Yep, I didn’t know it existed either. But it’s here.
And it’s a great excuse to share some pics of Ted when he was really teeny….
I don’t have much to say on the subject per se, but I’ll waffle on for a bit anyway.
That NG (nasogastric) tube saved Ted’s life in the beginning, when he was unable to feed.
His brain had taken such an insult at birth that his sucking and swallowing reflex didn’t kick in for a while. In fact, at first it was completely absent – which is extremely worrying, as the speech and language therapist stressed (don’t be fooled by the name, they deal with infant feeding too). It’s a reflex. An innate capability. When it’s not there, it’s a big concern.
I can guarantee that news alone is enough to keep you awake at night crying about your child’s terrifying future and how this means he will end up in a wheelchair (which is exactly what I did on that cold October Wednesday night).
The funny thing is, Ted did learn to suck and swallow, albeit slowly. We have a few agonisingly dull weeks of him mainly being too sleepy to bother drinking at his allotted time slot of every three hours on the half hour. Yes, NICU is that regimented.
We took him home with the tube – it was that or stay in hospital and that became less appealing each day. Ted finally dispensed of his NG about two weeks after getting home. It was a short-lived but necessary evil. Emphasis on the evil.
Aside from the good, ‘keeping my child alive stuff’… Ted’s cheeks got sore under all the tape, which I also used to resent for totally dominating his beautiful little face. It was hard not to attract stares from people. It was horrible expressing milk just to put in a syringe. It was even more horrible to have to repass the tube when it gets pulled out – this happens A LOT. You have to make sure it goes into the stomach, not the lungs, and fight your instinct not to upset your child or cause him pain. All while you pin him down and subject him to this deeply unpleasant act to the soundtrack of him screaming blue murder. BUT it gave him the space to learn to feed.
Feeding has not been without its struggles but two years on we are in a good place with milk and purées now. There’s a chance that Ted may need a gastrostomy (a tube straight to his stomach) in the future, to supplement his nutrition, but I try not to dwell on that.
A gastrostomy used to be one of my worst fears, after CP and epilepsy but, hey, we’ve embraced those already. I’ve made peace with it now. If he needs to be a tubie, it’s because he needs it to survive. And that’s OK. That’s more than OK. I just need to remember that it’s really quite miraculous that people can be kept alive with a tube. The alternative doesn’t bear thinking about.
I’m totally OK with the wheelchair thing now too, by the way. When you have a two year old who can’t quite hold his head up, why worry about something like walking? I don’t mean that flippantly, I just don’t need the unnecessary stress!