It took me a long time to realize that C4 was never going to be cured. No matter how skilled the surgeon, there was never going to be a point wher ethe doctor would say "Ok, your heart is good now, you no longer need a cardiologist". C4's heart will always be broken. With skilled repairs and careful manipulation of what the surgeon had to work with, we've achieved "good enough for now".
When you tell people you're going to have a baby with a congenital heart defect, almost universally, they tell a story about their friend who had a heart baby who had open heart surgery as an infant and "they are totally fine now". For some defects, that may be true, but regardless, that heart now has scar tissue and modifications that will forever change how it operates. That heart can never be normal, it must be managed.
People think that congenital heart disease is something that can be fixed and then you move on, but it isn't. It is a life long affliction with lasting conseuences.
Some days, I barely think about Charlie's heart. Some days, I don't imagine when the next surgery will come. Most nights, I check on him, to make sure he's still breathing. Most nights, I realize, this is a journey that will never end.