Six months ago today we kissed our tiny 44-day old son and sent him into open heart surgery, praying we would have the opportunity to kiss him again. Without the surgery to repair the large hole in his heart and blocked valve, Bodie would die for sure. With the surgery, he had a chance to live. This was going to be the longest four hours of our lives.
With tears in our eyes, we walked into the crowded waiting room to find an old friend ready to greet us. A hug has never felt so comforting as it did at that moment. We sat down and talked about anything we could think of to make the time pass. Then over the loud speaker we heard our names, we were being paged. This could not be good news; it had only been an hour and something must have gone wrong. We ran to the paging desk to find a cheerful doctor standing there with the most welcoming smile, "Lisa and David?" he asked. "Yes," we said. "I'm Dr. Nelson." Through several mutual friends, we knew of Dr. Nelson, one of the most talented adult heart transplant surgeons in the country. We had emailed him prior to Bodie's surgery, asking for advice. And there he stood, an extremely busy man who had taken the time to "pop in" on Bodie's surgery and come out and give us a personal report. "All of the prep is complete and they have just begun the surgery. Bodie never cried and he's doing great." What a blessing to hear those words from a doctor. He stayed with us for a while, answering any questions we had, then departed with a smile and words of encouragement - something we greatly needed at that moment.
As the hours ticked on, more friends and family came by the hospital. The emails flowed in with words of love and support - something we will never forget. At less than four hours, a second page. The surgery was complete and we needed to head to the pediatric ICU (PICU) waiting room to meet with the doctor who would then bring us to see Bodie - he had survived the surgical procedure, a true miracle.
Now there are only about 80 pediatric heart surgeons in the whole country - it's a pretty specialized field. Not only did Bodie get one of the top surgeons in the country, Dr. Shen, he also got one of the most laid back surgeons. Dr. Shen is a younger guy who looks like someone you'd meet surfing. He talks about clearing a heart valve the size of spaghetti noodle like most people talk about making a sandwich - no big deal. He explained the surgery went smooth and that Bodie was in the PICU where we could go and see him. Having Dr. Shen with his calm, friendly disposition throughout the surgery and recovery, was another huge blessing to me and Dave.
Walking in the first time to see Bodie was oddly calming. There his little body was, hooked up to some twenty plus machines with tubes and needles connected to every extremity on his body and a long, swollen scar down his chest. There were only a few places you could even touch skin - a foot, one finger, and a tiny patch on one side of his head. But he had made it, the tough stuff was behind us...so we thought.
What began as an anticipated 3-4 days in the PICU turned into nearly two weeks. The recovery and step-down did not go as planned. Complication after complication arose, and none of it had to do with Bodie's heart. No one could have prepared us for our experience. There was the seemingly never-ending saga with the breathing machine - they couldn't get Bodie to return to breathing on his own. One day I came back from the restroom to find ten doctors and nurses in the room, total chaos, and Bodie being "bagged" with air support, he had stopped breathing - I had only been gone for 5 minutes. Then Dave and I watched as they attempted to shut off the machine and Bodie stopped breathing all together going completely blue. I learned to hate that breathing machine.
Then came the day he was finally breathing on his own but began to foam at the mouth. His pupils were the size of his entire eyeball and he wouldn't fall asleep. He was going through narcotic withdrawals. Such a helpless feeling to watch your newborn's body feel an addiction. The doctors prescribed two weeks of narcotics to deal with the withdrawals. Dave and I made the decision to decline the drugs. Instead, we took two hour shifts and rocked him in our arms, non-stop, for 24 hours. By the end of the 24 hours his withdrawal symptoms were gone. The doctors said they had never seen a child recover so quickly - and so the miracles continued.
Sleeping in the ICU is an odd experience; I've told people it feels like Vegas; lights and bells and whistles going off at every hour of the day and night. People rushing about, everything is critical to the survival of the patients. No one laughs or casually shoots the breeze - there isn't time; a child could die if they stop working. It's pretty intense. We lived in the PICU during the entire stay.
And while our days and nights were often mixed up, the intense love and support we received was constant. There was Andria who coordinated homemade meals for us every day we were in the hospital and Lisa who stopped by with a care package and a poem she wrote called "Bodie the Brave." There was family who Skyped with us from across the country - we really did feel like we were living in a bubble - and Seth who came at a moment's notice one rough night to administer a blessing to Bodie. I gained such an appreciation for the importance of doing little acts of kindness. It was the homemade kale salad and the baby hat with a peace sign (so Bodie would look cool laying in the hospital bed) and the platter of sushi and the gift bag for the nurses - complete with a hand written card thanking them for their work and signed with our names (that someone else wrote) - that made all of the difference. Each of those moments were tiny miracles for us.
And now here we are six months later from what seems twenty years ago. People say your child's first year goes so fast and yet Bodie's feels like decades. A friend told me that's because we were counting time in seconds and minutes, rather than days and weeks - I guess that makes sense. The once swollen scar on his chest is a simple faded line and my feeling of helplessness is replaced by a joy I never knew I could feel as I hear him squeal with delight in the background. There is no doubt, I've seen miracles.
We've had a busy and fun week. My cousin Ryan arrived from Idaho on Monday. This was his first trip to DC, so we joined him for some of the site seeing activities including the demonstration by the silent drill team at Iwo Jima. If you ever get the chance to see them in person, I'd highly recommend it. Bodie was captivated by the drum and bugle corp and just about jumped out of his onsie when they did the 21 gun salute at the end of the night.
Then Thursday night we joined some friends at a political fundraiser for a former colleague - Kelly Schulz - who is running for office in the state of Maryland. This was Bodie's first political fundraiser and he had LOTS to say during the night -- I think he talked more than the candidate! You can check out Kelly on her website at http://electkellyschulz.com/ (She's the one in the picture without her shoes on)
