It is 11:37pm and we have to be at the hospital in a little over 6 hours. That means little to no sleep for me tonight. Kadin is still awake, as they wanted us to keep him up for about an hour longer than his regular bed-time but it is way past that already and he is still blowin and goin! I just pray that I hear the alarm in the AM and don't sleep past time to get up and go... I have a real fear for doing that, you know - missing the important things in life because I overslept. I sleep very lightly these days, but on occasionally I will fall into a deep sleep and NOTHING wakes me up. Just can't do that tonight, lol....
We went to Kadin's pre-op appointment and it was quick and painless, unlike tomorrow's scheduled events. They weighed and measured him, we talked in great detail about his past medical history, we visited with the anesthesiologist, and Kadin fell in love! That's right ... he loves Tracey from the anesthesiology department. She came in and he lit up, he leaned over many times trying to get to her, and when she held him, he went right for her beautiful hair and cute stylish glasses!
I have never been as convinced as I am right now that Cook Children's Medical Center has an abundance of angels working there. While we were there, Kadin was passed from nurse to nurse and HE LOVED IT! Oh my, I mean he LOVED being in all those arms today. He NEVER reacts like that to strangers, but today, the nurses were not strangers to him. It was as if he were "home" again. He was comfortable, he was smiling, happy, energetic, and very much in a happy place.
We are the first on the list in the morning. We are scheduled for 7:30am, not sure why we have to be there at 6am! *insert frowny face emoticon here* I know, we do what we have to do for our children but man ... I am just NOT a morning person so the fact that I am not even going to have adequate sleep is a sure sign that Starbucks will be my best friend in the morning and no one else should even attempt to speak to me until around noon. I know ... you are thinking "Then what the heck are you doing on the internet blogging at this hour?" Well, I logically am asking myself the same thing, but I assure you, even if I were to go lay my head on the pillow, as nervous as I am about this entire procedure, I would still not sleep a wink ... and then we go back to the fact that I fear I will not even wake up in the morning on time. This is an extremely vicious cycle, and we have to wake Kadin in the morning and give him a breathing treatment before we get to the hospital.
We don't know how long the surgery is going to be ... the Dr. we spoke to this afternoon said anywhere between 30 minutes to 2.5 hours. He also said he hopes we are prepared to stay as you never know how things will go with little ones who have CLD (chronic lung disease). We are prepared ... well, ok, not really, we don't want him to have any setbacks and it would be somewhat devestating, but we can handle it. I am unable for some strange reason to get on Facebook while we are here. I can only access it from my phone in the mobile version so I will just have to write my blogs here on blogspot and let it automatically feed it to Facebook ... so if any of you have any questions or concerns, go ahead and post them on Facebook as I will get the notifications that you have left me something. I will have my laptop in the hospital and will update as soon as I can. Recovery is supposed to be a few hours if everything is looking good .....
So now that I have pushed the limits and it is almost midnight (I have always told myself if I can go to bed at least before midnight, I will get a full night's sleep! lol) I should be going. Thank you for your prayers and concern for Kadin. Please pray for us to have strength tomorrow as I am sure we will be exhausted. And on top of all that ... we are missing the kids back home.
More updates tomorrow . . .
Tuesday, October 13, 2009
Friday, September 25, 2009
Still sick ...
Our little man is sick and I'm so worried about him. His cough seems to be worse today. I managed to get the meds down him without him throwing up. YAY MOM! But with him propped up beside me, I can clearly hear him wheezing. Going to give a breathing treatment while he is asleep so he will breathe in all the medication. He likes to play with the tubes when he is awake and lick on them and all that, lol ... so we don't know how much of the meds he actually gets. Tried the mask last night and that didn't work either. He wanted to eat it. Anyway, took him to the Dr. day before yesterday and he said if he had not been so cheerful at the visit he would be admitting him into the hospital and that we need to keep a close eye on him because he could turn worse within a matter of no time ..... He didn't drink all of his bottle this morning so I am concerned, and I have a road trip to make this evening and will be away from him for about 8 hours, give or take. I just worry ... and worry some more ... and then some more. He has surgery coming up in October and I am praying nothing hinders that. Have to go get things ready for my road trip, please pray for Kadin and I will try my best to update soon. I've gotten bad at updating, life just seems to take control and whiz on by .... Thank you for your prayers!!
Sunday, September 13, 2009
The Helmet
We didn't really know what to expect when Kadin was put in this cranial helmet. I was afraid he was going to fight it, but the minute that the Orthotist put it on him, he was good to go. We started out alternating off and on every hour. That was a little challenging, since we got it and went straight to eat and then had a ride home. But anyway, it was on and hour, off an hour, for the first day. The second day, we did 2 hour rotations with an hour off ... the next day, three hours... and finally, on the 4th day, it was an all day thing...something like that. You get the idea. He wears the helmet all day now and is allowed to take it off for an hour at a time. So every night, about 8pm, we take it off and give him his bath. We clean the helmet in the time frame that he has it off. He LOVES that thing!!! When you take it off of him, he reaches for it. I guess it has become some sort of security for him ??? It might itch a little too, but he doesn't seem to complain. His head is growing, which is a wonderful thing! He gets little "knots" on his head and when these appear, the Ortotist then cuts a hole in the helmet to allow for the growth. I still don't fully understand it, but it is working, so I will not question the process. I met a couple of other mothers in the rehab center who's babies also had helmets and one little boy had the entire top part of his cut out! That is GOOD progress, they say. We will get there. There is already a great change in the shape of Kadin's head. He looks WONDERFUL with it off. Kids everywhere look at it and just love it. Some even think it's a football helmet, especially at the games! I will post a pic of the helmet, but for blogging purposes, it has firetrucks and firefighters on it ... even a Dalmation puppy!!! He is even starting to play games with it. While he is sitting in his high chair, he leans his head down til the helmet crashes on the tray part of the chair. It's funny ... We will have to ween him off of it when it's time to not have it anymore because I am afraid he will be a monster without it. He sleeps in it and everything! He is doing wonderful with it and we can see the shift in his skull too.... It is awesome!!!
Kadin is scheduled for his next surgery on October 14th at Cook Children's Medical Center. This is the hypospadius (sp) and his circumcision. It is expected to be out-patient, but he has CLD and will be intubated for this surgery, so we just have to see how things go. We will be traveling to FW the night before and should, if everything goes as planned, be returning home that afternoon at some point. The Dr. (surgeon) told us that he will be swollen and bruised for about six weeks, so I am not looking forward to diaper changes and things of that nature for that month and a half! Poor baby ... I pray he does well and gets thru it ok. He has been thru so much and we feel this is one of the last things to conquer now! I appreciate all your prayers for this upcoming time in our lives.
As far as the development stages Kadin is going thru, he is doing soooooo much these days. He is able to roll over and over and over and over. He can sit with some support, but he is not sitting on his own at this point. He is not crawling either, but he is getting up on his knees and pushing/scooting himself. He babbles all the time and laughs so heartily! We just crack up when he laughs. It is from his innermost parts that the laugh comes all the way up!!! He sleeps thru the night still and wakes up so happy.
Kadin is enjoying real foods these days too ... mashed taters, mac and cheese, but he still loves his fruits and veggies! His daddy does not like veggies at all, lol .... so I don't let him feed him, ha ha ha. If I did, it would be bananas and applesauce all the time! Bless his heart ... he is such a sweet daddy and takes care of our son ALL the time. He and I help each other so much and sometimes we argue over who is going to get the bottle or change the diapers!!! Such nice things to argue about, but that's ok ... it's the only things we argue over, thank GOD! :) I am so blessed to have Danny as my husband...
Ok, so the helmet ... we go for a check up again the first part of October. I think Kadin is doing so well that they scheduled us out further than normal and said to just call if he had issues. So far so good ... no issues to worry with to this point, so we will just wait it out and see how things are the first part of October!
I just wanted to give a quick update since I don't do it near as much as I used to. LIFE happened once we got home and hasn't slowed down since! :) I will try to do better ... thanks for still keeping up with us. Drop us a line to let us know you have been here or look us up on Facebook (my email there is redlady88@yahoo.com)
Be blessed,
Leslie
Kadin is scheduled for his next surgery on October 14th at Cook Children's Medical Center. This is the hypospadius (sp) and his circumcision. It is expected to be out-patient, but he has CLD and will be intubated for this surgery, so we just have to see how things go. We will be traveling to FW the night before and should, if everything goes as planned, be returning home that afternoon at some point. The Dr. (surgeon) told us that he will be swollen and bruised for about six weeks, so I am not looking forward to diaper changes and things of that nature for that month and a half! Poor baby ... I pray he does well and gets thru it ok. He has been thru so much and we feel this is one of the last things to conquer now! I appreciate all your prayers for this upcoming time in our lives.
As far as the development stages Kadin is going thru, he is doing soooooo much these days. He is able to roll over and over and over and over. He can sit with some support, but he is not sitting on his own at this point. He is not crawling either, but he is getting up on his knees and pushing/scooting himself. He babbles all the time and laughs so heartily! We just crack up when he laughs. It is from his innermost parts that the laugh comes all the way up!!! He sleeps thru the night still and wakes up so happy.
Kadin is enjoying real foods these days too ... mashed taters, mac and cheese, but he still loves his fruits and veggies! His daddy does not like veggies at all, lol .... so I don't let him feed him, ha ha ha. If I did, it would be bananas and applesauce all the time! Bless his heart ... he is such a sweet daddy and takes care of our son ALL the time. He and I help each other so much and sometimes we argue over who is going to get the bottle or change the diapers!!! Such nice things to argue about, but that's ok ... it's the only things we argue over, thank GOD! :) I am so blessed to have Danny as my husband...
Ok, so the helmet ... we go for a check up again the first part of October. I think Kadin is doing so well that they scheduled us out further than normal and said to just call if he had issues. So far so good ... no issues to worry with to this point, so we will just wait it out and see how things are the first part of October!
I just wanted to give a quick update since I don't do it near as much as I used to. LIFE happened once we got home and hasn't slowed down since! :) I will try to do better ... thanks for still keeping up with us. Drop us a line to let us know you have been here or look us up on Facebook (my email there is redlady88@yahoo.com)
Be blessed,
Leslie
Encouraged
Sometimes life can beat you down. Sometimes you think you can't go on much further. My faith has always been my foundation for everything that I do. No, I have not been "perfect". I only know ONE who is perfect. He is my example, and I have often failed him. I don't feel worthy of good things being said about me ... so tonight, when I was reading some comments from a very sweet friend regarding what she thought about me and my family and the love we exhibit, I was humbled, and reminded that the kind of love she showed me is the kind we should show everyone. You see ... she and her husband walked the almost exact same path that Danny and I (and our children) walked for 4-5 months, and in many ways, we are still walking the same path. Our preemie babies were born within a month of each other, none of us were prepared for what awaited us, that's for sure. So tonight ... when I was reminded once again that there was someone out there that knows what we went thru, that knows what it takes to make it thru that uncertain time in life with a preemie (micro-preemie), that thinks as much of our family as we think of theirs, I was encouraged that there are still good and sweet people left in this world, who don't compliment you to get something out of you or to just blow sunshine up your backside ... they tell you these things because it's what's in their heart ... I pray special blessings for Hilarie for making my night and renewing my faith that things really will be ok in this life ....
Saturday, August 8, 2009
I Believe We Can Handle Anything
We finally had our CT scan and appt with Dr. Jeter on July 28th. The scan went very quickly, it took all of about 5 minutes maybe. Kadin was very cooperative, too. I took ALL the kids, since it was only the day after Robbi returned from her summer with her dad. I think there were 7 of us on the trip that day. Very busy ... but anyway, we had the scan done and then went to visit with the cranial/facial surgeon. The wait in his office was FOREVER! It was unbelievable. I could write a very long "short" story on my wait in the waiting room and the 3 precious little children that were waiting with their mommy (bless the mommy's heart!!!!) Anyway, that Dr. said that he wanted to refer us to West TX Rehab and go ahead and see about Kadin being fitted for a cranial helmet. He put it all in perspective for me, saying that Kadin's head could continue to reshape itself, but then again, it could not ... it's a chance we would be taking by not going ahead and having him wear a helmet for a month or two. So I called and made an appt with the Rehab and we had the scan for that on August 3rd. Danny was home from work in time to go with us and to be there with any questions. If anyone has ever had to be without your spouse for any length of time so they can work, you know how much better it is when you have 2 parents taking care of the child instead of just one! I was and am so grateful that he was able to make it home to go to this with us. So, in short ... it should be about another week and we will have a helmet for Kadin. We don't know how long he will have to wear it, we will go back every week I think and have it tightened and re-fitted according to his growth. I am apprehensive because I don't want him to hate it, but the Dr. at the Rehab did tell us that the problems usually lie with the parents and the grandparents, and to take comfort in knowing that the children adapt fairly quickly to their change! He will be wearing it 23 hours out of the day and having it off only one hour for me to wash his head and clean the helmet. Summer is not going to be his friend, I'm thinking .... Guess we will see! We are excited to see the helmet though, it is supposed to be firetrucks! :)
After our visit was complete there, we decided to go to my OB clinic and see if, by chance, my OB Dr. was in her office. I had kept in touch with her some during the course of our stay in FW, but had not contacted her much since we returned home. Life just kinda got very busy ... It is safe to say that I absolutely adore my OB doc ... she is/was amazing to me in my desperate time of need. Frankly, she was amazing to me the entire time that I was in her care. I was sick quite a bit with Kadin, and she did everything she could to make sure that I was comfortable, healed, and progressing like I needed to be. Honestly, I could go on and on and on for days about her and what she means to me and my family. She saved not only my life, but the life of our child when she shipped us to FW on October 28, 2008. I remember vividly her sitting on the edge of my bed in labor and delivery, teary-eyed at what was unfolding before her eyes, and believing for the best for me, our baby, and our family. Anyway ... we made it to her office and asked the receptionist if she was in and if she had a minute to visit. I wish I had a camera the minute that we walked around the corner. Her eyes lit up, her draw hit the floor, she was very surprised, but quickly took Kadin from Danny's arms and marveled at God's miracle!!! The few minutes that we spent catching up on what we went thru will forever remain precious to us ... you just don't find Dr.'s like her any more. Even all of her staff remember us and shared in the joy of having such a precious baby boy. She still has Kadin's picture up on her baby board, the pic of him when he was just about 7 days old. It is hard to look at now sometimes. It is amazing how your body adapts to such trying circumstances just so you can make it thru them! That's truly what happened in our situation. I could never see Kadin as the frail, threatened, very critically ill baby that he was ..... I'm not really quite sure why I didn't, but I didn't see it until much later, when the odds had turned in his favor. So anyway, we were glad that we stopped by the OB's office and had that mini-reunion with her and her staff. She is such a blessing, and anyone that works for her is blessed.
I got a call the other day that I am a little concerned about but only maybe because I don't quite understand it all, but our Pediatrician said that he was going to refer us to a neurologist in FW to have Kadin checked out thoroughly. He said that his CT scan did not come back completely "normal" and that it indicated that he had some enlarged ventricles, which could be perfectly "normal" in a micro-preemie such as Kadin, or it could be a cause for concern. Either way, we are not able to get in to the Dr. in FW until around December probably. I have done a little research trying to understand what can happen with enlarged ventricles, and I just get frustrated. I know I shouldn't do that if the Dr. is saying that right now there is really no reason for concern, just something that need to monitor for now, but it is still one of those things where I would like to know what is going on and I just don't. All I heard him say was "shunt" waa waa waa waa and a few other words that I can't even bring myself to type and I refuse to accept. Kadin's progress and development is amazing, and it's all because of GOD, and I know he is going to be just fine ... I will still do the smart thing and have him checked out but I will not get down about any of it, especially because of how we see him interact and behave with us. There is nothing abnormal about the way that he interacts with us or behaves. He is truly a miracle and I will not give a foothold to anything that will tear that apart!!! Don't get me wrong, I adore our Pediatrician, and I respect his professionalism and his expertise, and that is why I will go along with his referral to FW to have things monitored. I just won't accept that this is anything except routine for what micro-preemies go thru ... especially because Kadin had six brain scans while he was still in the NICU and they all came back NEGATIVE for brain bleeds, which we understood was also to be a miracle in itself !!! YAY GOD !!!
He had his 9 month check up today and it was fantastic! He is now weighing 14 pounds 8 ounces, he is 25.5 inches long and is doing very well!!!!! We are also looking at scheduling an appt with his pediatric surgeon to have the one last surgery that he needs to be finished with all that. We also scheduled is one year check up while we were there and it is so hard to believe that in just 3 short months, Kadin will be one year old. We will celebrate November 3 ... February 23 ... and February 28th! You think I'm kidding ... I'm not, but at the friendly advice of my OB Doc, no, we will not make a brat out of the miracle baby !!!! ha ha ha ha
Thanks for sharing in our latest journey with Kadin. I know I have probably left out a bunch in this update, but it is late and I'm tired ... if I remember anything else I will add it. Going to bed now, long day tomorrow also. We will be retrieving our car from my husband's "job" since it's been sitting there for almost a month now !!!
G'night...
Leslie
After our visit was complete there, we decided to go to my OB clinic and see if, by chance, my OB Dr. was in her office. I had kept in touch with her some during the course of our stay in FW, but had not contacted her much since we returned home. Life just kinda got very busy ... It is safe to say that I absolutely adore my OB doc ... she is/was amazing to me in my desperate time of need. Frankly, she was amazing to me the entire time that I was in her care. I was sick quite a bit with Kadin, and she did everything she could to make sure that I was comfortable, healed, and progressing like I needed to be. Honestly, I could go on and on and on for days about her and what she means to me and my family. She saved not only my life, but the life of our child when she shipped us to FW on October 28, 2008. I remember vividly her sitting on the edge of my bed in labor and delivery, teary-eyed at what was unfolding before her eyes, and believing for the best for me, our baby, and our family. Anyway ... we made it to her office and asked the receptionist if she was in and if she had a minute to visit. I wish I had a camera the minute that we walked around the corner. Her eyes lit up, her draw hit the floor, she was very surprised, but quickly took Kadin from Danny's arms and marveled at God's miracle!!! The few minutes that we spent catching up on what we went thru will forever remain precious to us ... you just don't find Dr.'s like her any more. Even all of her staff remember us and shared in the joy of having such a precious baby boy. She still has Kadin's picture up on her baby board, the pic of him when he was just about 7 days old. It is hard to look at now sometimes. It is amazing how your body adapts to such trying circumstances just so you can make it thru them! That's truly what happened in our situation. I could never see Kadin as the frail, threatened, very critically ill baby that he was ..... I'm not really quite sure why I didn't, but I didn't see it until much later, when the odds had turned in his favor. So anyway, we were glad that we stopped by the OB's office and had that mini-reunion with her and her staff. She is such a blessing, and anyone that works for her is blessed.
I got a call the other day that I am a little concerned about but only maybe because I don't quite understand it all, but our Pediatrician said that he was going to refer us to a neurologist in FW to have Kadin checked out thoroughly. He said that his CT scan did not come back completely "normal" and that it indicated that he had some enlarged ventricles, which could be perfectly "normal" in a micro-preemie such as Kadin, or it could be a cause for concern. Either way, we are not able to get in to the Dr. in FW until around December probably. I have done a little research trying to understand what can happen with enlarged ventricles, and I just get frustrated. I know I shouldn't do that if the Dr. is saying that right now there is really no reason for concern, just something that need to monitor for now, but it is still one of those things where I would like to know what is going on and I just don't. All I heard him say was "shunt" waa waa waa waa and a few other words that I can't even bring myself to type and I refuse to accept. Kadin's progress and development is amazing, and it's all because of GOD, and I know he is going to be just fine ... I will still do the smart thing and have him checked out but I will not get down about any of it, especially because of how we see him interact and behave with us. There is nothing abnormal about the way that he interacts with us or behaves. He is truly a miracle and I will not give a foothold to anything that will tear that apart!!! Don't get me wrong, I adore our Pediatrician, and I respect his professionalism and his expertise, and that is why I will go along with his referral to FW to have things monitored. I just won't accept that this is anything except routine for what micro-preemies go thru ... especially because Kadin had six brain scans while he was still in the NICU and they all came back NEGATIVE for brain bleeds, which we understood was also to be a miracle in itself !!! YAY GOD !!!
He had his 9 month check up today and it was fantastic! He is now weighing 14 pounds 8 ounces, he is 25.5 inches long and is doing very well!!!!! We are also looking at scheduling an appt with his pediatric surgeon to have the one last surgery that he needs to be finished with all that. We also scheduled is one year check up while we were there and it is so hard to believe that in just 3 short months, Kadin will be one year old. We will celebrate November 3 ... February 23 ... and February 28th! You think I'm kidding ... I'm not, but at the friendly advice of my OB Doc, no, we will not make a brat out of the miracle baby !!!! ha ha ha ha
Thanks for sharing in our latest journey with Kadin. I know I have probably left out a bunch in this update, but it is late and I'm tired ... if I remember anything else I will add it. Going to bed now, long day tomorrow also. We will be retrieving our car from my husband's "job" since it's been sitting there for almost a month now !!!
G'night...
Leslie
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