October 17, 2012

Well I got the call from my genetic counselor today. She confirmed that she does have full term Trisomy 13. We already knew what the results would be but we did the amio just to have a definite answer.

On July 4th, when I found out I was pregnant, I would have never guessed this is where I would be. Pediatric Hospice will be the next phone call I get. They will be able to help us with everything, from counseling to the care at home if she makes it that far.

When I had a test run back in August called Materna 21, it is a blood test to have early detection of any issues such as this, I swore I would never abort it if I found out the baby had problems. I had in my mind such things as Downs or Edwards, not what my baby has been born with. It is practically a death sentence.

When we had the ultrasound done last Monday we saw a prefect little girl, her profile is beautiful and she has all her limbs, I just knew that test had to be wrong. But then the doctor came in and gave us ALL the bad news. First he said she had a under developed heart chamber, the one that pumps the blood to the body, then she has enlarged kidneys due to cysts that have formed with the kidneys. The good thing right now is that she is holding fluid still, but don't know for how long. And last, she has what they call Dandy Walker syndrome. She has not and will not form the left side of her cerebellum. All this is what looks like a perfect baby girl. The really bad thing about Trisomy 13 isn't just what she has wrong with her now but that the T13 effects everything even more when she is out of my body's protection. It can effect her breathing and her body's ability to continue functioning.

I have cried everyday since then but I know we were given her for a reason. Don't know quite yet why but I know she is to be special. I think about what I am doing to all mine and Andy's family, Andy included, and sometimes I feel selfish that I am making everyone go through this with me. I just hope everyone understands in the end.

I have read and heard and seen so many stories of other families' journey through this and it is sad but they are all happy that they didn't give them up, even with all the heart break. If I ended it now I would still have the heart break but just with guilt and wonder to added to it. Ending it will not change the sorrow. It started back when I got the test results back and it will always be there, I will just feel better knowing I am trying to give her a chance.

October 16, 2012

I have decided to start blogging. This is very scarey for me and also VERY new! The hope for this blog is for me to voice my feelings and things that happen to me on my new journey.

For those of you who don't know yet, I am pregnant. I am pregnant with a little girl who has Trisomy 13. It is hard for me to find words to describe it but lets say it isn't a great outlook for her. I want to stay hopeful for her but I know what the outcome will probably be. If I am lucky to carry her full term that will mean that I am able to see her pretty face and hold her but I will never know for how long. 

This is just the beginning of a very long journey.