One Year Annivesary

One year ago yesterday, Liam and I took our first helicopter ride, from Virginia to Philly, which in retrospect, is frightening but kind of neat. We had spent almost 10 hours in our local emergency room and then once the crew arrived, they took over and I finally felt some relief. The pilot was a veteran, much older and could have been in the movie Good Morning Vietnam. I held onto Patton, Liam's teddy bear and he was strapped in a board. He was given sedation but never slept- a first for the crew in something like 600 flights. This is also true for napping..he isn't a big sleeper. The flight crew actually stopped to see us a few times after that night, which really was thoughtful, despite all the kids they work with, it was nice to know they thought of us. We flew into center city Philly about 11:30pm and landed quickly. I walked with Liam down to the 6th floor and met Dr. Bird, who would be a familiar face and a comfort to me over the next two months. He got me acclimated after examining Liam, worked him into the surgery schedule and walked us through what would happen. As he was doing this, Alex, Mom and Dad were labeling all the frozen breast milk that Alex drove up. Kind of weird....but it had to be done.

One year ago today, at about 9:30 am, I handed Liam over to the doctors outside the OR and said a quick prayer. I let everyone else, Mom, Dad and Alex, give him a kiss first and then I gave him a hug and kiss. Letting go was hard. In fact, the nurse had to pull him a little. He was supposed to be in his crib but I asked to carry him down the long hallways. It was a bittersweet moment, you know its best for him but you're frightened that you will never see him alive again. Open heart surgery is risky- Dr. Spray literally takes his heart out, it stops beating, he is iced down- I can't even think about all the details, which yes, I tried to read about but could never get through it. Our nurse made all the difference with our nerves, Mary Katherine. She kept us calm, gave us constant updates and a hug when we were told he was done within an hour, 3 hours less than they thought it would take. When Dr. Spray met with us after the surgery, I remember Mom telling him that she loved him, which broke the tension and we all laughed. Little did we know what was in store for us, but as bad of a 24 hours it was, it was good too. He was "fixed". And with Liam officially sedated and who would be sleeping for 12 more hours, I had a huge margarita and finally slept for the first time in 2 days.

Today, Liam and I went down to CHOP for a follow up immunology appointment. I guess I didn't think we would still be doing such frequent appointments, be on meds, or having to worry about things but honestly, its been an amazing year. There were a few parents who didn't bring their babies home, who lost them or are still waiting for repairs/transplants. We have to wait for the blood work results from today's visit, it will be about 10 days for all of it. The doctor is hopeful that he has improved since he did get through his fever hospitalization in December so quickly. We certainly hope so too!

We are beyond lucky and grateful for this little boy, because he definitely isn't a baby anymore at 24.6 lbs, who standing is past my knees and today said Bye for the first time! I couldn't have imaginied at this point last year being so damn happy, but we are..and we love this journey.