Fact: 50% of people with Down syndrome are born with a congenital heart defect.
You can read where I left off in Part IV here.
I left the hospital and arrived home after 10:00 pm. That was probably the longest day of my life! But. It was not over. I wanted to use the breast pump before I took the sleeping pill and went to bed. I had rented the hospital grade Medela pump from Manchester, but I realized I was not in possesion of all the accessories I thought I had saved from Nathaniel. So, I put the machine away and went to bed, hoping, . . . no praying, that everything was going to turn out ok. I cried myself to sleep.
The next morning my mother picked me up to bring me back to the hospital. (I think Scott went to finish up the loose ends at his job so he could focus on Penelope over the next few weeks.) I didn't want to push myself by driving around God's creation, but physically, I felt great. It was still hard to believe that I just had a baby the day before. First we went to Babies R Us to see about those accesories I needed for the breast pump. They didn't have it, so we treked back to Manchester Hospital. I was able to purchase what I needed and off we went to Hartford Hospital.
After parking and the journey to the NICU I was able to greet my baby quickly before I learned where the private rooms were so that I could express my milk. There were three lactation consultants at the CCMC NICU, and one woman in training, so it was a comfort to get that support. Even the attending said something to the affect that this was the best thing I could physically do for her at this point. Busy work, to stave off the feeling of helplessness. But important work none the less.
I felt like I was waiting around forever to meet Penny's cardiologist. I received word that they wanted to do another echocardiogram to confirm the diagnosis and to make sure that her heart was going to keep working until they could get her in for surgery. This day was Wednesday, but the earliest they could get her in was Monday, June 4, 2007. Of course, when I finally decided to take a quick break to grab something to eat and express milk, the doctor came and went!
The next day, my friend Audrey drove me around. I still wanted to take it easy, since under normal circumstances, I would still be in the hospital. She drove my son and I to his school to drop him off and then headed to the hospital. It was this day that I learned a lot about Penny's anatomy.
The itty bitty ductus arteriosus was being kept open by medication and was keeping my daughter alive! The ductus is not labeled in this picture, but it is the very small vessel between the aorta (AO) and the branch pulmonary arteries (PA). Penelope was born without that ever important pulmonary artery. The ductus that was kept open magically by medication is something that generally closes after birth when the baby starts to use the PA to actually get oxygen from the lungs and not from the mother. I learned that Penelope was diagnosed with Tetralogy of Fallot and Pulmonary Atresia. If she had a stenotic or narrow artery, she might have been allowed to come home for a few months until she got big enough for a proper surgery. These are the many issues that make up the diagnosis. Firstly, she is missing the pulmonary artery, or PA. In addition to the problem with the PA, she also had a hole between the two artiums (atrial septal defect, or ASD). Also, she had the hole between her two ventricles. Since she had no PA this was the only way to get blood to move in a circular path. As seen in the diagram, her aorta sat right above the hole in the ventricular wall (ventricular septal defect or VSD) and it pulled blood from both the right and left ventricles. This is called an overriding aorta. She also had right ventricular hypertrophy because her right ventricle worked extra hard to try to pump blood into a pulmonary artery that did not exist and extra muscle tissue built up on that side.