Will is such a typical baby. He is eating well, growing, talking up a storm, and smiling and laughing constantly. Even though he gets meds twice a day and sees his cardiologist every 6 weeks, it's still so easy to forget sometimes that he has Shone's. I mean, it's always in the back of my mind, and it makes me a much more nervous...um...cautious mom, but still, there's times I can almost forget.
Since the day Will was diagnosed a week before his birth, I have been in touch with other families with little ones (& big ones) with CHD's. It is so helpful and reassuring to hear the input of parents of "older" kids and hear ideas that worked for them. It's also been helpful to meet parents with kiddos Will's age. We've met Jacob who is just 9 days older than Will and has already had several heart caths and his first OHS. And I met Amy, who was still pregnant with her little girl. This past week Hannah arrived and today, at just 5 days old, is having her first OHS.
I find myself, although not knowing these families for long, checking my computer frequently for updates and the good news that the babies are doing well on surgery days. Will did not have to have OHS, but that doesn't mean it has been completely ruled out as of yet. It will all depend on how well his heart does as he grows. And so far it is doing AMAZING!
It is so very very hard when you remember what could happen and that although Will seems so typical in many ways, he will always be a heart baby and therefore not be typical.