The boys are having a lovely day in the NICU. Carson is down to 19 on his peak inspiratory pressure and 7 on his PEEP (peak end expiratory pressure). The nurse from yesterday told us he would trial at CPAP but she was mistaken. That wasn't a part of the plan, so for now, we wait. His blood gases are still every other day. He did get to sit in his bouncy sit for the first time today and has been moved to a crib, which is a good sign. They believe all the water weight is gone, so now it is time for him to start packing on the pounds. :) 

Kellen is doing great and enjoying another night at the NICU. We think he will go home soon, but aren't holding our breath. :) 

Have a wonderful day!

The boys are doing well! I guess the plan at this time is that Kellen may go home this week sometime. We are not holding our breath, because he seems to have a lot of tricks up his sleeve to stay at the hospital. :)  But on the positive side, Elizabeth and Preston are moved into a friend's house and ready to bring Kellen home whenever he is discharged. :)

Today, Carson is doing well. They went up on his feeds to 47 mL. He lost weight again. They think he is working so hard to heal all the things in his body as well as breathe that he isn't able to gain weight. Before we were praying for weight loss because of fluid, now we are praying for him to gain weight and grow! :)

It does look like they are going to trial CPAP tomorrow instead of the ventilator. It will be continuous positive airway pressure (CPAP) and Carson will do all the work of getting a full breath on his own. Be praying for him to have the strength to do well. We continue to be so grateful for the many answered prayers and miracles. Thank you all very much!

Posted by Sarah

update for today

We all know God has a sense of humor!!! :)  What a day. 

Preston's parents, sister, brother-in-law, and nieces all came to St. Louis this weekend for Kellen's discharge! Mom and I got away from Rogersville early to make sure to get to Cardinal Glennon to see Kellen's first view of the outside world! Little did we know, God and Kellen had other plans. Kellen is really attached to his brother and didn't want to leave. This morning at 8:30 am Kellen had an episode of bradycardia (dropped his heart rate). As a result, they called Liz and Preston about 10 or so and told them they were not going to let Kellen go home. This was literally a few minutes after Liz and Preston had finished cleaning their Ronald McDonald room and checked out. They had spent all morning cleaning and moving to our family friend's house. They are moving so that Kellen doesn't get exposed to the germs at the Ronald McDonald house. We all had a good laugh over how our plans always get changed by God. The good news was Margo and Meredith, Preston's nieces, were able to see Kellen through a window before they had to go home to Dexter. They were so excited to see Kellen for the first time when he was discharged, so they made the 3 hour trip (because anyone under 16 cannot come into the NICU unless he/she is a sibling). The nurse practitioner let us take Kellen to the door so they could still see him. 

We also discovered Kellen usually uses a slow flow nipple on the bottle, so they are going to work on switching him to a regular flow before discharging him. Typically, they do not discharge babies on the slow flow. They tried the regular flow (because he was going home) and he wasn't quite ready for it. They believe that may be why he dropped his heart rate. Anyway, plans changed and Kellen gets to hang out with his brother a little longer.

Carson is doing well. His blood gas was good this morning so they weaned down to 20 on his peak inspiratory pressure. We will see how he does. I have to say, seeing him today, he looks so much better than he did even 5 days ago. We are praying for continued weaning so we can get him off his ventilator. As an aside, being an aunt is the best. Aunt Amber did a fantastic job feeding Kellen this morning and I got to watch all the amazing faces Kellen made while he ate. As I am writing this update, I am in the NICU. Kellen was getting upset and I just got to rebundle him up and he is just so precious. Can't wait to show you Christmas pictures sometime soon!!!! 

Weights: Kellen is 6 lbs 2 oz. and Carson is 5 lbs 12 oz.

Posted by Sarah

update for today

Kellen has been preparing to go home this morning. The nurses are making sure Preston and Elizabeth are up on all their parenting skills and pass the test of being responsible adults that can care for a child. :)  Of course, we have no doubts they will pass with flying colors.

Carson is doing well. He is getting to wear clothes which makes us all excited although he may not care one way or the other. His blood gas was good again, so they weaned down his peak inspiratory pressure to 21. Also, he is now getting his feeds over one hour every three hours. All is going well today. 

I forgot to tell everyone, but Liz told me a precious story last night. A couple of days ago, they put the boys in the bed together. As they were lying side by side, they just snuggled right into each other. Carson fell fast asleep and Kellen was very content as well. Then, Kellen got hungry and started rooting around. What he found was Carson's nose and he began sucking on Carson's nose. I can just imagine how hilarious that looked. I hope Liz and Preston got pictures. ;)  

We are looking forward to Kellen getting out of the hospital tomorrow!

Have a wonderful weekend.

Posted by Sarah

update for today

KELLEN IS GOING HOME!!!! And he passed his car seat test. :) They told Liz and Preston they wanted to discharge Kellen tomorrow. Woohoo!! Except, Liz and Preston weren't prepared for that b/c they thought it would be the weekend or Monday. They are getting their things from Dexter and scurrying back up to get ready for the big day. They have a place to stay and just have to get all their things moved. They will be staying with a very kind family friend and we are all so grateful. They are going to keep Kellen until Saturday AM because it will give Liz and Preston a little more time.

Carson is doing better. He is no longer left-shifted which means he has a blood count that doesn't look like he is infected. His blood count isn't perfect, but better. The chest x-ray is still hazy but they are thinking it may stay that way until he gets bigger and grows some. His right lung looks more open on x-ray than it had. His blood gas was good so they are staying the same on the ventilator. His bilirubin is down to 3.8 from 4.2. Yeah!!! Although we love the tan look. :) They are probably going to stop his antibiotics and continue the nebulizer treatments for 14 days. They will go to a schedule of 14 days on and 14 days off on the nebulizer.
Good news for the Clarks and all their many friends and family. 

Thank you for your prayers!!!

Posted by Sarah

update for today

The boys are doing well today. Beth, Carson's nurse for the day, thought his lungs sounded a little better than they had in the past. Hopefully and because of all the prayer, his pneumonia is getting better. His blood gas was still good after the changes to his peak inspiratory pressure the last few days. They didn't do any changes to his ventilator today, but they will be checking gases and x-rays tomorrow and we will see how he is doing. On his feeds, I was mistaken earlier. He is actually getting a bolus feed every three hours, but they put it into his G-tube for 2 hours. So he really only has one hour of break, but still better than continuous feeds. His weight is about 5 lbs 12 ozs or so and Kellen is about 5 lbs 14 oz. The boys are getting close to breaking 6 lbs. :) Hip hip hooray! 

Kellen continues to do great, but we are still not sure when he will go home (Friday or next week). We will see! Liz and Preston are going home to Dexter for the first time in a really long time tomorrow. 

Blessings to all of you!

Posted by Sarah

update for today

Carson is doing well. He had his tracheostomy changed by Dr. Yang today and tolerated it well. He got to go down 1 on his PIP which is the peak inspiratory pressure today. He went down one yesterday so we are thankful and his blood gas this morning was good. They also started nebulizer treatments for his lungs to try to help. He is being changed to feedings every 2 hours rather than continuous. If he refluxs at all, he goes back to continuous feeds. But so far, he is doing great. They are trying to get him to more of a normal feeding schedule. 

Preston, Elizabeth, Carson, and Kellen took their Christmas pictures today. YEAH!!! We can't wait to see them and will post some pictures when we get them. Carson got to wear clothes for the first time today in his pictures. He wasn't very impressed with clothes because he slept the whole time, but he sure looked cute. He also is doing fantastic with range of motion with his neck. He has been able to turn his head all the way to the right which is a huge improvement from past weeks.

Kellen won't go home before Friday, but we believe it will be at least Monday before he goes home. He is doing well, but sometimes has drops in his heart rate. They don't like to send them home until it has been a week without drops in heart rate unless they go home on monitors.

Exciting news, someone donated St. Louis Blues tickets to the NICU. The charge nurse gets to pick out who gets them. They offered them to Elizabeth and Preston, because of how much everyone loves the two of them. Preston and Liz are off to the game right now. I am so happy they are getting away from the hospital to do something fun. 

Have a wonderful Tuesday night!

Posted by Sarah