After our repeat visit to high-risk OB, Dr. Teddy Bear decided to send us to a pediatric cardiologist to get a better idea of what was happening with Sam's heart. At no time did Dr. Teddy Bear tell me "Our picture of your baby is getting clearer and with a heart condition it looks like he has Down syndrome." There are moments when I am angry about that, but overall I think it was a good thing. There are two pediatric cardiology groups in the area, and they chose to send us to Dr. Liske. I have no problem using his name in this blog because I have absolutely nothing bad to say about him or anyone working with or for him.
In my world, Dr. Liske is a rock star. He is an absolute sweetheart, well-trained and published. He used to work at Vanderbilt, one of the premier pediatric heart centers in the Southeast, but is as humble about it as they come.
At our first visit, Dr. Liske explained that he would be performing an echocardiogram on Sam, to try to get a clearer picture of his heart than a typical ultrasound. He also explained that he doesn't talk much during the echo...he needs to think and he doesn't talk or think well when he's trying to do both simultaneously. (I immediately felt more comfortable with him...he warned me in advance because he knew it would make me nervous that he wasn't saying anything! He also said he liked to think, which put him above at least one doctor we had seen recently.) There I was again, "jelly belly," lying down while he zeroed in on Sam, and then on Sam's tiny little heart. This echo felt like it took forever, made worse by the fact that my leg kept going numb and I had to move, messing up his view. After what seemed like a million years, he announced that Sam had been a very good boy for his "closeup" and we were all done. Here we go...
Dr. Liske pulled out a photocopied diagram of the human heart, and started drawing and writing on it. I love that he gave us a picture so we would know exactly what he was talking about. He told us there were some things that he just couldn't see, that it was hard to get every possible angle. Sam had one side of the heart that was larger than the other, a possible narrowing of the aorta (CoA), and some smaller than average heart valves. Dr. Liske explained that this could be due to a few different causes, including a hole in his heart between the atria (ASD) or between the ventricles (VSD). He wanted to see us back in a month (which would be in October), and then would not see us in November before Sam's birth in early December.
He told us he loved Sam's name because his son is also named Sam! This is just meant to be. :-)
At our October visit, what he saw was more or less the same. It was at this point that he told us the news I was hoping not to hear: Sam would need to go to the NICU immediately after birth. So we would not be able to deliver at the hospital we had planned on, 5 minutes from the house with the original OB group and beautiful new birthing suites. We would have to deliver at the teaching hospital. With residents and potentially students present. Lots of people, some of whom my husband works with, looking at my hoo-hah. Fabulous. (And in case you missed it with all my petty whining about my hoo-hah on display, the baby being rushed to intensive care immediately after birth.)
Dr. Liske said they might have to give medication to keep Sam's PDA (a hole in the heart present in babies until shortly after birth) open until he could have surgery. I am a pharmacist; those drugs do not scare me. He also told us he didn't think anyone here did the surgery with enough regularity to be excellent at it, so we would have to transfer to Vanderbilt. This scared me more. I could not imagine traveling to Nashville emergently in an ambulance with my brand new little guy strapped to a board, potentially only hours after giving birth. What about the bonding time? What about the healing process? How would we figure out nursing? In the end of course, this paled in comparison to the notion of my Sam having surgery by someone who wasn't an "old pro" at it. We were sent on our way with a whole new set of preparations to make; preparations that involved at least one new hospital, and perhaps a new city, in Sam's first few days of life.