final update of 2011!

Carson did well today. They weaned his ventilator to a rate of 27. He took 37 mLs from a bottle that Liz fed him!!! Both sets of grandparents got to see Carson take a bottle. Tomorrow, the doctors will get lots of lab work so we will see how well he has done the last few days with the weaning of his ventilator. 

From the Bunch/Clark families, we wish you a wonderful New Year filled with many blessings!!

update for today with a few pictures

Carson had a good day. He took 35 mL from his bottle today. YEAH!!! He is really exceeding all of our expectations. He also weighs 7 lbs 12.5 oz. We are super proud of him.

Kellen is doing great too! We are including some pictures of both boys below...enjoy!!!

And have a wonderful last weekend in 2011!

Carson taking it all in

Carson again, having a tasty snack 

Kellen plotting his next adventure

lots of the bottle and less of the ventilator

I am amazed at Carson! He is such a little bundle of joy and miracles all wrapped up in one. He took 20 mL from his bottle on his first try. That is impressive! Way to go. :) They also weaned his vent down to 30 on his rate. This just means he gets assistance from the ventilator only 30 times a minute and then he does all the work on the rest of the breaths. He is 7 lbs 8 oz. They are going to start capping off his G-tube a few times a day to see how he does. He has been vented up until now, and we have to make sure he isn't going to throw up with it capped. If he does well, they will transition him to a button.

Kellen continues to do great! Liz and Preston still haven't been able to talk to the doctors about the final CTScan and MRI results, but nothing concerning. 

Thank you, thank you for all your prayers. Let's continue to pray he can wean off that ventilator and progress to being able to eat from a bottle exclusively!

Posted by Sarah

HUGE PRAISES!!!

Well it was another big day for our little Carson today...he had a swallow study done and there was...wait for it...NO ASPIRATION! Praise Jesus. He did have a little bit of reflux, so we can be praying for that, but this is truly exciting news. What it means is that he gets to start on one bottle a day now! Way to go Carson!!!

As for the test results, spectacular news there as well: The CAT scan of the lungs showed NO growths and only a few areas of "consolidation" as they call it, but apparently this isn't something they are worried about. And finally, though Liz hasn't gotten a chance to talk with the doctors regarding the details, she was told the MRI didn't show any growths either. She should have more info tomorrow, but in all, very, very good indeed.

So, Thank you Jesus, and thank you dear friends and family, as we join together in praying for our precious boys!

Posted by Ahdra

12/27/11
This is Liz...yes, I finally got on here. First of all, I just want to tell you all myself how much Preston and I appreciate the prayers and support. This journey has been made much easier knowing we have an EXTENSIVE prayer net that is always there to lift us up when we do start to get discouraged. We are so proud of our boys and the incredible fight in them. We could not thank God enough for putting these two bundles of joy in our lives. So for today's update...


Carson had a busy day. He had a MRI of his head/neck and abdomen and a CTScan of his lungs. One of the tumor markers, AFP, they were evaluating to make sure there was not any recurrence of the teratoma had been decreasing rapidly. However, the rate of decrease has slowed considerably so they want to get these studies to evaluate not only this but also how his structures are healing, the clot in the liver, and for any recurrence. The AFP may be slowing also due to his issues with his liver he has been having. ENT wants to get a scope of his neck too but this won't be this week probably. If everything looks good on the MRI/CTScan, they will continue with plans to wean his ventilator. At this time, his ventilator has settings of 24 PIP, 6 PEEP, and 18 PEEP plus. They will start weaning PEEP plus first. This is what he gets when he breathes on his own in addition to the PEEP. As we wean this, he will be doing more of the work on his own rather than relying on the machine. Later in the week, Liz and Preston will start talking with social workers about what type of assistance they might need if Carson goes home with a tracheostomy and G-tube. Even though they are discussing this, it doesn't mean he will have to have trach at home. Dr. Yang still believes there is chance he may not need it long term, if he is not aspirating and the structures are healing well. In addition, they are going to be able to do a swallow study later this week even though Carson is still on the ventilator. Lots of things to keep in our prayers, but it will be nice to have more information after all these studies are completed.

Carson is still gaining...up to 7 lbs 4 oz. Go little guy!!! We are really excited he has kept gaining weight and it still does not appear to be from fluid. They believe Tuesday or Wednesday they may start considering weaning his ventilator. Yay!!!

Kellen is about to get a bath and doing fantastic. We had a wonderful day after Christmas but his Papa and Mimi Clark and Poppy and Nana Bunch didn't want to leave to go back home. I don't want to either, but we are all thankful for all the fun we had together. In addition, Kellen got to meet his cousins Margo and Meredith for the first time and loved his cousin time.

We hope everyone's holidays have been just as wonderful!

Merry Christmas!!!

Carson is doing great on weight gain! He is up to 7 lbs 3 oz. YEAH!!!! He got some super neat toys from friends, family, and Santa. One of his favorite nurses got him a sound machine that projects pictures onto the ceiling. He is going to love that. Kellen had a wonderful time playing in his activity gym that his Uncle Mark and Aunt Amber gave him and Carson. It has been a blessed day and we are so thankful to spend it with family. I got the best Christmas present ever and got to hold Carson for the first time... words cannot describe how special it was. Thank you, Jesus!

Note from the moderator

Hello friends & family...just a quick note to let you know that I have (unexpected) very limited Internet connectivity this week as I am spending time with family over the holidays. So, do not be alarmed if you do not see current updates to the blog. I will update as often as I can. And if there are any urgent prayer needs, we will send out a special email, as usual.

Thank you for your understanding!

Ahdra

A little Christmas gift from us to you...

Merry Christmas to all our dear family and friends!

We hope you will experience the true joy of Christmas and the love of God, family, and friends. We love you all!

Carson has done very well. He lost just a little bit of weight yesterday but with his whooping weight gain recently, we are still very pleased. He is tolerating his blood thinner and doing quite well. The neonatologist and Dr. Yang, his surgeon, feel they may be able to start weaning his ventilator next week if he continues gaining weight.

Kellen is doing well and planning to make a sneak visit to see his brother for Christmas. It will be wonderful to have the Clark family together on their first Christmas.

God bless you as you celebrate this truly amazing Christmas!

Posted by Sarah

a wee update

A short and sweet update today...our little elf Carson is making sure Santa isn't the only jolly one this holiday...he is up to a hefty 6 lbs 13 oz!  And, in other good news...the GI doctors have consulted and said they don't want another liver scan for a month...which we are taking as very good news, indeed.  :)

So, merry Christmas Eve everybody!  And may God bless you abundantly for the blessing you are to us!!!

Posted by Ahdra

last update of the day

Thank you for all your prayers! We have been blessed abundantly with so many faith-filled friends, family, and loved ones to continue to pray with us.

Carson is doing well today. His weight is up to 6 lbs 9.6 oz. He continues to gain weight, so this is very positive. Preston spent the day with him and said physical therapy got him out of his bed and onto a blanket on the floor. He was very alert and worked well with the therapist. Also, we were really excited that he sucked on his pacifier very well and used it as a comfort when he was upset. This is pretty typical for babies, but because he has never been able to eat normally, we were all excited with the ability to suck and use it as a comfort. 

Gastroenterology consulted on his liver in addition to hematology. The were happy that the clot is in a branch of the portal vein after it splits, so the other side is providing very good blood flow to the liver. They will continue the lovenox and recheck labs and ultrasounds as we go. Hopefully, Carson will heal himself and the clot will eventually dissolve on its own. The medication is just to keep it from getting bigger.

The doctors are not going to do any weaning on his ventilator until after Christmas because of the recent developments. We will just continue to pray for healing.

Kellen, Preston, and Elizabeth are doing great!

Posted by Sarah

update on prayer request

Hematology consulted on Carson and they have placed him on Lovenox. The goal will be to not have anymore of his platelets stick to the clot. If it does not get any bigger then it probably will not occlude the vein. He certainly is strong little man. The Lovenox is two shots a day into his little leg, but Preston said he only cried for a little bit last night after the shot. He is so brave. 

Thanks for the prayers. More to come later after we have more information.

Posted by Sarah

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

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

update for today

We all know God has a sense of humor!!! :)  What a day. 

Preston's parents, sister, brother-in-law, and nieces all came to St. Louis this weekend for Kellen's discharge! Mom and I got away from Rogersville early to make sure to get to Cardinal Glennon to see Kellen's first view of the outside world! Little did we know, God and Kellen had other plans. Kellen is really attached to his brother and didn't want to leave. This morning at 8:30 am Kellen had an episode of bradycardia (dropped his heart rate). As a result, they called Liz and Preston about 10 or so and told them they were not going to let Kellen go home. This was literally a few minutes after Liz and Preston had finished cleaning their Ronald McDonald room and checked out. They had spent all morning cleaning and moving to our family friend's house. They are moving so that Kellen doesn't get exposed to the germs at the Ronald McDonald house. We all had a good laugh over how our plans always get changed by God. The good news was Margo and Meredith, Preston's nieces, were able to see Kellen through a window before they had to go home to Dexter. They were so excited to see Kellen for the first time when he was discharged, so they made the 3 hour trip (because anyone under 16 cannot come into the NICU unless he/she is a sibling). The nurse practitioner let us take Kellen to the door so they could still see him. 

We also discovered Kellen usually uses a slow flow nipple on the bottle, so they are going to work on switching him to a regular flow before discharging him. Typically, they do not discharge babies on the slow flow. They tried the regular flow (because he was going home) and he wasn't quite ready for it. They believe that may be why he dropped his heart rate. Anyway, plans changed and Kellen gets to hang out with his brother a little longer.

Carson is doing well. His blood gas was good this morning so they weaned down to 20 on his peak inspiratory pressure. We will see how he does. I have to say, seeing him today, he looks so much better than he did even 5 days ago. We are praying for continued weaning so we can get him off his ventilator. As an aside, being an aunt is the best. Aunt Amber did a fantastic job feeding Kellen this morning and I got to watch all the amazing faces Kellen made while he ate. As I am writing this update, I am in the NICU. Kellen was getting upset and I just got to rebundle him up and he is just so precious. Can't wait to show you Christmas pictures sometime soon!!!! 

Weights: Kellen is 6 lbs 2 oz. and Carson is 5 lbs 12 oz.

Posted by Sarah

update for today

Kellen has been preparing to go home this morning. The nurses are making sure Preston and Elizabeth are up on all their parenting skills and pass the test of being responsible adults that can care for a child. :)  Of course, we have no doubts they will pass with flying colors.

Carson is doing well. He is getting to wear clothes which makes us all excited although he may not care one way or the other. His blood gas was good again, so they weaned down his peak inspiratory pressure to 21. Also, he is now getting his feeds over one hour every three hours. All is going well today. 

I forgot to tell everyone, but Liz told me a precious story last night. A couple of days ago, they put the boys in the bed together. As they were lying side by side, they just snuggled right into each other. Carson fell fast asleep and Kellen was very content as well. Then, Kellen got hungry and started rooting around. What he found was Carson's nose and he began sucking on Carson's nose. I can just imagine how hilarious that looked. I hope Liz and Preston got pictures. ;)  

We are looking forward to Kellen getting out of the hospital tomorrow!

Have a wonderful weekend.

Posted by Sarah

update for today

KELLEN IS GOING HOME!!!! And he passed his car seat test. :) They told Liz and Preston they wanted to discharge Kellen tomorrow. Woohoo!! Except, Liz and Preston weren't prepared for that b/c they thought it would be the weekend or Monday. They are getting their things from Dexter and scurrying back up to get ready for the big day. They have a place to stay and just have to get all their things moved. They will be staying with a very kind family friend and we are all so grateful. They are going to keep Kellen until Saturday AM because it will give Liz and Preston a little more time.

Carson is doing better. He is no longer left-shifted which means he has a blood count that doesn't look like he is infected. His blood count isn't perfect, but better. The chest x-ray is still hazy but they are thinking it may stay that way until he gets bigger and grows some. His right lung looks more open on x-ray than it had. His blood gas was good so they are staying the same on the ventilator. His bilirubin is down to 3.8 from 4.2. Yeah!!! Although we love the tan look. :) They are probably going to stop his antibiotics and continue the nebulizer treatments for 14 days. They will go to a schedule of 14 days on and 14 days off on the nebulizer.
Good news for the Clarks and all their many friends and family. 

Thank you for your prayers!!!

Posted by Sarah

update for today

The boys are doing well today. Beth, Carson's nurse for the day, thought his lungs sounded a little better than they had in the past. Hopefully and because of all the prayer, his pneumonia is getting better. His blood gas was still good after the changes to his peak inspiratory pressure the last few days. They didn't do any changes to his ventilator today, but they will be checking gases and x-rays tomorrow and we will see how he is doing. On his feeds, I was mistaken earlier. He is actually getting a bolus feed every three hours, but they put it into his G-tube for 2 hours. So he really only has one hour of break, but still better than continuous feeds. His weight is about 5 lbs 12 ozs or so and Kellen is about 5 lbs 14 oz. The boys are getting close to breaking 6 lbs. :) Hip hip hooray! 

Kellen continues to do great, but we are still not sure when he will go home (Friday or next week). We will see! Liz and Preston are going home to Dexter for the first time in a really long time tomorrow. 

Blessings to all of you!

Posted by Sarah

update for today

Carson is doing well. He had his tracheostomy changed by Dr. Yang today and tolerated it well. He got to go down 1 on his PIP which is the peak inspiratory pressure today. He went down one yesterday so we are thankful and his blood gas this morning was good. They also started nebulizer treatments for his lungs to try to help. He is being changed to feedings every 2 hours rather than continuous. If he refluxs at all, he goes back to continuous feeds. But so far, he is doing great. They are trying to get him to more of a normal feeding schedule. 

Preston, Elizabeth, Carson, and Kellen took their Christmas pictures today. YEAH!!! We can't wait to see them and will post some pictures when we get them. Carson got to wear clothes for the first time today in his pictures. He wasn't very impressed with clothes because he slept the whole time, but he sure looked cute. He also is doing fantastic with range of motion with his neck. He has been able to turn his head all the way to the right which is a huge improvement from past weeks.

Kellen won't go home before Friday, but we believe it will be at least Monday before he goes home. He is doing well, but sometimes has drops in his heart rate. They don't like to send them home until it has been a week without drops in heart rate unless they go home on monitors.

Exciting news, someone donated St. Louis Blues tickets to the NICU. The charge nurse gets to pick out who gets them. They offered them to Elizabeth and Preston, because of how much everyone loves the two of them. Preston and Liz are off to the game right now. I am so happy they are getting away from the hospital to do something fun. 

Have a wonderful Tuesday night!

Posted by Sarah

update for today

Kellen is doing great! He survived his circumcision with no major problems. He did have some bleeding that wouldn't stop but now is doing great. Liz said he is sleeping with one eye open now to make sure no other bad things are going to happen to him. :) Still just eating, growing, and sleeping. They still think they will keep him until at least Friday if not a week from today. 

Carson still has a left shift on his complete blood count, indicating infection. They will continue his antibiotics for 10 days. His G-tube was leaking, but they have that problem fixed. He has done so well with feedings, he gets to have all his IV nutrition shut off today. He is finally just a breast milk baby! He did lose a little weight last night, so they are hoping his lungs will clear some from the loss of fluid. They will keep watching him and we will keep praying. :)

Thank you to all of you for keeping us in your prayers. We appreciate it!

Posted by Sarah

praying and fasting for Carson's healing

Hello all. This is Francie's friend JoAnn from Springfield. Francie wanted to first thank you all for your constant stream of prayers for her twin grandsons and for her whole family. The outcome would have been so different without each one of you!

She also wanted you all to have an update on Carson and is asking for continued prayers. About a week ago Carson's healing seemed to be at a stand still. At that time, in prayer, Francie felt that Carson's continued healing would be aided by prayer and fasting. So she began to fast. Not always from food but from other things too. She said that her most powerful fast was from negative words and reacting in negative ways. She was reminded of St. Terese's "little ways" and began to fast in "little ways with great love for Jesus" and as a prayer for Carson's healing; things like refraining from negativity, not grabbing that quick snack, giving that exta attention to someone when you're in a hurry, letting a car get out of the parking lot before you... Then, a couple of days ago, a friend of Francie's told her that, while in prayer, she felt that by prayer and fasting, Carson would begin to heal again (not knowing of Francie's nudge from God earlier). Wow, the Lord sure made His desires for prayer and fasting very clear!  Edited to add...Francie doesn't know this yet, but I (blog moderator and cousin Ahdra) felt recently that God was asking me to fast for Carson's healing as well.  

Now Francie just found out that Carson has had pneumonia all this time. It began with a staph infection. No wonder the little guy wasn't progressing! So a group of us thought we would join in the effort for prayer and fasting for little Carson and thought we would invite all of you wonderful prayer intercessors to join in if you feel led to do so. I know it's such a busy time of the year. But I also know that I personally am faced with many more opportunities during this time of year, to "fast" from overreacting to stressful situations!! While praying at the chapel yesterday Francie also thought that, in the spirit of Advent (preparing our hearts to receive the Lord more fully into our lives) we could also all add the prayer to simply be a better child of God as we all strive for continued conversion and healing in our personal lives.

Thank you for your continued prayers and for your love poured out in such beautiful ways.

Many blessings during this Advent season!
JoAnn

more prayers needed...Carson has pneumonia

Just wanted to add more specifics about Carson. We just spoke to his doctor and they have decided he has pneumonia. He has coag negative staph which is bascially staph we find on our skin and it has colonized his trach and lungs. He has a left shift on his blood count and haziness on his x-ray, so they are going to extend his antibiotics to at least 10 days. He has been on them for six days. Please be praying Carson can kick this infection and get on the path of weaning! On a funny note, as the neonatologist was talking to us about pneumonia, surgery came by and said, "He is doing great... no problems." It is comical how many people are working on his case and each perspective is very centered on certain things. Surgery is super excited his incisions are doing well but don't worry as much about pneumonia. It is interesting to watch them all work together! Be praying this infection will go away and our little guy can get on his way to going home!

Thank you and we are so blessed to have you in our lives!

Posted by Sarah

update for today

Kellen has decided he is staying with his brother, by golly : ) Really, Kellen is doing well, but they keep planning to discharge him and he just is letting them know he isn't having any of it. A couple days ago, they said he would go home on Monday or Tuesday. Then he decided to not eat as well and drop his heartrate. They then decided maybe Tuesday or Wednesday he could go home. Last night he purposely failed his car seat test. Just kidding, but he had to pass the car seat test and did not. They place him in the car seat for 30 minutes longer than it takes to get home which is 3 hours for Preston and Elizabeth. Premature babies neck muscles are not as strong and as a result, they lose their airway or at least it gets compressed. Kellen's oxygen levels dipped down several times, so it looks like he may not be going home next week : ). This kid is already too smart for his own good. We will see what happens. His weight is 5 lbs 9 ozs. AWESOME!!! He is about to outgrow premie clothes and diapers.

Okay, we need lots of prayers for Carson again. He is cruising along, but just not getting better. His lungs still look quite hazy on x-ray and they aren't exactly sure why he is not getting rid of the fluid on his lungs. They have restarted his lasix to try to get rid of some fluid. There still has not been any culture growth from his trach so they don't think he has an infection. However, he is still on antibiotics just in case. We just need to really pray for healing for his lungs and ability to get off this ventilator. We think part of the problem might be that he is laying down all the time. They are going to start trying to sit him up more, but we will see how he tolerates it. On a positive note, he is up to 13 mL/hour of breast milk and will have his lipid IV shut off tonight. That means he is just getting about 2.5 mL/hour of IV nutrition. His weight is up to 5 lbs 12 oz. He is doing great on peeing and pooping.

Preston and Elizabeth are doing great!!! AMAZING PARENTS!!!

Prayer requests:
Number one is healing for Carson's lungs so we can wean off his ventilator.
Number two is healing for his G-tube and skin around that surgical site.
Number three is healing for his throat and ability to swallow.
Number four is for all the amazing individuals that have been praying so faithfully for my precious nephews.

We love you!

Posted by Sarah

update for today

Well, Kellen is showing his stubbornness. He heard the doctors say he was going home next week and decided he didn't so much like the thought of leaving his brother. So he has decided to not eat as well. :)  We all are pretty impressed with his ability to manipulate at such a young age... ha ha!! Really, he is doing great but hasn't been feeding as well since yesterday.  However, he still doesn't need his tube put back.

Carson is chilling and doing well. He had occupational and physical therapy today. He did well. He is using his pacifier more and it appears that he does have fairly symmetric suck from both his right and left side of his mouth. His tongue deviates a little to the left, but it is encouraging that he can still suck with both sides of his mouth. He also is doing better with swallowing his saliva rather than drooling all the time. :)  We are just pleased he is doing so well.

Again, we are all overwhelmed with everyone's generosity and kindness. Thank you and God bless you!

Posted by Sarah

update for today

December here we come! :)  The update is pretty short today. Kellen has done so well with his weight gain and feedings, he gets his NG tube taken out of his nose...YIPEEE!!!! He is going to be a happy little boy. The doctors said he will definitely be going home next week! YEAH!!!

Carson is up to 11 mLs per hour on his feeds and his IV nutrition is down to 4 mL/hour. This is really good b/c we would like to get him off his IV nutrition and on just breastmilk. All in good time. From the standpoint of ventilation, the doctors are giving him a week vacation and he gets to coast. After a week, he better be ready to roll because everyone is going to want to get back on the weaning band wagon. :)  He appears to be doing well from the standpoint of infection and will just be finishing his antibiotics.

Next Tuesday will be the one month birthdays and Preston and Liz plan to take a Christmas photo. Can't wait to see it! ;)

We hope all of you are doing well and getting ready to celebrate a fun weekend!!!

update for today

Thank you for your faithful prayers and support. We are so thankful! Please keep up your prayers, because we know Jesus is hearing and answering each and every one.

Kellen is doing great. They are going to let him exclusively breast feed unless he is too tired to eat and then they will supplement. This really is amazing considering how closely they have kept up on how many mLs he is getting and how much weight he is gaining. I know Liz is really excited and it is another step in the right direction of getting to leave the hospital.

We still need to pray for Carson. He has been a lot slower to wean off the ventilator than they thought in the beginning. They believe some of the high pressures used in the beginning b/c of his swelling may have set him back and created some damage in Carson's lungs. In addition, he is getting more fluid in his lungs again and that makes it harder. They have had to go up on his ventilator settings today. He didn't have any sign of infection in his blood or urine, but some mild staph infection on his trach. They will continue his antibiotics and restart a diuretic to help him get rid of some more fluid. His G-tube insertion area has also not healed as much as they hoped. Dr. Yang believes Carson just might not have enough energy to heal all the various places on his body he has suffered trauma. As a result, the next few days, we are not going to make any ventilator changes and just let him rest. On a happier note, Liz and Preston are getting to hold Carson more and it just makes us all happy to see him looking so good. His color is so much better and he even is sucking on his pacifier. Both boys are so precious.

Liz and Preston are doing great. Recently, they were on a mission to get more premie clothing b/c Mr. Kellen likes to poop through all his diapers and managed to go through about 15 outfits in 2 days. Looks like Liz and Preston have lots of laundry in their future. :)

Please continue to pray for healing for Carson: no infections, healing for his lungs and ability to wean off the ventilator eventually, protection over him and patience for Liz and Preston as they wait for total healing for Carson.

twice the fun

Goodness...what a precious little boy.  Can you believe this little sweetie?!

We love you too, little one!

little fella

Blog Moderator, Ahdra, here and just had to comment on this picture Liz just sent of Carson.  Wow.  It looks like he already knows all the answers, right?

We sure love you little buddy!

update for today

Thank you to all of you for your prayers!!! YEAH, the ultrasound was negative for any masses or abnormalities on his liver. He has a gallstone, which they believe to be fairly normal and are just going to watch. Tomorrow he will get a CTScan of his lungs to make sure there aren't any potential areas of question for metastasis from his mass. They are not expecting any, but just to be thorough and make sure, they will get the study tomorrow.

Carson did have an elevated white blood cell count (indicating infection), so they got cultures from his tracheostomy, blood, and urine to see if they could find a source of infection. They started him on antibiotics prophylactically, and we will just wait to see what the results from his lab work are. Let's just pray he gets over this quickly and doesn't have any bad infections. His ventilator is the same.

Exciting news, it was okayed with surgery that he can have a pacifier so he gets to start having some practice sucking! It makes me feel better too because when he gets mad, we can at least try to soothe him with his pacifier. Starting a bad habit maybe, but oh well, he will grow out of it. :) He also got to wear his first stocking cap today!

Kellen is doing great. He gets to start breastfeeding twice a day instead of once. Liz and Preston are doing excellent. And both boys now weigh over 5 lbs!!!!!

Thank you to all your prayers and keep up the prayers for healing of Carson's neck and ability to swallow, for Carson to be able to get off the ventilator, and so Carson does not develop any serious infections. 

Have a wonderful Tuesday!

Posted by Sarah

update on special prayer request

Carson has had his ultrasound of his liver completed. However, we won't know any results until tomorrow. Thank you so much for your prayers and as soon as we know anything, we will email the information out. I will say, the doctors do not seem to be very concerned. The tech didn't really talk very much and wasn't sure when the doctors would review the results.

On a positive note, Carson got to go down on his ventilator rate to 30, which means he is doing more of the work himself. His bilirubin is also down to 4.8 instead of 10 where it was a week or so ago. His color is so much better than it was. He is doing great with his feeds and is up to 7 ml/ hour. He continues to pee and poop like a champ. :) They are hoping to start allowing him to suck on a pacifier soon, but need to get the okay from surgery that his surgical wounds are healed up. So, we will just keep praying for healing until we find out what the study showed.

Kellen is doing fantastic and is up to 45 mL per hour on his feeding! We are changing him to taking a bottle every other feed so he can get some rest in between bottle feeding. That way he can grow and get stronger faster to where he will be able to take a bottle with every feed. The doctors believe he will go home in the next 7 to 10 days.  Wow.

Prayers:
1) Continued healing for Carson's liver, ability to wean off the ventilator, protect his airway with swallowing, and be able to eat and swallow instead of having to use the G-tube.
2) Thanksgiving: his agitation level and ability to move his neck have been fantastic the last few days.
3) Direction for Liz and Preston with where to stay once Kellen is discharged from the hospital. The Ronald McDonald house has been wonderful but there are a lot of sick children there so it is not the best place to have a premature baby.

Thank you for all the prayers everyone!!!

Posted by Sarah

please pray

Carson's abdomen has been much more distended in the last few days. As a result, they took a chest x-ray this morning. The good news is that his bowel does not appear to be distended or have a lot of extra air in it. Unfortunately, it does show that his liver is quite a bit larger than it should be. They will be doing an ultrasound tomorrow looking for any abnormalities. There isn't any really good explanation for why it is so much bigger in the last few days. He is receiving nutrition via his veins and that is much harder on the liver, but it has been a pretty rapid increase in size. The doctors are somewhat concerned it may be issues with some of the malignant cells of his tumor spreading to his liver. This is the worse case scenario and hopefully not an issue, but we just were asking for prayers for wisdom for the doctors reading the ultrasound and healing of his liver. Hopefully, it is just from all the drugs and nutrition he is receiving and will go away on its own. The ultrasound is tomorrow around noon and then if necessary, they will schedule a CT Scan later but hopefully this won't be an issue.

On a positive note: Carson is up to 6 mL of breast milk every hour and pooping a lot better...go Carson! We all celebrated his first really good poop this morning. :) Because he is getting more food, his color has been a lot better too. He is also moving so much better in his neck than a week ago and we are so thankful for that. Also, your prayers have been appreciated so much for his comfort and God holding him while he was agitated as they took him off pain medication. He seems to be much calmer today and yesterday and we are hoping this is a trend it the right direction. :) He hasn't received any medications other than for his nutrition and to prevent reflux of his food since last Friday. Praise the Lord!

Kellen continues to do very well.

Posted by Sarah

update for today

Everything is about the same with the boys today. We took a break from the hospital to go to the state football game and it was AWESOME!!! Way to go Logan-Rogersville---state champs!!! We didn't get to dress up the boys in Wildcat garb, but someday we will. Although, Preston has made sure we understand they are going to be Bearcats.  :)

Kellen is cruising along and doing great. Carson had to go back up on his ventilator settings. He needed a little more help than we thought, but it may be all that turkey Liz ate, making him sleepy and wanting a day off. :) He is up to 5 mL of breastmilk every hour on his feeding so that is wonderful. He looks absolutely amazing and so much better than a week ago. We are so thankful.

Thank you so much for your prayers and we are just continuing to pray for healing for Carson's neck, ability to breathe on his own, swallow, and protect his airway. We hope you have a wonderful rest of your Thanksgiving weekend!

Posted by Sarah

reflections from Grandma Francie

As I sit here with Carson and Kellen...and everything is quiet, I wanted to share some of what I have felt these last couple of days.

Yesterday, on Thanksgiving, my cup truly runneth over with gratitude to God. When I first walked into the room, Dave and Sandy were there with their precious grandboys. Dave was watching over Carson and Sandy was holding Kellen. What a beautiful moment to have all four grandparents, Preston and Liz, and Carson and Kellen in one room.

Then, last night, the seven of us (Doug, Francie, Sarah, Elizabeth & Preston, Joshua, James) were in the room with Carson and Kellen. From my perspective, it was a PERFECT ending to an amazing Thanksgiving Day. There was so much love in this room that I could almost physically touch it.  Elizabeth was holding Carson's hands, calming him, because he had been more agitated due to the withdrawal process of coming off some of his meds. It melted my heart to see her talk so gently to her son. Then it was James' turn to hold Kellen. Joshua was standing close by, beaming from ear to ear. Oh my, words cannot describe that sight. I am smiling as I try to put it into words. I can only imagine the fun Uncle Joshua and Uncle James will have when they take Carson and Kellen for a weekend adventure. :)  

Then we got to witness Preston and Elizabeth give Kellen his first tub bath. Wow, did that bring back memories...especially when Kellen pooped in the bath water. Preston and Elizabeth were soooo calm throughout. THEN it was it was time for Carson's very first sponge bath from Preston and Elizabeth. And I watched in awe, thinking of where Carson had come in these last two weeks. There is nothing impossible with God!!!!

After Kellen's bath, it was Aunt Sarah's time to hold him...and more love flowed. :) Grandpa Doug even got to take his turn holding Carson's hands to soothe him. He is still a natural with children; especially his grandchildren. I just wish everyone could have seen the LOVE on each of their faces as they looked at these two precious lil' souls our Lord has blessed us with.

So, this evening, as I held Carson's hands and prayed over him and as I held Kellen for some time and prayed my chaplet of Divine Mercy, words REALLY cannot describe the feelings deep within.

I continue to pray blessings on ALL those who have prayed sooo faithfully for my grandsons and for Preston and Elizabeth. They have truly been the recipients of God's Divine Mercy, Love and Grace.

And I am a very grateful Grandma.  :)

More exciting news!

We hope all of you had a wonderful Thanksgiving yesterday. We have very good news today!

Preston and Liz got to give Kellen his first bath in water last night. Kellen certainly showed us he has really good lungs (screaming his indignation that no one saved him from the unpleasant experience) but did great. He was so precious and the Bunch part of his family got to be here to watch the experience. Then, Preston and Liz gave Carson a sponge bath and Carson did really well. Liz also did physical therapy for Carson before the bath and he did great. The prayers for loosening his muscles in his neck have been answered. Carson is getting his neck almost all the way over to the right which he was unable to do a few days ago!

This morning Carson's weight was about 4 lbs 6 or 7 oz and Kellen's was 4 lbs 10 oz. They both are doing well. Kellen continues to do well with his feeds and just needs a little more strength to get it all down from a bottle. Carson still gets agitated at times, but is doing much better from that standpoint. They have stopped his Fentanyl (pain med) and he only gets it if he has an episode where it appears from his vital signs that he is having pain. He has only gotten one dose since yesterday morning. He also continues to be weaned from his ventilator and is getting closer to the day when he won't need it any longer. They think in the next week or two, he will come off his ventilator. Carson is getting 4 mL of breast milk every hour and has tolerated that well. He is pooping a little more so we are really happy with that! They believe once he gets closer to full feeds all of his body systems will function better. Also, Preston was able to hold his firstborn son today for the first time. YEAH!!!

We are just so thankful for such positive news on Thanksgiving weekend. Thank you to all of you for your prayers and support. We pray for a blessed weekend for you. In addition, we might add... GO Logan-Rogersville at the state football championships tomorrow!  :)

Please continue to pray for healing for Carson in his ability to swallow, protect his airway, breathe on his own, and have protection from infection. They have noted more immature white blood cells and were a little concerned about infection. They drew blood cultures and we will be watching, but so far so good.

Posted by Sarah

Preston holding Carson for the first time!

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

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

update #3 for today

The procedure to change the tubes/circuits for ECMO machine is complete. There were a couple of close calls. His heart had an abnormal rhythm and before they were forced to shock it he got back into a normal rhythm on his own. The family had to wait in the hall because of the number of staff in the room.

The prayer requests remain the same:
1. Stop the clotting, so they can stop the heparin
2. Stop the bleeding, so that exploratory surgery can be prevented
3. Pee, pee and more pee to get fluids out of Carson
4. That Carson would improve enough to be able to take in Elizabeth's milk in order to improve the jaundice condition
5. Kellen to continue build strength and grow
6. God's wisdom and guidance for the hospital staff taking care the family
7. Strength and peace for Liz and Preston as they continue to do everything they can for their boys

Thanks for all your prayers!

Posted by Carolyn