We Moved

Hi everyone, there is really no news to speak of. We moved to D pod on Tuesday and met some of our new caretakers. We met the nurse practitioners which I am really excited about, we are also adding a cardiologist and a pulmonologist to the team we have not met them yet though. Dr Speer will be our attending this month, and Dr. Lawrence is the fellow. This is wonderful we love Dr Lawrence and he has even said that Jackson has been one of his favorite patients, ever. Some of the doctors think that Jackson needs a trach, but are unsure when to do it because feeding will be a bigger issue if he gets it, this is because he would need a tube directly into his stomach (G-tube). Babies with a trach can not be fed through their mouths and the tube he has now goes from his nose into his small intestine. This is not good for long term, and if he gets a trach he will probably have it for about a year. This tube would have to go directly into his stomach, but they are concerned about reflux so he would also need a surgery to fix that (fundoplication). Because of all of this they are a little more hesitant to do a trach, which makes us happy. I think the plan is to see what we can accomplish in the next 4 weeks. We are basically waiting for his lungs to grow and get strong. So we are not expecting any significant vent changes for about 4 weeks. We will however continue to wean his medications. He is almost totally off of morphine. Once the morphine his gone we will work on his ativan. Ok so for not much news that was a really long post.
We received a comment from a couple in Turkey, they are expecting a little boy with a left CDH in July. Their names are Aytekin and Emel and their baby will be Mert. Please add this family to your prayer list.
Sofia and Audrey are both doing great. This just reinforces the wimpy white boy theory. Go Girls.
Will post pics next time.

Love
Adam and Kimberly

Update

Sorry for not updating in a while. On Thursday May 18th the doctors weaned Jackson down to 53% oxygen, however the next day Jackson appeared to be having some problems keeping his saturations at sufficient levels, as he was only saturating 88-92 on 53% oxygen, so the doctors increased his oxygen all the way up to 100% and slowly weaned it back down to 55% later that same day. X-rays showed that Jackson had some fluid build up in the lower lobe of his right lung. The treatment for this is CPT, which they did for 2 days. Jackson has been on 55% oxygen since but is always satting 98-100. Jackson's follow up echocardiogram on Monday 5/22 showed continued improvement, while his BNP level was all the way down to 180, which is very good. Jackson has another echocardiogram scheduled for Friday 5/26 and if it has improved yet again then the doctors are planning to wean his oxygen from 55% to 54%. That's not a typo, just 1%. The plan right now is for Jackson to be moved on either Monday or Tuesday of next week over to D pod, which is the area for chronic patients. Over the next month, if the doctors aren't able to wean Jackson down sufficiently from his current vent settings then he will be given a tracheostomy. D pod is for ventilator dependent babies and specializes in weaning them off the vent. Kimberly and I still think Jackson can be weaned off the vent without having to get a tracheostomy. Jackson only has 7 days left of his yeast medication (Amphotericin B), yeah!!!!. He has been on the medication for 5 weeks now and infectious disease doctors recommended that 6 weeks would be enough. Follow up renal sonograms have shown basically no changes, which is good, and the urology doctors continue to follow Jackson's progress. We are posting pictures of Jackson in outfits from both grandmas. The blue stripe outfit is from grandma Cheryl and the gray baseball outfit is from grandma she-she. We also included a picture of him playing with his rattle.

Love,
Adam and Kimberly

Steps in the right direction

Hello everyone. Jackson is making strides in the right direction. The doctor did another BNP (blood work that tells how hard the heart is working) it is now down to 350!!! They also did another echocardiogram. They did not take the same measurements they took last time. The last echo rated his pulmonary hypertension as high end of mild, the most recent one was rated as trivial. All the tests are saying Jackson is getting over the pulmonary hypertenstion. They are now trying to wean is oxygen back down. The highest it got was 58%. Yesterday they weaned him to 57 then today down to 55%. Although these are small steps they are in the right direction and we have to go slow to prevent him from developing pulmonary hypertension again. One of our favorite nurses, Alyson, bought him some outfits and they are letting him wear normal clothes now. She also bought him a beautiful blanket, he loves them. Adam bought him a mirror that makes sounds and has lights, he loves it so much, he likes to look at himself. The goal now is no more set backs, wean the oxygen, and start pressure support trials again. This will probably take a couple of weeks, at least. I have recently gotten to hold him with his tummy on my chest, it is the best! Well I guess that's about all for now. Thanks for reading and please continue to pray for us and all the other CDH babies and families.

Sofia is doing great!!! She is extubated and moved down to a special care nursery.
Audrey is holding her own and fighting hard.

Happy Mother's Day!

Jackson has been doing very well on the increased support from his vent, which has allowed his heart and lungs to be given a rest. Jackson has been on 55% oxygen since Wednesday afternoon until Dr. Adcock decided to bump him up just a bit more on oxygen to 58% on Saturday. On Wednesday when the doctors drew Jackson's blood to check his BNP level (something that gives an indication about how hard the heart is having to pump; the lower the better) it was 2995, which is very high. On Friday when the doctors checked his BNP level it was much lower, having come all the way down to 754. The doctors want Jackson to keep his oxygen saturation levels above 95% for the time being and Jackson has been doing just that. The only time he has seemed to drop below 95% is when he is being messed with or squirming too much for the pulse ox to pick up a proper reading. Jackson's heart rate has been much lower over the past several days as well, as it has been staying in the 90's to 110's while sleeping and in the 120's to 140's while awake. Just a few days ago his heart rate would be in the 140's when asleep and in the 160's to 180's while awake, so this has improved a lot as his heart is pumping more effectively. Jackson is scheduled for another echocardiogram tomorrow so they can see how much pressure his heart is having to exert. Last Wednesday the number they got from the echo was 4.7, which is high, so hopefully this number will be much improved on Monday. Physical therapists continue to work with Jackson on his head mobility and it seems to be helping. Jackson has been moving his head to the right a little bit on his own, which is big news since he doesn't like to go to the right because he had to have his head to the far left for the first 4 weeks of his life while on ECMO. He has even been tolerating laying on the right side more than he has in the past. Thank-you for your continued prayers for Jackson.

Love,
Adam & Kimberly

New et tube

Tuesday morning Jackson kept desaturating and wasn't able to keep his oxygen stats up to acceptable levels with his 3.5 et tube despite being on 75% oxygen, so the doctors finally decided to reintubate Jackson with a larger tube, this time with a 4.0 et tube. The reintubation went smoothly the doctors said. While the bigger et tube has helped some, he still is on higher oxygen levels and pressure settings than he was just a few days before on a smaller tube. Today, Jackson has been keeping his oxygen levels around 92-98 on 50-55% oxygen from the vent. The doctors had an echocardiogram (heart sonogram) done today on Jackson because they think his pulmonary hypertension has increased and the preliminary readings seem to indicate just as they thought, so they are planning on keeping his vent oxygen settings up around 50- 55% and letting him really rest for a few days or more in the hopes that this will help reverse the increase in his pulmonary hypertension. Jackson will not have any pressure support trials in the mean time until he shows that his pulmonary hypertension has decreased. Although this isn't great news at least now we know why he has been requiring more and more support from the vent over the past several days and can begin to treat it accordingly. On Tuesday afternoon Kimberly and I helped bathe Jackson as the nurse said he was very stinky.

Hope you enjoy the pictures. Please continue to pray for Jackson as well as the other cdh babies and their families.

Love,
Adam & Kimberly

More rollercoaster riding

Hi everyone. We told Jackson we were done with the rollercoaster ride and only wanted straight and steady, he had other ideas. He has begun to require more support from his ventilator. On May 5th his oxygen saturation dropped into the 80's and he was not able to bring it back up, so they increased the amount of oxygen the vent was giving him from 32 to 35%. He did the same thing the next night and they had to go from 35 up to 40%. They stopped pressure support trials at this time, we never got above four hours though. The next night May 7th he had another seizure. It was only one, it lasted less then a minute and his oxygen saturation came back up quickly. Because of this they had to do a work up to see if he has an infection. So far the preliminary labs look negative for infection. We have to wait 48 hours for definite results, so he is on antibiotics in the meantime. Then this morning his oxygen saturation was staying in the upper 80's so they increased his ventilator settings again. They increased the amount of pressure he gets with each breath (PIP) and the amount of pressure left in his lungs at the end of each breath (PEEP) and kept the oxygen % the same. There is talk of getting him a bigger vent tube. Right now there is a large "air leak". Meaning air is escaping around the ventilator tube so the amount of pressure the ventilator is set to give him is not actually the amount he is getting. This has pros and cons so right now it is just being discussed. Well I guess that's all for now. Please continue to pray for us and all the other CDH families out there.

Love Adam and Kimberly

P.S. Baby Sofia is doing AMAZING!! Baby Audrey is holding her own and fighting like a CHAMP!

Pictures of our beautiful baby boy.

No news really today. Jackson has done four hour trials the past two days and has done very well. I think they are going to try a six hour trial tomorrow! We are getting there it is just baby steps at this point. They have been weaning his morphine and is he is now on a very minimal dose. They are also increasing his feeds and he now takes 24mls per hour per his pump. The food is still going directly into his small intestine so we don't know how bad his reflux will be. Well I guess that's it for now. Jennifer in Dallas is being induced with baby Audrey today so please pray for this family, starting their journey.
Love
Adam and Kimberly

Continued ventilator trials

Hi everyone. Jackson got up to four hours with his vent trials. After a four hour trial on Saturday that went great, he got really mad. About ten minutes after the ventilator was turned back to it's normal settings back he flipped out. He turned bright red made his "cry face" and dropped his sats. His sats stayed in the low 80's for about 3 hours, then he was in the upper 80's to low 90's for a while. He dropped again a few hours later and did the same thing down for a couple of hours then back up but still lower then we want. Sunday morning he went down again but just for a little bit, since Sunday afternoon he has pretty much been in the 90's. He did really good Sunday night through Monday. They did not do a vent trial on Monday because he had to get a Pic line placed and was sedated. They started him back on vent trials today. He did two hours today and did great!!!!!!!!!! Hopefully we will continue on the vent trials and we will be off this ventilator soon. I guess that's all for us today.

special prayer request for baby Gabriel. Gabriel is another CDH baby here at Texas Children's he was born in January. They have been unable to correct his pulmonary hypertension and has been waiting on a lung transplant. He is getting his lung transplant tonight at 8:30pm. Please keep this family, as well as the donor's family in your prayers.

Love
Kimberly and Adam