please pray for Carson's liver

Okay, prayer warriors! Time to put in some extra prayers and we know how amazing you all are at that! Carson's follow-up ultrasound of his liver yesterday showed a blood clot in his left portal vein (major vessel that takes about 75% of the blood to the liver but still technically in the venous system). They are certain at this point that it is a blood clot. They are consulting hematology as to the direction to take. At this time, they feel there is blood getting through and are not sure if the clot is getting bigger or not. So, we just need prayers for the clot to dissolve on its own and not have to go through a lot of extensive medical treatment like blood thinners or clot busters. But of course, we want whatever is best for Carson. Elizabeth and Preston are in the process of changing out his tracheostomy for the first time tonight. They have been such strong, faith-filled individuals through all these experiences.

Kellen is doing well. He continues to be an absolute joy! He makes the cutest faces I have ever seen. Uncle James and I, along with a dear friend, are watching him while Preston and Liz are at the hospital. We are having a blast. :)

Thank you so very much for your prayers and we will keep you updated as we know more. There will be repeated ultrasounds of his liver but I am not sure when the next one will be.

Posted by Sarah

our little fella

Yeah, many successes for the Clark family today! :)

Kellen's first outing went very well! He had his one week doctor's appointment today. Kellen did great, but the secretarial staff there left a little to be desired. We ended up getting out of the appt 3 hours later. Liz and Preston waited 45 minutes for the staff to make a follow-up appt. It was ridiculous but Kellen did fantastic. His weight is up to 7 lbs 3 oz. Way to go little guy! He is packing on the pounds! Other than that, everything was an A for Kellen today. 

Carson is doing great. Liz and Preston will hopefully change out his tracheostomy tomorrow for the first time. Carson's weight is up to 6 lbs 7 oz. He just needs to catch up with his brother. They did his liver ultrasound this morning, but we do not have the results yet. Hopefully, tomorrow we will have those results. However, his liver labs do not appear to be getting worse so the doctors feel it is less likely to be a clot. For the most part, they just want wait and watch. There is a possibility of trying to start weaning on his ventilator this weekend if he continues to gain weight. Prayers for lots of weight gain from chunk not fluid. :) We need those cheeks to fill out!!

Posted by Sarah

Kellen before weigh-in at his doc appt.

I am sitting with Kellen watching him sleep...I didn't realize someone could be so cute while sleeping! ;) Probably all the parents out there already knew, but gee wheez, this kid is cute all the time. Kellen and I are hanging out here while Daddy and Mommy go visit Carson and go to Liz's 6-week appt. Kellen is doing great. His 1-week appt. is tomorrow so we will get to see how much he weighs tomorrow. I think he has gained weight, because his cheeks just keep getting cuter all the time.

Liz had a fantastic 6-week appt and Dr. Vlastos told her she is doing wonderful. I must agree, she has recovered much better than I ever expected. She just needs to follow up in about 6-9 months to do a study on her internal incision to make sure it has healed completely. 

Carson had another uneventful day. He is still the same weight at 6 lbs 6 oz. The doctor's say we just need to get him to gain his Christmas weight like everyone else and we will be doing well. Preston has mentioned drizzling a little chocolate over his feeding and seeing if that will help. :) There won't be any changes that we know of to his ventilator until we can get him trending up on his weight gain. Tomorrow, we believe there will be an ultrasound of his liver to follow-up on the abnormality from last Wednesday. 

Other than that, a lovely day in rainy St. Louis! Doesn't look like it is going to be a White Christmas, but we are just so thankful to God for the gift of his Son, our savior, and our precious little Christmas miracles. Thank you, Jesus! Have fun counting down until Christmas.

I included two pictures, one is of Carson making an OOOO with his mouth...one of our favorite expressions both boys make! It is funny because they have similar expressions. The second is of Kellen...he was sitting after a feeding and just smiling away for at least 5 minutes. What a happy baby!

Posted by Sarah

Short update today...

Carson is doing well. He is up to 6 lbs 6 oz so...definitely progress. The physicians feel it is true weight and not just fluid. We are very happy. Also, he has been started on hydrochlorothiazide, a diuretic, in addition to his lasix. The HCTZ is supposed to help more with decreasing the calcium in his urine, and the lasix is better at keeping fluid off his lungs. 

Kellen is doing fantastic and continuing to eat, sleep, and grow! 

Thank you for all your prayers. We will see what this next week brings.

Posted by Sarah

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