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Marci - I'm sorry I missed your post. There are a few of us "heart moms" on this board so hopefully others will see your post and respond as well.
Our daughter is 6 and has had 5 open-heart surgeries (she has MAJOR heart defects, as well as a pacemaker). I do not have experience with the surgery you mentioned but I'm here if you have any other questions or just need someone to listen to you vent.
I know all about "freaking out" but I also know that modern medicine is amazing and miracles do happen. Please pm me or post again. HeartHugs - Suz
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"One life you get to do what you should" - U2
Mom to 3 great sons (ages 10, 13, 18)  and one miracle by adoption (It's a girl 7) 
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