Tuesday, June 12, 2007

Reality Check

I have managed to convince myself these days that Sadie is a normal baby. After all, she's doing great, finally putting on weight, acting "normal"... I even find myself forgetting at times the hell we went through those first few months. Then I get a reality check.

Today was Sadie's cardiology appointment. Everything was perfect - her heart is functioning as expected, the valves are great, the pulmonary artery isn't stretched to far, the coronary arteries aren't kinked. She's 18 lbs 3 ozs and 27.75 inches now, so right on target. So why am I feeling so blue? He said almost good things today, though he did say that he was surprised that she was so alert - he had expected a bit of a zombie after all of the problems we had with drug addiction/withdrawal.

I guess it just all kind of hits when you go back to the cardiologists office. A whirlwind of memories comes flooding back. Until faced with the man who gave me the news that scary first night of Sadie's life, I can pretend it's a bad dream. Dr. Albrecht (her cardiologist) is wonderful - I think the world of him, and can never thank him enough for saving her life.

I guess my emotions really hit when our conversation about what to expect from this point out. He only wants to see her annually this year. Any time we want to sign her up for a new sport/activity, we should call, order a stress test and EKG and clear it first. Although they're lifting the recommendation for most "heart" kids to get antibiotics before surgical and dental procedures, he still wants her to do it, given her history. But the thing that got me was when we were chatting after the visit. He was telling me about his best friend's son, who had TGA as well. He was one of the first to undergo the "switch" operation Sadie had, and is 21 and active (a lacrosse player in college) today. Albrecht was telling me that, hopefully, Sadie will be able to be just as active, and "maybe even live long enough and be well enough to have children..." but that he couldn't tell me more than that. They don't know how long this surgery will "keep" or what is in store. For all we know, at 30 the stress on the pulmonary vein may be too much. Many kids have had complications, and the numbers just aren't in yet to know what odds are.

Not that I'm trying to be pessimistic - he was telling me this to try to encourage me. He also said that for all we know, she may live longer than any of us, and be more healthy. It should have been a comfort, but instead, it scared the heck out of me. I've been able to hold on this long by just thinking about today, the next year or two, etc. I haven't really thought about her future too much, or if there would be long-term complications. It just reminded me that although we've moved on, she's doing well and we're back to the "norm," she will never be truly "normal."

2 comments:

  1. Who knows what medical advances will be around when she reaches adulthood?

    For that matter, I have no guarantee that Alastair will never have major health issues. You've hit on a frightening reality of parenthood-no guarantees ever. We don't think about it often because it scares the bejebsus out of us, and really no one would even have kids if they truly contemplated the emotion wringer you put yourself through.

    That said-GO TO SCOTLAND! And I will totally be envious of you grrrrrrr.

    Asheville rocks! It was our honeymoon spot,and we returned for our 5th anniversary. Great little mountain city.

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  2. Going back through your posts and this one completely hits home for me too. I completely identify with your feelings here! And, my research shows the earliest the ASO was performed was 1975 and it became "routine" in 1985, so the oldest kids who had it are roughly my age?

    We've been released out to 10 months. We were seen in Jan 2007, then April 2007, then October 2007, and now after he's two in August 2008.

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