GOING HOME!!!!!!!!!!!!!

Hi guys. We have an official discharge date. We are due to be discharged Monday afternoon. My mom came up and my dad is on his way to help us move. It is amazing what you can acquire in 5 months. We took CPR with grandma yesterday since she will be staying at home with us for a while. We are rooming in tomorrow, and should be discharged Monday. I will not be able to get to a computer for a while after this post. Jackson is doing so amazing. He coos and plays all the time. He is trying to roll over, and can almost hold up his head. He scoots around in his crib and can go almost in a full circle. We have all of our at home supplies for the trip and ready at home. A special thank you to Elizabeth for waiting at our house for delivery. Their are so many people to thank I will write that post when we get home. We truly appreciate everything everyone has done for us, and everyone's concern for us. We know and understand that many of you want to come visit us. We are asking that you please give us a week or so to adjust to being at home with Jackson, getting used to nap and feeding times etc. We also ask that you call before visiting to make sure we will be available, this kid has more doctor appointments then you can imagine. Our last request is that you only visit when you are healthy. Jackson is very fragile, especially his lungs. There is a virus that he especially susceptible to it is called RSV. Almost everyone has had it and will get it again. It presents itself as a common cold in non compromised infants. However in these compromised infants such as chronic lung problems, premies etc it can be fatal. Because of this we ask that you not visit if you or anyone in your house has had cold symptoms, or a fever in the past 48 hours. I know this may seem extreme but believe me it is necessary. RSV season is in the fall and winter, from about September to April. During these months Jackson will get a shot every month to help prevent RSV. Our pulmonologist said we should not take Jackson out of the house except for doctor appointments until RSV season is over. We are so excited to be going home, and know you all are excited for us. Thank you all so much for the many prayers, thoughts, everything else, and lastly for respecting these wishes.
We met an amazing family yesterday. They are just starting their journey with CDH. Their son Finn is 4 days old. We met them yesterday while they were waiting for the surgeons to finish putting him on ECMO. They had heard about Jackson and his case from the surgeons, and nurses. Everyone was so glad to meet. They even got to go into our room and meet Jackson, so they could see the amazing miracles that can happen. These are some of the nicest people I have ever met. This family really needs prayers right now. Their son has left sided CDH and possible a narrow aorta. His name is Finn Patrick please pray for him and his amazing family.

Love,
Kimberly and Adam

Getting close

Licking his bug


Hey everyone. There is really not much news. Jackson had an "episode" on Saturday morning where he dropped his saturations and his heart rate even dropped a little. His oxygen had come out of his nose and then he started crying and just didn't have the reserve to cry as hard as he did. Once he calmed down everything went back to normal in a short time. We are still planning on coming home soon. We are doing things that we have to do in order to go home. Adam and I do his feedings while we are there and bathe him. Adam learned how to put down and N-G tube (feeding tube) today. I did it on Saturday so we are both checked off on that. We are going to take infant CPR next week. He has to sit in his car seat everyday, we are trying to work up to 4 hours. He did a little over 2 hours today. Jackson still can not take food by mouth, the surgeons say they can not place the feeding tube directly into is stomach so we are going to keep the N-G tube. The doctors want to send us home by ambulance but insurance says they won't pay for it, so the doctor is going to write a special note on Monday. The doctors are going to check his airway on Monday just to make sure his episode on Saturday was not because his airway clamped down. He is getting really interactive. He makes sweet little noises, and loves to play with his toys. He loves to hit things. He also likes to lick everything. Please continue to pray for us, that Jackson continues to do good and can be discharged soon, and all other CDH families.
Love
Adam and Kimberly

P.S. The Disney shirt came from our friend Allyson (night nurse), she went to Disney World a couple of weeks ago and bought that outfit for Jackson.
















He was hitting this toy so much, Adam said it looked like he was playing tetherball.

Long time, no post

Everything is still going good for Jackson. We just haven't posted in a while because there has not been much news. Jackson is still breathing fast but keeping his oxygen saturations up while he is on 1/2 liter of oxygen via nasal cannula. Because of his fast respirations he is still not yet being fed by mouth due to the risk of aspiration. They have started talking about discharge plans, finding doctors and home health for Jackson back in Dallas. Although we don't yet have an exact discharge date they are saying that it should be within two weeks, give or take a few days. We are trying to find the best way for Jackson to go home because of the long trip and his oxygen requirements they may transport him home by ambulance. We will be taking infant CPR in the next week or so in preparation for coming home with Jackson. Jackson is no longer on ativan so the only meds he will go home on are lasix, viagra, and oxygen as well as sodium and potassium being added to his feeds.

Love,
Adam & Kimberly

Prayer requests

We just learned that Baby Mert passed away. Please pray for this family.

Happy baby boy

Hi. Jackson is still doing good. His respiratory rate is still pretty fast. We talked to the nurse practitioner today and she said we can not start to try to teach him to eat until his breathing slows down. They do not expect his breathing to slow down for a while. Because so much of his diaphragm is a patch he has to breathe fast. Everyone is very pleased with him and excited that he has been able to stay extubated. All of this means we are looking at a longer time in the hospital then we thought. Other then this he is doing very good. I think he is adjusting to being extubated. His heart rate was slower today then it has been in the past couple of days, and he was the happiest he has been since extubation today. There has been some discussion of moving to level 2 (the less sick NICU), but that is still talk. I guess that's all for now. I am posting a lot of pictures, because he smiled so much today. He loves it when we kiss him, he laughs. He also likes it when I blow raspberries on his tummy. I can not get over how sweet he is.
Love
Kimberly and Adam

P.S. Mert had surgery and is recovering well, please keep this family in your prayers.

Baby Mert

Hi. Baby Mert is here, thats all I know right now. There is a pic of him on their page, he is so handsome. Please pray for this family.
Thanks
Love
Adam and Kimberly

Still Extubated

Hey everyone. Jackson is still doing good. He keeps his oxygen saturations over 95% all the time. His work of breathing is so much better today. He is really doing good, everyone is so pleased. They are not going to start trying to feed by mouth until they know that being extubated is not going to be too hard on his heart. A BNP (heart function number) was done today and it was 65. This is really good, they want it under 100. So it appears that right now being extubated is not putting too much strain on his heart. His mobile broke recently and Adam and my dad were able to fix, it worked for like 2 days then broke again. We were so upset because he loves it so much. Any way we bought him a new one today and we went in to see him the old one was working again. He got to wear an outfit that my Aunt Pattie made him today. It is such a great outfit because it is totally velcro so it does not have to go over his head. It is the perfect NICU outfit. He had to get a haircut today. He moves his head from side to side to fall asleep, and this caused him to get knots in the back of his hair, so I am including pictures of his first haircut. Well I guess that's all for today. Thanks for reading. Baby Mert should be here today, please keep his family in your prayers.
Love
Adam and Kimberly














I think he has Gerber baby lips. :)

Just Pics

Hi everyone, I am officailly picture happy. He is still extubated and doing good. No news really today. He won't keep his fingers out of his mouth. He loves being held up on our shoulders.
Thanks for reading.
Love
Kimberly and Adam

EXTUBATION!!!!!!!!!!!

Hi everyone, I am guessing you know the next sentence from the title. Jackson is no longer intubated. The ET-CPAP was hard work for him but he was doing really well. It was making him have a lot of thick secretions and he was requiring a lot of suctioning, he was also drooling everywhere. Because of the drool and just normal wear his ET tube needed retaped. While the nurse and RT where trying to retape him, he started getting all foamy and coughing, and coughed out his tube. While this was not a scheduled extubation, they decided to go ahead and let him stay extubated. So far he is doing really good. He is breathing a little bit fast but that is to be expected. He is keeping his O2 saturations in the high 90's and is on 3/4 of a liter of oxygen via nasal cannula. His lips are so beautiful. He is making little sounds, his vocal cords are swollen so he is pretty hoarse. He will be full volume in no time I'm sure. Well I guess that's about all for now. He has to be watched very closely the first couple of days to make sure he can do this, so I will post frequently. Thank you all for all your thoughts and prayers.
Love
Adam and Kimberly














He was holding his own oxygen.

ET-CPAP

Jackson was switched over to ET-CPAP (endotracheal-continuous positive airway pressure) on Friday morning with a pressure of 7. At times Jackson struggled with it but for the most part he is handling it well as he kept his oxygen saturations in the mid to high 90's unless he needed suctioned. Today the doctors reduced the CPAP pressure to 6 and he is doing great still. The plan is to reduce the pressure to 5 on Sunday and then to extubate on Monday morning. Even though Jackson's primary nurse, Jackie, won't be there on Monday we should have another one of our favorite nurses as Melanie signed up on Friday afternoon to take Jackson on Monday and Tuesday. Please pray for the extubation to go well. Baby Mert is scheduled to be born on Tuesday. Also we have a special prayer request for baby Gavin here in the Texas Children's NICU. Gavin recently had surgery and is not doing well.

Love,
Adam & Kimberly

Progress continues

He was so excited to see Grandma and Grandpa.



Jackson continues to do very well. He started his 24 hour pressure support yesterday (July 4th)at 8am. The plan is to wean his ventilator just a little bit more before extubation. They want to wean his amount of pressure from 13 to 10, in the morning. The the next morning they want to wean his PEEP from 7 to 5, this might take a couple of weans hopefully done in the same day. All of these weans are obviously only going to be done if Jackson keeps tolerating them. So Friday we should be on the settings we want. Once he has tolerated these settings for 2-3 days they will try to extubate again. So we are thinking Monday or Tuesday for extubation. Although we are very excited about this we really wanted him to be extubated on a day Jackie, his primary nurse, was there. Jackson is the happiest baby I have ever seen. He smiles so big all the time, and laughs a ton. Even if you wake him up he just smiles at you. His central line should come out in the morning, and his phenobarbital (seizure med) will probably be discontinued. His ativan was weaned today. He amazes me everyday. He is such a strong happy little boy. Thanks for reading.
Love
Adam and Kimberly

P.S. Audrey is HOME!!!!!!!!!!!!!!!!

















We were allowed to let him taste lollipops, he loves them. I think he likes watermelon better then cherry.

Back in the saddle again

Hey everyone. Jackson is back to making huge amounts of progress. He appears to be recovering from surgery very well. His swelling is almost totally gone. Thursday they had to increase his ventilator support a little. He was retaining so much fluid he got a little bit of fluid build up around his left lung, this caused his blood gases to not be very good, so they increased his ventilator support. After a couple of days on the increased support they were able to start weaning down again, and we are now back to our low settings. They have also started pressure support trials again. They did 6 hours yesterday and 12 hours today. The plan is to go to full time pressure support trials tomorrow. After he is on that for a couple of days they will extubate, if he continues to do well. So possibly he will be extubated on Thursday or Friday. He is also back up to his normal amount for feedings. He is taking 76ml every 3 hours through his feeding tube. He is not throwing up, so I guess the fundo is working. They are talking about taking the central line out Wednesday. Everyone is seems optimistic that the extubation will work this time. I feel in my heart that he only failed because his hernia recurred, and he will do great this time. Please keep our family, as well as all the other CDH families in your thoughts and prayers.
Love
Adam and Kimberly

PS- Jackson wants to say happy birthday to his great granddaddy who turned 87 on July 3rd.
Love Jackson