Thanksgiving update

We have so much to be thankful for today! There are not enough words to describe our depth of thankfulness to God for the miracles and blessings He has given us in the last few weeks. We will be eternally grateful.

And thank you to each of you who have given all of us so much support, prayers, and love.  Can you believe all that you have been a part of in just 2.5 short weeks?  May God bless you and your loved ones more than you could ever imagine for being such an incredible blessing to our family during this time.

Carson is doing great! He is being taken off his pain medication and continues to wean off his ventilator. We are so proud of him. His feeds are being moved up to 2 mL per hour and he seems to be tolerating this well. Kellen is doing wonderful. The loving nurses at Cardinal Glennon decided to make Thanksgiving very special for us.  Below you can see a picture of our little Indian and Pilgrim.  :)

Many blessings to you and your family today and we hope it is an extra special day together!

Posted by Sarah

Could this be any cuter?  

Exciting news!

Liz got to hold Carson for the first time today!!!

Carson was a little upset when they were moving him but as soon as Liz got him he settled right down. Preston was holding Kellen at the same time so they got their first family picture taken. And what a precious little family photo it is!

Carson is holding his own. He is on continuous feeds through his G-tube of 1 mL per hour. He has pooped twice which is an excellent sign that his GI system is working. Possibly the first time I have ever praised God for poop (particularly those who know my hospital stories understand how truly unusual this is for me...ha ha)! Carson is down on his ventilator to a respiratory rate of 30 and very little oxygen. We just have to keep praying for him to get off his ventilator so we can move forward on determining his function with swallowing.

Kellen is doing very well. He had some exciting news today too. He lost his umbilical cord and now has the most precious belly button. Hip hip hooray! He may be the second born but he beat Carson this time : )!

We hope you all will be blessed greatly this Thanksgiving!  We want you to know we are thankful for each and every one of you and your prayers for Preston, Liz, Carson, and Kellen. 


Have a wonderful time with family and friends tomorrow!

Posted by Sarah

Clark Family of 4 please!

Happy, happy, HAPPY Thanksgiving everyone!

update for today

Carson is through his surgery. Praises to Jesus, he did great! He actually had been able to wean down on his vent before surgery, but now that he is sedated, he is back up on his ventilator settings. But that is expected, and hopefully, he will wean soon. The surgeons placed a G-tube (a direct tube into his stomach) so if he needs long-term feeding, there will be access. They took out his IJs (intravenous lines) and this will allow him to do more physical therapy with his neck. Unfortunately, there is no access to draw blood so the poor little guy will have to have lots of heelsticks. It breaks our hearts, but he is so brave. His abdomen was distended, but they are hoping when he starts eating, he will resolve that on his own. He continues to be off a lot of medication and no longer gets Lasix, dopamine, nitric oxide, versed, and only one dose of hydrocortisone for his blood pressure and perfusion. He has fentanyl for pain and TPN/lipids for nutrition until he gets to eating better.

Liz said two of the anesthesiologists came down to get him for surgery, who had also been with him in his first surgery to remove the mass. They both were so touched by Carson, they each asked for pictures. We thought that was really precious and another way God is using Carson in this world. Carson was also held for the first time today. One of the nurses held him while ENT doctors looked at his trachea. They have refitted it and hopefully, it will not have any leaks. Liz and Preston saw him being held and were so happy. He did very well and actually his heartrate came down. It was really sweet. Liz and Preston have also discovered he really likes to have his head rubbed. What a sweet angel straight from Jesus! Gosh, my heart is just overflowing with love.

Kellen is doing great. He is up to 40 mL on his feeds. He continues to do well on some feeds taking it from a bottle, but then other feeds loses his energy and needs some assistance. We are just thankful he is doing as well as he is. Again, he is on no medications and gaining weight like a champ. Kellen weighs 4 lbs 6 oz and Carson weighs 4 lbs 12 oz.

For those who want specific prayer requests:
1) God to heal Carson's throat and allow him to be able to swallow and protect his airway. We will not be able to test this until he is off his ventilator so we are praying for him to wean off his ventilator quickly at this point.

2) That Jesus will continue to hold Carson when he has to go through painful heel sticks for blood work and physical therapy to move his neck. For Jesus to hold him in his arms, until his loving family gets the chance to hold him.

3) Carson does have some blood in his urine, prayer for healing of his tissues

4) Continued praises for all the miracles and ways Carson and Kellen have touched so many lives

With love to all,

Sarah

update for today

Today was a good day! Thank you Jesus! First, Elizabeth had her 1 week follow-up with Dr. Vlastos and he was very pleased with how she was doing. So that is a huge praise that Elizabeth has been recovering as well as she has after so much trauma to her body. We are so thankful.

Kellen continues to grow stronger each day and we are so thankful for this. Elizabeth fed him his bottle last night and he GULPED it right down in about 10 minutes. That was very impressive as usually it is a struggle to get the whole bottle into his little tummy. We can see how he is growing stronger each day! He also got to breastfeed and was able to get about 10 mL which is fantastic.

Carson had quite a day. Sunday night, he pulled out his replogle (that is his tube that goes down to his stomach from his mouth). He certainly is stronger than he was in the beginning. As a result, ENT and Dr. Yang were consulted as to what to do. He still has a healing incision internally from a repair to his pharynx after surgery. They don't want to accidentally cause damage to this area when trying to put down another tube. As a result, the decision was to take Carson to surgery tomorrow about noon to place a G-tube. This is a direct port into his stomach from which they will feed him until we can determine if he has nerve function and ability to swallow while still protecting his airway from aspiration. The G-tube can stay for much longer than a tube placed through his nose. As a result, he will have surgery tomorrow. They will also take out his IJs which are IVs into his jugulars from when they took off his ECMO. They are just lines into his bloodstream that will be removed. The doctors may also refit his tracheostomy b/c he has lost so much weight (PRAISE the LORD) that it isn't fitting as well. On a positive note, he continues to wean off his fentanyl (pain medication), they are stopping his hydrocortisone (another medication for blood pressure) are weaning off Lasix (medication to help him pee off fluid. He has down so well with getting rid of fluid he doesn't need this anymore), and he is down to 4 lbs 9 oz. We are so proud of him. That is such wonderful news. We also is weaning off his nitric oxide (and should be off that in the next 1-2 days). His heart is still enlarged on Chest X-ray. They believe this will get better with time. They also began therapy for his little neck and body. They didn't work with his neck, but wanted to see how he would tolerate working with his body first. He did great.

Praises:

1) Carson has lost a lot of fluid and gets to stop Lasix soon : )
2) Carson is weaning off so many medications
3) They started physical therapy
4) Liz and Kellen are doing fantastic

Prayer requests:
1) Safety for Carson tomorrow in his surgery and direction for the physicians
2) For complete healing for his ability to swallow and protect his airway from aspirating fluid into his lungs so he will be able to eat and breathe normally in the future
3) Specific nurses to care for Carson and Kellen that are familiar with their case
4) That Carson is comforted by Jesus as he weans away from pain medications
5) Continued strength for Kellen and ability to continuing feeding well

Thank you everyone for praying so faithfully!!!

Posted by Sarah

update for today

Mr. Kellen took two full bottles last night so we are very proud of him! He continues to maintain his temperature very well and is in his bassinet next to his brother. He just needs to keep on learning to eat and gaining strength.

Mr. Carson is doing well. He has peed so well that they have removed his catheter which was monitoring his pee closely. We will continue praying he keeps peeing well but he has done well. He is weaning off his pain medication, so we are thankful to get rid of another medication. His weight is 5 lbs 0.8 ounces so he lost weight again! PRAISE the LORD. He has about 8-12 ounces of extra fluid at this point so he is working hard to get to his normal weight. His arms and legs look much better, but he still has some swelling in his abdomen.  He did get 3 mL of breast milk last night at midnight. He didn't digest any of it and they gave him 3 mL more at 6 am. Then at noon today, he still had all 6 mL in his belly so they threw it away and gave him a new 3 mL. They feel this is very normal. It will take time for his gut to begin working. Right now he is being feed 3 mL every 6 hours. Ventilation is about the same with his pressures at 26, respiratory rate at 42, and oxygen at 48%. He is moving a lot more and opening his eyes. It is so precious to see.

Liz is continuing to do wonderfully.

Prayer requests:

1) Carson is very stiff in his neck and really cannot move his neck to the right. We have only been able to get him to neutral. This is due to the fact the mass has pushed his neck back and to the left while in utero and his muscles and tendons have tightened on the left. We need to pray very hard for God to work his healing touch and allow those muscles and tendons to loosen.

2) Carson's fentanyl (pain medication) drip has been turned down quite a bit. He seems to be doing alright, but his having some signs of tremors and we just are praying he will not have bad withdrawals as they try to wean this medication. It is important to wean it so we won't have worse withdrawals and also so his gut will work better and he can move more to mobilize the fluid. It is a fine line between his comfort and helping him progress. We just pray for direction. 

3) Prayers for Carson's system to be able to digest Liz's breast milk and that this would begin to really help him in the healing process.  

4) Continued healing for all three: Liz, Carson, and Kellen

5) Prayers for blessings for all the individuals praying for us and giving such wonderful support!

Thank you everyone!

update #2 for today

Just a small update for those praying specifically...

Please continue to pray for the Gift of Pee for our little trooper Carson. They stopped his dopamine drip in the hope that he could begin to eat tonight at midnight for the first time. However, dopamine helps with circulation, especially to his kidneys. His urine output has unfortunately gone down as a result...so please pray his kidneys would really begin to ramp up and put out some good, steady pee, so that he would get a chance to eat.

Thank you so much for praying!  Has it really sunk in what you have been a part of through your prayers?!!

update #1 for today

Thank you to all of you for your prayers. Kellen continues to do amazingly well. The newest change for him is that he is weaning out of his isolette. That means he is doing well regulating his temperature and doesn't need the isolette to help him. So far, he has done well all day long and hopefully, will get to be in a normal basinett/crib soon. He also is on no medications other than a multivitamin. Basically, the only reason he is in the NICU is to help him figure out how to eat and gain weight. He continues to gain weight well and is 4 lbs 3 oz, but needs a little help getting all his food into his belly. But that is very well considering his gestational age and size.

Carson continues to beat the odds. He is doing well, but had a little setback with his ventilation and his lungs. This morning, his chest x-ray looked quite a bit more hazy than in the past. That means he has more fluid on his lungs. They believe it might be because he is mobilizing a lot of the edema/swelling that was in his soft tissue into his bloodstream and some of it is going into his lungs. As a result, he is up on his ventilator pressures to 28 rather than 24 where he was. This is more pressure than they would like, but feel they will be able to wean eventually. He also had a mild amount of pulmonary hypertension so he is getting nitric oxide for that to dilate those vessels in the lungs. They will check another chest x-ray next morning and continue his diuretics to try to help with this. Dr. Ali does not seem extremely concerned at this point. All of Carson's blood cultures looking for infection have come back negative and that is a HUGE praise!!! He is off antibiotics except for fluconazole prophylactically. He is weaning on his dopamine which helps his blood pressure and is at 3. Once he gets off that, he gets to start getting some food. Dr. Ali said after he gets to 2 then essentially you can wean at that point so he is very close. Hopefully, in the next day or 2 they will begin feeding small amounts. Carson also is going down on his pain medication and off the sedative so we get to see him move more : ). It is so much fun to see him move his eyes and mouth. He is amazing. They also are giving him some more blood because his hemoglobin is low and that might also be why he is having more trouble with ventilation. So overall, he is doing well, just a few things to get stabilized.  And for those interested, his weight is sitting at 5 lbs 2.4 oz.

They will also do a CTScan of his chest at some point in the future to make sure there are no signs of any metastasis from his teratoma in his lungs. The oncologists do not feel this is likely but want to make sure they check to be sure.

Prayers:
Carson needs to keep peeing off the extra fluid
For the fluid to leave his lungs, so he can ventilate better and go down on his ventilator pressures
For no signs of pulmonary hypertension on his next echocardiogram
For no signs of any metastasis on the CTScan
Continued healing for both boys and Liz
For Kellen to keep gaining more strength to be able to eat