update on special prayer request

Yesterday, the doctors worked with Carson's ventilator on the settings to try to help him breathe easier and get better ventilation. At the end of the day, his blood gases were better. After getting blood yesterday, they were able to turn down his oxygen on his ventilator quite a bit. So far, none of his cultures from his trach, urine, or blood have grown anything. This is certainly a positive thing as we do not want any infections on top of everything else. They have increased his feedings to try to help him gain some more weight. His weight was up to 6 lbs 2 oz, but we believe a lot of that is from the blood more than anything. We will all be cheering when he makes it over 6 lbs to stay. 

After reviewing the studies of his liver, they cannot determine exactly what it means... they do not believe it is a clot in a major artery to the liver so believe they can just watch it. Carson will have additional studies of his liver in a few days. They also are watching his kidneys because a couple of those labs came back abnormal. 

All in all, another day on the roller coaster that is the NICU, but we continue to be thankful for the joy Carson is giving us each day and the gift of his life. We continue to pray for healing and will wait patiently and take it one day at a time. 

Kellen, Preston, and Elizabeth continue to fabulous.

urgent prayer request for Carson

Hello family and friends.

Sarah just called with an urgent prayer request. They've had a bit of a challenging day in the NICU with a new nurse and some disappointing news. Carson has what they believe to be a clot in his liver. We are not sure if this has been there or is new but we are asking for prayers as this is investigated further for guidance for the doctors, for grace and peace for Elizabeth and Preston and for the nurses that care for precious little Carson every day - to guide their hands, their actions and their overall care of our baby boy!!

Posted by Alice (Francie's sister)

pictures!

Kellen waiting for his chariot to come pick him up as we left the hospital

Preston, Liz, Kellen and Carson, right before Kellen left the hospital

Kellen with lots of room to grow in his car seat

update for today

KELLEN IS HOME!!!

Or I should say, Kellen has broken free from the hospital and is now in St. Louis with Liz and Preston at a family friend's house. Preston and Liz are pros at parenting and all I can say is, WAY TO GO CLARKS!!! They rock and had everything under control last night. Aunt Sarah got to do the 11 pm feeding and I definitely felt like I was in HEAVEN!! So much fun! Liz and Preston are doing great today and taking turns at the hospital with Carson.

Carson has had a little bit of a bump in the road again. This morning his blood gas was not the best, his liver enzymes were up, and his WBC was a little low. In addition, he really hasn't gained any weight for about 10 days. All signs that his little body is working too hard. As a result, they went back up on his ventilator to 22 PIP so he doesn't have to work too hard to breathe. They are getting an ultrasound of his liver to make sure the gallstones are not causing more problems. They are getting blood cultures, trach culture and urine cultures to check for any other infections that might indicate why he isn't gaining weight. They did an ultrasound of his kidneys yesterday as a follow-up and it looked great for function of his kidneys, but he has some debris in his bladder. The urine cultures are to make sure the debris isn't really an infection.

On a positive note, his chest x-ray didn't look any worse and was probably a little better. His bilirubin is down again. The neonatologist and Dr. Yang do not think it is infection, but they have to make sure. They believe he is just working too hard and getting worn out. As much as we all want him off his ventilator so we can get more answers to his future, Dr. Yang and the neonatologist and all of us agree it is better for him to be able to grow and heal all the trauma to his body than come off the ventilator. So for right now, we need to get him growing and then we will worry about the ventilator later.

Just keep on praying for our strong, brave little boy. We all pray for the day when he can join his brother at home as two healthy little boys.

Posted by Sarah

pictures!

Kellen went home today!  Here is a picture of the little man:

And Carson had no notable changes today.  Here is a picture of the little fella:

Have a wonderful day!

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