The Day We’ve Dreaded Is Finally Here

So Evan’s body is telling us that it’s ready for his VSD to be closed.

I was expecting Evan’s cardiologist to utter these words today, but it didn’t make the news any easier to bear.

We’ve known since Evan was just a week old that he has congenital cardiac defects that will need to be repaired through open heart surgery; yet it’s been easy to ignore the inevitable as he’s defied the odds until now.

Evan getting an EKG at 6 weeks old.

A few weeks ago I took the twins for their 15-month checkup. Evan had only gained a few ounces since his one year checkup, which raised red flags, especially since he eats like a teenage boy. Our pediatrician suggested we try adding more calories to Evan’s food, get him on PediaSure, and make an appointment with the cardiologist to rule out cardiac causes for his slow weight-gain.

At the time, her suggestions seemed over-cautious, especially since he’s hitting all of his milestones and otherwise very healthy. But as the weeks passed, Evan started showing other symptoms. Most noticeably, he’s been waking up crying for food one or two times every night, and he’s now taking two 2-3 hour naps daily at a time when most toddlers are transitioning to one afternoon nap.

This afternoon the two of us headed down to Boston Children’s Hospital. We had a long wait, so Evan amused himself (and everyone in the waiting room) by watching the trains, drawing, and trying to walk out of the cardiology department.

It’s always a bit surreal sitting in the waiting room with the other parents. Our children are all connected as heart kids… yet we all have such different experiences. The woman next to me was with her 22-year-old son. We chatted about the holidays, and how many kids we have, but all I really wanted to ask her was, “What’s it like? How do you get through each visit worrying there’s been a change for the worse?” I guess I already knew the answer… you just do. Because you have to…

After a somewhat painful hour of waiting, we were called in for Evan’s EKG. Unlike previous EKGs, Evan did not lie still – he was hangry. The nurse managed to distract him long enough to get a decent reading, and then we hung out in the room eating snacks until his cardiologist came to check on him.

Evan trying to recover from his EKG with some chocolate milk.

What? Doesn’t everyone walk around the doctor’s office in a diaper and shoes?

After a brief chat, we were sent on our way for an echocardiogram. Evan insisted in walking a lap around the cardiac unit before going into the exam room. Unfortunately, despite trying to distract him with cartoons and songs, he wiggled and cried in my arms as the tech tried to get a clear view of his heart. A few minutes after we were done, his cardiologist returned with the news… it’s time for Evan’s surgery.

During his open heart procedure, the surgeon will close his VSD (hole in his heart) and remove the extra band of muscle in his right ventricle. The entire procedure will take about four hours from the time they wheel him away from us until he’s out of the recovery room. This will be followed by a week in the hospital, and six weeks of recovery at home.

Next week I am taking Evan back to his pediatrician for blood work. His cardiologist wants to rule out any other possible causes for the lack of weight gain, and to rule out DiGeorge Syndrome. (Evan actually has a third cardiac defect – a right aortic arch. Rather than curving to the left, Evan’s aortic arch curves right. It’s causing him no problems, and seems to be an anomaly, but because it can be a symptom of DiGeorge Syndrome, the doctors want to do a bit more testing.)

In two weeks we will go for his pre-op appointment, during which he’ll have a sedated echocardiogram. Depending on the results, he will have surgery the next day. Because some of Evan’s symptoms are not consistent with heart failure, his cardiology fellow is holding out hope that something else is keeping him from gaining more weight. We’re praying she’s right, but in the meantime trying to wrap around our heads around the fact that the day we’ve dreaded is finally here.