Okay, I may be jumping the gun before I actually know anything but I thought I'd get some opinions from those that have been there.
Bennett is now over 10 pounds- this is great! The cardiologist told me to call him when this happened and we would go ahead and proceed with scheduling the surgery. So I spoke with the nurse coordinator at CHOP yesterday and she was a bit surprised that Bennett is not showing any signs of heart failure and is growing well. She said that sometimes in utero the baby is diagnosed with a Complete AV canal defect but then part of the VSD closes some, which they then call a Transitional AV canal defect and this would possibly postpone the surgery until Bennett is a year old. She also said it could just be that the pulmonary vascular resistance has not dropped which could explain the fact that he is not showing any signs of heart failure. I tend to believe this is the case but what do I know?
So now she would like to review this with the doctors at CHOP and most likely bring Bennett in for an echo next week in Philadelphia to see what in fact is the case and if we just need to proceed with the surgery in the next couple of weeks or hold off because he doesn't need it right now. The echo may need to be a sedated echo because a non-sedated echo would require Bennett to be still for 45 minutes and that's not going to happen unless he's asleep. We're not thrilled about him being sedated unless absolutely necessary so we need to look into this further.
Well to be honest, I was not expecting this, as our cardiologist here did not mention that this could happen and it could be that nothing has changed and it's just the PVR that has not dropped yet. I guess we will find out for sure next week what the plan will be. Either way she did say that if in fact it is still a complete AV canal defect that she did not see a problem with getting Bennett into surgery before Labor Day and with the surgeon we want. That is good news too.
So I don't know how I feel about this. Part of me just wants to get this over with because I've known about it since February that our baby would need this surgery early on and the other part of me is feeling like okay, I won't have to send my tiny infant into open heart surgery.
For those that have been in my shoes or know of others, did your babies have symptoms or no and if they didn't, did they still have the surgery early on, meaning they still had the complete AV canal defect?