Saturday, April 9, 2011

Knowledge is not power.

You know it's been too long since your last update when you have to go back and read your last post to see where you left off! I apologize for my lack of attentiveness to my blog.. Just been having too much fun w/ my family ;)

We've had many changes in the past few months. Evan passed his swallow study on March 3!! God healed his vocal cord, I knew it, just had to wait and prove it to everyone with this test! He has since been eating like a champ! This little boy loves loves loves to eat. Evan started off on 26 calorie formula, got moved down to 24 calorie formula, and is now on regular ol' calorie formula! He was gaining too much weight! Evan takes between 5-6oz at a time now, he's such a champ. :o) We've started on solids as well. He was 15lbs 11oz today.

I can't even begin to describe what an amazing little boy Evan is. He loves to smile! He loves to cuddle with mom & dad. Just seeing his chubby cheeked face warms my heart.. I enjoy every single second I spend with him! Scott & I just completely love & adore him!

When I last updated, we thought Evan's surgery was going to be moved up since his O2 sats were lower than normal, but his sats went back to averaging in the 80's and the next Cardio appt. was normal. This past Tuesday Evan had a Cardio appt. and his sats were low. His cardiologist ordered an echo and said everything looked fine. She then called Thursday and scheduled his pre-Glenn surgery heart cath for the following Thursday, 4/14..

Crap. I hate this.. It's not like the upcoming surgery was unexpected; it's the exact opposite. I have known from day one that Evan would need 3 surgeries to survive. But knowing does not make this easier to handle. Knowledge is not power in my situation. I assumed the first surgery would be the hardest. I assumed the next two would be easier because I "know" what to expect. How ignorant of me to assume this would ever get easier! I DO NOT WANT TO PUT MY BABY THRU THIS! It's not fair. IT IS NOT FAIR! I want to take him and run. I want to hold Evan and never let him go. I hate this disease..

Keep our family in your prayers this week. Evan's cath is scheduled for 10AM on Thursday. I will keep everyone updated.