Disappointed

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

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

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

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

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

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!

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....

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! :(

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

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

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

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 ....

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

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

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

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 ....

More

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

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!

..... 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

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

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.

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

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

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!

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 . . .