I've been surprised at how well we've all adjusted to being home from the hospital. Obviously we are all thrilled to be home, but it also is a time for decompressing after the roller coaster ride we've been on. Not just for six weeks while Drew was recovering from surgery. But for about four years since his last heart surgery. When he was four months old they told us he'd be needing another surgery around 2 or 3. And then as 2 crept closer they said maybe 3 or 4. And then once we reached his third birthday we were told he could probably wait until he was 4. The whole time we were preparing ourselves to hand our baby over for the third time and trust that these strangers, who don't know him and love him like we do, would save his life.
Anyway, we've been dealing with home life really well. This morning Drew had a follow up appointment with Dr. Mainwaring (everything looks great). Since we were at Sutter we visited another heart family who is on their own roller coaster with their beautiful 3 year old daughter. And the emotions came flooding back. My heart breaks for this family. There is nothing horribly wrong with their daughter, but it's the highs and lows that drive you crazy. She had a great morning on Saturday, walking a lap around the floor. That night she was in septic shock. Monday she was responding well to the antibiotics, talking and spending more time awake. Monday night she desatted and they had to double her oxygen to 4 liters and put in another chest tube. So I've been upset. For the first time since we've been home, I've been crying. What is wrong with me? I don't cry when it's my own child, but I can feel the pain of the mother of this other little girl. I'd like to think that I'm just a compassionate person, that I care about this other family. But I think some of it is that I see my family in her family. I recognize their pain because it is our pain. I hear her daughter's cries, and I hear Drew crying.
I don't know exactly where I'm going with this. I guess I'm just sharing this experience with the internet. But for those of you who are not familiar with this world of heart defects and heart surgery, just know that for most of us, it is not over after our kids have their surgery. There is no "last surgery." The doctors do what they can to give our kids a chance at life, but the reality is that most of them will need more interventions, more surgeries, and we don't know when. So we all do our best to live life to the fullest, but somewhere deep inside we live in fear of when that day might come.
OK, so I don't want to end the post on that cheery note, so I'll share some good news too. Today after our visit to the hospital I took Drew to the zoo. And it was the very first time that I didn't bring the stroller with me. Because he walked by himself the whole time we were at the zoo! He was running between exhibits checking out all the animals. He did ask me to carry him a couple of times, but this is such a huge increase in his energy and exercise capacity! Yay Drew!