Carter has been home for 5 weeks now. He's gained a ton of weight and is now 7 pounds, 2 ounces and almost 20 inches long. In the last two weeks he gained 21 ounces! He has chubbier cheeks and still has some serious bags under his eyes, probably because he's still having a hard time filling out his face! Carter is still on the very lowest setting for oxygen and has been for about two months. It's funny that the steroid shots I was given in the hospital before they were born worked to develop Weston's lungs but not Carter's.
Weston weighs 8 pounds, 11 ounces and is over 23 inches long. He is such a big boy! His look has changed a lot since he was born because he got so swollen with both of his surgeries but now he is long and skinny and it makes him look very grown up.
Weston has done an amazing job recovering from his surgery. It took him a little on the longer side to start eating again because they normally wait until they've had a bowel movement. Weston never really had one so they started feeding him after he was passing gas and had "good bowel sounds."
They started him on 5 mL every three hours from a bottle and went up slowly. Normally babies have a really hard time figuring out what they're supposed to do with a bottle when they haven't eaten for several months but Weston was having none of that! I still don't think he has ever left a bottle unfinished. He chows down everything in sight! So many of the nurses have told me they're amazed at how well he handled it. Carter told me he's very proud of Weston too. It was fun to see all of Weston's tubes slowly disappear after his surgery. Ventilator, Anderson line, NG tube, and PICC. Now he just has the monitor lines that every baby has in the NICU. He's turning into a normal baby!!!
Weston has three horizontal scars on his belly. I should take a picture to post but there is one long one in the middle where they opened him up for surgery and two small ones where they brought up his intestines to the surface for refeeding.
So as I said before, they went up very slowly on his volume. When he almost got up to full feeds, they took him completely off the TPN. That was a big day!! We thought Weston would be on that stuff for several years! The day after they took him off, he lost weight. Over the next week, he was up and down a lot in his weight so they tried to increase his volume but his stool output increased dramatically. As a side note his poo is very watery. So instead of increasing the volume, over the last three or four days, they've been adding a specialized formula to his milk to increase the calories even though he's not up to what's considered "full feeds." The formula is almost all the way broken down so that his intestines can handle it. Besides this special formula, he can't take anything except breast milk because his body wouldn't be able to break it down with the small amount of intestine he has. So he gained weight the last two nights and if he gains weight tonight he COMES HOME TOMORROW!!!!! I've been a little giddy all morning.
So Weston will have weight checks every week for the next two months with the pediatrician. They'll also draw blood tests for the next four weeks that need to be sent up to Primary's. In a month he'll have appointments with both the GI doctor and the surgery team. But, until then I am VERY much looking forward to tomorrow!
Showing posts with label NICU. Show all posts
Showing posts with label NICU. Show all posts
Tuesday, May 17, 2011
Saturday, April 23, 2011
Weston's Surgery
I just wanted to add a quick update about Weston's surgery.
It was scheduled for 10:30 on Thursday. Ryan had taken the day off and we were planning to be there about an hour before. They called us at about eight that morning and said they were going to take him down to surgery sooner than expected. We weren't able to get up there before so I think they took him in around nine or nine fifteen. We left Carter with Ryan's parents (thank you!!!) and waited in the surgery waiting room until about 11. Dr. Black came and found us and told us the surgery had gone very well.
He told us he had connected the bowel by putting in about one hundred stitches. He measured the length of his bowel and it had grown from 27 cm to 45 cm and at least 40 cm is required for him to be off TPN. His small intestines are about the size of my pointer finger. Dr. Black said he was very optimistic about Weston's recovery and said he may come home as soon as mid May. So we've witnessed another miracle with Weston's bowel growth. The Lord never ceases to amaze me!
Weston's intestines should start functioning again 5-10 days after the surgery which is when they'll start feeding him and he'll be up to full feeds 10-20 days after that. I'm not sure how everything will go with continuous feeds versus oral feeds and bottle feeds versus breastfeeding but we're just along for the ride! So much of it depends on him.
I was able to go see him again last night. He is a little swollen but not as bad as last time. After the first surgery he looked like a completely different baby! He has had very little pain medication. I was there at nine last night and he hadn't had any since 6 am yesterday. He is still really sleepy from the anesthesia but was still fairly responsive when I touched him. I did his cares (took his temperature, changed his diaper, measured his belly, and gave him a light sponge bath). We had a little incident when we tried to weigh him. The respiratory therapist came in to help move him because he's still on a ventilator. We had to try several times because of all the chords and on the third time he started choking. Poor baby! So we put him back, let him recover, and didn't worry about it for last night. He weighed 7 lb 8 oz the night before his surgery.
It was scheduled for 10:30 on Thursday. Ryan had taken the day off and we were planning to be there about an hour before. They called us at about eight that morning and said they were going to take him down to surgery sooner than expected. We weren't able to get up there before so I think they took him in around nine or nine fifteen. We left Carter with Ryan's parents (thank you!!!) and waited in the surgery waiting room until about 11. Dr. Black came and found us and told us the surgery had gone very well.
He told us he had connected the bowel by putting in about one hundred stitches. He measured the length of his bowel and it had grown from 27 cm to 45 cm and at least 40 cm is required for him to be off TPN. His small intestines are about the size of my pointer finger. Dr. Black said he was very optimistic about Weston's recovery and said he may come home as soon as mid May. So we've witnessed another miracle with Weston's bowel growth. The Lord never ceases to amaze me!
Weston's intestines should start functioning again 5-10 days after the surgery which is when they'll start feeding him and he'll be up to full feeds 10-20 days after that. I'm not sure how everything will go with continuous feeds versus oral feeds and bottle feeds versus breastfeeding but we're just along for the ride! So much of it depends on him.
I was able to go see him again last night. He is a little swollen but not as bad as last time. After the first surgery he looked like a completely different baby! He has had very little pain medication. I was there at nine last night and he hadn't had any since 6 am yesterday. He is still really sleepy from the anesthesia but was still fairly responsive when I touched him. I did his cares (took his temperature, changed his diaper, measured his belly, and gave him a light sponge bath). We had a little incident when we tried to weigh him. The respiratory therapist came in to help move him because he's still on a ventilator. We had to try several times because of all the chords and on the third time he started choking. Poor baby! So we put him back, let him recover, and didn't worry about it for last night. He weighed 7 lb 8 oz the night before his surgery.
Tuesday, April 19, 2011
One home last week, one in surgery this week
About two weeks ago Ryan's Grandpa Roth died pretty suddenly. He had been diagnosed about a week before with stage three leukemia and was being treated in the hospital. I didn't know him as well as I would have liked but I'll always remember he offered to come and teach me how to tat when I was on bed rest. I had a really hard time deciding whether I should go to the funeral, which was on Friday. The nurses and lactation consultants at Carter's hospital said they didn't think it would affect his breastfeeding too much for me to be gone and I knew that other than that, the boys didn't technically need me and I knew they would be well taken care of, so I decided to go. I'm glad that there were no problems while we were gone and I had a really good time out in California. I was able to meet a lot of Diane's family that I've never met and am so happy I was able to go.
Carter transitioned well to his crib and kept getting better and better at eating so we got to bring him home on the tenth. The first night was rough because he wouldn't eat! He got so hungry and frustrated that he wouldn't breastfeed. After a full day of him eating about half of his daily minimum, I figured out that the last good feeding he had was from a bottle that was unfortified. We are supposed to feed him bottles every other time with additional calories added to the milk. So, for some reason, he didn't like the fortifier we were using so I fed him with a bottle of just breast milk and he ate like a pig! Thank goodness we got that figured out! The last week has been good. The house wasn't near ready because we had been out of town for the funeral so I worked on that for a while. I also helped Ryan put together the dresser and crib so things are starting to settle down with that. He has been having a hard time breastfeeding and has started to bite :( He likes to throw tantrums and refuses to calm down but hopefully as he gets bigger it'll get easier for both of us. In terms of sleeping, as long as he eats like he should, he sleeps wonderfully besides lots of grunting. He seems to have quite a bit of gas and turns really red when he's working on something.
Carter is still on oxygen but on the smallest setting for the tank. He really only needs it when he eats because he forgets to breath but we leave it on him all the time. He's getting better too, so hopefully we won't have to deal with it for long. I took him to his eye appointment down in Riverton last week and his eyes are fully developed so we no longer have to have his oxygen monitor beeping when he isn't breathing AND when he's breathing too well. That thing sure is annoying in the middle of the night when there's nothing you can do to MAKE IT STOP!
Ryan has been doing an awesome job with Carter. It sure is fun to see him being a daddy. A while ago Carter wouldn't calm down in the middle of the night so Ryan took him out to the living room. I wake up to Ryan's alarm for work and go out to find Carter in the back crevice of the couch and Ryan on the outside curled around him. What a good dad :) Too bad I didn't take a picture!
Weston had a contrast enema done yesterday to make sure he had no strictures in his bowel so there would be no surprises for the surgeons on Thursday. They put some kind of fluid into his intestines that shows up on an x ray. It's pretty amazing what they can do! A few days ago, Weston weighed 7 lb 3 oz. After I had Carter home for a few days (he now weighs 5 lb 4 oz) I was finally able to go up and see Weston and he was an absolute giant compared to Carter!
Weston's surgery will be fairly similar to the last one in terms of recovery. They will have to put him on a ventilator because he'll be so sedated which he'll probably have a harder time with because he's been used to the freedom of breathing on his own. They'll keep him on pain and anxiety medications and eventually wean him off them. They'll start feeding him 7-10 days after the surgery and slowly work up to as much food as he can handle. Ryan took the day off and Diane is going to watch Carter so we can be up there with Weston. I'm glad it's finally time for his surgery even though it will set him back a lot for a while. I want that boy to come home!!!
I also wanted to mention that my grandparents came up from St. George for a few days so they could come and see the boys. My grandma came up a few weeks after they were born but my grandpa had open heart surgery and wasn't quite ready so they made a special trip before heading to Alaska for the summer. I'm so glad you came, Grandma and Grandpa!
Carter transitioned well to his crib and kept getting better and better at eating so we got to bring him home on the tenth. The first night was rough because he wouldn't eat! He got so hungry and frustrated that he wouldn't breastfeed. After a full day of him eating about half of his daily minimum, I figured out that the last good feeding he had was from a bottle that was unfortified. We are supposed to feed him bottles every other time with additional calories added to the milk. So, for some reason, he didn't like the fortifier we were using so I fed him with a bottle of just breast milk and he ate like a pig! Thank goodness we got that figured out! The last week has been good. The house wasn't near ready because we had been out of town for the funeral so I worked on that for a while. I also helped Ryan put together the dresser and crib so things are starting to settle down with that. He has been having a hard time breastfeeding and has started to bite :( He likes to throw tantrums and refuses to calm down but hopefully as he gets bigger it'll get easier for both of us. In terms of sleeping, as long as he eats like he should, he sleeps wonderfully besides lots of grunting. He seems to have quite a bit of gas and turns really red when he's working on something.
Carter is still on oxygen but on the smallest setting for the tank. He really only needs it when he eats because he forgets to breath but we leave it on him all the time. He's getting better too, so hopefully we won't have to deal with it for long. I took him to his eye appointment down in Riverton last week and his eyes are fully developed so we no longer have to have his oxygen monitor beeping when he isn't breathing AND when he's breathing too well. That thing sure is annoying in the middle of the night when there's nothing you can do to MAKE IT STOP!
Ryan has been doing an awesome job with Carter. It sure is fun to see him being a daddy. A while ago Carter wouldn't calm down in the middle of the night so Ryan took him out to the living room. I wake up to Ryan's alarm for work and go out to find Carter in the back crevice of the couch and Ryan on the outside curled around him. What a good dad :) Too bad I didn't take a picture!
Weston had a contrast enema done yesterday to make sure he had no strictures in his bowel so there would be no surprises for the surgeons on Thursday. They put some kind of fluid into his intestines that shows up on an x ray. It's pretty amazing what they can do! A few days ago, Weston weighed 7 lb 3 oz. After I had Carter home for a few days (he now weighs 5 lb 4 oz) I was finally able to go up and see Weston and he was an absolute giant compared to Carter!
Weston's surgery will be fairly similar to the last one in terms of recovery. They will have to put him on a ventilator because he'll be so sedated which he'll probably have a harder time with because he's been used to the freedom of breathing on his own. They'll keep him on pain and anxiety medications and eventually wean him off them. They'll start feeding him 7-10 days after the surgery and slowly work up to as much food as he can handle. Ryan took the day off and Diane is going to watch Carter so we can be up there with Weston. I'm glad it's finally time for his surgery even though it will set him back a lot for a while. I want that boy to come home!!!
I also wanted to mention that my grandparents came up from St. George for a few days so they could come and see the boys. My grandma came up a few weeks after they were born but my grandpa had open heart surgery and wasn't quite ready so they made a special trip before heading to Alaska for the summer. I'm so glad you came, Grandma and Grandpa!
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| Great Grandma Hanni with Carter |
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| Carter coming home!!!! |
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| Carter likes to be helpful and hold his pacifier in :) |
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| Great Grandpa Hanni with Weston |
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| Weston sleeping as is usual for him! He is a very calm baby. |
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| Though he did get a little upset about his cute neck rolls! |
Monday, March 28, 2011
Feeling so big in a big boy crib
Carter now weighs over four pounds. He's gained over a pound and a half in a month. He's got enough fat on him now to maintain his own temperature so they dressed him and put him in a crib. He's on a fourth a liter flow of about 22% oxygen content and has to work for half of his feedings. The other half go through a tube straight to his stomach. There are a few things that determine when he can come home. He has to be up to full oral feedings, he has to have no apnea for a full week and either has to be off oxygen or his eyes have to be fully developed. If he were to come home on oxygen, it would be 100% oxygen which can damage eyes that are not developed all the way. So because of that, they won't send him home on oxygen at least until next Wednesday when they check his eyes again. If he is off oxygen, he could come home before then.
Today after I was done breastfeeding him, he turned red and let out two huge farts...stinky ones! I asked him if he was a stinky boy. He looked up at me, smiled, and stuck his tongue out. It was just too perfect. I proceeded to change him and holy moley, I don't think a diaper could get any worse. Liquid green vitamin poo...all the way up past his belly button. Yummy.
And below...the many faces of Carter Ryan:
Today after I was done breastfeeding him, he turned red and let out two huge farts...stinky ones! I asked him if he was a stinky boy. He looked up at me, smiled, and stuck his tongue out. It was just too perfect. I proceeded to change him and holy moley, I don't think a diaper could get any worse. Liquid green vitamin poo...all the way up past his belly button. Yummy.
And below...the many faces of Carter Ryan:
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| Big Boy Crib! |
Monday, March 21, 2011
Weston Boy
So Carter is still in an isolette so it's a lot harder to see him and take good pictures. He's also almost constantly swaddled except when we hold him. Weston is in an open warming bed and could move around a lot more. The nurses have also tried dressing him a few times. So here are a few pictures of little Weston boy.
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| Just lounging... |
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| His pajamas that barely go past his knees. He is a loooong boy. Kinda like his daddy :) |
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| Weston decided his day was just way too hard! |
Oh Bills...
I just spent an hour and a half just trying to sort through the bills we've gotten so far. All but two of these sticky notes mean billing problems. I get to deal with all of the phone calling tomorrow, but thank goodness for insurance!!!
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Thursday, March 17, 2011
I thought this would be a post of random things, but they're all about having babies!
So I went on a run a few days ago. I think it was exactly three weeks since my c section. The running part wasn't too hard because I went really slow but I sure could NOT recover. I had to walk home the same distance I ran because I was totally worn out. Guess I should be patient...it has been five months since I worked out.
For those who remember one of my New Year's goals was to weigh less than I did before getting pregnant...that shouldn't be too hard. At my two week appointment I weighed two pounds more than I did before getting pregnant. Now I just can't eat my feelings!! :) Haha and I'm totally eating large amounts of cookie dough right now. Uh oh.
I am really looking forward to taking a picture of my two babies TOGETHER. They miss each other!! They are looking more and more similar every day...Carter is gaining weight and Weston is no longer swollen. Ahh! I miss them when I think about them!
Its gonna be interesting when Carter is home and Weston is still in the hospital. We can't take Carter to see Weston so...we'll see how that works out!
I still don't feel like a mom. Not in the sense that I feel old, but that it's still so weird that I have a baby...two babies! I see moms of babies in the NICU that are older and I think that I can't be a mom! I should feel different or something.
So guess how awesome Ryan is...he's working full time, seeing at least one of his babies every day, and still finishing all of his classes with everything we've had going on. And don't worry...he still has time for March Madness too :) So that equates to pretty dang awesome.
For those who remember one of my New Year's goals was to weigh less than I did before getting pregnant...that shouldn't be too hard. At my two week appointment I weighed two pounds more than I did before getting pregnant. Now I just can't eat my feelings!! :) Haha and I'm totally eating large amounts of cookie dough right now. Uh oh.
I am really looking forward to taking a picture of my two babies TOGETHER. They miss each other!! They are looking more and more similar every day...Carter is gaining weight and Weston is no longer swollen. Ahh! I miss them when I think about them!
Its gonna be interesting when Carter is home and Weston is still in the hospital. We can't take Carter to see Weston so...we'll see how that works out!
I still don't feel like a mom. Not in the sense that I feel old, but that it's still so weird that I have a baby...two babies! I see moms of babies in the NICU that are older and I think that I can't be a mom! I should feel different or something.
So guess how awesome Ryan is...he's working full time, seeing at least one of his babies every day, and still finishing all of his classes with everything we've had going on. And don't worry...he still has time for March Madness too :) So that equates to pretty dang awesome.
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| Carter. They can put him on his stomach because there's no risk of SIDS when they're on constant monitoring. |
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| My mom holding Carter before going to the airport. |
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| Weston |
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| Weston |
Baby Update
Here is another baby update for those interested!
Carter now weighs 3 lbs 6 oz. What a little chunk!! :) He gained 50 grams in one day! He's now eating 28 mL every three hours and having calories added to it to help him gain weight. He is still on some oxygen because sometimes he decides it's a little too much work to breath. That's alright though. Several days ago I started non-nutritive breastfeeding with him. This just means he practices latching on for a while once a day. Generally, preemies have a hard time coordinating their breathing, sucking and swallowing all at the same time. He's doing a good job so far and a few days ago they let him try without pumping before. Today he got a full feeding from me! My milk supply kind of overwhelms him sometimes. So far he's been pretty alert so it's been a good bonding time for me. I'm SO glad he's catching on so quickly because I know so many babies have a hard time!
Weston started eating about a ago. He started with 1 mL every hour and yesterday was up to 4 mL. The milk that he eats comes out his first hole (it's yellow and liquidy) and they reinsert it into the second hole. So far they're happy with how much he's absorbing. He gets about 1/3 of his nutrition from milk and the rest from TPN. He is now just over his birth weight so hopefully he'll start gaining weight quickly now because Carter is catching up! Weston is close to being weaned completely off his pain and sedation medications and only gets them every twelve hours. He's been more fussy recently because he's a little addicted but his little cry is pretty darn cute. Hopefully I can get a video soon but his bottom lip absolutely quivers and I have a hard time not laughing at him! In about six weeks he'll get the surgery to reconnect the two parts of his intestines.
Carter now weighs 3 lbs 6 oz. What a little chunk!! :) He gained 50 grams in one day! He's now eating 28 mL every three hours and having calories added to it to help him gain weight. He is still on some oxygen because sometimes he decides it's a little too much work to breath. That's alright though. Several days ago I started non-nutritive breastfeeding with him. This just means he practices latching on for a while once a day. Generally, preemies have a hard time coordinating their breathing, sucking and swallowing all at the same time. He's doing a good job so far and a few days ago they let him try without pumping before. Today he got a full feeding from me! My milk supply kind of overwhelms him sometimes. So far he's been pretty alert so it's been a good bonding time for me. I'm SO glad he's catching on so quickly because I know so many babies have a hard time!
Weston started eating about a ago. He started with 1 mL every hour and yesterday was up to 4 mL. The milk that he eats comes out his first hole (it's yellow and liquidy) and they reinsert it into the second hole. So far they're happy with how much he's absorbing. He gets about 1/3 of his nutrition from milk and the rest from TPN. He is now just over his birth weight so hopefully he'll start gaining weight quickly now because Carter is catching up! Weston is close to being weaned completely off his pain and sedation medications and only gets them every twelve hours. He's been more fussy recently because he's a little addicted but his little cry is pretty darn cute. Hopefully I can get a video soon but his bottom lip absolutely quivers and I have a hard time not laughing at him! In about six weeks he'll get the surgery to reconnect the two parts of his intestines.
Thursday, March 3, 2011
Progress
Both our boys have been doing really well since I last posted. It's amazing how busy I've felt over the past few days just trying to visit them each once a day mixed in with all the pumping I've been doing. I have been getting WAY too much milk which is definitely a good problem to have. At the same time, it's been pretty difficult to be able to pump often enough that I don't hurt. I'm working on decreasing my supply so let's hope it works soon!
Carter's feedings started up again a few days ago. He has been tolerating them well so they've increased them from 3 mL every three hours to 8 mL. As long as his body digests what they give him, they'll increase that amount each day. He is completely off all assistance for breathing so he no longer has an oxygen tube up his nose. That's better for pictures :) Even in the first few days when both boys were at IMC, Carter would flail and stretch around a lot. He did that in my belly too!
Weston is doing so well, especially considering he had such major surgery five days ago and only weighs four pounds! The only blood products he's received in several days is a dose of platelets after he got his PICC line. So that means no blood and no plasma. They have been able to wean him off the ventilator enough that with another baby they could take him off. Because Weston is so sedated for the pain he is in, they worry if he were to be taken off, he wouldn't breath on his own. They're working to lower his sedatives so they can take him off the ventilator and just give him a flow of oxygen. His cultures came back negative several days ago for the infection. His head ultrasound remained about the same with the hemorrhage in his brain so we hope that's better when they check again in about a week. They've also taken him off the bilirubin lights for jaundice. Because they are lowering the sedatives, he has been more responsive the last few times we've seen him. He tries really hard to open his eyes but it's extra hard because his eyes are still swollen from the surgery.
The two of them definitely look alike. It was harder to see the first few days but I was holding Carter last night and his face was squished some. It made him look like he had chubbier cheeks and look much more like Weston. Both boys have very long fingers, toes, and arms and Carter's hands look especially huge compared to his skinny arms. My dad joked with Ryan last night that they already had him palming a basketball.
Carter's feedings started up again a few days ago. He has been tolerating them well so they've increased them from 3 mL every three hours to 8 mL. As long as his body digests what they give him, they'll increase that amount each day. He is completely off all assistance for breathing so he no longer has an oxygen tube up his nose. That's better for pictures :) Even in the first few days when both boys were at IMC, Carter would flail and stretch around a lot. He did that in my belly too!
Weston is doing so well, especially considering he had such major surgery five days ago and only weighs four pounds! The only blood products he's received in several days is a dose of platelets after he got his PICC line. So that means no blood and no plasma. They have been able to wean him off the ventilator enough that with another baby they could take him off. Because Weston is so sedated for the pain he is in, they worry if he were to be taken off, he wouldn't breath on his own. They're working to lower his sedatives so they can take him off the ventilator and just give him a flow of oxygen. His cultures came back negative several days ago for the infection. His head ultrasound remained about the same with the hemorrhage in his brain so we hope that's better when they check again in about a week. They've also taken him off the bilirubin lights for jaundice. Because they are lowering the sedatives, he has been more responsive the last few times we've seen him. He tries really hard to open his eyes but it's extra hard because his eyes are still swollen from the surgery.
The two of them definitely look alike. It was harder to see the first few days but I was holding Carter last night and his face was squished some. It made him look like he had chubbier cheeks and look much more like Weston. Both boys have very long fingers, toes, and arms and Carter's hands look especially huge compared to his skinny arms. My dad joked with Ryan last night that they already had him palming a basketball.
Tuesday, March 1, 2011
Witnessing Miracles
At thirteen weeks into my pregnancy, they told us I was bleeding so heavily that if it continued bleeding, it wasn't safe to continue the pregnancy. At fifteen weeks, my babies were diagnosed with twin to twin transfusion syndrome. If nothing were to be done, there was a 90-95% chance my boys wouldn't survive. At nineteen weeks, Weston's already weak amniotic sack was punctured in order to perform the surgery that could save their lives. My water didn't break that day and both babies still had heartbeats 24 hours after surgery. At thirty weeks my water broke and I delivered four days later. At four days old, Weston had intestinal surgery for necrotizing enterocolitis and was 27 cm away from being pulled off life support. This was his second life-saving surgery in the seven months of his life.
What is it about these tiny babies that their lives have been preserved by the Lord so many times? I feel blessed to be their mother and to get to be a part of their lives each day.
What is it about these tiny babies that their lives have been preserved by the Lord so many times? I feel blessed to be their mother and to get to be a part of their lives each day.
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| Carter |
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| Carter |
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| Weston after surgery. You can see the two holes on either side of his abdomen. |
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| Weston on his ride up to Primary Children's |
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| Carter |
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| Weston |
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| Weston |
Sunday, February 27, 2011
Weston
Yesterday morning on Saturday the NICU called us in our room upstairs and told us that Weston's x rays were looking about the same but they were concerned because he had a large loop of air in his intestines that wasn't passing through. His stools were also hard. They decided to get him up to Primary Children's which has a level 4 NICU instead of a level 3 at IMC. The transportation team came down from Primary's and they decided to take him by ambulance rather than by helicopter because of the snow. He was transported up to Primary's and I was quickly discharged from the hospital so we could follow soon after.
We got up there and they basically said he was sick enough that they needed to go in and find out why. They didn't know what they would find and the surgery could have lasted anywhere from an hour to over three.
Here is an e-mail Ryan wrote to our family on Saturday (2/26/11).
So now he basically has about 27 cm of small intestine, separated into 2 parts(most babies are born with 140 cm). As he grows the intestine will hopefully grow and keep up and eventually (most likely 2-3 months) they'll be able to fuse the small intestine back together. This doesn't mean he'll be able to eat normally after that.
For now they will feed him through an IV. In a few days they'll be able to put a "pick line" in him which will feed into his chest right near his heart. This tube will allow them to feed him more dense nutrients and give him medications and other things. They will feed him TPN, which is just liquid food that has everything he needs. His intestine will still have problems for a few years, maybe 3-5 years. We can't know for sure right now. It will take that much time for his intestine to grow enough to be able to digest the amount of food he's eating. This means he will be fed TPN for the first few years of his life.
So right now he has two holes in his stomach, each one is the end of the two small intestine endings inside. Over time they'll be able to remove spit and other things from the top hole that comes out. Eventually they might be able to feed him, it will come out the first hole and they'll transfer it down to the second hole so it can pass through the colon and large intestine. How awesome is that? This will be done just to keep his intestines healthy with things passing through them.
He still has an infection right now. We learned that he has e-coli in his blood. That's probably what started the whole chain of events. This will most likely get out of him in the next few days with antibiotics.
Long term Dr. Black said there's no reason to believe he won't be able to go to school when the time comes and run around and play like normal. He should be totally fine after a few years. So there is light at the end of the tunnel already, but we have a million obstacles to hurdle before that!
He also has a little bit of blood in the ventricles of his head. He's at a stage 2 (of 4) in that. They'll watch this closely, but as long as he stays stable post-surgery the risk of it progressing should go down. Stage 4 is bad, right now its ok and can completely correct itself. No blood in the brain yet.
Oh, by the way, this whole intestine problem is called "short gut syndrome". I did not make that up, that's actually what they call it :)
Ok, this email is long and a little scatter-brained. Just trying to remember all I know. That's it for now. We still trust that the Lord will continue to bless us. He already has with this. We know this is the Lord's will for us. I joked with Sarah that we're making up for our relatively easy lives up to this point! We've been so blessed and this will be a great challenge, but a great opportunity to learn and be humbled. We love you all and are thankful for the continued prayers.
-Ryan and Sarah
P.S. Carter is still fine. We went and saw him and he's as well as can be. They will still monitor him closely for any infection, but all is well.
Today we picked up my mom from the airport (thank goodness she is here) and went and saw Weston. He is doing as well as can be expected. His clotting factors may be getting a little better and they were able to wean him off the ventilator some throughout the night.
We were also able to go to a sacrament meeting at the hospital. We weren't able to go to church last week and it was amazing how good it felt to be back. We feel so blessed and thankful that even though our little boy will have a very rough first few years of life, he can be healthy in the long run. Thank you for all the prayers.
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