I count it a blessing that we had almost two weeks to absorb the information that she would be born with a heart defect and the possibility of Down syndrome. It was the right amount of time to prepare and read up and talk to others, but no longer than that or we would have worried ourselves sick!
In a routine end of pregnancy ultrasound, at about 35 weeks, her femure measured short. I didn't ask a lot of questions, they just figured that she was moving so much and it was a bad measure, but they took notes and we scheduled the following weeks appointment. At 36 weeks, I asked how short it was, out of curiosity and what it could mean if it was an accurate measurement. She had also only measured about 4lbs, which I was pretty sure was off. He suggested that we just double check everything one more time and sent me to a level 2 guy, so that if the measurements came up wrong again, I wouldn't have to head over and have a second one with him anyway. He was our first specialist...
He indeed did find that she had been measured correctly and was really that small, but also that she had a heart defect, a complete A.V. Canal defect. It was this doctor that also told us that it is a common heart defect in children with Down syndrome. We assured him that we would love this little girl anyway and we would take it one day at a time.
He sent us to a fetal cardiologist, our second specialist. They confirmed the heart defect and did a lot of explaining about the defect, how and when they would repair it and what it meant for the rest of her life. Dr. Kao would come to see Aubrey the day she was born and likely several times while she was in the hospital to evaluate exactly how big the holes were and what our course of action would be. Then she sent us home to tell our friends and family about our dear baby and to wait.
That is when the prayer chains began. You have been our "specialists" through this journey too and we are just as thankful to have you along for the ride as we are to have all of her other specialists. You specialized in prayer and sometimes that is the best thing for Aubrey. Sometimes there is nothing else to do and we are especially thankful for all the people that pray for Aubrey and our family.
We have had to become "specialists" at a lot of things as well. When your child is sick and has special needs, you are their advocate. It happens in the NICU when they are born and at the doctors offices and at her therapy sessions and before surgery and afterwards in the PICU and when you bring them home. We are specialist who specialize in Aubrey.
It is a role that all parents take on when they have babies, but I think that especially when your child has a special need like Down syndrome. It is so important to be informed and to always find ways of making the system better not only for our kids, but for all kids that need a little extra help.
Some of the things that I hope to write about this month will include how we became informed about a lot of thinks and how we are still becoming informed so that going forward, we are always striving to create the best life for our little girl.