CinderellaMama04
Earning My Ears
- Joined
- Apr 22, 2012
- Messages
- 2
I am very new to this board. So I will give our back story and how we have ended up here.
My Daughter Lily, was diagnosed before birth with Congenital Heart Defects. We were told many different things during that time.They told us she had HLHS (half a heart), along with DORV, and a few other things, but that is the two I remember most. It scared the daylights out of me. Things they thought were wrong with her heart, ended up being so very different. No one really understood how complex her heart was until she was born. She came screaming in all her glory on Feb 29th 2008, leap day of all days. Why not have a unique birthday for a special heart little girl. I held her for a minute before she was plucked from my arms and whisked away to the NICU. Within a day we found out how much different of a diagnosis we would be handed. At first they said it wasn't nearly as bad as they anticipated for it to be, that we would only need 1 or 2 surgeries and just continuance watch, but not the 3 surgeries they had thought originally. She ended up being diagnosed with, Aortic Stenosis (Narrowing of the aortic valve), Ventricular Septal Defect (hole in her heart), Coarctation of the Aorta (narrowing of the arch), and Dextrocardia situs inversus (heart on the right side of the body, along with all of her organs being a mirror imagine of ours). Those are what she started out with.
Her first open heart surgery, at just 5 days old, went well, she recovered beautifully. We were home in a months time. They closed a hole in her heart and pulled a vein from her wrist to make the arch in her heart larger. We had slight arrhythmia's, but other then that, she was well.
Then that all came crashing down around us 8 days after she came home. She slept all day, her color was dusky, and she was very clammy. A week later she was in the hospital on a vent, fighting for her life, while they were trying to get O.R time. We almost lost my little girl then, I'll never forget the look on her surgeons face, when they came out of surgery, 12 hours later. He look at my husband and myself and said, "There is nothing left surgically we can do, all we can do it make her comfortable, and if she makes it through this night, it will be by the grace of God."
The next 24 hours were the worst of our life. I won't make you relive them, as I do in my head, but it wasn't pretty. She finally stabilized, but we received the news that our daughters body makes scar tissues incredibly fast. That was what almost killed her. She had what was called Subvalvar Left ventricular outflow tract obstruction, or (LVOTO) It caused one of the surgical sites to grow scar tissue there rapidly, something they said you would expect to see 10 years after a surgery, not a mere 1 month later. They gave us a few months before we would have to have another surgery to try another attempt of fixing the sub aortic valve, before we talked about replacing it. She was to fragile during that second surgery to try to attempt the fix then. Also after her second surgery, her arrhythmia's got worse, which we found out was because her mitrial valve was opening and closing to quickly, not giving that chamber enough time to fill properly before releasing again. So we had to figure out what to do with that. Medication controlled it for a while, but then it became to much and was causing her to many problems.
Her 3rd surgery was to go in and fix her sub aortic valve along with trying to set her hearts rhythm. They did a non-surgical ablation which worked and the arrhythmia's stopped, but the valve was something the surgeon wasn't sure what to do with. When he went in, he found out that her valve hadn't formed right at all, and was missing a leaflet (flaps), valves are supposed to have 3 leaflets in them, looking like a "Y", Lily was missing one and that's what was causing her pressures to rise. Also at that time we found out that due to some of the repairs we had made previously, Lily now had an Artrial Septal Defect (ASD) another hole, but that it was so small, we wouldn't need to worry about it, and it would eventually close on its own. We talked about our options after that surgery. The surgeon felt he bought us at least a year before her next open heart surgery, but he said she was going to have to have surgeries every 3-5 years to replace that valve. We were devastated. We went from originally being diagnosed before birth, with 3 surgeries, now our Lily was looking at surgeries every couple years.
The surgeon was right, he bought us a year between surgeries. We went in for her 4th and Final surgery, granted at that time we didn't know that. It was right before her second birthday. He came to my husband and I right before he went into the O.R, and said he lost nights of sleep over her case and just didn't feel the original decision was right, that putting her through surgeries that often would just be to much for her little heart. It was getting harder to pull her off of bypass with each surgery, so he wanted to try to put a mechanical valve in. They don't make these in children sizes, so we would have to put an adults valve in a 2 year old. He wasn't sure if it was possible, but he said he would try. If it didn't work, then he would put the synthetic valve in and we would just have to go from there. 8 hours later, he came out, with a huge smile on his face. He not only fit a mechanical valve in, but he felt almost positive we would never have to have another surgery again. As long as the valve doesn't get recalled or she doesn't have build up in it, that valve should last us the rest of her life. He puts it down to how big she was, he was able to put the valve in.
She is now a healthy and happy 4 year old. You can hear her heart ticking from across the room. We have to go to the doctor every month to check her blood thinner levels. That was the only draw back to the mechanical valve, she was put on blood thinners to make sure we wouldn't get a blockage in the valve. We have to be careful with what she eats and things she does. She will never be able to do gymnastics, cheer, ice skating, etc. Anything that could cause her to have a hard fall, that could cause internal bleeding. It may be a bitter sweet thing knowing my daughter has to miss out on those things, but to me, I will except that price, knowing my daughter gets to stay here on this earth with me.
We applied for MAW in June of last year and we recently met with her Wish granters. She wished to meet the princesses. Her exact words were, "I want to meet Princess Tangled, but I have to be a princess to meet a princess." She can't wait. We are still waiting for our exact dates, so she still asks me every night, "Are we going tomorrow to meet the Princesses?"
I can't wait to talk with you all. I'm a Disneyland Native, started going when I was 18months, so I can't wait for my kids to experience it. If anyone has any tips or ideas for a Princess while we are there, it would be great help. I haven't been in 8 years, as we no longer live in CA.
Thanks for joining us in this magical experience.
My Daughter Lily, was diagnosed before birth with Congenital Heart Defects. We were told many different things during that time.They told us she had HLHS (half a heart), along with DORV, and a few other things, but that is the two I remember most. It scared the daylights out of me. Things they thought were wrong with her heart, ended up being so very different. No one really understood how complex her heart was until she was born. She came screaming in all her glory on Feb 29th 2008, leap day of all days. Why not have a unique birthday for a special heart little girl. I held her for a minute before she was plucked from my arms and whisked away to the NICU. Within a day we found out how much different of a diagnosis we would be handed. At first they said it wasn't nearly as bad as they anticipated for it to be, that we would only need 1 or 2 surgeries and just continuance watch, but not the 3 surgeries they had thought originally. She ended up being diagnosed with, Aortic Stenosis (Narrowing of the aortic valve), Ventricular Septal Defect (hole in her heart), Coarctation of the Aorta (narrowing of the arch), and Dextrocardia situs inversus (heart on the right side of the body, along with all of her organs being a mirror imagine of ours). Those are what she started out with.
Her first open heart surgery, at just 5 days old, went well, she recovered beautifully. We were home in a months time. They closed a hole in her heart and pulled a vein from her wrist to make the arch in her heart larger. We had slight arrhythmia's, but other then that, she was well.
Then that all came crashing down around us 8 days after she came home. She slept all day, her color was dusky, and she was very clammy. A week later she was in the hospital on a vent, fighting for her life, while they were trying to get O.R time. We almost lost my little girl then, I'll never forget the look on her surgeons face, when they came out of surgery, 12 hours later. He look at my husband and myself and said, "There is nothing left surgically we can do, all we can do it make her comfortable, and if she makes it through this night, it will be by the grace of God."
The next 24 hours were the worst of our life. I won't make you relive them, as I do in my head, but it wasn't pretty. She finally stabilized, but we received the news that our daughters body makes scar tissues incredibly fast. That was what almost killed her. She had what was called Subvalvar Left ventricular outflow tract obstruction, or (LVOTO) It caused one of the surgical sites to grow scar tissue there rapidly, something they said you would expect to see 10 years after a surgery, not a mere 1 month later. They gave us a few months before we would have to have another surgery to try another attempt of fixing the sub aortic valve, before we talked about replacing it. She was to fragile during that second surgery to try to attempt the fix then. Also after her second surgery, her arrhythmia's got worse, which we found out was because her mitrial valve was opening and closing to quickly, not giving that chamber enough time to fill properly before releasing again. So we had to figure out what to do with that. Medication controlled it for a while, but then it became to much and was causing her to many problems.
Her 3rd surgery was to go in and fix her sub aortic valve along with trying to set her hearts rhythm. They did a non-surgical ablation which worked and the arrhythmia's stopped, but the valve was something the surgeon wasn't sure what to do with. When he went in, he found out that her valve hadn't formed right at all, and was missing a leaflet (flaps), valves are supposed to have 3 leaflets in them, looking like a "Y", Lily was missing one and that's what was causing her pressures to rise. Also at that time we found out that due to some of the repairs we had made previously, Lily now had an Artrial Septal Defect (ASD) another hole, but that it was so small, we wouldn't need to worry about it, and it would eventually close on its own. We talked about our options after that surgery. The surgeon felt he bought us at least a year before her next open heart surgery, but he said she was going to have to have surgeries every 3-5 years to replace that valve. We were devastated. We went from originally being diagnosed before birth, with 3 surgeries, now our Lily was looking at surgeries every couple years.
The surgeon was right, he bought us a year between surgeries. We went in for her 4th and Final surgery, granted at that time we didn't know that. It was right before her second birthday. He came to my husband and I right before he went into the O.R, and said he lost nights of sleep over her case and just didn't feel the original decision was right, that putting her through surgeries that often would just be to much for her little heart. It was getting harder to pull her off of bypass with each surgery, so he wanted to try to put a mechanical valve in. They don't make these in children sizes, so we would have to put an adults valve in a 2 year old. He wasn't sure if it was possible, but he said he would try. If it didn't work, then he would put the synthetic valve in and we would just have to go from there. 8 hours later, he came out, with a huge smile on his face. He not only fit a mechanical valve in, but he felt almost positive we would never have to have another surgery again. As long as the valve doesn't get recalled or she doesn't have build up in it, that valve should last us the rest of her life. He puts it down to how big she was, he was able to put the valve in.
She is now a healthy and happy 4 year old. You can hear her heart ticking from across the room. We have to go to the doctor every month to check her blood thinner levels. That was the only draw back to the mechanical valve, she was put on blood thinners to make sure we wouldn't get a blockage in the valve. We have to be careful with what she eats and things she does. She will never be able to do gymnastics, cheer, ice skating, etc. Anything that could cause her to have a hard fall, that could cause internal bleeding. It may be a bitter sweet thing knowing my daughter has to miss out on those things, but to me, I will except that price, knowing my daughter gets to stay here on this earth with me.
We applied for MAW in June of last year and we recently met with her Wish granters. She wished to meet the princesses. Her exact words were, "I want to meet Princess Tangled, but I have to be a princess to meet a princess." She can't wait. We are still waiting for our exact dates, so she still asks me every night, "Are we going tomorrow to meet the Princesses?"
I can't wait to talk with you all. I'm a Disneyland Native, started going when I was 18months, so I can't wait for my kids to experience it. If anyone has any tips or ideas for a Princess while we are there, it would be great help. I haven't been in 8 years, as we no longer live in CA.
Thanks for joining us in this magical experience.
I love hearing about successful heart stories. My daughter was born January 20, 2011, she was diagnosed the next day with Tetralogy of Fallot. She had her surgery at 6 months and has been doing great. I'm glad that MAW allows kids with CHD's to be a part of their program. I'll watch you as you prepare for this wonderful trip. 
