Aili's Story - The Beginning

I found out I was pregnant on March 31st, 2008. Both my husband and I were very excited. We were also pretty nervous because I had a miscarriage in February. Things went great, we had our first appts. and had an early ultrasound to confirm that everything looked good. Everything progressed great and we were getting ready for our 20 week ultrasound. We went to it and got to see our beautiful baby moving around. We found out it was a girl. The ultrasound tech told us he was having trouble getting pictures of the left side of the heart. He did most of the pictures and then went and asked the doctor if he needed more. We tried again to get some more pictures and then we were allowed to leave. We never thought anything was wrong. We just thought she was in an awkward position and the tech had trouble getting the pictures he needed. I guess I should have figured out that 2 hours was a really long time for an ultrasound. Well the next day I got a phone call from my doctor telling me that they needed a more in depth ultrasound because they still didn't get the pictures they needed. He hadn't personally seen the report so he wasn't sure exactly why they wanted us to come in. We got an appt. pretty quickly. We were scheduled for an ultrasound and an echocardiogram (a more detailed ultrasound of the heart). At this appt. we found out that our new daughter had 3 problems with her heart. We were told she had Transposition of the Greater Arteries, Hypoplastic Left Heart Syndrome, and a Ventricle Septal Defect.

http://www.webdeb.com/lauren/tga.htm
http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/transposition.htm
http://en.wikipedia.org/wiki/Ventricular_septal_defect
http://en.wikipedia.org/wiki/Hypoplastic_left_heart_syndrome

We were very upset about this, of course. We talked with a lot of doctors that day, who helped explain what it all meant and what would probably happen. At first they told us that yes the left side of the heart was small, but they didn't think it was 'too' small and that hopefully they would just be able to switch the arteries and fix the hole in her heart. This would mean most likely only one open heart surgery. The hospital that we go to doesn't have doctors that do open heart surgeries though, so we started having some of our care at Seattle Children's Hospital. We went there for an echocardiogram, so that they could see the anatomy for themselves. While at that appt. we were told that the left side was in fact too small. This meant that instead of one open heart surgery should would now have 3. The first one occurs when the baby is around a week old, the second is done at 3-6 months of age and the last one is done around 3-5 years old. The first one is called the Norwood procedure, the second one if called the Glenn and the last one is called the Fontan.

We continued on with my pregnancy just like any normal one for the most part. I wasn't restricted or anything. We just had more appts. I had to go in for a growth ultrasound every 4 weeks. Near the end of my pregnancy I started having NST's (Non-stress tests), which is basically where they monitor you and the baby to make sure they baby isn't under stress. Lots of women have these and for lots of different reasons...some for the mother and some for the baby. In the beginning of November we met with one of the surgeons at Children's, and he explained what they would do and how they would do it. I also saw an OBGYN at The University of Washington Medical Center. We decided that I would deliver there, by being induced so that they baby would be closer to the Children's Hospital. Everything went great for the rest of my pregnancy and I was scheduled to be induced on November 24th.