update #2 for today

First, Meme (Grandma) Clark is holding Carson today! :) What a joy to get to hold something so precious and infinitely beautiful! We were so excited she got to be here today and hold Carson.

Essentially, after rounds today, everything is the same. Our number one priority is to get him to gain weight. His weight was up one ounce last night to 6 lbs 3 oz. That is the goal and so we are trying to help him have the least amount of work possible so he can gain some chub! Ventilation is the same. Once they figure out the situation with his liver, a possibility is to add olive oil to help fatten him up. :) I love it:eating olive oil! They are considering another diuretic that will help with the calcium in his urine and continuing lasix (his other diuretic). The neonatologist would rather have him on the dry side due to his lungs, but they are watching that closely. Other than that, Carson gets to eat, eat, eat, and rest and that is all he has to worry about.

Kellen is doing great. We hope you all have a wonderful weekend!

pictures!

Little man Carson

Little man Kellen

update #1 for today

Yesterday, Carson had an echocardiogram. GREAT NEWS...it was normal. :) His heart had some hypertrophy or thickening of the muscle in past echocardiograms, but now his heart is normal. YEAH!!! In addition, there were no signs of any pulmonary hypertension. We were very happy to hear this. 

He is still higher on his ventilator settings, but at this point, they just want him to grow more and we will work with the ventilator later. We are still waiting to hear more about developments with his liver and calcium in his urine. Nephrology is consulting for his kidneys and will be getting additional labs over the next few days/weeks to monitor his urine. They believe it is not a serious problem, but needs to be watched. We are just waiting on his liver to get the next ultrasound on Tuesday. They don't believe it is active clotting because his labs don't indicate that, but we are just going to watch and wait. 

Yesterday, after I got off work, I drove up to the hospital to see Carson. It just made my heart sing to see Liz holding Carson and he looked so amazing. His color is better and the swelling in his face is better. He just looked so handsome and content. I was very thankful. We will post pictures in a little bit. 

Last night, I was going to try to help Preston and Liz with Kellen's night time feedings. What can I say, they are so efficient and such great parents, they didn't even need my help. I certainly was impressed. :)

Posted by Sarah

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