(The mitral valve is located in the heart between
the left atrium and the left ventrical. The mitral valve prevents blood
from leaking backwards into the two upper chambers). The surgery went very well and he is healing nicely. Very different from our first one! He was in the PCICU for one night and moved late the second night.
We actually got a big corner room which we were happy about. It had a smaller than a twin fold out bed which we did not have last time and were very very very thankful for. It was better than the air mattress we brought.
  When Jacob felt better Caleb got in his bed and played with him. We got jacob to sleep many times by rolling him around (above) in a red wagon. 
Caleb thought he was on vacation. We had friends that visited and both sets of grandparents to play with. He got to go to Chuck E Cheese and the movies.
Hopefully I will get a chance to write more soon!  |
Showing posts with label surgery. Show all posts
Showing posts with label surgery. Show all posts
Wednesday, August 07, 2013
Second Heart Surgery
Jacob had his second heart surgery on Tuesday the 23rd at Duke on his mitral valve
Tuesday, July 17, 2012
surgery
been meaning to write about it for some time now but I just wanna cry when I do so I put it off....
We went to the children's hospital early in the morning the day of J's heart surgery. We waited a little while before they called us back to talk to the doctors, sign papers and to get him ready. He was too tiny for their smallest hospital gown. When we left, I just wanted it to be over already.
They called us when they started and every couple hours after that to update us on their progress. Everything was going smoothly. I got a call that said they fixed the hole and we would get a call when they were closing him up.
Sometime after that a lady came to get me and took me into a room and some doctor I had never met came out and said who knows what. I just remember wanting to yell is he ok? Is he still alive? I think they said he was bleeding and they had to find it and fix it and he was still on the ECMO.
I don't remember how much time went by but they called Bill and told him that they found the place it was bleeding from and were going to work on it. I just remember crying and praying and waiting. Thankfully we had parents and godparents and pastor Brandon there to keep our minds busy.
We didn't see him that night and I really don't remember how long it was until we saw him again but he was in the PCICU for awhile. He had one nurse and the ECMO had it's own nurse. Next to J was a little boy born with half a heart. There were all sorts of different heart issues.
He was on the ECMO for a week I think with his chest still open and because of that he was heavily sedated and on plenty of medicines. But after that first week it got a little easier. I couldn't look too closely at his chest... they had it covered up.
After what seemed like forever, J was moved to the floor down the hall. He had to eat normally before they would release him. That was awful. After awhile the hospital was just getting to us too much and we weren't resting because of all the stupid beeps. Eventually we said we will take him with the feeding tube but we've just gotta get out of this place!
Once we got home we were still exhausted but at least we were home and there were no beeps. He was on the feeding tube for a couple more weeks I think. But now he's doing great and gaining weight and is a very happy baby.
We went to the children's hospital early in the morning the day of J's heart surgery. We waited a little while before they called us back to talk to the doctors, sign papers and to get him ready. He was too tiny for their smallest hospital gown. When we left, I just wanted it to be over already.
They called us when they started and every couple hours after that to update us on their progress. Everything was going smoothly. I got a call that said they fixed the hole and we would get a call when they were closing him up.
Sometime after that a lady came to get me and took me into a room and some doctor I had never met came out and said who knows what. I just remember wanting to yell is he ok? Is he still alive? I think they said he was bleeding and they had to find it and fix it and he was still on the ECMO.
I don't remember how much time went by but they called Bill and told him that they found the place it was bleeding from and were going to work on it. I just remember crying and praying and waiting. Thankfully we had parents and godparents and pastor Brandon there to keep our minds busy.
We didn't see him that night and I really don't remember how long it was until we saw him again but he was in the PCICU for awhile. He had one nurse and the ECMO had it's own nurse. Next to J was a little boy born with half a heart. There were all sorts of different heart issues.
He was on the ECMO for a week I think with his chest still open and because of that he was heavily sedated and on plenty of medicines. But after that first week it got a little easier. I couldn't look too closely at his chest... they had it covered up.
After what seemed like forever, J was moved to the floor down the hall. He had to eat normally before they would release him. That was awful. After awhile the hospital was just getting to us too much and we weren't resting because of all the stupid beeps. Eventually we said we will take him with the feeding tube but we've just gotta get out of this place!
Once we got home we were still exhausted but at least we were home and there were no beeps. He was on the feeding tube for a couple more weeks I think. But now he's doing great and gaining weight and is a very happy baby.
Wednesday, May 02, 2012
Birth Story
I've been meaning to post this for awhile but...
I'm sorry all these posts aren't really in order.
At a visit to my obgyn I was getting my blood drawn for my thyroid test and she asked if I wanted a routine blood test. I said sure why not. When the results came in the doctor called. I remember thinking it was odd that she called me herself. She told me that I had an elevated risk for Down syndrome and that if I wanted to I could go to a hospital that had more advanced equipment and get an amniocentesis and a better ultrasound. I asked if it was necessary and she said no we can watch it here and if we see anything strange you can go to the other hospital. At the ultrasound they found soft markers for DS. They couldn't find a nasal bone and there were spots on his brain. I had an ultrasound monthy from then out. The ultrasound tech said that the heart looked fine. The next one showed a tiny nasal bone. The doctor said that they couldn't say for sure if he had it or not... nothing was absolutely certain. A friend said that a friend of hers had a baby with soft markers that came out "normal." Somehow I knew that he would have DS. Later on I had extra amniotic fluid but not enough to be too worrisome. It eventually resolved itself. The last few months we got the news that baby's femurs were shorter which they said was another marker. Also the baby's growth was in the 25th percentile then the next month the 20th. The Dr said that if the growth was less than 15th percentile then there was probably something wrong with the placenta and we would have to induce. At 37 weeks his growth rate was less than 15th percentile so we were off to the hospital. The Dr. wanted to take it slowly to make sure baby's lungs would be developed. When I got checked in they started pitocin to do a stress test. The heart rate was great and all the numbers were "beautiful" despite the placenta being "ugly." (I love my doctor's descriptive words :-) )After being assured that baby would make it through birth okay they turned off the pitocin for the night. A friend came over and they let me eat :) I didn't sleep much that night! The pitocin started early the next morning and after too many awful contractions my beautiful baby was born at 13:33. As it turned out the cord was short and not enough was getting to him. Indeed he did have Downs syndrome as you can tell by his eyes and ears. However he does seem to have fairly good muscle tone. They didn't think he was breathing well enough so they put him on oxygen. They also did tests to find that he had a heart murmer and would have to take an ambulance ride to the nearest nicu. He stayed in intensive care for about 10 days where he got heart tests, antibiotics and plenty of blood tests. The doctors determined that he had an atrioventricular canal defect which will need to be operated on at about 4 or 5 months. While there we saw more doctors than we had in years including a geneticist who confirmed the diagnosis and told us it was not the genetic type of DS. He is now doing very well. He has regular pediatric and cardiology visits and the doctors are pleased with his progress.
At a visit to my obgyn I was getting my blood drawn for my thyroid test and she asked if I wanted a routine blood test. I said sure why not. When the results came in the doctor called. I remember thinking it was odd that she called me herself. She told me that I had an elevated risk for Down syndrome and that if I wanted to I could go to a hospital that had more advanced equipment and get an amniocentesis and a better ultrasound. I asked if it was necessary and she said no we can watch it here and if we see anything strange you can go to the other hospital. At the ultrasound they found soft markers for DS. They couldn't find a nasal bone and there were spots on his brain. I had an ultrasound monthy from then out. The ultrasound tech said that the heart looked fine. The next one showed a tiny nasal bone. The doctor said that they couldn't say for sure if he had it or not... nothing was absolutely certain. A friend said that a friend of hers had a baby with soft markers that came out "normal." Somehow I knew that he would have DS. Later on I had extra amniotic fluid but not enough to be too worrisome. It eventually resolved itself. The last few months we got the news that baby's femurs were shorter which they said was another marker. Also the baby's growth was in the 25th percentile then the next month the 20th. The Dr said that if the growth was less than 15th percentile then there was probably something wrong with the placenta and we would have to induce. At 37 weeks his growth rate was less than 15th percentile so we were off to the hospital. The Dr. wanted to take it slowly to make sure baby's lungs would be developed. When I got checked in they started pitocin to do a stress test. The heart rate was great and all the numbers were "beautiful" despite the placenta being "ugly." (I love my doctor's descriptive words :-) )After being assured that baby would make it through birth okay they turned off the pitocin for the night. A friend came over and they let me eat :) I didn't sleep much that night! The pitocin started early the next morning and after too many awful contractions my beautiful baby was born at 13:33. As it turned out the cord was short and not enough was getting to him. Indeed he did have Downs syndrome as you can tell by his eyes and ears. However he does seem to have fairly good muscle tone. They didn't think he was breathing well enough so they put him on oxygen. They also did tests to find that he had a heart murmer and would have to take an ambulance ride to the nearest nicu. He stayed in intensive care for about 10 days where he got heart tests, antibiotics and plenty of blood tests. The doctors determined that he had an atrioventricular canal defect which will need to be operated on at about 4 or 5 months. While there we saw more doctors than we had in years including a geneticist who confirmed the diagnosis and told us it was not the genetic type of DS. He is now doing very well. He has regular pediatric and cardiology visits and the doctors are pleased with his progress.
Wednesday, April 04, 2012
Surgery part 2 -
Hello :-) Here is a picture, a really bad picture of the hospital room.... but the cell phone was the only camera I had. Before we left we wondered what the hospital room that J would be in would look like and how many would fit in it. Well as you can see there was enough room for one twin airbed which we got from target for $40.
If you will be in the position we were, please get a hotel room if at all possible! We switched off because we got no sleep while in the hospital room. There was always a nurse or an assistant coming in every hour or two to check vitals or give medicine. There are also beeps beeps and more beeps....... ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh
We didn't know this until a couple days before we left but there are volunteers who come and sit with the kids so the parents can go out for a little while. This was very nice even if we only went to the cafeteria and took a walk.
Hello :-) Here is a picture, a really bad picture of the hospital room.... but the cell phone was the only camera I had. Before we left we wondered what the hospital room that J would be in would look like and how many would fit in it. Well as you can see there was enough room for one twin airbed which we got from target for $40.
We didn't know this until a couple days before we left but there are volunteers who come and sit with the kids so the parents can go out for a little while. This was very nice even if we only went to the cafeteria and took a walk.
Tuesday, March 27, 2012
Yay it's spring!! We've been waiting for Spring for a loooooong time!!! We got home from Duke just in time to see my favorite tree bloom :-D I've never been so happy to see these flowers!
Big Brother C was very very happy we were all home together :-) J still had his feeding tube because he wasn't feeling well enough to eat all by himself. But we had to get away from the hospital!.
Some flowers that C and Mommy planted together,
Now J is feeling more like himself and we see his big happy smile.
Big Brother C was very very happy we were all home together :-) J still had his feeding tube because he wasn't feeling well enough to eat all by himself. But we had to get away from the hospital!.
Some flowers that C and Mommy planted together,
Now J is feeling more like himself and we see his big happy smile.
Friday, March 16, 2012
heart surgery.....first post
Hola!
We got home from Duke almost a week ago. Boy, we are GLAD to be home. I've never been so glad to be sitting on my couch watching tv. lol. Before we left we asked as many people as we could find about their experiences so we could be as prepared as possible. While I don't think anything really prepares you, it did help to talk to other parents. Here is something we typed up to maybe help someone.....
Tips for parents going to Duke hospital
1. Buy a single/twin air bed. Not a thin camping air mattress. We found one for under $40 at target. (the people at the hospital thought it was such a great idea... guess no one brings air mattresses to the hospital?) 2. Before coming find ways to comfort your child which do not require holding him/her. We were surprised how well pats on his bottom worked to comfort him when we could not rock him. Ask about “chest PT” it seems strange, but our little guy was comforted by it.
3. Buy pack of 10 parking passes for $25 at gift shop.
4. Ask for mobile and bouncy chair/swing ASAP. Have them ready before needed.
Stuff that came in handy:
Dish soap
Baggies
Sharpie
Pen/notebook
Clothes-some warm more than you think you’ll need if possible. Something to occupy your mind Baby clothes that open in the front (not a typical onesie) No baby pants with feet (things will need to connect to feet like IV and Oxygen sensor…blood pressure might be taken from legs)
Baby socks
Pillows
hope to post more soon :-)
Tips for parents going to Duke hospital
1. Buy a single/twin air bed. Not a thin camping air mattress. We found one for under $40 at target. (the people at the hospital thought it was such a great idea... guess no one brings air mattresses to the hospital?) 2. Before coming find ways to comfort your child which do not require holding him/her. We were surprised how well pats on his bottom worked to comfort him when we could not rock him. Ask about “chest PT” it seems strange, but our little guy was comforted by it.
3. Buy pack of 10 parking passes for $25 at gift shop.
4. Ask for mobile and bouncy chair/swing ASAP. Have them ready before needed.
Stuff that came in handy:
Dish soap
Baggies
Sharpie
Pen/notebook
Clothes-some warm more than you think you’ll need if possible. Something to occupy your mind Baby clothes that open in the front (not a typical onesie) No baby pants with feet (things will need to connect to feet like IV and Oxygen sensor…blood pressure might be taken from legs)
Baby socks
Pillows
hope to post more soon :-)
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