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 have a very squirrelly child.He has been doing so very well.We even took him to the 2nd grade program at Westfield on Tuesday night and he really seemed to enjoy it, waving his hand to the music and all.I’m not sure what’s going on now.
Background:because he has grown (YEA), we have needed to increase his feedings.We were going up by quite a lot:560 ml/day to 720 ml/day, or from just under 19 ounces to 24 ounces.So I cut the difference in half and we tried that for a few days.He did really well, so I increased it to the full amount.Then he started to have some trouble.He was having a lot more gas and also some diarrhea.Then early on Sunday morning, he refluxed some of his formula up past his nissen and into his mouth.We haven’t seen any of that since his nissen surgery.The risk there is of aspiration since he can’t protect his airway.So I exercised the mother’s prerogative and cut his feedings back to the intermediate point.He is gaining weight so well.He’s already over 13 pounds.At 11 months, that’s only a few pounds shy of where his siblings have been at one year.They were each right around 18 pounds and they don’t have his challenges.He was still happy on the smaller feeds, in fact happier, because he wasn’t having all the tummy trouble.
Then Wednesday we had trouble again.He brought up a fair amount of formula in the night and again at his 3 o’clock feeding.In between those, at 8:00, I think he would have, but I saw him start to struggle and quickly vented him through his tube.He brought back almost half his feeding into the large syringe along with a lot of bubbles.And he’s just miserable when that happens!I’ve spoken with his surgeon’s nurse who has left notes for him to respond.The concern is that part of his nissen may have come undone, and each time he refluxes like that, he can aspirate into his lungs.We’re pretty sure he hasn’t yet because his sats haven’t, or hadn’t, dropped and they would if he was getting fluid in there.
He hasn’t had any more episodes since yesterday afternoon, but he’s a pretty sad bug now.Last night, Kristina, his nurse, vented his tummy each hour to try to ward off the reflux.It worked, but each time he had quite a few bubbles, more than we would expect.And he has been going up on his oxygen, but his lungs still sound clear, or at least “Aaron clear.”What he has been doing is trying to rub the right ear off his head.So now we wonder:when he refluxed, did he get fluid into his Eustachian tube?Why isn’t it draining out the tube in his eardrum?Is the tube (eardrum) blocked up with wax?He has a lot of wax.How can you diagnose an ear infection when the ear canal is too tiny and twisted to see the eardrum?And most curious, why does he always seem to pick Thursdays to act up when that’s Dr. Knorr’s day off???So I watch and wonder and pray.And, on a side note, I wish this dreary, rainy, yucky weather would go away.I think our next project may need to be an ark.
What the view is supposed to look like.
The last who knows how long!
I think there's still a mountain there.