Sunday, April 25, 2010
March of Dimes
The March of Dimes walk was yesterday and we had a great team. Next year we are going to sign up earlier so we can raise more money!! Skyleigh had a banner on the memory mile and that was so special! I can't wait for them to mail it to me so that we can put it in our front yard!! Its getting so close to her birthday and I can't believe that we have been without her for almost a year. We miss you a lot and can't wait to kiss you again someday!!
Monday, April 12, 2010
continued....
In the next few weeks all I could do was replay what the doctor had told us over and over in my head. Of course I jumped on the Internet and tried to read all the information I could. On my birthday, April 11, 2009, I was searching the Internet and I came across a blog of little boy that had achondroplasia. I began reading his story and it brought a little bit of peace to my heart. I was thinking we can do this, it will be okay. I showed Brian the blog and told him that it really made me feel better and it did him too. At that time we still did not have a definite diagnosis and in my heart I was hoping that if it had to be skeletal dysplasia that I would probably want it to be this kind, it's not nearly as life threatening as some.
So after a week or so of starting to feel okay about her diagnosis. That it surely would turn out to be okay and she would just be a little person but she would get to be with us. We would get to see her smile and play. It was time for us to go for another sono and at this point they said they would be able to make a more accurate diagnosis. So we go into this praying that it will be okay. That we will get to have our baby girl. I am laying there watching the screen as they take the measurements. I was about 25 weeks and her body parts were only averaging the length of about 17 wks and her head was measuring about 28 wks. Which is a big sign of skeletal dysplasia. They also checked her chest measurements again and they had not changed for the better. This was not what I wanted to see on the screen. I was really hoping that they would say oops we were wrong about the whole thing. Unfortunately that was not the case. The doctor told us that she could not be 100% because we were diagnosing her in utero but that she thought Skyleigh had thanatophoric dysplasia (TD). Which I had also done my research on, I think I was a little over prepared. TD is the most common lethal skeletal dysplasia. Lethal, that word would not leave my mind. There are only a few cases where the baby survived. So my hopes were gone again, ripped up and stomped on. So now what are we supposed to do, are we just waiting for our baby to die. It's was still surreal. I cried until I was dry. The only plan we had at this point was to keep coming for sonos to make sure she didn't get fluid in her chest and to just watch her and make sure she wasn't in distress.
After a few weeks we went back for another sono, that's going to become a popular word in this blog because we had a lot of them. I am thankful for the sonos because I got to see Skyleigh and got to take home a ton of pictures. I was about 28 weeks at this point. They did all the routine measurements. It generally took awhile because Skyleigh was a busy body!! The only big difference at this point was that they noticed my water had increase substantially. She had her own swimming pool. Now that gave me something else to have to watch for, she told me that babies that have problems tend to produce more water. She said that they would monitor it and if it got to be too much fluid they could possibly drain the fluid but that we would cross that bridge when we got there.
So after a week or so of starting to feel okay about her diagnosis. That it surely would turn out to be okay and she would just be a little person but she would get to be with us. We would get to see her smile and play. It was time for us to go for another sono and at this point they said they would be able to make a more accurate diagnosis. So we go into this praying that it will be okay. That we will get to have our baby girl. I am laying there watching the screen as they take the measurements. I was about 25 weeks and her body parts were only averaging the length of about 17 wks and her head was measuring about 28 wks. Which is a big sign of skeletal dysplasia. They also checked her chest measurements again and they had not changed for the better. This was not what I wanted to see on the screen. I was really hoping that they would say oops we were wrong about the whole thing. Unfortunately that was not the case. The doctor told us that she could not be 100% because we were diagnosing her in utero but that she thought Skyleigh had thanatophoric dysplasia (TD). Which I had also done my research on, I think I was a little over prepared. TD is the most common lethal skeletal dysplasia. Lethal, that word would not leave my mind. There are only a few cases where the baby survived. So my hopes were gone again, ripped up and stomped on. So now what are we supposed to do, are we just waiting for our baby to die. It's was still surreal. I cried until I was dry. The only plan we had at this point was to keep coming for sonos to make sure she didn't get fluid in her chest and to just watch her and make sure she wasn't in distress.
After a few weeks we went back for another sono, that's going to become a popular word in this blog because we had a lot of them. I am thankful for the sonos because I got to see Skyleigh and got to take home a ton of pictures. I was about 28 weeks at this point. They did all the routine measurements. It generally took awhile because Skyleigh was a busy body!! The only big difference at this point was that they noticed my water had increase substantially. She had her own swimming pool. Now that gave me something else to have to watch for, she told me that babies that have problems tend to produce more water. She said that they would monitor it and if it got to be too much fluid they could possibly drain the fluid but that we would cross that bridge when we got there.
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