A few minutes ago, I was feeding Noah his bottle, and suddenly I got a little teary. I was thinking about how he’s going to be a month old already in just a few days, and how much has happened in those 31 short days.
I think about how I am glad that the doctor gave us “the big news”, and that we had to make that terrible decision to take Noah off of his life support. If we had chosen the more selfish route, to leave him on all of his tubes, he wouldn’t be the baby that we have today.
He would have still been that rag doll in the looking glass, not responsive to us or anything around him. We might still be in Edmonton, spending each day around his bedside, listening to the never ending “beep beep beep” from all the machines, and the incessant crying from all of the other babies….but never our own. We’d still be waiting for the RT to have a minute to help our nurse transfer Noah and the tubes that were as big as him into our waiting laps, where we could finally “hold” our child for a few hours, until we got too uncomfortable in the chair or too hungry or too depressed and need a break from it all. I say “hold” simply because, really, you aren’t able to hold your child like you normally would. They put a breastfeeding pillow on your lap, lay down a receiving blanket (because everyone else uses that pillow, too), and put the baby down on the crook of your arm. There you stay, almost completely still, for an hour or more, because you have to be there a minimum of an hour so that it doesn’t stress the baby out too much (being moved can mess with their levels).
We’d be dreading the “BEEPBEEPBEEP” when one of his levels went out of whack, and hoping that a nurse wouldn’t rush over TOO fast. We’d be spending each day knowing that Noah wouldn’t get better, there’d be no hope, no happiness, no anything even worth living for.
If we had never made the unselfish, humane decision, there never would have been the time, 3 days after he was taken off his tubes, that his doctor stuck his finger in his mouth and discovered a very weak, but present, suck reflex. We never would have started him on his bottle, and watched him drain it with no problem.
Then another 3 days after that, we would have never been able to have that final, lovely moment of leaving our 4 X 8 hostel room that had been our “home” for the last 8 days, and saying goodbye to the NICU with our baby tucked into his car seat, right where he belonged.
Then, the best moment of all: cutting off our hospital bracelets. I had told Caleb and Noah that we weren’t taking off our bracelets until Noah got to come home….and finally, FINALLY, we had that wondrous moment where they fell to the floor, OUR floor.
Every day Noah seems a little more alert, a little more “normal”. He cries, he fusses, he has hunger cues, he eats (A LOT), he soils his diaper, he noms on his hand, he startles, he roots, he lifts his head, he looks disgruntled, he kicks, he stretches his legs aaall the way out, he stretches his arms, he punches me in the face sometimes, he grabs, he reacts to pain, he sucks on his pacifier like it’s going to leave him forever, he reacts to light, he turns his head to look at Daddy playing guitar, he hiccups, he sneezes, he sighs, he coos……EVERYTHING that a normal baby is supposed to do, which is lightyears away from where he was when we left the NICU in Edmonton.
His home care nurses couldn’t believe he was the same baby when they first came to visit. From the paperwork they had gotten, they expected a severely handicapped child. And what they got was an alert, albeit quiet (he hadn’t quite learned to cry yet that first week), beautiful little boy.
Then the next week, his respiratory was better, his startle was better, his heart beat was regular, and he was crying!
This week Noah’s meds all finally wore off (well, from our calculations they did, but we could be wrong of course), and the difference is night and day.
I am so incredibly thankful that the doctors gave us that terrible prognosis. If they had given us even a sliver of hope and if we hadn’t felt like there was absolutely nothing we could do for him, he’d still be in the hospital. He’d still be entirely sedated, instead of at home growing, and most importantly, LIVING the quality of life that he so deserves.
I’m hoping that things will keep going up and getting better, because right now it’s pretty sunny 🙂