Weddings are supposed to an emotional and happy experience. And while I was very happy for my sister my mind was elsewhere. On Monday July 28th I went in for a regualr routine dr.'s appointment. Everything was fine, the baby's heart beat was great, I was doing great and the dr. gave me all the paperwork that I needed to schedule my ultra sound to find out what we were going to be having! She also said that there was an optional blood test that I could do to help find out if the baby had down syndrome or some other chromosomal abnormality. Dev and I wanted to do the test so she sent me over to the lab and we were told that we would hear from the dr. if they found anything, so no call meant everything was fine. Well early Wednesday morning we were all up at my parents running around like crazy getting everything ready. I was giving Peyton a bath and trying to get my hair done while my sister Darcy was in the next room getting her hair done. My phone rang and as soon as I saw the number my heart dropped. It was my dr.'s office and I was terrified to answer the phone. I hurried and calmed my self down and answered it. I was not wanting to hear what they had to tell me. They had found something in the blood test and they wanted me to go and get an ultra sound done at the new Intermountain Medical Center in Murray on Friday. I told Deven and my parents and tried my hardest to keep it together in front of Darcy so she could have the wedding she deserved. Deven kept reassuring me that everything was fine and that it could be nothing so there was no need to worry.
Friday morning came and we got up and got ready and headed out to the hospital, I had hardly slept the night before and my stomach was sick with worry. We met Deven' s mom at the hospital and she took Peyton with her to wait until we were done. We had gotten there early so we had to wait for a little while in the waiting room which only made me more nervous! When we finally got called back we went in to one of the ultra sound rooms and it was under way. About 2 minutes into the ultra sound tech said that she could already see that there was something wrong. The baby had a large amount of fluid on the back of the head and neck called a cystic hygroma. She continued on with the ultra sound and measured every body part and organ that she could. The baby also had a lot of fluid around the lungs and heart, and where the kidneys were supposed to be all she saw was more fluid. Things kept getting worse and worse. Finally with a stack of ultrasound photos in her hand she went to go and get the dr. As soon as she left the room I lost it, no one ever wants to hear that there is something worng with their baby. I kept going over if I had done anything wrong that might have caused this to happen. Dev kept telling me its ok we don't know how serious it is yet lets just wait and see what they say. So I calmed down a bit and thought ok worst case scenario Dev and I are just going to have to face the reality of raising a baby with special needs. No big deal we can deal with it.
The Dr. came in and and was followed by the ultra sound tech and another girl who introduced herself as a genetic counselor. They came in and the dr. started looking at the ultrasound pictures again and then started to tell us what everything meant. The news was something that we had never expected. She told us that all the problems and fluid that they were finding indicated a problem that was severe enough that they didn't feel that the baby would survive long enough to be born. I wasn't expecting this at all. The ultra sound could not pinpoint exactly what was wrong with the baby so they needed to get my permission to do an amniocentisis. They did the test and told us that we would get some results hopefully by Monday.
The past few days have kind of gone by in a haze. We are not quite sure what to do or how to proceed, all we know is that a week ago as far as we knew the baby was fine. Now everything is turned upside down and we are faced with the idea that we might not ever see our baby, and if we get lucky enough to make it to delivery the baby will most likely die soon after. Yesterday I got the call the some of the results were in. Our baby has something called Turner's Syndrome. Which means that our baby is.....
A GIRL!
A baby with Turner's Sydrome only has 1 X chromosome instead of the double x or XY. So all babies with Turner's Syndrome are girls. We will be going in tomorrow to talk more with the doctors to see what we need to do. I was told again yesterday that even though babies born with Turner's Syndrome have a good chance of survival our baby was not going to be that lucky and it still looks like we are going to lose her. We are devastated but we are not going to lose hope that maybe a miracle can happen and she will pull through. If she doesn't we know that she will be going to a better place and that someday we will see her again.
6 comments:
I am so sorry Amy! My heart goes out to you, and I hope everything turns out okay.
Oh by the way this is Danyelle, I found your blog, and I hope you don't care that I linked you to mine.
Hi there! I came across your post and wanted to send you some good thoughts. I have a healthy, "normal" 8 year old daughter with TS. 8-1/2 years ago I went through exactly what you did and all the counselors and drs said it was a 95% to 100% chance I would lose the baby. Suffice it to say miracles do happen because two weeks after the initial sonogram almost all the fluid resolved. The docs say they rarely see that but don't give up all faith.
Hi, another parent here of a daughter with TS. There are lots of stories of little miracle babies in our community - keep your hope alive! and search yahoo groups for "turner syndrome", "TSparents-3" and "TSPregnancy". You'll find a lot of support there. I will keep you in my thoughts and prayers.
Amy!!
Nana gave me the news the other day. I wanted to wait until you posted something before I commented though. Please know that you are in my thoughts and prayers. As you know somethings can't be explained and whatever the outcome you will continue to wonder *why*. All I can tell you is to trust in what you know to be true. This is but a moment and you will have your opportunity to raise your little girl -- one way or another. Keep us posted! We all love you!
Love, Kris & Michaela
I have a 17 months TS girl. I did not have the pregnancy that you are having and I can't say that the doctors told me the same thing. I can say that I talk to moms all the time that have been told they were going to lose their babies and they don't. I can say that there are a LOT of families thinking of you tonight and they are all praying that you are able to carry your baby to term and that all will be well.
YOU ARE NOT ALONE! Try to keep your chin up and only deal with what you have everyday. The information you are getting is overwhelming, and when you mix in the emotions it can all really just crash in. Try to have hope and know that you and your family are being thought of.
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