Tuesday, March 1, 2011

3 months old

Our little warrior is 3 months old today! He's getting so big, he weighs over 14 pounds :o) Today Evan had a routine cardiology appointment. He got weighed, blood pressure checked in each arm and leg, had an EKG done, and an echo done. His cardiologist said everything looks to be functioning great, for now.. He is gaining so much weight and getting so big quick, meaning he is about to outgrow his shunt. His O2 sats were in the high 70's today, and they are usually in the 80's. She said this is a sign of the second surgery getting closer. She's very happy with Evan's progress, but would like to see us back in 2 weeks instead of 3. We will do another echo and EKG, and most likely schedule his pre-surgery heart cath and pre-surgery appt with Dr. Chai. Looks like we might be leaning closer to having the second surgery at the end of March/beginning of April...

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


  1. I'm so glad to hear he's doing so well! Gaining weight quickly and "heart baby" do not normally go in the same sentence! ;) I know how scary it is having the Glenn looming in the near future, but when you are home from that- you will be amazed how "normal" life gets. Keeping you all in my thoughts and prayers!

  2. I'm so happy to see Evan be a strong warrior. He's such an inspiration. I'm glad youre keeping him sequestered in the home and listening to the doctors. It's so scary to see them after the Norwood that we will do anything to protect them. I'm going to do the same and not care what people say. Mama knows best, praying your swallow study and cardiology appointments go well.