Bouncy Chair

Hey Jackson got to sit in a vibrating bouncy chair today. He loved it! He continues to do very well. Here are some pics of Jackson in the bouncy chair.
Love
Kimberly and Adam

MRI update

Hey everyone. Jackson had an MRI of his head today. It appears on the MRI that there are two spots where he may have had a previous bleed. One is not inside his brain but in the layer right above it. We knew about this one from a previous head sonogram. The other spot is very small and is in the left frontal motor area. Because this is in the motor area it should not affect his cognitive abilities. The doctors say that this may cause him to need additional physical therapy though. The good news is it does not appear to be causing any problems right now. He is moving the right side of his body just as well as his left. Basically we just know it is there now, most likely there will be no long term effects from this. That's all of the news today. Because he had the MRI we did not do any pressure support trials today and will start again tomorrow. I am going to try to post a video of him being wide awake and squirmy today. If it works it is very dark, sorry. Like always please pray for all the CDH families.
Love
Adam and Kimberly

More good news

Hi things are still going really good. We learned yesterday that his kidneys are actually in better shape then we first thought. We met Dr. Roth the urology surgeon, and he said that about 70% of babies with the same type of obstruction that Jackson has don't ever require surgery. So for now it is a watch and wait kind of thing. The urologist says that typically as babies grow these obstructions go away. He will just keep having sonograms on his kidneys. Jackson is acting like he feels so much better the last couple of days. They have been able to decrease his ventilator settings some. We have even started ventilator pressure support trials again. He did 2 hours of just pressure support yesterday and did great, so today he did 4 hours. He did so good today, he kept his saturations anywhere from 97-100%!!!!!!!!!!!! They usually up the percent of oxygen the ventilator is giving him during these trials but he was actually on less today during the trial. We have learned that the yeast he has is an aggressive type of yeast so he will have to be on IV medication for that for 6 weeks. Other then that all good news today. Thanks for reading. Please continue to pray for all the CDH families out there.
Love
Adam and Kimberly

Test Results

Hi everyone. As you know Jackson had a lot of tests today. The echocardiogram (sonogram of heart), as well as the sonogram of the kidneys showed no yeast growth, yeah!!!!!! He also had a kidney function test today. This is where they put a dye in his blood, watch his kidneys absorb it, and then drain. The good news is both kidneys absorbed the dye, meaning they are both functioning. The bad news is that they both drained too slow. They said they expect a healthy kidney to drain in 5-15 minutes. His left kidney took about 18 minutes and his right took about 30. We knew his right kidney was most likely obstructed, and thought he might have a slight obstruction of his left. So basically these are the results we expected. He will have to have surgery done on his right kidney, and most likely his left as well. His oxygen saturations have been great today, and they were even able to decrease his ventilator settings a little. They have also upped his feeds to 14.5mls per hour, and were able to take him off his TPN and lipids (IV nutrition). This is very good news. Overall we had a great day. Hopefully we will start pressure support only trials again this week. Thanks for reading, and praying.
Love
Kimberly and Adam

Rollercoaster ride continues

They told us it would be a rollercoaster ride and Jackson is definitely taking us on one. As you know Jackson was doing very well but recently was becoming agitated and not maintaing his oxygen saturations quite as well. The good news is we think we have the reason. The bad news is Jackson has a yeast infection in his blood. The yeast infection is concerning because it can grow in his heart, kidneys, or brain. The doctors have checked the CSF (fluid around the brain) for yeast and it is currently negative. They will check his kidneys and heart tomorrow to see if there is any yeast growing. The good thing about yeast is that it is treatable. The bad news is yeast is hard to kill, the medication can have serious side effects, and he will have to be on the medication for probably 2 to 6 weeks. One other new development is that Jackson is now having PVC's (irregular heart rhythm). The doctors are unsure whether it is the yeast, medication, or something else causing the PVC's. One good thing is through all of this Jackson has been maintaining his oxygen saturation levels and has not had to require any additional ventilator support. The doctors say this is good for a baby with an infection like this. Jackson is still tolerating his feeds and is now up to 12.5 ml of breast milk per hour.

Please continue to pray for our family and all the other CDH families out there.
Love,

Adam+Kimberly

Quick update

Jackson is still doing okay, although his oxygen saturation levels have not been as good the past two days as they had been previously. For the past two days Jackson has been staying mostly around the low to high 80's, with his oxygen support being increased from 30% to between 40-50% depending on his agitation at the time. His morphine has been weaned a little bit so perhaps this is causing little man some of the agitation. For the time being they have held off on the pressure support trials. There is talk of changing out his ET tube with a bigger one but Dr. Adcock doesn't want to do this just yet. Although Jackson is still having some kidney problems the doctors believe that it is a functioning and will have further testing tomorrow on his kidneys. We'll update more tomorrow as we find out more and we have more pictures to add.

Baby Sofia

is here! Please pray for this CDH baby and her family in San Antonio.

Six Weeks Old; Easter and Ventilator trials

Hi everyone. Sunday was a big day for us. It was Jackson's six week birthday, Easter and he had his first pressure only vent trial. The ventilator trial went great. They had him on pressure support only for an hour and he did wonderful he pretty much slept through it, his oxygen saturation stayed 97%-99%. Everyone was very pleased. They did one again today and he did ok, not as good as yesterday but very well. He was on pressure only for two hours today. There were a couple times during that 2 hours that he got agitated and dropped his saturation a little but he would come right back up. He pretty much stayed between 85%-95%, and his gas that was done afterward was good. So we will do this again tomorrow, and so on and so on, until he can do it for 24 hours. We did get a little bad news today. Jackson was diagnosed with a dilated right kidney while he was still in utero. They have been monitoring this frequently and until today it was just little dilated. For some reason today's sonogram showed a very large dilation. The urology doctor said he will definitely need another surgery. We are unsure at this point what kind. It could be a simple obstruction, or it could be a nonfunctioning kidney. All his lab work related to kidney function is ok. There are a few test to be done to determine the amount of kidney function his right kidney has. Once those test are done I will be sure to update everyone. I know that is very broad, and really doesn't explain anything but that is all I know right now, I will let everyone know when I know more. One other piece of small news. We got moved out of our private room. We are out in the pod with all the other babies. Although we will miss our privacy this also means Jackson is doing good enough to be moved to a less critical bed space. Please continue to pray for us, I know those prayers have gotten us this far.

Please say a special prayer for Baby Drew, Jana (mom), Raymond (dad), and Elizabeth(sister) as they deal with their unimaginable loss. Please pray for everyone in this angel's life, and all other CDH families.

Quick update

Hello. Not much news today, we are back to no news is good news. They have stopped and restarted his feeds again. They stopped his feeds because he was refluxing. It looked much different then I expected. He was just laying there and then all of a sudden he spit up everywhere from his mouth and nose. They changed his feeding tube from one that went from his mouth to his stomach to one that goes from his nose to his small intestine. Now all of his food goes to him because he can not reflux from his small intestine. He is now getting 2 ml's of breast milk an hour via a milk drip. His oxygen saturation remains wonderful and his gases are amazing. They are talking about starting "trial offs" from his ventilator. Basically this is where they let the ventilator give him pressure support but not breaths. They start out just a couple hours a day and try longer and longer periods of time until he can tolerate it for 24 hours. I will update when we actually start these trial offs. He is adjusting to his phenobarbitol (seizure medication) and is awake and alert more and more every day. Well I guess that's all for now, please continue to pray for us, and all the CDH families out there.
Please say a special prayer for Baby Drew and his family, he really needs all the prayers he can get right now.
Love
Adam and Kimberly

Jackson continues to do well

Hello. There is really very little news today. Jackson continues to do good. Adam and I have both gotten to hold him again. I even got to hold him during one of his alert awake days. They changed his ventilator from a Dreager to a Servo. This really means very little to me. The new one is supposed to help teach him how to breath on his own and is easier to wean him off. Niether of these is the high frequency or oscillator. His last blood gas last night was the best blood gas we have had in a very long time. They have started feeding him again. He is at 5mls right now, we will see how he dose. That is really all for today. Please pray for baby Drew and his family, he has a had a rough week. Please continue to pray for us as well as all the other CDH babies and mommies.
Love
Kimberly and Adam

P.S. We would like to thank Project Linus for the beautiful blanket, it is the softest blanket ever. Jackson really likes it, I am posting a picture of him with his new blanky.

Jackson is doing good today.

Hi everyone, Jackson has a had a good couple of days. As I said last time they had been changing his ventilator settings. They went all the way up to 80% oxygen on the ventilator at one point and he still was not saturating his blood as well as they wanted. They finally decided it was the morphine and put that back on its original dose. He was not going through withdrawal, he was just not comfortable with the lower dose. Since they have put his morphine back where it was he has been doing good. They have been able to decrease the ventilator oxygen % from 80% back to 50% . He was doing so good Adam finally got to hold him on Saturday afternoon!!!!!!!!!! He was so awake and alert today it was wonderful. If you looked in his eyes it actually looked like he was having fun. He was squirming all around and just looking at me and Adam. We read him 2 books and he just looked at us. The only bad thing about a day like today is when I look at him he does not look sick and I just want to take him home. I know he is getting better and we will be able to take him home eventually. I am posting some pictures of Adam holding him, Aunt Catherine reading to him, and him being awake. Thanks for reading, and please continue to pray for Jackson, and all the other CDH babies and mommies out there.

Hello Everyone

Hi guys. Jackson remains stable. He continues to drop his oxygen saturation, mostly just when someone messes with him. Because he continues to do this Adam has still not held him. They think he is doing this because he was on steroids for a few days. The steroids are now getting out of his system, which is making it harder for him. They have increased his oxygen percentage on the ventilator from 30% to 50% and his breaths per minute from 30 to 40. He appears to be doing ok with these settings. They also say he might be withdrawing from the morphine, which they are starting to wean, which could be causing some problems. He was not tolerating the 15mls of food very well so he has been backed down to 10ml every 3 hours. He has also had his first bowel movement since surgery which is a very good thing. Because all of his intestines were manipulated there was a chance of having a bowel obstruction. Well I guess that's about all for now.

Jackson is 1 month old today!

Since coming off of ECMO on Saturday April 1st, Jackson has been stable. Jackson's blood gases and oxygen saturations continue to do well, though he did drop his saturations a little today for some unknown reason but seems to be bringing them back up. Since he started taking medication, Jackson has not had any more seizures after he had experienced some on Friday afternoon/evening the day before he came off of ECMO. The doctors seem to be adjusting his ventilator settings quite a bit in an effort to find the right balance. Jackson started taking feedings through a tube on Monday April 3rd. He started at 4.1 ml of breast milk on the first day and has done well enough that the doctors have gradually increased his feedings to the current amount of 15 ml per feeding every 3 hours. Both of Jackson's chest tubes have been removed as well as his umbilical catheters so now he has a real belly button! The best news is that Kimberly got to hold Jackson for the 1st time on Tuesday night for 3 hours! Jackson seemed to like being held by his mommy as he kept his oxygen saturation levels in the mid to high 90's! I still have not been allowed to hold my son as it is quite a production for the nurses to get all the tubes, wires, and vent lines moved so only mommy got to hold him Tuesday night. Today was supposed to be my turn to hold Jackson for the 1st time but because of his oxygen desaturations I will have to wait for a little while longer. Although Jackson is now off of ECMO and doing well he still has a ways to go. Please continue to pray for Jackson, all thoughts and prayers are greatly appreciated. Thanks for reading.

Love Adam and Kimberly

ps- Please continue to pray for Lauren (Avery's mom) and her family as they are going through a very difficult time in their lives.

Please pray for Avery

Hi everyone. I have a friend in Toronto whose name is Lauren and she had baby girl Avery on March 17th. Avery also has CDH. When reading an update on Avery this morning we learned she is not doing well. Please everyone pray for this sweet baby, and her wonderful family. I have a link on my page to Avery's page if anyone wants to read it. Please, I know everyone's prayers have helped us and I know Avery's family needs them now. Thanks everyone.
Love
Kimberly and Adam
P.S. Jackson is doing GREAT!

No more ECMO!!!!! Lots of pictures

Ok these pictures are not in order. Obviously from the first pictures you can tell he is off ECMO!!! You can see the side of his head that we have never seen before. He is doing so good! All of his numbers are staying wonderful, and he is doing great!! Adam and I were allowed to change his diaper for the first time by ourselves. The other pictures are from around the surgery date. He found his thumb and was actually able to suck on his thumb. The pictures of us kissing Jackson are also right after surgery. The last is him looking at and loving his Ernie doll, he stares at it so intently. Well I guess that's all for now. Please continue to pray for us, I know it is the prayers that have gotten us this far. We are doing great today and are very happy.
Love
Adam and Kimberly

Long post, Ups and Downs

Hi everyone, sorry not to post in so long. Well Jackson's surgery went great. He did lose quite a lot of blood, and was very critical after. The doctors said that due to the previous infection that caused his abdominal cavity to swell there were adhesions that made the surgery more difficult. The day before surgery the doctors told us that surgery would take 2 to 3 hours, Jackson's took almost 6 hours, the longest six hours of Adam and my life, but we were updated frequently. The surgeon, Dr Olutoye, said he had about 1/3 of a diaphragm, the rest is now a patch. He also said after removing all the adhesions his lungs opened up nicely and everyone was impressed with the amount of lung tissue he had. Typical of CDH babies he did great right after surgery. By the next morning however he was a little less stable. His oxygen saturations were not where they needed to be. Although he was stable he continued to drop his saturations from time to time, and sometimes his numbers would stay down. This continued through Wednesday and Thursday. On Friday morning while they were suctioning out his ventilator tube they got out a large amount of mucus that had apparently been blocking the tube, after that he was amazing, he was like a different baby. Both his oxygen saturations were 100%. The doctors were so pleased that a couple of hours after this they did a trial off the ecmo machine, he did wonderful and kept all of his numbers great. After the trial off we were told that he had done so well they expected to do another the next morning and he would come off the next afternoon. So Friday went great until about 5pm. Around 5pm Adam and I noticed a little twitching on his right side, his right arm, leg and eye muscle were twitching. At first the doctors and nurses were not that concerted, they said it was probably because his calcium levels were low so they gave him calcium. The twitching continued after the calcium and we asked to speak to the doctor, while we were talking to the doctor he saw the twitching, after he saw the twitching he agreed that it was concerning and ordered a head sonogram and an EEG. The head sonogram showed a normal brain, the EEG however showed seizure activity. They immediately started him on medication to stop the seizures. They said the seizures are not hurting him, the problem with seizures is that people will stop breathing but he is on a ventilator so he will breathe. The concern now is what is causing them. They said sometimes babies that have been on ecmo for a long time will develop seizures and they usually go away a week or so after being off. That's all we know about the seizures at this point. OK back to good news. He had no more seizures after the medication and he will stay on that for a while, and hopefully that will keep us seizure free. He had a wonderful night and all his numbers stayed great, they were actually so good they decreased his ventilator settings. They did the second trial off this morning, and he passed with flying colors. We are not waiting on the surgeons to come take the cannulas out of his neck. So by this afternoon we should be off ecmo!!!!! Well I know that was long post sorry, but a lot happened. We are headed to the hospital now. Thanks for reading, and all your thoughts and prayers.