It was one year ago today, I was in the hospital on bedrest...it had been 2 weeks so far. We got a phone call at 7am from my doctor asking if Beau was with me. She said she wanted to come down and talk to us about the amnio results. We knew right away that something was very wrong. We waited and waited, and while were were waiting we were looking through pregnancy books trying to figure out what it could be. Nothing could have prepared us for what she was about to tell us about our baby girl. She came in after a long time, with the genetics counselor and my nurse (who was amazing). They started talking and it seemed like forever before they said what was wrong......."Your baby has something very wrong, she is mentally retarded..." That was it I don't remember hearing much else. The worst possible thing was just said...the "R" word. Then I remember, "she may not walk, talk, or ever feed herself. She has Emanuel Syndrome. We have never heard of this before, it is very rare." She handed us some sheets she printed of the internet...yes they didn't have any handouts from the hospital nothing...just from the internet.
They told me I could go home until Grace was born. They didn't need me to stay at the hospital, they wanted me to be with my family at home. The C-Section that was planned that same week was canceled. Both my doctors felt it was important to let my body go into labor naturally, so Grace and I both had the best chance, even though she was breech. Really I wanted to keep the C-Section...lets just get her out, I needed to hold her to see if she would be ok, no more waiting around!
Our families came to the hospital and we packed our things up and left. I couldn't believe this was happening to me. At this point we really didn't even know if Grace would be born alive, or would live long after birth. To be honest, after all we were told we didn't know if we wanted her to be ok after she was born, we didn't want her to have to suffer and have a hard life. So many emotions went through our head. We tried to look information up on the internet, but it was all to much, to horrible to imagine our baby not being healthy. It was like loosing a baby, a baby who was supposed to be healthy and would grow up talking and walking...all of the things kids are supposed to do. We had some difficult decisions to make.
We had a meeting with the doctors at the hospital where Grace would be born. We had to make sure everyone knew what was going on and what we wanted during my labor and after Grace was born. We asked not to have me monitored during labor, we didn't want to know if Grace didn't have a heartbeat, that would be way to hard to handle during that time. We also asked that she not be resuscitated or a breathing tube be placed if she was not breathing on her own. I felt like a horrible mother saying these things, it was a very difficult decision for Beau and I to make.
I was so worried about giving birth because Grace was breech, coming out butt first. But she was small and both of my doctors thought it would be best for me, and an easier recovery with all that I was going through. Two weeks later, Grace decided to maker her entrance. It was an exciting but scary time in the delivery room. I was pretty quiet, worried about the birth and what would happen after with Grace.
All went well, Grace was born, I had no complications and it was great! She was so pale and not responding right away. They cleaned her up and she opened her eyes so big. She needed to be taken to the NICU, but was breathing on her own.
There were many tests done and yes there were things that were wrong, but I had my little girl...and that is all that mattered.
It was all very hard, a nightmare, something I would never wish upon anyone. But the truth is, I would do it all again. In a second. I would go through all of the hurt and pain to have my Grace. She is truly amazing!
6 months ago