Hey guys,
I know I haven’t updated anyone of my pregnancy in a while but it’s mostly because my heart is breaking just to think about it. What’s going on is that I am currently 23 weeks and 5 days pregnant. They had told us at 14 weeks that I had been flagged for trisomy 18 (Edwards syndrome) then at 15 weeks they gave us the all clear. I was so relieved you have no idea, I thought we were out of the woods. Then at 21 weeks 1 day i went in for my anatomy ultrasound and the doctors were having issues seeing his heart and were worried because he was smaller then he should be. I think we was measuring between 18-19 weeks. They took us to see the genetic counselor who talked about Edwards and wanted to do an amniotic test or something, I’m not entirely sure because I was breaking on the inside. I didn’t hear most of what she said. They referred us to a fetal heart doctor and told us about Hypoplastic left heart syndrome and we went home. I did alot of research about it until my appointment and there were so many success stories, it gave me hope. I went in for the echo cardiogram and thought every thing was going to be fine regardless of whether he had HLHS or not. They did the scan for over an hour, the lady made jokes and talked to us and every thing seemed fine. Then she asked me if we could move to a different room to try a better machine… I started breaking down. I knew something wasn’t right. After using the better machine I got to meet with the heart doctor. He had been watching the scans in his office. Pretty much as soon as he started talking I was fighting a panic attack. Pretty much what he told us was that our baby isn’t going to make it to his due date alive and if he does he won’t survive. He has a severe hypoplastic left heart. Meaning that most of the lower left side of his heart isn’t there. His arteries are smaller then normal and he isn’t getting sufficient blood to his brain. Since he’s so small, they probably can’t do heart surgery to try to save him and if they did and it worked there are more then three heart surgeries he would need. More heart surgery means less of a chance his body could handle a transplant if one were ever available. Lack of blood means that he will most likely be severely disabled or brain dead if he makes it… Nothing has ever hurt so much. I’m trying to hold onto hope that something will change but at the same time I’m having to figure out what to do if it doesn’t. It’s been the hardest fucking thing I’ve ever had to go through. I get mad because I don’t feel like its fair, but mostly I’m just heartbroken. I don’t know what to do any more. This is the fifth time I’ve been pregnant and will be the fifth time I’ve lost a child. He will be the first that I’ve felt grow and move and the first that I will see and be able to hold. But everyone is telling me that I’ll lose him. I’m just a mess right now and I’m not sure when that will change. I still have months until he should be here. And all this time. He still kicks around and moves and reacts to me singing and touching my belly and it’s the most amazing thing. I love my little boy more then I have ever loved anyone. I hate that this has all turned out like it has….
The universe has its own plans though I guess. I need to stop thinking about it for now, I feel like I’m going to pass out. #Me #Mybebe #My #heart #is #breaking ... See more
I know I haven’t updated anyone of my pregnancy in a while but it’s mostly because my heart is breaking just to think about it. What’s going on is that I am currently 23 weeks and 5 days pregnant. They had told us at 14 weeks that I had been flagged for trisomy 18 (Edwards syndrome) then at 15 weeks they gave us the all clear. I was so relieved you have no idea, I thought we were out of the woods. Then at 21 weeks 1 day i went in for my anatomy ultrasound and the doctors were having issues seeing his heart and were worried because he was smaller then he should be. I think we was measuring between 18-19 weeks. They took us to see the genetic counselor who talked about Edwards and wanted to do an amniotic test or something, I’m not entirely sure because I was breaking on the inside. I didn’t hear most of what she said. They referred us to a fetal heart doctor and told us about Hypoplastic left heart syndrome and we went home. I did alot of research about it until my appointment and there were so many success stories, it gave me hope. I went in for the echo cardiogram and thought every thing was going to be fine regardless of whether he had HLHS or not. They did the scan for over an hour, the lady made jokes and talked to us and every thing seemed fine. Then she asked me if we could move to a different room to try a better machine… I started breaking down. I knew something wasn’t right. After using the better machine I got to meet with the heart doctor. He had been watching the scans in his office. Pretty much as soon as he started talking I was fighting a panic attack. Pretty much what he told us was that our baby isn’t going to make it to his due date alive and if he does he won’t survive. He has a severe hypoplastic left heart. Meaning that most of the lower left side of his heart isn’t there. His arteries are smaller then normal and he isn’t getting sufficient blood to his brain. Since he’s so small, they probably can’t do heart surgery to try to save him and if they did and it worked there are more then three heart surgeries he would need. More heart surgery means less of a chance his body could handle a transplant if one were ever available. Lack of blood means that he will most likely be severely disabled or brain dead if he makes it… Nothing has ever hurt so much. I’m trying to hold onto hope that something will change but at the same time I’m having to figure out what to do if it doesn’t. It’s been the hardest fucking thing I’ve ever had to go through. I get mad because I don’t feel like its fair, but mostly I’m just heartbroken. I don’t know what to do any more. This is the fifth time I’ve been pregnant and will be the fifth time I’ve lost a child. He will be the first that I’ve felt grow and move and the first that I will see and be able to hold. But everyone is telling me that I’ll lose him. I’m just a mess right now and I’m not sure when that will change. I still have months until he should be here. And all this time. He still kicks around and moves and reacts to me singing and touching my belly and it’s the most amazing thing. I love my little boy more then I have ever loved anyone. I hate that this has all turned out like it has….
The universe has its own plans though I guess. I need to stop thinking about it for now, I feel like I’m going to pass out. #Me #Mybebe #My #heart #is #breaking ... See more
