When talk began about Kaylee coming home it was decided that I would spend an entire weekend with her in the hospital to learn the ins and outs of care for her (more to what I already knew from watching). They wanted to make sure I could handle the oxygen, G-Tube Button, Meds, and everything else that came with my child's condition.
I worked hand in hand with the nurse to learn how to handle certain situations if they were to arise along with situations that were guaranteed to happen. She was amazing and I learned so many tips and tricks about staying organized with all of her supplies. There are so many little supplies such as syringes for meds, tape, and gauze to name a few. One great idea she gave me was to take a see through shoe organizer that hangs over the door and put all the little supplies in each pocket and label it. It has saved me so much time in trying to find things.
We were originally supposed to receive home care and the doctors at the hospital sent us home thinking we were going to get some extra help. Well a week or so after we got home we found out insurance was not going to cover it because her case was not that severe at that time. It was fine really because we were unsure about having a random person in our home and Kaylee really did not have that much need.
When we first walked in to the wing to get Kaylee to go home we saw a sign that said lunch celebration for Kaylee and Gavin, which was another baby that had been in there a long time, going home. That put a smile on my face. We started loading up the cart and the nurse was giving us more and more stuff just to take. Never turn down free stuff from the hospital! We took some pictures with the staff because they had literally become part of our family and we love them dearly. As we were loading Kaylee into the car seat the staff decided to present her with a poster board with a picture of one of The Incredibles signed by most of the staff giving words of encouragement to her. It was beautiful and almost made me cry, but did put a smile on my face. They also gave her a cute blanket to go over her in the carrier. Grandma Kathy was filming everything as we got ready and left. It felt so surreal that we were finally taking our little girl home, but also sad because she really did not know what home was. To her home was the room she lived in at the hospital. We loaded her up and I got to experience my first of many backseat car rides with Kaylee.
Once we got home we just kinda watched her swing and sleep. You work so hard to get her home and then once you get it it's like what do we do next. I wouldn't have my daughter any where else but home. She loves it now but was most certainly a skeptic at first. It is such a relief to have your daughter in the comfort of her home and able to just lay with her, or hold her, or playing just to see her smile. Most people don't realize how lucky they are to have that time with their children whenever they want.
My Family
Saturday, October 15, 2011
Friday, October 14, 2011
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.
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.
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