Saturday, September 22, 2012

Mia's Story

During my pregnancy, we had absolutely no idea anything was wrong. Everything progressed normally. All the routine ultrasounds and checkups were fine. Even during labor, everything was fine. It wasn't until right after Mia was born, that we started noticing something wasn't right. As soon as they laid her on my chest, I noticed she had extra digits. I remember giving Lee, my husband, a worried look. She was also having breathing issues, so they whisked her away to get that stabilized. It was so hard to not be able to hold my baby that I had just given birth to and also hard to not know if she was OK. They kept her under the hood oxygen for 12 hours. Once everything seemed OK, we were allowed to take her back to our room. She needed help sucking, so we worked on teaching her with a pacifier. The hospital continued monitoring her for a few days, and after being there for five days they detected a heart murmur. They decided to send her to the Children's Hospital in Peoria. It was such a scary time to not know what was wrong.

 They did several tests on her and prepared us for the worst. Lee and I were so emotionally drained. A week after she was born, we got the results of her chromosome test. As soon as the doctor walked in, we knew it wasn't good news. They told us she had full Trisomy 13 and would probably only live a month. It was the worst news of my life. This beautiful little baby that I had so lovingly carried for nine months was only going to be with us a short time. The geneticist warned us not to look up information online because we would find skewed information about children living longer.

We took her home and basically thought we were going to watch her die. We went home and were surprised at how well she did for us. She ate and grew like a regular baby. We definitely always made the most of it by taking tons of pictures and videos of our beautiful little baby. Eventually I gave into my curiosity and looked up more information. I found a wonderful support group of parents raising children with Trisomy 13. These parents were advocates for their children in a world that doesn't always give these children much of a chance. I realized there was hope for Mia. And from then on I decided we were going to do everything possible to give her the best chance at living. We had to be her voice. We started making appointments with specialists in order to understand Mia's system as best we could. Unfortunately Mia started getting sick with a respiratory infection before we had a chance to go to many appointments we made. She was admitted to the hospital to treat it.

Overall, we've been here about eight weeks. She's had her up and downs, but we feel she's making progress. She has many great doctors and nurses taking care of her. They don't treat her any differently based on her Trisomy and do everything they can to treat her issues. She's been on the ventilator twice. We were able to get her off before, but she wasn't quite ready and ended up back on the vent. She recently got off again and is on bipap and high flow. Hopefully we can keep her breathing comfortably. We know we still have a lot to deal with on our journey ahead, but we strongly believe our daughter is a fighter and will be able to pull through. Thank you so much for the support, thoughts, and prayers. Through all of this, we've been incredibly blessed to have so many wonderful people in our lives.

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