Our Story
I had my first child in 2012. In April of 2014 we discovered we were pregnant with Baby #2. I announced it right off the bat, we were so excited. In June of 2014 we lost that baby. Too early to know the gender or really anything about him or her. It still makes me sad that I don't really have a name for my baby.
Baby # 2 would have been due December 26. That's the day we found out Rebecca was coming. Since we had had a previous loss, we didn't tell anyone until I was past the first trimester. I was so excited for my rainbow baby but so scared, too. Around that time we had genetic testing and the doctor indicated a high risk of Down's due to thickened neck skin. I declined further testing since I knew I would keep her regardless of the findings, but after thinking about it I knew that more information would help me be prepared for whatever was coming and so had my doc do the Harmony test. 1 in 1,000 chance for Down's but 1 in 10 chance of Edward's. My doctor advised me to do research so I would know what we were up against. What I found was heartbreaking. The survival rate was low, doctors routinely advised abortion. Even if by some miracle she survived birth she would be severely handicapped. It was just so hopeless. I would meet people online and get some hope and then go to the doctor and lose it all. Every time we saw a specialist there was more troubling news. Clubbed feet, abnormal heart, underdeveloped lungs, umbilical hernia, on and on and on.
She was born September 4, 2015. Four pounds, 7 1/2 ounces. Perfect. I had a c-section since most babies with T18 don't do well with vaginal birth and when she was born I looked up at my husband and he was crying. He never cries. I couldn't see her. I said, "Is she breathing?" and he said no. A neonatal specialist took one look, listened with his stethoscope and shook his head. She was breathing, but he didn't think it would be long.
When I saw her, she was so perfect. Purple but getting better color. Lots of dark hair, beautiful just like her big sister. I miss her tiny, twisted feet.
They gave her to me and I held her, kissed her, talked to her. They broke a lot of rules for us. They put me in recovery and let our entire family in. We had 14 people in the recovery room not including me and Rebecca. I am so thankful for the pictures my family took during that time. They and my memories are all I have left.
I held her through the night, I couldn't sleep knowing she didn't have long. My two sisters stayed with me and we took lots of pictures, sang to her and finally when I knew she was weakening I started telling her it was ok to go. She had fought so hard. She had defied doctors prognoses all the time. She died just after 6am on September 5. I miss that girl every single day.
