In the Beginning – Postscript
(Aidan, in the middle, is 8 months old here. Liam is on the right and cousin Maddy is on the left. I’m just now realizing that my sister had her first newborn baby right before Aidan was born.)
One month at home update written by me:
Well, Garreth and I have survived the last few weeks while Aidan has blossomed. We still wish for more sleep. We just today received a new monitor so we’ll see if that helps. At least it has volume control. (His apnea monitor for his oxygen beeped ALL THE TIME for no reason, well, sometimes because he wasn’t breathing like a champ, but nothing a little half asleep shake of the crib couldn’t fix.)
Aidan saw the surgeon who literally pulled out the temporary G-tube and pushed in a more permanent one. It was gross but I’m glad I paid attention because I ended up doing the same procedure on the fourth of July. (Oh, that was funny. It’s hard to remember that you can’t walk across the room with your baby because he’s plugged in. I called the doctor in a hushed voice so as not to alert Garreth to my less than brilliant move. Garreth’s less than brilliant moves tended to consist of not quite getting the tube attached correctly so milk would spill out on the bed instead of into Aidan’s tummy.) His tube came out and I had to put it back in with the surgeon talking me through it over the phone. It was really gross and not so comforting to see a hole in his stomach but now I know it’s not a huge deal.
Then we saw the neurologist. Aidan was sleeping, which didn’t help the exam but the neurologist said there was reason to be “cautiously optimist.” We go back in 6 months. (I’m sure he also said something about seizures being a possibility but that sure didn’t stick in my head, cuz, well, you know…no thank-you.)
Then we saw the geneticist who is just an incredible woman. Who really knows what geneticists do, but she knows everything. She said if Aidan didn’t look exactly like his Daddy she’d say he was a different baby. Clearly he’s improved by leaps and bounds since his time in the hospital. I asked her about the final mitochondrial studies and believe it or not, she was chasing them down that very morning. We got he final results while I was there and surprise surprise they were clear. Still one test floating around somewhere that they’re expecting to be clear. The geneticist said some babies are born with a congenital form of hypontonia (low muscle tone which remains Aidan’s diagnosis) that simply goes away. There’s no test for it and you only realize what it is when it’s gone. She said there’s no reason to believe he won’t eventually catch up with his peers.
Aidan is focusing and controlling his head movement much better. He now also averages 2 1/2 ounces by bottle 2x/day. That’s really great. (This is actually huge because eating is such a complex task and tube fed kids don’t get the same kind of practice or same taste stimulus that orally fed babies get.) We see Dr. S next week to talk about all his breathing issues. (which went away within a few months as Aidan got stronger)
We recently took our first family vacation to my Dad’s house and packed the trunk with all kinds of medical supplies. I taught my Dad and sister how to tube feed Aidan. They learned all the quirks of the pump and did great. Liam is over the thrill of having a baby in the house. That’s fine with me since he certainly doesn’t resent his presence. Liam has the best ears in the house and can hear when Aidan’s feed finishes and loves to turn the pump on and off. He’s a good helper. Liam is going through the huge “no” phase, but he says it with such attitude. This child has been close to perfect for two years. Now he’s making me pay when I have the least energy to deal with it. (That’s so funny because looking back, he was really an easy toddler and has always been a remarkably compliant kid. I was just tired.) I at least can still enjoy snuggly book time with him and see how quickly he picks up on reading. We’re looking forward to a visit from Garreth’s brother soon, and hopefully an Irish cousin this fall and then his parents in the winter. My life will definitely be busy in the fall between visiting therapist and play groups. It’s good to get out of the house.
*This is the story of Aidan’s first few months. It starts here. My present day thoughts are in bold.