Healing hearts

Life, it would seem, is moving forward.

I haven't posted in about a month, mostly because there hasn't been much to report. Little G is a typical seven monther. He loves snuggles, doesn't trust solid foods, and gives grand speeches a few times a day. In those speeches, he sounds like a political leader rallying the support of an oppressed minority. I imagine him saying "We, the babies, deserve more playtime. Stand with me, friends, and we will banish naps forever!" His repertoire of sounds is growing, and his range of expression has exploded.

You can probably already tell that, compared with previous posts, this entry will be a little boring. The insult has passed and now we are simply recovering. The process doesn't make for interesting writing, but it has honestly been exhausting.

Little G is just beginning to trust new people. It is quite obvious that he does not feel secure with antone other than his parents. He cries in his sleep and awakens in terror. Sometimes it is difficult to tell where the scars of trauma end and where his own temperament begins. He has always been wary and very dependent on his parents, but his needs have definitely intensified since his surgery. When we took him to get his vaccines, he was quite content until we entered the nurses office. He immediately began shaking in my arms. I believe that, although he will not have clear memories of his hospital stay for long, it will leave indelible marks on his mind and soul.

My husband and I are also recovering. I have been reading blogs written by other heart families often. It makes our experience feel more real. I look forward to the day when I don't feel compelled to learn about these sick babies. It's emotionally exhausting.

I learned through Facebook that one little girl, who was a few beds down from us in the ICU, lost her battle on the same day we were discharged. I saw her sitting outside of surgical daycare as we came back from X ray on the day before G 's surgery. I could tell that she was a heart baby by the blue tinge to her face. I checked on her every time I passed her bed in the ICU and hoped that she would recover. I still think of her often, and of her family who I never met.

I always thought of G as relatively healthy, but he wasn't. He was in a room with the sickest kids in the province. Two months later, I am still not quite ready to accept this reality.

We made it to the cardiologist this week. G is OK, right where we expect him to be. His pulmonic valve is very leaky due to the aggressive patch that was used in his repair. We will wait and see what this means for his heart function and his energy levels as he gets older. He might need a procedure or two completed through a catheter in the next five years or so. The first would repair a small hole leftover from the surgery if it doesn't fill in on its own. The second would use an inflatable balloon to widen his pulmonary arteries, reducing the stress on his leaky valve.

We also learned that he will almost certainly need to have his leaky valve replaced eventually. Luckily, the time frame is not months or years, but decades. The cardiologist couldn't say how long until the valve needs replacement  - it's still far to early to know - but his best guess was about 20 years.

Pulmonic valves have typically been replaced via open heart surgery. However, we are just entering the age where they can be replaced through a catheter. Only certain patients qualify, but we probably have 20 years or so for the science to evolve. I am optimistic that this technique will be well established by the time G needs a replacement, and that he can avoid another open heart operation.

For now, we live and we heal. We took our first family vacation. It was only half an hour from home, but it was just what we needed. We spend three nights in a condo at the beach, and took G to the Italian restaurant where we were married. We celebrated Halloween. G wore a monkey costume hand made by my mom and inspired by one of the intensivists at Children's Hospital. She frequently called G a "chunky little monkey." And now we are looking forward to Christmas - our first as a family of three.

Our cardiologist told us to break out of the metaphorical bubble as G is now strong enough to handle colds. He suggested that we go out for coffee, shopping, and even go to the pool. Honestly, the pool and its germs are still a little scary for me. But G and I have been taking trips out in public, and he even plays with the community toys in the malls. And I don't even wipe them off first. Baby steps, right?

I will try to update this blog periodically, but it will likely be a monthly thing. Until next time...