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.
