Today is Raphael’s “heartiversary,” the anniversary of his first open heart surgery. Over the last few days I’ve been remembering the events of this time last year. On the 18th, Lyndsay’s water broke and we went to the hospital six weeks early. 12 hours later, Raphael was born. And then time gets muddled. His oxygen level was low so they took him to the NICU and we were taken to a room. A cardiologist would be coming by soon. Tired as I was, I didn’t understand what a cardiologist had to do with low oxygen. We took a nap. The nurse came in and turned the light on. She said the cardiologist would like to speak to us. He had a piece of paper and he sketched a “normal” heart next to a heart with truncus arteriosus. Our son would need surgery. And later he would need more surgeries. CHOA in Atlanta would be notified. A team would come to transport our son the next morning. We could meet him there. We tried to sleep. We watched the transport team put Raphael into a portable neonatal intensive care unit. We drove home to collect some clothes and food. We drove to Atlanta.
The next two days seemed like weeks. We spent an uncomfortable night in the hospital at CHOA. They would try to let our son grow a bit. It might take weeks. We tried to ask questions. We tried to contact family and friends. We tried to spend as much time with Raphael as we could. We met other families going through similar circumstances. We met families whose circumstances were much worse. At some point the cardiologist told us that the surgery might be sooner; maybe later in the week. We slept at my sister’s house. We went back to the hospital. They said the surgery would be the next day.
A year ago today we waited for a phone call every hour or so. The surgery team would update us as the surgery progressed. The double aortic arch was repaired. The ventricular septal defect was patched. His single aortic trunk was repaired and was now the major artery that carried blood to his body, and a 9mm conduit with a valve was attached as his new pulmonary artery. The surgery team lead by Dr. Bahaaldin Alsoufi was amazing and Raphael survived.
Over the next few weeks Raphael underwent a minor surgery to close his chest and struggled with a partially collapsed lung before he was finally weaned off a number of medications. We were transferred to the Step-Down unit where we would learn more about administering his medications and inserting and removing his feeding tube. We went home, after some breathing issues returned to Step-Down for a few more days, then we were finally released. With the generous help of Raphael’s Savta, Lyndsay and I managed to get some sleep over the next couple of months, and with the generous financial support of many, we were able to stay home for much of the spring and summer to care for Raphael. We weaned him off of 7 of the 8 medications he was on (he’ll always be on aspirin), took him off the feeding tube in late spring, and we moved him from high calorie to normal baby food in the early fall. All this time, the visits to doctor’s and specialists became fewer. From 3-4 visits a week in the early spring, to 2-3 a month now.
About a week ago we saw his cardiologist and his echocardiogram showed that as his heart has grown, his replaced conduit has narrowed, allowing his heart to function at about 60%. On January 9th, at the weekly heart catheter meeting at CHOA, the surgery and cardiology team will discuss what the next step in his care will be.
He’s turning into an awesome little human. He’s cruising along the couch and will be walking any day now. He enjoys throwing spaghetti across the room and taking his toys apart and putting them back together again. And his favorite thing is our daily walk around the apartment complex lake where he alternatively shouts “tree” and “truck” (clearly, we live in the South). We still don’t take him out much as it’s dangerous for him to be around sick people, but we all went to the aquarium for his birthday and while he enjoyed the fish, he really loved all the lights that were set up for the holidays. And once a week we take him to a music class where he occasionally leads all the other babies on excursions to explore the walls of the music room.
We try to say that he’s basically a normal kid, but the caveat is there for a reason. Between not knowing when his next surgery or heart catheter will be, the complications that could arise during those procedures and the numerous complications that could arise at any point, it’s a wonder that Lyndsay and I have even a bit of sanity left. Add to that both of us maintaining our careers without the aid of day care (but with the aid of a part-time nanny and weekly help from Raphael’s nanna), and we often feel like we’re teetering on the edge. But, like most families with a CCHD kiddo, we’re doing our best to make it. Raphael spends most of his time smiling and despite being 6-weeks early and spending his first month confined to a hospital bed, he’s developmentally right where he should be for a 1-year old. And as a family, we still manage to be kind and loving to each other, to recognize when someone needs to eat or take a nap (clearly not just talking about Raphael here), and to provide the care and comfort that we all need. It’s been a tough year, but we’re growing stronger each day. Thank you for reading and for your continued support. And for those of you who haven’t met Raphael in person yet, he’s excited to sit down and share a meal with you, provided you bring a tarp.
