Cardiology - November 12

Thumbs up from the cardiologist - I went into this appointment with a very bad feeling and afraid that we would get some sort of bad news but they were pleased with James and feel he's doing well considering and don't need to see him back for four months unless anything new pops up or his condition worsens. Big sigh of relief!

He had an echo done "to take pictures of his heart" as they described it to us. The tech was able to point out the small hole in his heart which was barely noticeable. Sweet boy got to snuggle next to momma during this procedure.

Also was the EEG to measure his heart's activity which James loved because he got to flirt with the nice lady who administered it. Everything was normal so mom and dad were happy.

After the procedures we talked with the cardiologists who were very kind and reassuring about everything from his condition to future procedures and even his g-tube placement for the next day. We were told that the surgery likely wouldn't be until James is eighteen or even close to twenty-four months old mainly because he was a preemie and the older he is the less chance he'll have for any complications such as infection. Also, heart surgery requires a longer period of being under anesthesia which is risky for any little baby. Made me feel more reassured about waiting as we kind of felt like "let's get this over with."

We were also given more detail about the small hole in his heart, or VSD, as we hadn't heard too much about it before. Where it's located they don't anticipate it ever closing on it's own or becoming larger but instead it may affect a valve, depending on the way his heart grows. Something they'll monitor but they felt, at this time, he would be fine.

Something else we had been wondering was if James would be able to play like any other kid and participate in sports when he gets older and we were told that he would more than likely be just fine and normal after having the vascular ring repaired. Again, another sigh of relief, especially for dad who hopes to have a little basketball player. The biggest factor in this will be whether he has any developmental delays because of the Di George syndrome but luckily his mom is a great therapist!

Vascular Ring

Before discharge from Lurie we got some more news regarding James' heart. This was one area of his body we thought we had checked off the list as being fine, besides the VSD or ventricular septal defect which was something we may or may not have to deal with down the road.

The team had seen a narrowing of his esophagus during the initial swallow study. I had seen this too as one of the speech therapists pointed it out mid-study and the radiologist kind of brushed if off. I thought he really was brushing it off, but turns out they discussed it once I was out of the room. Their first thought ended up being correct, he had a vascular ring.

Fast forward a week or so after a CT scan of his chest when we were told the news. Our neonatologist and his fellow both came in to tell us and I had learned that whenever you're approached by more than one person the news isn't good. He told us they had found a right aortic arch with a vascular ring that would require surgical intervention likely sooner than later. In a nutshell, his aorta wasn't quite in the right spot and was going up and towards the back of his body and then downward instead of arching downward right away. It was also forming a 'ring' around his trachea (airway) and esophagus and as he grows will tighten -- this is why it will require surgical repair.

My initial response was anger, why were we just finding this out? He had had CT scans of his body before, he had had echos on his heart. There should have been multiple times were they found this and now, after nearly two months in the hospital and so so close to going home we were just being told. I was afraid this was going to hold us up from going home and honestly I was just so over being told bad news. The doctor apologized again and again and we had a good discussion about being kept in the loop more in the future, as I felt we hadn't been. Hard to come from a small hospital with about six babies at a time and being constantly communicated with in person step by step to a huge hospital with 40+ babies where, to quote the doctor, "your baby isn't the most acutely ill baby, we've got our hands full."

Again, our initial thoughts were that this was something that would have to be fixed right away. Our neo doctor I believe said within a couple months but that he was going to consult with the cardiologist to get more information. We then were told at around 18 months we could expect the surgery as this was when James would likely start eating solid foods like raw carrots which become an issue as the narrowing in his esophagus could block whatever he's eating and cause him to choke. Our thought is why wait, let's get this over with but they want him to be as big as possible to make the surgery 'easier' and safer. We were also told that this would not be open heart surgery and that they go in through the side of his chest and that the surgeon considers it a relatively routine procedure and that he's the top surgeon for this specialty. Great, but let's still do it sooner than later.

He also still has the VSD - ventricular septal defect- which is a separate issue altogether but due to the 22q, as is the vascular ring, and we were told would have to be a separate surgery to repair if needed. We see the cardiologist today and I'm sure will be updated on the timeline of things and the likelihood of surgery and repair for this defect.