In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, defied the odds, not only living, but thriving and loving his life. He passed away 13 years, 6 months and ten days after his birth. This is an effort to share his joy in his journey. Like the little purple pansy, he was tiny, but strong and still brightens his corner of the world.
I feel like this week has been a comedy of errors, except I'm not laughing yet. When we went in on Tuesday, it turned out that Aaron had outgrown his pulmonary hypertensive dosage and was shunting because of increased pressures. We adjusted, watched and came home on Thursday. If we'd thought earlier about how he's gone from 4.9 kg at his last dose adjustment to 5.7 kg, we would have realized earlier that he needed more.
Then Friday morning we went back in quickly because of significant increases of oxygen with desats. Turns out that was related to a problem with our concentrator, not Aaron. While the concentrator was reading 6-8 or even 10 l/min, he was only getting a tiny fraction of that. And I would have realized where the problem was if I had taken a minute to put him on a tank before calling 911. Oh well, live and learn. But we're home again. And he's doing great. And maybe someday, I'll laugh about it. After I get some sleep.