So I realized that besides my family and some friends that I've happened to talked to recently no one really knows what is going on with our baby girl and honestly I've been putting off saying anything but seeing as how I'm 32 weeks along and will soon hopefully have a baby, that it's probably time to share with everyone.
When Travis and I went to our 20 week appointment thinking we were going to find out the sex of the baby we actually discovered much more, and they couldn't actually see what sex she was, lets just say she's modest! They saw some abnormalities, some kind of growth on her neck and way too much fluid, I mean like 12 cm too much in the placenta. At the time all the Doctor said was that they thought it was probably Turner's Syndrome, which they said was a chromosome disorder that usually affects women and that to find out more we would have to see a specialist that flies in from Salt Lake to the Idaho Falls hospital once a week and that he was probably want to do an amniocentesis (where they stick a huge needle in my stomach and into the placenta to get the baby's DNA). Well the next week was Christmas so we actually had to wait until December 30th to see him. He also thought it was Turner's but because of the severe conditions Shelby was in he recommended waiting on the amnio because she would probably be dead very soon, and yes he did tell us that. So we made an appointment to see him the next week... well she was still alive so we did the amnio and let me tell you I hated it. We had to wait ten days to get the results and they weren't good, she had Turner's and it was also as bad as the syndrome can get....
So brief explanation, Turner's is a chromosome disorder only affecting the x chromosome, in Shelby's case it means that she has all the right chromosome pairs except for having two Xs she only has one.
... So from then on we had appointments with the specialist every week and every week we were told that she wasn't going to make it. Well eventually they gave into the idea of her actually surviving and told us that if she did it would have to a c-section in Salt Lake at Primary Children's and that I would need to move down there about a month before the actual day of delivery.
By the way the growths on her neck are called cystic hygromas which are caused by problem in the lymphatic system, they can sometimes be removed but are likely to just grow back. Because of the complications in the lymphatic system she is also swollen every where, which I think makes her look even cuter than any other baby! Mean while they also noticed problems with her heart so they sent us to a heart specialist in Salt Lake, he discovered a few problems in her heart which will have have to be operated on but they think they can fix it. But I have appointments with him every 3 weeks and with the OB which I just met this week, which even then they were sure to inform me that Shelby will most likely not make it.
So sorry it's so long but there's really no way to shorten it but that's what is going on. I have faith that whatever happens was meant to happen and I know that no matter what I will be able to raise her some day. I feel blessed to have had the opportunity to have such a special baby, no matter how long I get to keep her.
This picture was taken two days ago it is a 3D picture of her face if you couldn't tell but I think she hates doctors, she never cooperates with them. This time they were just trying to take a picture of her face for me but as you can see it looks like she has 3 lips but really the middle on is her tongue which was out the whole time and which she kept using to lick her hand... so the picture is know of distorted because her hand was in the way the whole time and because our scanner I don't think is of the highest quality. But enjoy the love of our lives and the cutest baby ever!
When Travis and I went to our 20 week appointment thinking we were going to find out the sex of the baby we actually discovered much more, and they couldn't actually see what sex she was, lets just say she's modest! They saw some abnormalities, some kind of growth on her neck and way too much fluid, I mean like 12 cm too much in the placenta. At the time all the Doctor said was that they thought it was probably Turner's Syndrome, which they said was a chromosome disorder that usually affects women and that to find out more we would have to see a specialist that flies in from Salt Lake to the Idaho Falls hospital once a week and that he was probably want to do an amniocentesis (where they stick a huge needle in my stomach and into the placenta to get the baby's DNA). Well the next week was Christmas so we actually had to wait until December 30th to see him. He also thought it was Turner's but because of the severe conditions Shelby was in he recommended waiting on the amnio because she would probably be dead very soon, and yes he did tell us that. So we made an appointment to see him the next week... well she was still alive so we did the amnio and let me tell you I hated it. We had to wait ten days to get the results and they weren't good, she had Turner's and it was also as bad as the syndrome can get....
So brief explanation, Turner's is a chromosome disorder only affecting the x chromosome, in Shelby's case it means that she has all the right chromosome pairs except for having two Xs she only has one.
... So from then on we had appointments with the specialist every week and every week we were told that she wasn't going to make it. Well eventually they gave into the idea of her actually surviving and told us that if she did it would have to a c-section in Salt Lake at Primary Children's and that I would need to move down there about a month before the actual day of delivery.
By the way the growths on her neck are called cystic hygromas which are caused by problem in the lymphatic system, they can sometimes be removed but are likely to just grow back. Because of the complications in the lymphatic system she is also swollen every where, which I think makes her look even cuter than any other baby! Mean while they also noticed problems with her heart so they sent us to a heart specialist in Salt Lake, he discovered a few problems in her heart which will have have to be operated on but they think they can fix it. But I have appointments with him every 3 weeks and with the OB which I just met this week, which even then they were sure to inform me that Shelby will most likely not make it.
So sorry it's so long but there's really no way to shorten it but that's what is going on. I have faith that whatever happens was meant to happen and I know that no matter what I will be able to raise her some day. I feel blessed to have had the opportunity to have such a special baby, no matter how long I get to keep her.
This picture was taken two days ago it is a 3D picture of her face if you couldn't tell but I think she hates doctors, she never cooperates with them. This time they were just trying to take a picture of her face for me but as you can see it looks like she has 3 lips but really the middle on is her tongue which was out the whole time and which she kept using to lick her hand... so the picture is know of distorted because her hand was in the way the whole time and because our scanner I don't think is of the highest quality. But enjoy the love of our lives and the cutest baby ever!
