Normal

Sorry for not posting sooner. We have been very busy enjoying life with an energetic six monther.

G has settled back into a normal routine. At first, he needed extra snuggles and attention to calm his frazzled nerves. Placing him on his back would result in a fit of hysterics. It seems that the poor kid was a little traumatized by his stay in the hospital. Recently, he is back to his old ways, but with a few improvements.

He laughs ALL the time. Everything is hilarious to this silly nut. Before his surgery, getting a giggle was hard work. Now, sometimes I can just smile at him and he will burst into laughter.

He gives a zillion kisses. He loved to give smooches out before, but has intensified his desire to plant sticky wet ones on unsuspecting victims... I mean lucky recipients.

He "blisses out." Now that breathing is not such hard work, he can actually relax. Watching him experience this sensation for the first time was strange and wonderful. He just lay in my arms, smiling up at me. He wasn't busy or especially interactive, but simply content.

We now have appointments with the nurse clinician every few weeks, and the GP as needed. The pediatrician popped in for a visit at our last appointment, too. We feel like VIP up in Peds. We saw the cardiologist a couple of weeks ago, and will see him again at the beginning of November. All of these appointments help us make sure that G is healing as he is supposed to.

So far he is gaining weight at the quickest rate in his life. His oxygen saturation is always in the high 90's,  sometimes even 100%. He has some leaking in his pulmonary valve,  which was expected given the aggressive patch that was used. His tricuspid valve, located between the right atrium and ventricle, is also a little leaky. It was well formed, and its decreased function is a casualty of the surgery. The cardiologist explained that it was "shoved out of the way" when the patch was placed over the hole between the ventricles, and now the leafs don't align perfectly.

We will be watching to make sure that the pulmonary arteries grow with G, and that the PFO (a hole between the atria, left by the surgeon to relieve right heart pressure ) closes on its own. If it doesn't, a surgeon will close it in five years or so by using a tool on a catheter threaded up a vein.

In the long term, we will be watching the pulmonary valve function. Over time, the leaf of the valve from the donor patch will deteriorate, decreasing valve competence. There is a decent chance that he will need the valve replaced in adulthood.

Less time is spent thinking about hearts these days. Most of our time is spent playing and napping. We have been ordered to live in a bit of a bubble for the next while to prevent illness while the baby recovers. Home is our sanctuary. We play (often ), clean (sometimes ), sing (poorly but proudly ) , and carry on with life as usual.

The baby is hugged often. We are so grateful for him. But as wonderful as gratitude is, I hope that this constant feeling of being thankful that he is breathing fades away. It's exhausting living this way. His death still fills my dreams almost every night. I long for the days when most of my thanks are given for trivial things: a meal from a friend, a favour from a neighbour, or a gift from my spouse. Some day, the line between life and death will not seem so immediately important, and we can get wrapped up in living.

As far as milestones go, G is doing very well at sitting on his own, and is trying to cut that first tooth. His gum has had a swollen lump for about 5 days now, but that pearly white is just waiting for the right time to show.

It seems that I will be ending this post here. It's late and my bed is calling. I will try to keep up this blog, but my son seems to keep me pretty busy. Posts will likely be intermittent.

Love.