Four Major Surgeries...Make that five.......

1. Interrupted Aortic Arch and VSD Repair
Kaylee had her first major surgery about a week after being born almost 6 weeks premature. I am not even sure I can recall everything that happened that day due to being completely out of it. All I can remember is getting to kind of hold her before they took her down,telling my husband that I cannot lose her, being a wreck while waiting, having the dr tell me everything went as planned, and seeing her hooked up to more machines than I cared to count in her room in the cardiac wing. Her surgery took about 5 hours and it most certainly felt longer. I cannot believe he was able to take such a small piece of an already really small baby and patch her VSD or hole in the heart and connect her aortic arch to where it was supposed to go. How do you thank someone for saving your daughter's life? I have no idea but I started with a thank you and then a follow up card of her after we left the hospital. This surgery began our prolonged stay at the hospital.

2. Pacemaker
Kaylee received her pacemaker about a month after her heart surgery. The doctors were hoping her electrical system would come back and we wouldn't need it, but unfortunately we never saw any improvement. That surgery was not as nerve racking because they had already put the lines in her heart, he just had to go in and make the patch in her stomach to put the pacemaker in. They decided to put it down in her left abdomen area because of how small she was. She didn't have enough room up by her heart to put one in up there. I admit at first I was a little creeped out when I saw it because you could clearly tell she had something there. I didn't want to touch it in fear of it hurting her, but the doctors assured me that as she got bigger it would get better and you would be able to tell less and less. 8 months later it's just another thing and I hardly notice it anymore. We will have checkups on it for the rest of her life and it is predicted that we will have to have it switched out between 3 and 4 years old. Kids use more battery power than adults, so as she gets older she will be able to go longer periods of time between needing to have it switched out.

3 & 5. G-Tube/Button
The next surgery Kaylee was to receive was a G-Tube. She was not ready to start feeding by mouth, so they wanted to do this in order to get her on the track to going home. They went in to place it at the same time as the ENT was looking at her lungs. Bad idea!!!!! The hole For the tube ended up being cut too big which would cause us more problems than we realized at the time. The G-Tube itself was a pain because it kept getting clogged and then at one point it completely came out. Yes that's right me and the nurse found her G-Tube that is supposed to be stitched in out of her one day. At that point they called another surgeon in to place the actual G-Tube Button in place of the tube. That was a step in the right direction, but wasn't the last. The hole was still too big and was leaking a little here and there but wasn't unbearable or even noticeable sometimes. So we continued on with the progress to go home. Now 7 months later we are back in the hospital to have it redone. The site got too bad in which her stomach lining was coming out of the hole and we were having to change her clothes after every feeding because she would leak and drench her. It was just too much to deal with, so they let the other hole close and created a brand new one. The hole currently looks WAY better than the other one ever did, but ask me in a month if I still am happy with it.

4. Nissen
After getting the G-Tube we thought we were for sure on the fast track home, but Kaylee had another idea in mind. We knew she had reflux and they say a lot of long time hospital babies develop it, but it took a turn for the worse. She started having episodes where she would reflux and start freaking out to the point of not breathing and turning blue. It was only happening every so often and then it progressed to once a day and then to multiple times a day. I remember the first time I ever saw it happen and I literally thought I was watching my child die. Her stats dropped so fast all I could do was scream for help. It eventually got to the point where the doctors said they feel the Nissen needed to be done in order to prevent the worst from happening. A Nissen basically is when they go in and put a tie around the top portion of the stomach to prevent things from going up the throat. That means no throwing up or burping. We were scared because that meant another surgery, but we knew it needed to be done so it was put on the schedule. She did great with the surgery and crazy enough it seemed to solve all of our problems. We were able to go home 2-3 weeks later.