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
Monday, November 14, 2011
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
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