Trying to Figure it All Out

Tuesday morning, I woke up and got ready for work with everything weighting on my mind. I had told Adam that we could read that little brown booklet together later. But he was at work, and I was hungry for information that would let me have the same hope my mom had. So I opened the little brown book and started to read. I paged through to try to find the heart defect that mom told me about. It was the last one described. The last line said, "Unfortunately, even with surgery, the long-term outlook is usually poor for babies with this condition, unless a heart transplant can be performed." At which, I broke out into tears that I couldn't control. What I just read had told me that my baby was going to die, unless someone else's baby did so that mine could have a heart transplant.

I paced, I cried, I waited at the window to see Adam's car pulling up, but it never did. 6:45am passed, and I didn't leave for work, 7am passed and I didn't leave. Finally at 7:15am, I gathered up enough will power to get myself into my car and leave for work, without seeing Adam. I somehow managed to make my way through 1st hour, and mass. During 2nd hour, I told Heidi and started to cry, but pulled myself together again and made it through the rest of the day.

During 7th hour, my prep, I got a phone call from my midwife, Carrie. She told me that we were in her thoughts & prayers, but that she was transferring my care to MN Perinatal. She said that her last two pregnancies were high-risk, and that's where her care was transferred. She recommended Dr. Burris, after I told her about scary doctor. I would now be delivering at United, so that baby could be brought right over to Children's to be taken care of.

On Wednesday, during our 1:00 dismissal at school, I sat in my classroom and researched HLHS. I think the best site I came across was from a hospital in Philadelphia called Chop. It had a few videos that explained really well what HSHS was, how the surgery works, and, my favorite, life with HLHS. The last video showed several kids who are living with HLHS, and are doing quite well. I started to tear up a little when one of the doctors said that he had even gotten an invite from one of his patients to his wedding! This gave me the hope I was looking for!

I also found information about this 3-stage surgery. I found survival rates, depending on the hospital and the doctor were anywhere from 75% to 90%. I started to cling to those numbers, as they look much better than what scary doctor and the stupid little brown booklet told me.

On Friday, I got a call back from the genetic counselor, Joan, letting me know that the quad screen results came back and that everything looked good. The risk of the baby having Downs Syndrome was 1 in 3700, Trisomy 18 was 1 in 5000, and spinabifida was 1 in 4400.

Now we are just waiting to meet with the cardiologist at the ultrasound on December 22nd!