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!!!