The Longest Day ... Yet

The day started at 4am for me. After being woken up by a crying cat at 1:30, and not falling asleep until 3:30, I was surprisingly awake. I am guessing that was adrenaline or something. Anyway, after a quick shower and getting some things around, I woke up Drew to have some diluted juice before 5am. He seemed to think this was great, considering he nearly never gets juice and here he was, being woken up to juice. :) We headed down to the hospital to get there for our check in time of 6am.

Upon arrival at the hospital, we realized we were "those parents." The ones who seriously bring WAY too many things to either occupy their own time while they wait or help their child recover. We were loaded down with bags, which was pretty cumbersome for how quickly we had to move on three separate occasions. Our pre-op nurse, Marie, was awesome. She kept us in the loop as to what was happening and was very friendly. We had to wait for a Cardiology Fellow to check Drew out because of his congestion, so things took a bit longer. She brought in a toy for Drew to play with as our bag of tricks had long since lost its appeal. At Children's, they have an entire team devoted to doing IVs, so I stupidly thought that would go OK...not so much. That was, by far, the worst part of the morning. Her first poke didn't work, so she had to poke him again. Drew was tired, hungry and being held down while he screamed and sweated. I was so glad when it was over.

We got to hold him and go with him up to the lab, after he passed out in my arms, and were given a restaurant beeper so we could go wherever we wanted to go in the hospital. I had been OK up until I had to say goodbye to him, then I lost it. We went down to the cafeteria for awhile and then, back up to the waiting room. Finally, the beeper went off and Bill, Dad, Terry and I got to go into the lab to see what they had done. It was pretty cool to see the X-ray and the dye going across his heart, etc...but, immediately Bill and I both sensed the valvuloplasty had not done it's job. Bill noticed the restriction above the valve before I did, but I noticed the Dr's demeanor as he was describing things. I immediately became upset with the news, but this time it was anger.

Finally, we were able to see Drew. We walked into his "wake up" room and he was downing a bottle of Pedialyte. We noticed the empty one next to him. When the bottle fell out of his mouth, he let everyone know he was not happy. He looked out of it, but was trying to communicate with us. They had given him a Mam paci, which quickly became his new best friend that day. After he kept the Pedialyte down, we were able to give him formula and hold him. After the formula, he passed out again and slept for a few hours. Woke up, ate about 6 oz of formula and started getting irritated with having to lie in our arms and keep his legs to minimal movements. Dr. Turner decided to release him in the evening...by 5:30, we were on our way home. Drew fell asleep in the car and continued to sleep until after 11pm. He got up for a couple of hours, and went back to sleep until 6am or so. He has done remarkably well and has amazed us with his resilience.

We don't know when the surgery will be. We have to talk to our Cardiologist and see what she is thinking. It will probably be in the next 4-6 weeks, however. We are, of course, extremely disappointed, nervous and scared about this...but we know Drew is strong and will pull through. We thank all of your for your continued prayers and support. Special thanks to Grandparents and Aunts for coming to the hospital and helping out, to Ashleigh and Micah for the yummy meal they provided to us, and to the Boback family for the adorable Build a Bear they brought over this morning. Your kindess and generosity does not go unnoticed and is very much appreciated.

We will continue to keep all of you posted. For those of you on FB, I am going to post more pics, but this is Drew pre-op. Poor guy looks so blown out in this picture!