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.
Wednesday, November 30, 2011
Tuesday, November 29, 2011
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
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
Monday, November 28, 2011
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.
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.
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.
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
Sunday, November 27, 2011
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
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
Saturday, November 26, 2011
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!
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
Friday, November 25, 2011
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!!!!
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. :)
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.
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
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| Preston holding Carson for the first time! |
Thursday, November 24, 2011
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!
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
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| Could this be any cuter? |
Wednesday, November 23, 2011
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
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
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| Clark Family of 4 please! |
Happy, happy, HAPPY Thanksgiving everyone!
Tuesday, November 22, 2011
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
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
Monday, November 21, 2011
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:
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
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
Sunday, November 20, 2011
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:
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!
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!
Saturday, November 19, 2011
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.
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
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
Friday, November 18, 2011
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
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
Thursday, November 17, 2011
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
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
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
Wednesday, November 16, 2011
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
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
update #2 for today
Okay I just got an update to share with everyone.
The bleeding and clotting are the biggest issues that Carson is facing. Because of the clotting they are using heparine to thin the blood but this of course causes more bleeding. Dr. Yang continues to balance the risks as best he can but we truly need Gods hands on Carson to stop the clotting so they can stop the heparine and stop the bleeding. They are going to change the tubing again on the ECMO machine within the hour. Please pray for this procedure as it is rather risky since Carson will not have use of the machine during the procedure. I asked how long it takes and she said seconds but Dr. Yang's response was I'll go as fast as I can and you pray. Dr. Yang has said that if the bleeding does not get under control they may have to do exploratory surgery to find the cause. No timeline has been given as to when he feels this would be necessary, so continued prayers for God's wisdom and guidance for the doctors and nurses is appreciated.
The praise is that Carson's kidneys are working better than before (per Dr. Yang) but we still need continued prayers more pee to reduce the fluid in his body.
Thank you again for all your prayers!
Posted by Carolyn
The bleeding and clotting are the biggest issues that Carson is facing. Because of the clotting they are using heparine to thin the blood but this of course causes more bleeding. Dr. Yang continues to balance the risks as best he can but we truly need Gods hands on Carson to stop the clotting so they can stop the heparine and stop the bleeding. They are going to change the tubing again on the ECMO machine within the hour. Please pray for this procedure as it is rather risky since Carson will not have use of the machine during the procedure. I asked how long it takes and she said seconds but Dr. Yang's response was I'll go as fast as I can and you pray. Dr. Yang has said that if the bleeding does not get under control they may have to do exploratory surgery to find the cause. No timeline has been given as to when he feels this would be necessary, so continued prayers for God's wisdom and guidance for the doctors and nurses is appreciated.
The praise is that Carson's kidneys are working better than before (per Dr. Yang) but we still need continued prayers more pee to reduce the fluid in his body.
Thank you again for all your prayers!
Posted by Carolyn
update #1 for today
I got to go visit last night and loved seeing Carson and Kellen.
For the good news first, Kellen is in clothes!!! :) Yeah...it was a blast getting to see him dwarfed in an itty bitty outfit but looking so handsome. He is taking the full feeding for his weight so no IVs or anything other than his tube to his tummy. Elizabeth and my mom have both been able to get him to eat his full feeding from the bottle (35 ml). That is wonderful. If he is awake he does great. I also got to hold him for the first time on his 1 week birthday yesterday. I tried to feed him a bottle but I didn't have the touch. He definitely decided his mommy was better at feeding. :) Kellen thinks both his parents are the best b/c he is happiest when they are holding him. He has the cutest facial expressions and just will sleep for hours in your arms.
Liz and Preston continue to be such strong people as they go through the ups and downs. They are amazing.
Your prayers are so wonderful and we so appreciate it. Carson's bleeding stopped last night and he continues to pee incredibly well. Unfortunately, to stop his bleeding they had to give him a medicine to help him clot which was good for him, but caused the machine to get more clots in it. One of the clots is on the arterial line after the oxygenator. It is very scary for all of us, because it seems awfully easy for that to transfer on to Carson and potentially cause devastating results. The neonatologist, pediatric surgeon, perfusionist, and others are trying to figure out the best way to address this. I want so badly for him to be off the ECMO machine, but they still feel his lungs are filled with fluid. Right now, we need to pray for wisdom for the doctors and for them to make the best decision for Carson and to be able to work together. Continued prayers for protection for his little body. On a happier note, he is moving more and is really using all his extremities and will really grab your hand if you touch him. It is such a sweet sight.
Prayer Points:
First, in thanksgiving for all the miracles and answered prayers thus far, for Liz and Kellen's amazing recovery, for Liz and Preston's ability to take it one day at a time
Requests:
For the good news first, Kellen is in clothes!!! :) Yeah...it was a blast getting to see him dwarfed in an itty bitty outfit but looking so handsome. He is taking the full feeding for his weight so no IVs or anything other than his tube to his tummy. Elizabeth and my mom have both been able to get him to eat his full feeding from the bottle (35 ml). That is wonderful. If he is awake he does great. I also got to hold him for the first time on his 1 week birthday yesterday. I tried to feed him a bottle but I didn't have the touch. He definitely decided his mommy was better at feeding. :) Kellen thinks both his parents are the best b/c he is happiest when they are holding him. He has the cutest facial expressions and just will sleep for hours in your arms.
Liz and Preston continue to be such strong people as they go through the ups and downs. They are amazing.
Your prayers are so wonderful and we so appreciate it. Carson's bleeding stopped last night and he continues to pee incredibly well. Unfortunately, to stop his bleeding they had to give him a medicine to help him clot which was good for him, but caused the machine to get more clots in it. One of the clots is on the arterial line after the oxygenator. It is very scary for all of us, because it seems awfully easy for that to transfer on to Carson and potentially cause devastating results. The neonatologist, pediatric surgeon, perfusionist, and others are trying to figure out the best way to address this. I want so badly for him to be off the ECMO machine, but they still feel his lungs are filled with fluid. Right now, we need to pray for wisdom for the doctors and for them to make the best decision for Carson and to be able to work together. Continued prayers for protection for his little body. On a happier note, he is moving more and is really using all his extremities and will really grab your hand if you touch him. It is such a sweet sight.
Prayer Points:
First, in thanksgiving for all the miracles and answered prayers thus far, for Liz and Kellen's amazing recovery, for Liz and Preston's ability to take it one day at a time
Requests:
1) For the doctors to be able to come together to make the best decision for Carson, wisdom for their decision making process
2) The clots will not move and God will hold his Hand over Carson protecting him from any of the scary side effects
3) Thanksgiving and continued prayer for Carson to pee pee pee so we can get fluid off his lungs and he can come off the ECMO machine.
Posted by Sarah
2) The clots will not move and God will hold his Hand over Carson protecting him from any of the scary side effects
3) Thanksgiving and continued prayer for Carson to pee pee pee so we can get fluid off his lungs and he can come off the ECMO machine.
Posted by Sarah
Tuesday, November 15, 2011
update #6 for today
Francie knew many would be waiting for an update given the urgent prayer request earlier this evening. Well, we certainly know that Carson is learning from his brother in how to be a tough little hombre. It is completely a miracle that Carson is still with us - as he has already surpassed the doctors expectations on multiple occasions - but we feel that God is truly continuing to bless all of us beyond measure by holding Carson's hand and pulling him through each challenge.
Francie just called saying that the bleeding from the cannula has slowed, not stopped. He has had to receive several blood products but the imminent danger has indeed lessened - not gone totally. He is still putting out a fair amount of urine so that is certainly good. He's just receiving so many different things that he continues to be challenged with the fluid overload issue.
We continue to pray so that God will help to heal his organs so he can improve enough to get him off the ECMO. The family is really praying so he can get strong enough to start receiving breast milk. Kellen just absolutely took off once he was able to get more of that miracle juice from Miss Elizabeth. She must be eating her Wheaties and sharing it with Kellen. Now we just need to pray so she can share that with Carson very soon!
I have had the pleasure to get to hear some wonderful stories and blessings through this journey but I want to share one with all of you. Some of you have heard this already but it bears repeating. Elizabeth Tomilary is a dear friend of the Bunches (and many in this email list). When she was praying for Elizabeth Clark and the twins on one occasion she very clearly heard God tell her that these twins were going to be OK and were going to be missionaries for him.... Now 'missionary' can be defined in many ways to each and every individual but I think it is pretty clear that God is already putting little Carson to work on this front. I personally have never witnessed such a concerted prayer effort by such a large, diverse group and so many comments of how this has touched people personally. I have enjoyed praying together with my three men - something we just don't do often enough...
So everyone - lets help Carson continue to be a missionary to God. Let raise the roof with prayers for this little man! And Maresa, tell Matthias he'll have to buy a fire extinguisher! :) Maresa was a foreign exchange student from Germany who lived with the Bunch family several years ago. Her husband, Matthias told her he was worried she would burn their house down with all the candles she was lighting for little Carson... :)
Thank you so much again to all and keep those prayers coming!
Posted by Alice
Francie just called saying that the bleeding from the cannula has slowed, not stopped. He has had to receive several blood products but the imminent danger has indeed lessened - not gone totally. He is still putting out a fair amount of urine so that is certainly good. He's just receiving so many different things that he continues to be challenged with the fluid overload issue.
We continue to pray so that God will help to heal his organs so he can improve enough to get him off the ECMO. The family is really praying so he can get strong enough to start receiving breast milk. Kellen just absolutely took off once he was able to get more of that miracle juice from Miss Elizabeth. She must be eating her Wheaties and sharing it with Kellen. Now we just need to pray so she can share that with Carson very soon!
I have had the pleasure to get to hear some wonderful stories and blessings through this journey but I want to share one with all of you. Some of you have heard this already but it bears repeating. Elizabeth Tomilary is a dear friend of the Bunches (and many in this email list). When she was praying for Elizabeth Clark and the twins on one occasion she very clearly heard God tell her that these twins were going to be OK and were going to be missionaries for him.... Now 'missionary' can be defined in many ways to each and every individual but I think it is pretty clear that God is already putting little Carson to work on this front. I personally have never witnessed such a concerted prayer effort by such a large, diverse group and so many comments of how this has touched people personally. I have enjoyed praying together with my three men - something we just don't do often enough...
So everyone - lets help Carson continue to be a missionary to God. Let raise the roof with prayers for this little man! And Maresa, tell Matthias he'll have to buy a fire extinguisher! :) Maresa was a foreign exchange student from Germany who lived with the Bunch family several years ago. Her husband, Matthias told her he was worried she would burn their house down with all the candles she was lighting for little Carson... :)
Thank you so much again to all and keep those prayers coming!
Posted by Alice
update #5 for today
Okay I'm going to get right to it. Francie is on her knees in the chapel praying for the following; please join her.
1. Carson is bleeding again from the canula. This needs to stop. The bleeding and clotting need to get under control.
2. More pee from Carson. The procedure to the abdomen went well today but they visually couldn't tell because he just still has so much fluid on him.
3. Carson needs to get to a point that he can eat normally. He needs to take in Liz's milk. His jaundice is not responding to the UV light treatment because his organs are not functioning normally (i.e. digesting food). The billirubin is building up and that's not good for any baby.
Thanks again prayer warriors!
Posted by Carolyn
1. Carson is bleeding again from the canula. This needs to stop. The bleeding and clotting need to get under control.
2. More pee from Carson. The procedure to the abdomen went well today but they visually couldn't tell because he just still has so much fluid on him.
3. Carson needs to get to a point that he can eat normally. He needs to take in Liz's milk. His jaundice is not responding to the UV light treatment because his organs are not functioning normally (i.e. digesting food). The billirubin is building up and that's not good for any baby.
Thanks again prayer warriors!
Posted by Carolyn
update #4 for today
Hello all...this is Francie's niece Carolyn signing on again to share the latest on the boys. First, when she called just now I have to share that you could hear the smile on her face and how thrilled she is for each and every miracle God is showering on these boys. Okay so for the good news from all your prayers
Kellen is doing AMAZING. Today was just his third day with a bottle and Grandpa Doug spent the night in the NICU and thus got to feed him early this morning and the sweet little thing took a whole 25 ml (remember he took only 5 ml on his first feeding) and today Kellen took 35 ml when Liz got to feed him his bottle which is the maximum they are looking for at his gestational age!!! Grandma Francie is elated beyond words at the miracle that he is. He is so small and yet he is smiling and functioning just as perfectly as any other baby. She commented on how she just loves looking at his tiny little tongue and fingers as they move and he figures out how to work all his parts.
Carson is keeping up with his brother in the miracle department. In the last hour he had 35 ml of urine output, praise the Lord! Francie told me there was a renowned neonatologist that used to tell his tiny patients that he would give them a quarter if they would pee 10 ml in an hour when they struggled and those quarters would get taped to their isolates. Well Carson is racking up some quarters and may have a deposit for his college fund before this is over. Aunt Sarah called for an update just after they found out about the record breaking 35 ml and she said she got to put down the quarter for that hour. Also Carson had the procedure this morning to remove the excess blood near the incision site and one of the nurses said she saw him move his right eye immediately after the procedure, this is a miracle because they were not sure they were able to preserve that nerve in the surgery. Grandma Francie was spending time with Carson singing the Old Rugged Cross (Doug sang this to Liz when she was a baby to calm her down) and the divine chaplet and she saw Carson open his right eye, then move his right hand, then right foot, then left hand and arm in that order as if to say I'm getting there the prayers are working.
Also Francie got to place these wonderful prayer blankets on the edge of the babies isolates today. A volunteer at the hospital made them and the priest there prayed over them and wrote down that prayer for Liz and Preston to repeat it to the boys. This morning at the daily mass the priest blessed the blankets and asked Francie to place them on the table in the back and that each person that attended mass that morning to touch the blankets and offer a prayer for the boys as they left the chapel. Francie said that there were more people than normal at the daily mass today and it thrilled her that all those additional prayers were going up for the boys.
I can tell you that Francie, Doug, Liz and Preston are all feeling the warmth and love of your prayers for their little miracle boys and are so thrilled to continue to see God's abundant blessings. They want to share the fruit of these prayers with you and thank you for your dedication to praying Carson and Kellen into full health.
We are so grateful for you!
Posted by Carolyn
Kellen is doing AMAZING. Today was just his third day with a bottle and Grandpa Doug spent the night in the NICU and thus got to feed him early this morning and the sweet little thing took a whole 25 ml (remember he took only 5 ml on his first feeding) and today Kellen took 35 ml when Liz got to feed him his bottle which is the maximum they are looking for at his gestational age!!! Grandma Francie is elated beyond words at the miracle that he is. He is so small and yet he is smiling and functioning just as perfectly as any other baby. She commented on how she just loves looking at his tiny little tongue and fingers as they move and he figures out how to work all his parts.
Carson is keeping up with his brother in the miracle department. In the last hour he had 35 ml of urine output, praise the Lord! Francie told me there was a renowned neonatologist that used to tell his tiny patients that he would give them a quarter if they would pee 10 ml in an hour when they struggled and those quarters would get taped to their isolates. Well Carson is racking up some quarters and may have a deposit for his college fund before this is over. Aunt Sarah called for an update just after they found out about the record breaking 35 ml and she said she got to put down the quarter for that hour. Also Carson had the procedure this morning to remove the excess blood near the incision site and one of the nurses said she saw him move his right eye immediately after the procedure, this is a miracle because they were not sure they were able to preserve that nerve in the surgery. Grandma Francie was spending time with Carson singing the Old Rugged Cross (Doug sang this to Liz when she was a baby to calm her down) and the divine chaplet and she saw Carson open his right eye, then move his right hand, then right foot, then left hand and arm in that order as if to say I'm getting there the prayers are working.
Also Francie got to place these wonderful prayer blankets on the edge of the babies isolates today. A volunteer at the hospital made them and the priest there prayed over them and wrote down that prayer for Liz and Preston to repeat it to the boys. This morning at the daily mass the priest blessed the blankets and asked Francie to place them on the table in the back and that each person that attended mass that morning to touch the blankets and offer a prayer for the boys as they left the chapel. Francie said that there were more people than normal at the daily mass today and it thrilled her that all those additional prayers were going up for the boys.
I can tell you that Francie, Doug, Liz and Preston are all feeling the warmth and love of your prayers for their little miracle boys and are so thrilled to continue to see God's abundant blessings. They want to share the fruit of these prayers with you and thank you for your dedication to praying Carson and Kellen into full health.
We are so grateful for you!
Posted by Carolyn
update #3 for today
Hello all this is Francie's niece Carolyn signing on again to share the latest on the boys. First when she called just now I have to share that you could hear the smile on her face and how thrilled she is for each and every miracle God is showering on these boys. Okay so for the good news from all your prayers
Kellen is doing AMAZING. Today was just his third day with a bottle and Grandpa Doug spent the night in the NICU and thus got to feed him early this morning and the sweet little thing took a whole 25 ml (remember he took only 5 ml on his first feeding) and today Kellen took 35 ml when Liz got to feed him his bottle which is the maximum they are looking for at his gestational age!!! Grandma Francie is elated beyond words at the miracle that he is. He is so small and yet he is smiling and functioning just as perfectly as any other baby. She commented on how she just loves looking at his tiny little tongue and fingers as they move and he figures out how to work all his parts.
Carson is keeping up with his brother in the miracle department. In the last hour he had 35 ml of urine output, praise the Lord! Francie told me there was a renowned neonatologist that used to tell his tiny patients that he would give them a quarter if they would pee 10 ml in an hour when they struggled and those quarters would get taped to their isolates. Well Carson is racking up some quarters and may have a deposit for his college fund before this is over. Aunt Sarah called for an update just after they found out about the record breaking 35 ml and she said she got to put down the quarter for that hour. Also Carson had the procedure this morning to remove the excess blood near the incision site and one of the nurses said she saw him move his right eye immediately after the procedure, this is a miracle because they were not sure they were able to preserve that nerve in the surgery. Grandma Francie was spending time with Carson singing the Old Rugged Cross (Doug sang this to Liz when she was a baby to calm her down) and the divine chaplet and she saw Carson open his right eye, then move his right hand, then right foot, then left hand and arm in that order as if to say I'm getting there the prayers are working.
Also Francie got to place these wonderful prayer blankets on the edge of the babies isolates today. A volunteer at the hospital made them and the priest there prayed over them and wrote down that prayer for Liz and Preston to repeat it to the boys. This morning at the daily mass the priest blessed the blankets and asked Francie to place them on the table in the back and that each person that attended mass that morning to touch the blankets and offer a prayer for the boys as they left the chapel. Francie said that there were more people than normal at the daily mass today and it thrilled her that all those additional prayers were going up for the boys.
I can tell you that Francie, Doug, Liz and Preston are all feeling the warmth and love of your prayers for their little miracle boys and are so thrilled to continue to see God's abundant blessings. They want to share the fruit of these prayers with you and thank you for your dedication to praying Carson and Kellen into full health.
Posted by Carolyn
Kellen is doing AMAZING. Today was just his third day with a bottle and Grandpa Doug spent the night in the NICU and thus got to feed him early this morning and the sweet little thing took a whole 25 ml (remember he took only 5 ml on his first feeding) and today Kellen took 35 ml when Liz got to feed him his bottle which is the maximum they are looking for at his gestational age!!! Grandma Francie is elated beyond words at the miracle that he is. He is so small and yet he is smiling and functioning just as perfectly as any other baby. She commented on how she just loves looking at his tiny little tongue and fingers as they move and he figures out how to work all his parts.
Carson is keeping up with his brother in the miracle department. In the last hour he had 35 ml of urine output, praise the Lord! Francie told me there was a renowned neonatologist that used to tell his tiny patients that he would give them a quarter if they would pee 10 ml in an hour when they struggled and those quarters would get taped to their isolates. Well Carson is racking up some quarters and may have a deposit for his college fund before this is over. Aunt Sarah called for an update just after they found out about the record breaking 35 ml and she said she got to put down the quarter for that hour. Also Carson had the procedure this morning to remove the excess blood near the incision site and one of the nurses said she saw him move his right eye immediately after the procedure, this is a miracle because they were not sure they were able to preserve that nerve in the surgery. Grandma Francie was spending time with Carson singing the Old Rugged Cross (Doug sang this to Liz when she was a baby to calm her down) and the divine chaplet and she saw Carson open his right eye, then move his right hand, then right foot, then left hand and arm in that order as if to say I'm getting there the prayers are working.
Also Francie got to place these wonderful prayer blankets on the edge of the babies isolates today. A volunteer at the hospital made them and the priest there prayed over them and wrote down that prayer for Liz and Preston to repeat it to the boys. This morning at the daily mass the priest blessed the blankets and asked Francie to place them on the table in the back and that each person that attended mass that morning to touch the blankets and offer a prayer for the boys as they left the chapel. Francie said that there were more people than normal at the daily mass today and it thrilled her that all those additional prayers were going up for the boys.
I can tell you that Francie, Doug, Liz and Preston are all feeling the warmth and love of your prayers for their little miracle boys and are so thrilled to continue to see God's abundant blessings. They want to share the fruit of these prayers with you and thank you for your dedication to praying Carson and Kellen into full health.
Posted by Carolyn
update #2 for today
Thank you, thank you, thank you for all your prayers yesterday for Carson to pee. His urine output last night was good and we still need more but Dr. Yang was comfortable with the amount. Praise God for all of our answered prayers.
Today's focused prayer requests:
1. Carson is having two procedures done today so please pray for the doctors and Carson's recovery on the following:
a. Carson has blood around the incision site that they need to drain
b. The doctors are going to put a needle into Carson's abdominal cavity to get more fluid off
2. Continued direction from God for all of the Doctors, Nurses and staff treating Carson and Kellen
3. Continued reduction of clotting and swelling and reduced dependence on the ECMO machine for Carson
4. God's healing hands on Carson to limit long term issues as he recovers
5. Strength and peace for the family specifically Liz and Preston as they continue love their babies into full health
No specific news on Kellen at this time. It is our understanding that he is still scheduled to remove the tubes to get to put on clothes today!
I can not put into words how much your prayers mean to all of us, thank you from the bottom of my heart
Grandma Francie
Posted by Carolyn
Today's focused prayer requests:
1. Carson is having two procedures done today so please pray for the doctors and Carson's recovery on the following:
a. Carson has blood around the incision site that they need to drain
b. The doctors are going to put a needle into Carson's abdominal cavity to get more fluid off
2. Continued direction from God for all of the Doctors, Nurses and staff treating Carson and Kellen
3. Continued reduction of clotting and swelling and reduced dependence on the ECMO machine for Carson
4. God's healing hands on Carson to limit long term issues as he recovers
5. Strength and peace for the family specifically Liz and Preston as they continue love their babies into full health
No specific news on Kellen at this time. It is our understanding that he is still scheduled to remove the tubes to get to put on clothes today!
I can not put into words how much your prayers mean to all of us, thank you from the bottom of my heart
Grandma Francie
Posted by Carolyn
update #1 for today
HAPPY ONE WEEK BIRTHDAY TO CARSON AND KELLEN!!
WOW, prayers work!!! Carson peed so well last night. He was -10 cc every hour. That means he peed out 10 more ccs than he took in each hour. For right now, he did so well, he doesn't need ultrafiltration which is a type of dialysis. Yeah!!! So he still has way too much fluid on his body and lungs, so they aren't willing to take him off... his ECMO (bypass) machine adn so the same risks are still present. We have to keep praying for protection for his body from all the risks. He has to have a hematoma drained that is very close to the input of the bypass machine so it could compromise the input for his blood. However, that shouldn't be a major procedure and just drain the hematoma in the NICU. He also has to have a tube placed into his peritoneum (the abdominal cavity) b/c he has accumulated so much fluid around his abdominal organs. That will be drained. That will also be done in the NICU but we need to pray for precision of technique and no perforation of his intestines or other important structures in his abdomen in the process. Also no infection which could be very dangerous. They end up having to give him back half of the fluid they take off of his body so we need to pray his vessels aren't leaky and hold the fluid in the bloodstream rather than letting it go out into his tissues causing all this edema. Keep up the awesome work on the prayers. God is listening and we are so thankful for all the miracles each day. Kellen continues to do great!!
WOW, prayers work!!! Carson peed so well last night. He was -10 cc every hour. That means he peed out 10 more ccs than he took in each hour. For right now, he did so well, he doesn't need ultrafiltration which is a type of dialysis. Yeah!!! So he still has way too much fluid on his body and lungs, so they aren't willing to take him off... his ECMO (bypass) machine adn so the same risks are still present. We have to keep praying for protection for his body from all the risks. He has to have a hematoma drained that is very close to the input of the bypass machine so it could compromise the input for his blood. However, that shouldn't be a major procedure and just drain the hematoma in the NICU. He also has to have a tube placed into his peritoneum (the abdominal cavity) b/c he has accumulated so much fluid around his abdominal organs. That will be drained. That will also be done in the NICU but we need to pray for precision of technique and no perforation of his intestines or other important structures in his abdomen in the process. Also no infection which could be very dangerous. They end up having to give him back half of the fluid they take off of his body so we need to pray his vessels aren't leaky and hold the fluid in the bloodstream rather than letting it go out into his tissues causing all this edema. Keep up the awesome work on the prayers. God is listening and we are so thankful for all the miracles each day. Kellen continues to do great!!
Posted by Sarah
Monday, November 14, 2011
update #2 for today
Hey everyone!! I just had a phone call from my mom. She would like everyone who can to pray for Carson to PEE!!!! That really is what is holding him up at this point and if he does not pee a lot and get rid of his edema, tomorrow they are going to have to do a lot more extensive procedures and we would like to avoid the risk of that. So please pray for pee. We so appreciate it. He is doing so well but just has so much fluid in his lungs, he can't oxygenate unless he pees, pees, pees.
Thank you!
Posted by Sarah
Thank you!
Posted by Sarah
update #1 for today
No big news, just an update and today's prayer requests. Kellen continues to improve, so much so that they hope to take all his tubes off tomorrow and try to put some clothes on him! He seems to sleep the best when Grandma Francie's hands are on his chest and arms. He is quite content when she is cuddling with him this way and seems to get restless if she moves her hands away. Grandma is happy to oblige. :)
In other fun news...Carson is grasping fingers when they are near his hands! This is very good news! He is also down to 200 on the ECMO machine, which gets him much closer to the point where he can get off the machine. However, the lower the numbers, the greater the risk of clotting. Also, the swelling still has not gone down, so we ask for special prayers for this. Here are some specific prayer points for our precious little boy:
The family continues to be amazed and so very grateful for all of your prayers!!!
In other fun news...Carson is grasping fingers when they are near his hands! This is very good news! He is also down to 200 on the ECMO machine, which gets him much closer to the point where he can get off the machine. However, the lower the numbers, the greater the risk of clotting. Also, the swelling still has not gone down, so we ask for special prayers for this. Here are some specific prayer points for our precious little boy:
- insight and direction for all doctors and staff as they consider treatments
- that the swelling would go down soon...this is becoming a big concern
- no clotting in the ECMO machine as they near the point of getting him off of it
- no functional deficits when he gets through all this
The family continues to be amazed and so very grateful for all of your prayers!!!
Posted by Ahdra
Sunday, November 13, 2011
update #2 for today
So the updates are fewer and longer in between which is wonderfull because it's much less 'exciting' than Friday. That is a great thing! I haven't been able to get online today because I was driving to and from St. Louis!! My family drove up and back there today and Ann Bunch (Doug's mother) and Anna Bunch (Doug's niece) rode with us. We all got to go back to see the babies - two at a time!! There were other visitors as well on Doug's side of the family. Today was Dave's (Preston's Dad's) birthday, so my niece, Carolyn, who lives in St. Louis made an amazing meal with the assistance of her sister, Ahdra who drove in all the way from Columbus, OH. Francie said it was such a God thing. Elizabeth, in the middle of all this on Saturday told Francie she wished there was a way that they could celebrate Dave's birthday and that someone could maybe make a cake..... Then Carolyn delivered!!
Those boys are just so priceless. So I just want to describe kind of the layout as a visual. I was kind of envisioning a large room with many babies in the NICU. My children were not able to go back so this helped them to kind of visualize how it looked. This hospital (Cardinal Glennon) has a very nice set up for these very tiny (in most cases) babies. There are three hallways with several (at least 8-10) individual rooms. So Carson and Kellen are in their own room. Kellen is in the first 'bed'/ isolette. They keep him covered up with a blue blanket over his isolette so that all the 'action' on Carson's side of the room doesn't disturb Kellen. In between them is the ECMO machine. There are two nurses (at least) in the room at all times and one just watches the ECMO. Then Carson has a blue light on him to help decrease the bilirubin. This is very bright so he has 'sunglasses' on.... :) They look like they're made of a white felt or something like that but there is the outline of what looks like sunglasses on that. It was so cute! On the wall opposite the boys there are about 4-6 scrapbook pages on the wall..... So Carson's nurse had some time on her hands while he was off to surgery on Friday. She scrapbooked some of the most amazing pictures!!!! They took several pictures on 11-11-11 at 11:11am right before Carson went off to surgery with Kellen in Carson's bed.... You wouldn't believe it unless you saw it with your own eyes... Kellen just put his little hand on Carson's arm. It looked like he was saying "It's going to be OK buddy. I'm here." There was another scrapbook page with both of their hand prints and foot prints - with a very cute saying on it about twins. It was just so sweet that this nurse took the time to do something special like this for Preston and Elizabeth to personalize the room.
Elizabeth got dismissed on Friday from St. Mary's and on the same day an opening came up for her and Preston to stay at the Ronald MacDonald house about a block from Cardinal Glennon! How about that for a GMC?? ! They have a nice setup there. It sounded like one meal was provided for them each day and the room and in exchange they have 'chores' to do :). They get to clean up and vacuum the family room each day. I believe the day after surgery (one night anyway) They both got a really good night of sleep. Preston is feeling much better. Elizabeth looks GREAT for having had this major surgery and of course she absolutely never complains. She is pumping breast milk - which Kellen is getting in increasing amounts and a huge positive - Elizabeth got to feed Kellen his first bottle at about 3:00 today. The nurses kind of prepared her that Kellen may really not take the bottle at all today but he actually took about 5ml from the bottle on the first try. Little trooper!
Carson is still getting his nutrition from IV support at this point from what I understood. He looks remarkably good for this major surgery. He lies very still as they still have him sedated at this point. Francie and several have sang to him and he really seems to respond to that. They feel he is progressing very positively. The ECMO has been decreased several times. I'm not sure what the level was at today but they have discussed how low they can take it without increasing the risk for more clots before they start trying to wean off of the ECMO and onto just ventilator support. From what I was told he is tolerating everything very well to at the very least reasonably well! Please keep the prayers coming for no complications so he can continue to heal and get stronger.
The family today all expressed how grateful they are for the PRAYERS! We are watching God perform miracle after miracle through these two little men.
Thank you so much and continue to pray.
Posted by Alice
Those boys are just so priceless. So I just want to describe kind of the layout as a visual. I was kind of envisioning a large room with many babies in the NICU. My children were not able to go back so this helped them to kind of visualize how it looked. This hospital (Cardinal Glennon) has a very nice set up for these very tiny (in most cases) babies. There are three hallways with several (at least 8-10) individual rooms. So Carson and Kellen are in their own room. Kellen is in the first 'bed'/ isolette. They keep him covered up with a blue blanket over his isolette so that all the 'action' on Carson's side of the room doesn't disturb Kellen. In between them is the ECMO machine. There are two nurses (at least) in the room at all times and one just watches the ECMO. Then Carson has a blue light on him to help decrease the bilirubin. This is very bright so he has 'sunglasses' on.... :) They look like they're made of a white felt or something like that but there is the outline of what looks like sunglasses on that. It was so cute! On the wall opposite the boys there are about 4-6 scrapbook pages on the wall..... So Carson's nurse had some time on her hands while he was off to surgery on Friday. She scrapbooked some of the most amazing pictures!!!! They took several pictures on 11-11-11 at 11:11am right before Carson went off to surgery with Kellen in Carson's bed.... You wouldn't believe it unless you saw it with your own eyes... Kellen just put his little hand on Carson's arm. It looked like he was saying "It's going to be OK buddy. I'm here." There was another scrapbook page with both of their hand prints and foot prints - with a very cute saying on it about twins. It was just so sweet that this nurse took the time to do something special like this for Preston and Elizabeth to personalize the room.
Elizabeth got dismissed on Friday from St. Mary's and on the same day an opening came up for her and Preston to stay at the Ronald MacDonald house about a block from Cardinal Glennon! How about that for a GMC?? ! They have a nice setup there. It sounded like one meal was provided for them each day and the room and in exchange they have 'chores' to do :). They get to clean up and vacuum the family room each day. I believe the day after surgery (one night anyway) They both got a really good night of sleep. Preston is feeling much better. Elizabeth looks GREAT for having had this major surgery and of course she absolutely never complains. She is pumping breast milk - which Kellen is getting in increasing amounts and a huge positive - Elizabeth got to feed Kellen his first bottle at about 3:00 today. The nurses kind of prepared her that Kellen may really not take the bottle at all today but he actually took about 5ml from the bottle on the first try. Little trooper!
Carson is still getting his nutrition from IV support at this point from what I understood. He looks remarkably good for this major surgery. He lies very still as they still have him sedated at this point. Francie and several have sang to him and he really seems to respond to that. They feel he is progressing very positively. The ECMO has been decreased several times. I'm not sure what the level was at today but they have discussed how low they can take it without increasing the risk for more clots before they start trying to wean off of the ECMO and onto just ventilator support. From what I was told he is tolerating everything very well to at the very least reasonably well! Please keep the prayers coming for no complications so he can continue to heal and get stronger.
The family today all expressed how grateful they are for the PRAYERS! We are watching God perform miracle after miracle through these two little men.
Thank you so much and continue to pray.
Posted by Alice
update #1 for today
Kellen is doing so well. He is at 25 ml every 3 hours for his feed. He gets to try a bottle one time today for the first time. Elizabeth is going to be here for it at 3 pm. They don't think he will do very well the first time, but he gets to try : ). Other than that he is getting close to not needing any IV fluids, YEAH!!!! Grandpa Bunch got to hold Kellen for the first time last night. He picked the right shift to stay for because Papa Clark had last night and didn't get to hold, but I am sure that will be coming soon. It is hit and miss at this point.
Carson is doing very well. He is done to 250 on his flow on the ECMO machine. It basically means he is doing better and we have to get him to 200 before they will consider weaning him off. He is certainly making progress because last night he was at 320. The clots do not appear to have changed and the perfusionist was not concerned. At this time, she is watching them and we don't need to change the tubing. Carson is peeing a lot better and we are so proud of him.
Carson had a head ultrasound yesterday and it showed a normal brain NO BLEEDS... praise the Lord. At this point, our biggest prayers need to be no bleeds in his brain from having so much heparin and no movement of the clots in the ECMO machine. And of course, prayers for direction of all the staff and doctors and continued healing. I am praying for miracles and complete healing of Carson so he will have no functional deficits when he gets through this. We are so proud of him and thank God at every moment for the miracles he has provided.
Posted by Sarah
Carson is doing very well. He is done to 250 on his flow on the ECMO machine. It basically means he is doing better and we have to get him to 200 before they will consider weaning him off. He is certainly making progress because last night he was at 320. The clots do not appear to have changed and the perfusionist was not concerned. At this time, she is watching them and we don't need to change the tubing. Carson is peeing a lot better and we are so proud of him.
Carson had a head ultrasound yesterday and it showed a normal brain NO BLEEDS... praise the Lord. At this point, our biggest prayers need to be no bleeds in his brain from having so much heparin and no movement of the clots in the ECMO machine. And of course, prayers for direction of all the staff and doctors and continued healing. I am praying for miracles and complete healing of Carson so he will have no functional deficits when he gets through this. We are so proud of him and thank God at every moment for the miracles he has provided.
Posted by Sarah
Saturday, November 12, 2011
update #2 for today
I just spoke to Francie. No huge updates but she knows that many are waiting for any news. She got to spend quite a bit of time with the boys today. She sang the Our Father, Hail Mary and Jesus Loves Me to Carson and Kellen. Apparently Jesus Loves Me is the song Elizabeth sang each night to them while they were in utero... :) She also prayed/sang the chaplet to them. She has gotten to place her finger near them and they will grab her finger. :) She said Carson grabbed her pinky and it just warmed her heart so. Carson has tolerated the ECMO being decreased by 'baby steps' twice already so that is very good. The latest on the clotting issue is that they have decided not to change the tubing because there are risks with doing that also... Kellen is still doing very well. Specific prayer requests - so there is no bleeding in his brain and so no clots cause problems for Carson. Also for respite for Preston and Elizabeth so they can stay strong.
Tomorrow is Dave (Preston's Dad's) birthday so we hope for a good day for all tomorrow for a wonderful birthday present. Doug is spending tonight with Carson and Kellen. My family is going up to St. Louis tomorrow for a very brief visit so Doug will ride back with us.
I can't tell you all how much it means to Francie and the entire family to know how many are lifting little Carson and Kellen and all of them up in prayer. Thank you!!
Posted by Alice
Tomorrow is Dave (Preston's Dad's) birthday so we hope for a good day for all tomorrow for a wonderful birthday present. Doug is spending tonight with Carson and Kellen. My family is going up to St. Louis tomorrow for a very brief visit so Doug will ride back with us.
I can't tell you all how much it means to Francie and the entire family to know how many are lifting little Carson and Kellen and all of them up in prayer. Thank you!!
Posted by Alice
update #1 for today
First update of the day. Carson seems to be holding his own today. Preston and Dave (his Dad) spent the night with the babies last night. Preston is not feeling great today. Please pray so he can have a peace about maybe trying to leave and get some real rest today. The main issue today with Carson is that there is a clotting issue. There are little clots in the tubing..... not good. So they are having to periodically change out the tubing from the ECMO which then necessitates that he be put on a different 'emergency' system. Please pray so the clotting issue becomes less and is resolved as soon as possible. He is still quite swollen so the other prayer is that his kidneys start kicking in to remove some of this fluid. Sarah says he is beautiful - now that they can see more of his face, they see that he has a cleft chin like his brother, Daddy and Grandpa! Sarah said when she came in today she touched his foot and told him good morning - and he blinked both of his eyes - sich a blessing that he can do that!! Oh, and on another good note - he has pooped twice already! Little Carson has four nurses assigned to him so they really are doing everything to take such good care of him that they are able to. Elizabeth is sore and very weak. We are praying so she can get some good rest today to continue healing herself. Sarah says Elizabeth is just doing amazing and she's really proud of her with all that is going on. On a really positive note - little Kellen is doing great! He is up to 20ml of breast milk through the ng tube. If he continues progressing as well as his is he should be off all other IV fluids within a day or so. Sarah said Kellen opened his eyes and just looked at her and Dave (Preston's Dad) for quite some time today. She said it was just precious!
Thank you so much for all your continued prayers.
Posted by Alice
Thank you so much for all your continued prayers.
Posted by Alice
Friday, November 11, 2011
surgery update #5
Last update for tonight...
Carson is back up to the NICU. There was a team of about 12 that transported him back up there and Francie said the doctors looked so tired. Elizabeth and Preston just went in to see him now. He moved one of his eyes and the main doctor said that is a very good sign as they do not know which facial nerves are intact and which may not be. He is still on the ECMO (heart/lung support machine) and will be for several days the way that it sounded. She said it's kind of like a ventilator - that he will have to be 'weaned' off of it gradually. They'll try him off of it for short periods and see how he is doing. By the way, they (family) had went down to the hospital cafeteria about 8pm and saw one of the doctors that they knew had been in the OR. So they talked to him and said they understood there had been several 'close calls'. He told them, more than that - little Carson actually had to be rescusitated more than once......thank you all SO MUCH for your prayers. I have NO DOUBT that this concerted prayer effort is the reason we have been blessed to see God's work in this miracle today!
Specific prayer requests -
1) That Carson's lungs and kidneys will start working and that weaning off the ECMO will go as smoothly as possible.
2) No infection or other unknown complication during the recovery process.
3) Continued guidance for the doctors and medical staff.
4) Continued strength and peace for Preston, Elizabeth and all the family!
Thank you all SO MUCH. This blesses me to know that so many want to share in this and support this very precious family!
Posted by Alice
Carson is back up to the NICU. There was a team of about 12 that transported him back up there and Francie said the doctors looked so tired. Elizabeth and Preston just went in to see him now. He moved one of his eyes and the main doctor said that is a very good sign as they do not know which facial nerves are intact and which may not be. He is still on the ECMO (heart/lung support machine) and will be for several days the way that it sounded. She said it's kind of like a ventilator - that he will have to be 'weaned' off of it gradually. They'll try him off of it for short periods and see how he is doing. By the way, they (family) had went down to the hospital cafeteria about 8pm and saw one of the doctors that they knew had been in the OR. So they talked to him and said they understood there had been several 'close calls'. He told them, more than that - little Carson actually had to be rescusitated more than once......thank you all SO MUCH for your prayers. I have NO DOUBT that this concerted prayer effort is the reason we have been blessed to see God's work in this miracle today!
Specific prayer requests -
1) That Carson's lungs and kidneys will start working and that weaning off the ECMO will go as smoothly as possible.
2) No infection or other unknown complication during the recovery process.
3) Continued guidance for the doctors and medical staff.
4) Continued strength and peace for Preston, Elizabeth and all the family!
Thank you all SO MUCH. This blesses me to know that so many want to share in this and support this very precious family!
Posted by Alice
surgery update #4
The mass is OFF!!! There were several very close calls but Carson is holding his own. They have completely removed the mass. Now they are starting the very tenuous process of closing him up. They have mentioned that they are unsure as to what function that he may have after surgery is complete. However the HUGE blessing is that the doctor that came out to talk to them said that they have every expectation at this point for him to survive the remainder of the surgery. Now we have to pray specifically:
1 - to guide their hands for the best closure possible
2 - so that there was no brain damage or other major 'functional' damage that is unknown at this time
3 - for no infections or other complications with healing from here on out.
Thank you for praying!!!
1 - to guide their hands for the best closure possible
2 - so that there was no brain damage or other major 'functional' damage that is unknown at this time
3 - for no infections or other complications with healing from here on out.
Thank you for praying!!!
Posted by Alice
surgery update #3
OK - 5:36 pm - Sarah just called and Carson had a 'moment of instability' as she phrased it but regained and is now doing OK again. They just told them that they have about half the mass removed so far...
Posted by Alice
Posted by Alice
surgery update #2
Carson is holding his own so far. We got news again of successful use of ECMO (extracorporeal membrane oxygenation) (heart and lung bypass). We also heard the first incision has been made. The rest is just waiting and praying, because there is extensive blood vessel and nerve dissection.
Posted by Sarah
surgery update #1
Sarah just called me a few minutes ago. I am hoping I get this correct. They were able to secure a central line and also were able to get Carson onto a 'heart/lung' machine (I believe this is what she said) - life support - that he will need to be on during the surgery. They were successful in doing this so this is HUGE. Had they not been able to successfully accomplish this it would not be good at all.
We so appreciate your continued prayers and we will pass on updates as we hear. Please feel free to share the information.
Posted by Alice
We so appreciate your continued prayers and we will pass on updates as we hear. Please feel free to share the information.
Posted by Alice
update #3 for today
It was supposed to be 11:30 but we are still waiting for the surgeons to come and get him. Liz and Preston were able to spend time with him and Kellen got some brother time. It was precious. The surgery could last into the night.
Posted by Sarah
Posted by Sarah
update #2 for today
Carson will be going to surgery in about 45 minutes. It will be a miracle if he survives!
Please pray for him as he has wiggled his way right into everyone's heart and is such a joy to be around. I will never be the same and he is forever in my heart.
It will be a long surgery.
Posted by Sarah
Posted by Sarah
update #1 for today
Just an additional update on specific prayers to be praying... Carson's breathing has not been as good since 4 am. He is requiring 100% oxygen instead of 50% which he was using. They took a chest x-ray and he looks like he is getting pretty hazy in his lung fields... lots of fluid. We are going to increase his vent settings and see if we can get him better that way. Good news, a little pressure is helping some but if you could add in prayers for his breathing that would be awesome! Love you all
Posted by Sarah
Posted by Sarah
Thursday, November 10, 2011
update #2 for today
Okay, in last two hours Carson peed out 10 cc each hour!!! YEAH!!! Celebrating over the little things in life : ) All I can say is it is a rollercoaster with babies in the NICU. Now, the surgeon is wanting another test, he says he can't do it until Monday and then surgery on Tuesday. I really just don't see how Carson can make it that long. And all of us that work in hospitals know, things get bumped... for emergencies. THIS IS AN EMERGENCY in my mind! Working on being a slightly squeaky wheel (but kind at the same time) to get this study completed faster and Carson on his way to recovery. Kellen, by the way, is doing marvelously!!! Getting 10 cc of real formula every 3 hours and doing fantastic on his nasal cannula.
Posted by Sarah
update #1 for today
Here is the situation. They have a wonderful staff of multidisciplinary doctors working on the best way to have a successful surgery and not result in life-threatening loss of blood or injury to nerves. The mass is more extensive than really anyone expected and not something that has really ever been seen before. There is not a lot of precedence so they are all working together to help Carson. As a result, Dr. Yang, the main surgeon is ready to perform surgery. However, several of the cardiologists feel it would be very beneficial to get an angiogram and consider clotting off certain arteries about 1 day before surgery to prevent major blood loss. As a result, they need special catheters to do this procedure and can only do it one day before surgery. It is not optimal to do any of the surgeries on the weekend, so we are left with waiting for Monday for the study an the surgery on Tuesday. Carson has held his own today but continues to struggle a great deal with swelling which results in increased fluid in his lungs, more work for his heart, and skin breakdown. Dr. Yang, Dr. Naguchi (the neonatologist), ENT doctors, plastic surgeons, cardiologists, and other surgeons consulted feel it is best to wait since he has stabilized. They are all keeping a very close eye on how he is doing and Dr. Yang says he is ready to go at any time if he makes a turn for the worse. Each surgeon has come by and talked to us and I am very impressed with their compassion, caring attitudes, and willingness to pitch in. I feel much more confident after talking to them than before when we were not sure why we were waiting.
Kellen is doing AMAZING!!! He is getting 10 ml of formula/breast milk (what Liz has been able to pump) every 3 hours and doing quite well. He is off oxygen and just has a little pressure through a nasal cannula to help him remember to breathe. Actually, they feel by morning he will not have any respiratory support he is doing so well. He also is off antibiotics and no signs of any infections. He opened his eyes and smiled and Mom and Dad today. We also got to put Kellen in Carson's bed with him for about 1 hour today and it was beautiful. I was completely impressed that they both had better oxygen saturations than they had all day when they were together. It was their first sleepover : )
Elizabeth is truly one of the strongest and bravest women I know and I couldn't be anymore proud. She has a huge incision but hasn't complained once and none of the surgeons can believe she is up walking let alone visiting her boys. She amazes me.
PRAYER REQUESTS:
1. Guidance for the surgeons to know when they need to do the surgery, God's skill and wisdom directing them in their procedures and ability to work as a group
2. Peace for Liz and Preston and continued healing
3. LOTS OF PEE from Carson
4. No infections and stable lung/heart function in Carson
5. Ability to make it to Tuesday for Carson
6. For the mass to not die anymore creating toxins circulating in Carson's blood
7. No serious nerve/muscle/brain injury from the surgery
8. MIRACLES
Posted by Sarah
Kellen is doing AMAZING!!! He is getting 10 ml of formula/breast milk (what Liz has been able to pump) every 3 hours and doing quite well. He is off oxygen and just has a little pressure through a nasal cannula to help him remember to breathe. Actually, they feel by morning he will not have any respiratory support he is doing so well. He also is off antibiotics and no signs of any infections. He opened his eyes and smiled and Mom and Dad today. We also got to put Kellen in Carson's bed with him for about 1 hour today and it was beautiful. I was completely impressed that they both had better oxygen saturations than they had all day when they were together. It was their first sleepover : )
Elizabeth is truly one of the strongest and bravest women I know and I couldn't be anymore proud. She has a huge incision but hasn't complained once and none of the surgeons can believe she is up walking let alone visiting her boys. She amazes me.
PRAYER REQUESTS:
1. Guidance for the surgeons to know when they need to do the surgery, God's skill and wisdom directing them in their procedures and ability to work as a group
2. Peace for Liz and Preston and continued healing
3. LOTS OF PEE from Carson
4. No infections and stable lung/heart function in Carson
5. Ability to make it to Tuesday for Carson
6. For the mass to not die anymore creating toxins circulating in Carson's blood
7. No serious nerve/muscle/brain injury from the surgery
8. MIRACLES
Posted by Sarah
Wednesday, November 9, 2011
update #3 for today
We just got back from the NICU at Cardinal Glennon a while ago. First we verified Carson's weight and he weighs approx. 3 something without the mass. Kellen is 16 in. long and Carson is 15 and a half in. We had a beautiful time with the babies. I got to sing to both, talk to them, and Elizabeth and I both got to hold Kellen. Doug and Preston's parents were there as well. The team of surgeons for the mass came in while we were there and spent considerable time discussing what they found out from the MRI and other tests and then they discussed it with all of us. As Elizabeth said, Carson is deteriorating. His kidneys and 1 lung are not doing well... so much stress from the mass. They need to do the surgery as soon as possible. If they can get all the surgeons together, they hope to do it Friday.
The mass is much more devastating than what was previously thought. They are not sure they will be able to save the branches of the facial nerves. In infants these nerves are the size of a pencil lead... in preemies, much smaller... and they don't know if his heart will be able to handle the surgery. It will be an all day surgery. Some specific things to pray for
that they will be able to find and save the nerves that control the eye... so the eye will be able to close
to find and save the nerves that control the mouth... so it is not droopy
to have enough facial tissue to cover the face once the mass is off.
naturally for our Great Divine Physician to direct every move of the surgeon's hands and to direct their thoughts
for continued strength and grace for Preston and Elizabeth... and our family... We did share a fair amount of tears this afternoon. Preston Eizabeth and I have had some good time back in her room... just talking through the information and our emotions.
When I was processing this all... Mark 10:27 'With man things may not be possible,but with God all things are possible" and I don't know the verse number but the verse is Jesus' words "Do not fear, only believe" came to my mind
The mass is much more devastating than what was previously thought. They are not sure they will be able to save the branches of the facial nerves. In infants these nerves are the size of a pencil lead... in preemies, much smaller... and they don't know if his heart will be able to handle the surgery. It will be an all day surgery. Some specific things to pray for
that they will be able to find and save the nerves that control the eye... so the eye will be able to close
to find and save the nerves that control the mouth... so it is not droopy
to have enough facial tissue to cover the face once the mass is off.
naturally for our Great Divine Physician to direct every move of the surgeon's hands and to direct their thoughts
for continued strength and grace for Preston and Elizabeth... and our family... We did share a fair amount of tears this afternoon. Preston Eizabeth and I have had some good time back in her room... just talking through the information and our emotions.
When I was processing this all... Mark 10:27 'With man things may not be possible,but with God all things are possible" and I don't know the verse number but the verse is Jesus' words "Do not fear, only believe" came to my mind
Thank you thank you thank you
Posted by Francie
update #2 for today
Elizabeth is doing great... has all the IV's out, is walking, eating solid food, and has pumped 4 times now. She asked me to french braid her hair ... as she has not been able to wash it for many days... I was absolutely thrilled...She is still moving slow... but so much better.
Another blessing is that I got to do Preston's laundry...
Doug got to spend the night in the NICU.
Preston's parents and Doug have spent today with the babies.
They have done the CT scan and MRI on Carson this afternoon. We are anxiously awaiting the results and when they decide to do the surgery. Kellen loves the pacifier... they say he has a temper when he loses his pacifier. Preston, Elizabeth and I are heading her over to Cardinal Glennon now. They said Elizabeth and Preston may get to hold Kellen.
Another blessing is that I got to do Preston's laundry...
Doug got to spend the night in the NICU.
Preston's parents and Doug have spent today with the babies.
They have done the CT scan and MRI on Carson this afternoon. We are anxiously awaiting the results and when they decide to do the surgery. Kellen loves the pacifier... they say he has a temper when he loses his pacifier. Preston, Elizabeth and I are heading her over to Cardinal Glennon now. They said Elizabeth and Preston may get to hold Kellen.
Thank you so very very much for the continued prayers.... for miracles concerning the removal of this mass on our dear baby.
Posted by Francie
update #1 for today
Hello to all, I got to spend the entire afternoon with my nephews in the NICU b/c Liz was at the other hospital. James and I heard Baby B cry for the first time after he was extubated. I cannot tell you how much I already love those two precious babies. I have included a picture of Baby B. It isn't the best but we haven't gotten others downloaded. Please be praying b/c they are doing a lot of imaging and discussing today and tomorrow about surgery for Baby A, Carson David is his name. I really want him to have surgery on Friday but they are thinking about waiting until Tuesday. We are not going to circulate pics of Baby A, Carson, yet but he is truly beautiful and already a little fighter. Liz is doing MUCH better and I am so incredibly thankful. I think we will have a name today for Baby B b/c Liz will actually get to spend some time with them. The mass on Carson is large, but we know God is bigger and will help the surgeons do a fantastic job.
Posted by Sarah
Tuesday, November 8, 2011
update #2 for today
A last update for today-
Elizabeth continues to improve... tis a slow process, but I am loving every minute I get to spend with her, helping her turn from side to side, feeding her orange jello:), and adjusting whatever.
Sarah and James got to spend most of the afternoon with the babies in NICU and were there when they took the breathing tube out of BAby B, which allowed our lil guy to cry for the first time. James recorded it on his phone and brought it over to all of us so we all got to hear his first cry.
Doug is planning to spend the night in the NICU with his grandbabies.
Testing will continue tomorrow to assess the mass. Dr. Vlastos came in and explained sooo much. They are really not sure what is all involved with the mass... so I continue to pray for miracles for our lil angel. The mass is really massive.
Elizabeth continues to improve... tis a slow process, but I am loving every minute I get to spend with her, helping her turn from side to side, feeding her orange jello:), and adjusting whatever.
Sarah and James got to spend most of the afternoon with the babies in NICU and were there when they took the breathing tube out of BAby B, which allowed our lil guy to cry for the first time. James recorded it on his phone and brought it over to all of us so we all got to hear his first cry.
Doug is planning to spend the night in the NICU with his grandbabies.
Testing will continue tomorrow to assess the mass. Dr. Vlastos came in and explained sooo much. They are really not sure what is all involved with the mass... so I continue to pray for miracles for our lil angel. The mass is really massive.
Thank you from the bottom of my heart and toes!
Posted by Francie
update #1 for today
Some of you may already know all or most of this. The babies were born this morning at 9:48 and 9:49. They were able to establish an airway on Baby A - which they named Carson David. They plan to do an MRI soon, maybe tomorrow, to view the mass and strategically plan a surgical removal as the mass is very complex and very large. Baby B's weight is 3 lbs, 13 oz. and they won't know an actual weight on Baby A until the mass is removed which they are tentatively talking about Friday to maybe next Tuesday. Elizabeth was quite nauseated and is on clear liquids - and is pretty sore. She has been transferred back to St. Marys and will begin pumping milk for the babies. She will be able to get a 'pass' to go see the babies daily. All heart and other major organ functions look good on both babies from what they can tell. I think that's all we know for now. As we hear more I will pass on more info. Please email me if you don't hear from me.
They have not named Baby B yet as Elizabeth has not even gotten to see him yet. She will tomorrow and we may have a name by then. Baby B even had to be intubated becase of being born early and lower birthweight but has already been extubated and is doing well. James and Sarah spent most of the day with the babies. The were on 'baby duty' and were there when the baby was extubated. James recorded the baby's first cries and took it to the rest of the family to hear... :) Please continue praying for miracles for the removal of the mass and not complications! The doctor came in the evening to really explain alot to the family. The doctors really aren't even sure what all is involved with the mass at this time so the imaging that is planned will really help them
Posted by Alice
They have not named Baby B yet as Elizabeth has not even gotten to see him yet. She will tomorrow and we may have a name by then. Baby B even had to be intubated becase of being born early and lower birthweight but has already been extubated and is doing well. James and Sarah spent most of the day with the babies. The were on 'baby duty' and were there when the baby was extubated. James recorded the baby's first cries and took it to the rest of the family to hear... :) Please continue praying for miracles for the removal of the mass and not complications! The doctor came in the evening to really explain alot to the family. The doctors really aren't even sure what all is involved with the mass at this time so the imaging that is planned will really help them
Posted by Alice
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