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

update for today

I just received the update for the day from Liz and it sounds like your prayers are really being answered.

Carson is doing well since the ECMO machine was removed. His blood gases look good. His ventilator is set at 65% with decreased pressure and decreased breaths per minute. Currently he is set at 38 breaths per minute and sometimes it registers 50-60 breaths per minute which means he is initiating some breaths on his own. He is also peeing well and Liz said she can actually see a visual improvement to his swelling. The doctors took the drain out of his face and plan to take the line out of his belly today. There is talk of giving him one milliliter of food just to get his digestive system to start working but they haven’t given Liz a timeline on that yet. She mentioned that his color does look slightly better but she does not have stats on his Jaundice condition.

An oncologist has been assigned to Carson’s case to go over the pathology report on the cervical teratoma. Liz said it is common to find some malignant parts in the teratoma and Carson’s did in fact have some. The prayer request on this is that they got all of it during the excision so that there is no reoccurrence.

Kellen continues to improve and weighed in today at 4lbs. 2oz. They would like to see him take more from the bottle. He has been taking 10-15 ml from the bottle at each feeding and they give him the rest via the feeding tube. Liz and Preston were able to give him his first bath yesterday! She said he wasn’t all too happy about it, but she knows he will get used to it.

I asked Liz how she was doing and she said fine. She said she has more energy each day and isn’t experiencing any pain at her incision site, so that is good.

So here are the prayer requests:

1. That both boys continue on the path of better health and growth.
2. That Carson continues to pee all his extra fluid away
3. That Carson’s ventilation and blood issues continue to improve as his body takes over the job that the machines have done for him.
4. That Carson can begin to take in Liz’s milk to get his digestive system working and get his jaundice under control
5. That the excision of the teratoma was complete and he will not have any reoccurrences.
6. That Kellen will become the hearty eater that his Grandpa Doug is and drink his bottles. : )
7. For God’s wisdom and guidance for the medical staff caring for Carson and Kellen
8. Continued strength and peace for Liz, Preston and the rest of the family.

Thank you, thank you, thank you for all your prayers. They continue to see God responding to them daily.

PS. As a side note Liz and Preston have the good fortune of benefiting from the Ronald McDonald house charity (RMHC) by having a place to sleep, eat and shower close to their boys. Thousands of families each year with similar situations benefit from RMHC. If you would like to do something small as a token appreciation for this charity start pulling your pop tabs off your soda cans and save them to donate to your local RMHC. It may not seem like much but the Upper Midwest RMHC raises approximately $30,000 each year to go toward their operating cost just from pop tabs, so pull your tabs for the Clark family and all the other families out there who are blessed to use the RMHC, thanks.

Posted by Carolyn

update #2 for today

Liz called me specifically and wanted to send an update out tonight thanking everyone for all their prayers. Carson has done AWESOME all day long. He continues to pee and hasn't had any problems with fluid build up. He is still doing great on his ventilator settings. The bleeding has also stopped except for on the dressing where they took out his cannulas for the ECMO machine. He has been such a great little man through this whole process. Kellen also had a great day and has not had any problems with stopping his caffeine. Liz and Mom just wanted me to say thank you to everyone who has been praying and hopefully in a couple days we can report that Carson is getting some food too. :)

Have a wonderful evening and we will have a lot to be thankful for next Thursday!

Posted by Sarah

update #1 for today

Many, many things have happened since yesterday and clearly the prayers for God's guidance of the doctors in their care of Carson continue to be answered in abundance...

Last night after the family had supper the doctors said that two clots were already forming in the tubes of the ECMO machine. As of yesterday morning Carson's lung X-rays were still white due to the vast amount of fluid in his lungs which meant he absolutely had to have the ECMO machine to survive but his evening scan around 8:30 showed great improvement, not perfect but certainly not as bad. So Dr. Yang discussed with Liz and Preston the idea of weaning him off ECMO machine rapidly and let his body take over with the blood issues. He underscored that this was not a conventional treatment method but after discussion Liz, Preston and Francie agreed nothing about Carson has been conventional (what 3 day old preemie baby, survives major surgery against all odds) so they decided to move forward with weaning Carson from ECMO around 10pm. This occurred in 3 steps and then finally completely off the machine. During all of this Dr. Yang, despite having other patients, remained by Carson's side from 7:30 last night until 2:30 in the morning and was back again 6:30 this morning. They closely monitored Carson's progress through each of the steps and he did well, his blood gas stats were good and they had even backed him off the ventilator.

This morning at 7:30 they removed the cannulas, which means no returning to the ECMO machine. Carson is on 100% ventilation just due to all this trauma to his body. Dr. Yang feels that his body should take over now on all his blood issues. So the biggest prayer request is that Carson continues to pee, pee and more pee. We need that isolet covered in quarters. We also need to pray that he continues on the path of recovery in all areas. If he continues to improve Dr. Yang feels in a couple days he could have Liz's milk in order to improve his Jaundice condition (he is quite dark right now).

Again THANK YOU for all your prayers!

Posted by Carolyn