For the next two-plus months, our family were officially residents of Boston Children's Hospital. While there, Joey underwent three intensive surgeries, fought off a major blood infection, was diagnosed with a rare genetic disorder, and dealt with a slew of other minor, but not inconsequential, issues. He bounced from ICU to ICU, hospital room to hospital room, while we transitioned from parent sleep space to parent sleep space, pull-out cot to pull-out cot.
It was the best and worst time of my life. Best, because we had our beautiful son, whose packs more strength in his tiny toes than anyone else I know does in their entire body. Worst, because I've never spent more time worried or stressed or afraid. We finally came home on Nov. 5, 69 days after we left, and I'm still finding references to life before Joey. The latest being when I logged into this blog and saw my last post was published the day before he was born. You know, when life was somewhat normal.
I'm going to try to return to my writing, and that includes reviewing random movies and books that everyone in the world has already read before, but I'm sure there will be plenty of Joey thrown in. I don't plan on becoming a Mommy Blogger, but his story is just a little bit different.
To start, I'd like to share the things I've learned about our experiences, both in the hospital and at home, over the past few months.
1. I have no beef with the human race. You hear so often about how society is going to crap, and with the first anniversary of the Newtown shootings passing by this weekend, sometimes that's hard to argue. But while our family was facing the biggest challenge of any of our lives, my husband and I were constantly struck by the generosity and heart of people. Some of it was people we knew - our parents and siblings and distant aunts, uncles and cousins were fantastic. They watched our dog; they did our laundry; they treated us to dinner even when they weren't physically there to take us. Our closest friends were great, too. But what got me was the generosity of people we haven't seen in the longest time, and of strangers. My closest friends from college appealed to old friends, roommates, professors and more, and they inundated us with gift cards for food and gas. Parents of my husband's high school friends sent us gifts. I was constantly receiving Facebook messages from people of all walks of life, wishing us luck and sharing their own stories. A church in our town that we had never heard us took up a collection and sent us an obscene amount of money. And the strangers - the quilting group from Cape Cod whose quilt was given to Joey before his first surgery. The donated Halloween clothes and toys to the ICU. I cannot get over the generosity and kindness of people and as Christmas approaches, it's something I think about a lot.
2. Boston Children's Hospital is an amazing place. I knew it was one of the best in the country, and when Joey was diagnosed with a couple of his problems prenatally, we knew we'd give birth in Boston to take advantage of Children's reputation. But I still can't get over it. The skill of the surgeons, the expertise of the doctors, the talent and kindness of the nurses. We were there for over two months and met hundreds of employees and I could probably count the bad ones on one hand. Joey's doctors would visit him every day just to see how he was doing, even if he was completely healed from whatever they had treated him for. Nurses that had had him days before would make excuses to check up on him, even if he wasn't their patient that day.
One of the scariest days in the hospital came in the cardiac ICU after he had undergone a minor procedure to diagnose a heart condition. He was only supposed to be in there a day, long enough to get his breathing tube removed, before returning to a regular hospital room. His tube was removed in the afternoon, he seemed fine, and we went to celebrate this minor victory over dinner. We returned to find his room filled with doctors and nurses reviving him and performing an emergency intubation (putting the breathing tube back in). It was horrifying. His numbers were plummeting, his body was pale and not moving, and it was obvious how serious the situation was by the amount of people in the room. We watched helplessly from the doorway. And while it was going on, Joey's nurse for the day - a hilarious woman named Karen, who we had spent most of the day joking around with - tried to make us as comfortable as possible while she worked on Joey. She explained what was happening, sent over another nurse to answer questions. When things had calmed a bit, she brought us water and juice because we "looked pale." She made sure our night nurse was someone we were comfortable with. The doctors on staff were equally comforting, and the mix of professionalism and humanity was exactly what made our experience so great.
3. Be thankful for what you have. I'm the worst person for getting caught up in my own rut and forgetting how much worse things could be. I still do it. Joey went through so much, and I still have rough nights where I get frustrated because he's crying or won't eat. I just have to scroll through the pictures on my phone. There he is with tubes coming out his face and chest in the NICU. There he is after one of his heart surgeries, with his chest cavity still open. There he is, dropping weight down to 4 and a half pounds, with little stick fingers. There he is passed out from the pain meds. There I am, holding him for the first time in weeks after he had a breathing tube for an extended period of time. I guess a little fussiness isn't so bad.
4. Kids are resilient. I can't believe the stuff this five-pound tough guy went through and I complain ad nauseum when I hit my head on the low pipes in the basement (in my defense, those pipes are the devil). But he'd undergo some major surgery, and then three days later, have half his tubes removed and look awesome. We saw it with other kids in the hospital, too. Youth is most certainly not wasted on these guys.
That's it for now. I'm sure I'll come up with some other brilliant observation, but for now, my writing muscles are still getting their groove back.
