Tuesday, March 1, 2011
I've known all along that once we were home from the Norwood surgery it would only be temporary. I knew we would have only 3-5 months at home before having to return for a second surgery. But I do not like that it's quickly becoming a reality. When we are home, Evan's a normal baby. He acts like a normal baby, looks like one, etc. He smiles, and laughs, and yells.. I don't want to sign a consent form to have his chest opened again. I don't want to stop at the doors to the surgical unit and say my "See you soon's".. But I know he will be in God's hands and He will take care of my little man..
I would really like to clear the air for everyone who may not understand our situation completely.. Evan is NOT a normal baby. Getting even a common cold or tummy virus right now would put him in the hospital, overnight, potentially for days. We, along with every other parent of a heart baby waiting for their second surgery, have been told to keep him healthy, away from school aged kids, sick people, people who have been in contact with sick people, etc. etc. I HATE BEING HOME BOUND! But I will do it/am doing it to keep my little guy healthy. He has not even had the slightest cough yet, and this is all thanks to Scott and I being so protective over him, and not taking him to crowded places, or letting people hold him outside our home. I can't wait until Evan has recovered from his Glenn so we can take him to my parent's house, and Scott's parent's house, and trips outside the house.. but for right now, he's staying home and away from germs. I'm sorry if you are offended that you have not had the opportunity to meet our little miracle, but I really hope you try to understand why, and have the patience to wait until he is stable enough to meet you..
Thursday Evan will go have his second swallow study. Please please please pray that he passes. I want his feeding tube out forever! He's such a talker, I know his little vocal cord has been healed.. I'll make sure I update Thursday <3