world. That world consists of my precious children and my home. I know I can't leave here while part of my heart is lying in Harris Methodist NICU. It just isn't going to happen. I know also that part of the crying has to do with hormones, but I can't help but think if I had not just given birth to a baby, I would still be feeling the same way about having to be away from my children that I need so much, and who also need me greatly.
I set my alarm last night to get up every 3 hours and pump milk. It is up to me to provide that nutrition for our baby boy, so I was determined to get up and pump. I have a really nice double breast pump that came from the breastfeeding resource center of the hospital. I have never seen one like this before, but it is really nice. Since Kadin is in NICU, I got a month's rental for free. I got up 3 times in the night and pumped and got absolutely nothing. I did the same routine thru out the day and finally ... FINALLY! at 5PM's pump session I got enough to cover the bottom of a plastic sterile bottle. YAY !!!!! They told me in the NICU they did not care if I could only provide droplets at this point, any was better than nothing, and with him being so small, drops is all he will be able to handle. I was so excited I had to take pictures of the milk. Big dork, but hey ... like I said earlier, another milestone! I also managed to get more milk pumped later in the evening, so my hopes are high for what I will get in the night.
We visited Kadin a couple of times today and called a few times for updates. When we visited this morning, the Dr. said Kadin had some changes in the night around 2:30AM, and not for the better. This is what his list of changes looked like:
♥ Kadin's metabolic acid production is elevated. This could be caused by several things, one of them being that he is urinating so much. This isn't necessarily a bad thing that he urinates so much because that shows that his kidneys are functioning very well. However, they have to eliminate the cause of the elevation.
♥ A head sonogram is scheduled or tomorrow (11-06-08) to check for brain bleeds and see if that is the cause of the elevation.
♥ Kadin had a slight fever in the night but quickly snapped out of that issue.
♥ Upon our visitation this morning, the nurse was sedating Kadin somewhat because he had become very irritated and she wanted him to calm down and rest. It worked rather quickly.
♥ Kadin is riding the ventilator. They had to move him back up from a 15 to a 44 but he is not receiving any extra oxygen. He is breathing the same air that we breathe and doing very well with it. He has figured out with the ventilator turned up, he doesn't have to work hard at it, but they are moving him back down slowly.
♥ His white blood cell count is still up but falling. Good indication that the infection is being fought well with the antibiotics. His immature white blood cell count is up, and the Dr. doesn't like to see this. Red blood cell count is wonderful after receiving blood yesterday.
♥ Kadin continues to receive his "steak and taters" ... vitamins, fats, proteins, all that good stuff necessary for growing plump!
There were no changes to report for the rest of the day. Usually, SOMETHING changes, but nothing today. Very encouraging for us. When we visited tonight he became very excited and started moving all around. He recognized our voices and was excited that we were there. The nurse said he would get excited at first but it would have a soothing effect on him. I didn't realize just how much, but he had his little excitement period then he relaxed and went to sleep. It's awesome to see ... that such a small being can react the way he does. The nurse said he does not act the same when he is with all the nurses and the minute we walk in he is all excited. I love it ... I feel the bond forming and I could not be happier.
Did I mention that I am totally in love with this baby's feet? They are so precious. They are PERFECT. I mean, they are so small yet so wonderfully made. I have a lot of pictures to add to his album, so I will be doing that probably tomorrow. We have so many pictures of him.
The hospital volunteers make blankets to put over the baby's incubators and tonight we got to see Kadin's. It is so precious. It has tons of bold colors in it, mostly red, blue, and yellow, and I love it. I have a picture of it too and will post it also tomorrow probably. They can't put it on his bed until his "light" gets turned off. He isn't jaundiced or anything, I just can't remember why he has the light.
Also, I have started a blog at blogspot.com .... I am going to make these updates public so that others who do not have a myspace can read them and get updates. If you know anyone who is interested in reading them, the url is:
http://kadinsjourney.blogspot.com/
I will have pictures on there also, just not sure when I will get all that done. Probably when I am totally alone. I don't want to "double-do" myself but there are a lot of ppl that don't have a myspace that can't read my updates that are sending me emails and texts wanting to know how things are. I hope this will be a good method of communication and maybe help someone else along the way.
I am seeing things much brighter today. My faith is growing every day. I have much hope for our child and his progress. I know just as he has good days and bad days, so will I, but I pray that my faith will keep me more on the up side than the down side, even in the storm.
I have not really answered very many messages and have certainly not posted any comments to others lately, but I hope you all understand. I am receiving ssssoooooooo many messages and it is hard for me to answer them all. I do want you all to know that I am appreciative of all the well wishes and prayers that are on our behalf. It means a lot to me and my family. I know some of you have written saying you want to come visit. I am really uncertain about how each of my days are going to be at this point. I am trying to get myself into a good routine for eating, sleeping, pumping, visiting Kadin, laundry, bills, down time, etc .... It may be another week or so before I feel settled enough to sit and visit with anyone. I am fairly certain that at this point, Kadin can have no visitors other than family. I will have to ask about that.
Thank you all for everything ... I can't express to you enough how much it means to me that when tough times come around, everyone seems to pull together and get thru it. I was notified today that there is going to be a bake sale in our honor next Friday to help defray the cost of travel and any other expenses. I was also told there is an account being set up at the bank in town for donations for the same ... I was very humbled at this news and extremely grateful and appreciative. It is such a comfort to me that others are willing to help ..... It just reminds me that I am in the same position as many others were in when I donated to them ... five dollars here, ten dollars there .... brownies, cakes, cookies sold on their behalf to raise a little money. There are always big jars around town to help someone in the community and I am so glad that I gave during those times. I would be glad regardless, but it just seems to mean more to me now that I may know somewhat of what others went thru in their times of need ....
I will close this with a heavy heart for a good night hug and kiss from my children. Those are the simple things that mean so much to my world. They are what pull me thru on a daily basis, and I would give anything to hold my little Kota's hand as he falls asleep at night, to smell his sweetness after his bedtime bath, to say a prayer with him as I tuck him in bed ... to feel sissy's hair and how soft she got it drying it after her shower, to hear her sweet voice tell me "I luh you too momma!" as she takes herself to bed. I will never again take for granted any of those precious things. I will savor them every single minute that I can. The are the heart of me and I just pray they know how much they are loved and missed.

Love from deep within,
Leslie