When reassuring people, we like to say, ‘The dawn brings a new day.’ It’s meant to remind us that the passage of time changes us, that healing takes time, that options that weren’t open to us yesterday may yet be presented to us. Well, we finally got that new day for the Deuce.
Yesterday, Matthew’s doctor removed his chest tube. His total inventory of tubes—the chest tube, an IV and a pica line—had been dropping, the removal of his chest tube was a big step. Originally, the plan had been to wait another day, but based on his x-rays the doctor decided he was ready. The decision may have been driven, in part, by the fact that hours after his IV and picc line had been removed he developed a fever. So, of course, an IV line went back in for the antibiotics. A classic case of two steps forward, one step back.
But in deciding to remove the Deuce’s chest tube, his doctor was minimizing one potential source for infection. Fine by us, but the bigger piece of news was that the medical team reviewing his x-rays had concluded that there was no more effusion. The Deuce was a leak-free zone.
Removing the chest tube was the definitive testament to the Deuce’s condition. As the surgeon had put it before, his was a binary issue. Either he is leaking or he is not.
Well, bitches, my boy ain’t leakin’ no mo’.
The immediate dividends this change in status paid were the very definition of life-affirming. My wife was able to hold him and breastfeed him for the first time in his (or her) life. She’d spent more than a month of pumping her milk five or six (seven?) times per day—so many times I would lose count. And compared to the way both mother and child’s brains are washed in oxytocin—a powerful neurotransmitter that has been called the “love hormone”—when breastfeeding, pumping breast milk has all the payoff of taking allergy medication to soothe depression.
I may not get quite the reward that either of them do by bottle feeding him, but I can tell you that holding him for the first time and cradling him in my arm as I gave him his bottle was powerful medicine for both him and me. It has been so long since he was born—more than a month—that holding him for the first time today was almost like experiencing his birth. For the first time. I haven’t yet had the opportunity to have him hang out on my bare chest in just his diaper, but I’m sure we’ll get that time once he’s home.
He’s got another day to go on the antibiotics, something that reminds me we have a few hurdles yet. Saturday he will be x-rayed again; I don’t know how important it will rank as a step toward his release, but my guess is that the results of that x-ray will be pretty important.
Equally remarkable as this has been his utter transformation since the bottle feedings began last weekend. Almost from the very outset of the first 10ml feeding—he was still being heavily supplemented by a TPN drip—he began acting more like a baby. He became more alert, began turning his head and looking around more and interacting more with us. If I’d been asked to guess, this change in behavior is something I would have anticipated to be more gradual and to have begun after the surgery.
That he perked up following his first feedings feels rather anti-scientific, as if it were the fulfillment of a promise made by some religion posing as science. I find miracles and science to make for poor bedfellows. Put another way, I don’t believe in magic. But there is something in the Deuce’s improvement once he started feeding on his mother’s breast milk that is nothing short of miraculous. It’s a fair word, I think, because it encompasses both the magnitude of his change and my surprise.
As the size of his feedings increased and the amount of TPN he received dropped each day, he has left what seems a twilight existence where he was never very awake and his sleep was lengthy and frequent but never seemed to refresh him. When he wakes now he is inquisitive, looking around his surroundings and moving far more than I ever recall his brother doing at the one-month mark.
When I bring him to my shoulder to burp, he lifts his head and looks around. He’s unsteady, but a lack of strength doesn’t do much to deter him. How he could progress so much in just five days boggles me.
Matthew’s stay in the NICU is nearing the end of its fifth week. To my knowledge, he is the oldest baby present. We’ve watched babies that were admitted after the Deuce progress and graduate. But despite the length of this stay, the nurses are talking about him as a real success story, an example of just how good the care is, how babies that wouldn’t otherwise have a chance at survival go on to live perfectly normal lives, that by the time they are old enough to inspect their own bodies, the scars of surgery are gone.
There are two other babies in the NICU with effusions. Neither the doctors nor the nurses really share any of this information, but you meet other parents and occasionally you’ll overhear someone talking. One of those babies is the child of the stoner parents who showed up without their ID bracelets. Their little girl was a pound at birth and still weighs less than two pounds.
I’ve not seen them this week; neither has my wife. The last family member I saw drop by was a grandmother who spent her time dissing the mother for not being there. I struggle to comprehend the road the parents are traveling. I can accept under certain circumstances it may be hard to see your child with tubes and wires running in and out of its body, but at a certain point I would imagine that a parent’s love would take over and you just wade through just to be at your child’s side. My heart aches for that poor child that is getting more love from the nurses than she is from her own blood.
The other baby, who had surgery the same day as ours hasn’t recovered as thoroughly as Matthew. While the nurses won’t say anything and we haven’t seen the parents lately—they seem to do most of their visits at night after the dad gets off work—we’ve overheard descriptors that suggest the recovery could be going better. I have the sense that there may still be fluid leaking.
To have three babies in a NICU with chylothorax effusions is unheard of. It’s a one-in-a-million possibility, and while most children get through it, the Deuce’s cohorts in this condition make for a stark demonstration of just how serious the condition is.
We are owed nothing by no one and asking the universe to give us a break is only slightly less silly than rubbing a lucky penny before exposing the results of a scratch ticket. But the heart wants what the heart wants. Right now, what I want is the Deuce home and to cuddle up with him on the couch, me shirtless, him in a diaper, and just let him sleep on my chest. For a week. I want that. I. Want. That.