He had me at "beautiful"

Today marks the first day of our newest journey with Sofia's heart. Actually, it really marks the beginning of the end of her surgeries. This is good. We are prepping for the Fontan surgery and today met with her new surgeon, Dr. Robert Stewart at the Cleveland Clinic. This blog has probably been a long time coming, but there was always a part of me that dragged my feet in writing about Sofia's heart. Too emotional, too tedious (where to begin??), too big of a project. Now I feel confident that I can start writing and it will be informational and probably a bit therapeutic.

So, today we met Dr. Stewart. We have always known that Sofia would need 3 surgeries. She has tricuspid atresia, or a hypoplastic right heart (the right side of her heart was underdeveloped). She had a BT shunt a 4 days old and had the Glenn surgery at 5 1/2 months old, which were both performed by Dr. Mumtaz before he left the Clinic. The Fontan is the completion of the "correction" (I put that in quotes because anyone who has CHD or has family with it knows that most defects aren't corrected to work like ours, but they are managed. Sofia's heart won't function like ours; it will work a much different way...but it will still work). Because of her anatomy, she is not fully oxygenated right now (pulse ox is low 80s), but after the Fontan she will be in the 90s. In other words, this surgery will make her pink!

I haven't been to the Cleveland Clinic downtown since Sofia's Glenn surgery in the summer of 2009. Oliver has taken her a few times for sedated echos, but she sees her cardiologist, Dr. Edwards, at Hillcrest for convenience sake. I am always awed by the main campus. Visually, it resembles a museum more than a hospital. You get get off the elevator and walk down the tunnel of bright changing lights and ascend up the long escalator to the main lobby, where today there was a pianist playing. Sofia loves the aquariums there (look mom, there's an eel under that rock!). The other thing that always strikes me is the diversity - so many different people (patients and staff included) from all of the place. Nice to see that. It was the smell that took me back to Sofia's previous visits there. Perhaps a little PTSD. It's not even a hospital smell. Can't really describe it, but if you blindfolded me and put me there, I'm almost certain I could identify where I was. Didn't bring back terrible memories this time. Maybe they are fading?

Dr. Stewart was running late, so we a lot of time to sit in M41, the Pediatric and Congenital Heart Center, office. Then it turned out that Dr. Stewart was taken away by an emergency, so we would be waiting for about an hour after our scheduled appointment time. Thank goodness we had the foresight to leave Adelaide with my mom back home. So there was a lot of time to people watch. It's kind of a strange feeling knowing everyone coming in the door has CHD. It sounds silly writing that because we were at the Pediatric and Congenital Heart office so of course everyone there has a heart condition or is a relative of one, but it's just weird that you have this in common. Everyone knows something about you as soon as they lay eyes on you.

There was a woman there who was pregnant with a baby with hypoplastic left heart syndrome (underdeveloped left side of heart, opposite of Sofia's). It took me awhile to figure out (from eavesdropping, of course) that she was in fact the pregnant woman. There were a group of people and I heard them referring to a baby, but it took me awhile to figure it all out. And we had awhile. It through me off because she appeared to be at least in her mid-40s and at first I wasn't sure if she was the grandma of the baby they were talking about or the mom. She had a teenaged son, husband, and mother-in-law with her, and the group had just come from a consult with the surgeon. She was laughing and chatting and definitely appeared to be in good spirits. She was relieved that it was possible that her baby, a girl, might not need the first of the 3 planned surgeries. (Sometimes, in spite of the hypoplastic heart there is a balance and the lungs get enough blood and oxygen without having to do the shunt- a lucky break). There was a Cleveland Clinic staff member - social worker maybe? - guiding them around and they were waiting to meet with one of the peds heart nurse practitioners. I went back to the question that sometimes pops in my head from time to time: better to know about your baby's heart problem while pregnant or not until after your baby is born? I, of course, didn't know until after Sofia was born. While either would be shocking, it looked like there was something I definitely missed out on by not knowing ahead of time: having a tour of the hospital, meeting all your baby's doctors, being part of the plan. Someone holding your hand and walking through the steps. Of course, what I did gain was a pregnancy without the stress of knowing I had a baby with a serious problem. Their conversation was light. I can't remember having one bit of light conversation at the Clinic for whole first month Sofia was there. Maybe this pregnant mom doesn't know what she's in for (handing her crying baby off to go to surgery or wondering why your tiny baby hasn't caught a break yet), or maybe she's just more well adjusted to it than I was. Just made me think how our experience might have been different if Sofia had been prenatally diagnosed. Maybe better, maybe not. I don't really think too much about this question too much anymore as it doesn't really affect anything now, but today I was reminded of it.

So back to Dr. Stewart. We were wound back around in the offices at M41 to a place we hadn't been before. I never realized the offices went so far back. We found ourselves at the end, in Dr. Stewart's corner office with a view. I would imagine this is where we would have been brought if Sofia got diagnosed prenatally and we had the heart tour. There was a t.v. screen with live feed to the OR, which was empty at the moment. A big dry erase board, hidden by cabinets, on which Dr. Stewart would later draw pictures of Sofia's heart for us using blue and red markers, representing oxygen poor and oxygen rich blood. I felt like I was a student back in biology class or something, but I probably needed that. I could tell right away that we would like him and we have nothing to fear entrusting this man to perform Sofia's surgeries. He had 3 wooden chairs in his office with the emblems on them for Northwestern, Standford, Harvard. The trifecta of ivy league? It wasn't his education though (although that probably would have been enough) that made me trust him. He was confident, speaking as if we had already made our decision that he was going to do the surgery, but that wasn't a turn-off. He described Sofia as low-risk patient for Fontan.

He called her echo "beautiful" when he pulled it up on his computer screen to view. I would imagine that only another mom of a heart patient might know what it feels like when a doctor calls your child's echo beautiful. I asked the questions I wanted to. He would put money it that Sofia would probably have a 4 (yes, 4) day hospital stay. I would be grateful, but I would not put money on that. He has seen it be as long as 3 weeks, so let's hope for the best. I just realize how amazing all these doctors and nurses are. Truly. The heart is so complex and after 3 years of studying Sofia's condition I'm still not sure if I could really explain it to someone! And that is just one of many, many defects. He does about 1-2 Fontans per month, which to me didn't seem like a huge volume. Surgery to be in May. Heart cath in April, to be performed by Dr. Golden. I like that Dr. Stewart's opinion is that this will be a straightforward surgery. He said in the cath, they will get a good look at the inferior vena cava (large vein that receives blood from lower extremities and delivers it to the right atrium - had to look that up for the sake of accuracy), and whatever it looks like he will be able to work with it - not that he is expecting it to look bad. They will get pressures in the cath and also look at the pulmonary arteries so he knows what to expect for the surgery itself.

Oh, and the other thing we learned is that he will keep her heart beating when he does the surgery. This surprised me and I'm not sure why. Was her heart kept beating for the Glenn? I think so, but I am ashamed to admit that I don't know. He will keep her on bypass to keep her oxygenated though.

So it was a good visit. Probably better than I expected, and I feel relieved. Weird to me that I feel relief even before the surgery is done, but it's a good feeling. Sofia will be in good hands. Her favorite characters right now are the Richard Scarry Busytown ones, the old books and t.v. with animal characters. Anyway, she asked if she could have her surgery at the same hospital that "Huckle" had his tonsils taken out at - Busytown Hospital. I guess the Clinic will have to do.