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
Tuesday, November 15, 2011
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
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