Derby Day with Big Daddy

Saturday, May 2, 2009 - Elle had a wonderful Saturday. Lee had to go into work so bright and early Elle and I had a few hours of mom and daughter time. She briefly fell asleep but was wide awake when OT came to work with her. She did great and took 8 cc. I was so excited about the 1 cc improvement from yesterday!! The therapist is making the recommendations for a swallow study even though Elle can't take 10 cc yet. Elle is anxious to eat and takes the bottle, but there is something that is hindering her from taking more. It sounds like the milk is pooling in the back of her throat or even going into her lungs but it is too hard to tell until they do a swallow study. I hope the swallow study takes place early in the week so we can figure out the best way to get Elle to take a bottle. We spent the rest of the day watching the Kentucky Derby. Mark, Lee's dad, came up around 1:00 and spent the rest of the day with us. We loved every minute of it! Elle certainly loves her "Big Daddy." She would just stare up at him while he was talking to her. She amazed Mark and me and stayed awake from 2:00pm until around 7:00pm. She would doze off for a few minutes and then wake back up. I think she just wanted to be sure Mark was still there because he was definitely the keeper of the binky today. He did such a great job with Elle today - I was so thankful he was here with us today! During rounds this morning, the doctors told us the same thing as always - "status quo until surgery." The only difference today was that they were able to get with CVICU and will guarantee Elle a bed after surgery - so that was great news. Now, all we have to do is coordinate Dr. Wesson, Dr. Edmonds, the anesthesiologist, and the operating room! I am so thankful for days like today! We are one day closer to surgery and one day closer to going home!

Elle's big yawn waiting for the final race of the derby!