My husband and I were both anxious about our first visit and orientation of the hospital but we were ready to take this big step ~ feeling good that this was the right choice for our baby girl. After a restless night of sleep, it was time to head to the hospital campus.
The size of the entire hospital campus was quite intimidating, the size of the children's wing is as big as the hospitals back home! It was a very long, emotional day to say the least. Our first appointment began around 8am and our last one was around 2pm and I remember leaving the grounds around 5pm to take the long drive back to Indy.
We met so many wonderful people, nurses, and doctors that day. We started out having a fetal echocardiogram done and then meeting with Dr. Fifer, a pediatric cardiologist to go over the findings of the echo, which I will go into later on. We then had an appointment with high risk OB and then we met with a genetics counselor and had another ultrasound study done to look at the growth and progress of our baby. We met another high risk OB doctor in this appointment. Unfortunately we were unable to meet with the surgeon on this visit.
We were given a couple tours of the children's hospital, and got to see the areas that would be pertaining to us and our baby. This wasn't the easiest part of our tour either. It was hard to see the innocent babies and children in their beds hooked up to so many wires and machines. It certainly is going to be difficult to see our OWN baby laying there in that very same condition.
We learned that our baby does indeed have HLHS and that they did see a little tiny bit of a left ventricle, which was hard to detect during our initial findings when I was 18 weeks along. They also found that it actually was the aorta that was smaller in size and the pulmonary artery was of normal size, this is more common in HLHS babies (during the initial findings they thought that it was the other way around). BUT, they did confirm that both the aorta and pulmonary artery were coming out from the right ventricle. This is also called Double Outlet Right Ventricle (DORV). She also has an atrial septal defect (ASD). She will still need to have the 3 separate heart surgeries: The Norwood, The Hemi-Fontan and the Fontan to make her heart work as efficiently as possible. It doesn't "fix" the heart to make it work and look like a normal heart, but it will enable the right ventricle do all the work of what normally would be done by two ventricles. Below is one link to a great series of videos we found on our research on HLHS from The Children's Hospital of Philadelphia (CHOP)