I stumbled downstairs in my underwear Monday morning to see three women standing in the dining room. They were specialists from the county Early Intervention Office, and they were here to see Jack.
They were also thirty minutes early. Fortunately, I was carrying my pants with me, so I dashed into the kitchen, fully dressed myself and returned to the foyer to apologize for being the hulking mess of humanity I am these days.
They were very gracious. I fantasized that they see much worse parenting flotsam than me. We sat down in the living room, and while Jack snoozed upstairs, they went through the relevant paperwork with me and Mom.
Finally, I decided to cut the Munch’s nap a bit short, so I went upstairs to get him. At first, he was grumbly because I’d woken him before he’d had the chance to wake on his own and reach out to ring his little servant’s bell. When he saw there were new people in the living room, however, all was forgiven. Fresh meat.
As Jack showed off for them, the specialists evaluated him on his play mat. After the physical therapist finished her eval, the team reaffirmed the gross-motor plaudits Jack had received from the developmental follow-up ninjas at CHOP. Nevertheless, they offered to send out another physical therapist once a week to work with the Munch. (Boy is she in for it).
Before we wrapped up, the services coordinator looked at me and Mom and said, “You guys are doing a great job.”
That, along with the promise of some help, was nice to hear. Because, let’s deal in the real, folks: getting a normal baby to one year of age having hit all their developmental milestones is usually a ton of work — on the parents’ and the baby’s part.
Getting a heart baby within spitting distance of that goal is, well — let’s just say it’s a lot more work.
Now, there are people out there, on the internet and in 3-D life, who read some article in Time magazine about children and developmental milestones and just kinda roll their eyes at all this 21st Century over-parenting nonsense.
I’ve encountered them. A common refrain is something along the lines of “if it was good enough for great-grandpappy, it’s good enough for me.” Flat-head syndrome. Gimme a break. Just a way to sell those goofy helmets to neurotic parents.
I’m ambivalent. On the one hand, I have an allergy to simplicity, so their “good ol’ days” mindset doesn’t comport with my temperament.
Nor, incidentally, does this Make Parenting Great Again mentality always comport with the relevant historical facts. Prior to the Second World War, even in this country the infant mortality rate was atrocious. So yes, it’s true that parents back then had greater concerns than how their kids would’ve scored on the ASQ, but that’s kind of beside the point.
On the other hand, I don’t think there’s any question that a Parenting Industrial Complex currently exists, and like all Industrial Complexes, the point is to sell you stuff. And the most effective sales pitch has been, is now, and ever will be: fear.
Part of what makes fear such a great motivator is that there is a multitude of types of things to be afraid of. The fear being peddled — say, to the Land of Nod catalogue crowd, for instance — is not only of the “plastic bottles are poisoning your child” or “radio waves from baby cameras cause brain cancer” variety.
Often the fear being peddled is the fear of comparison. The three-year old girl next door is an impressionist painter and plays the cello. Meanwhile, the only painting you’ve ever seen your three-year old do was when he smeared his own poop all over the bathroom door. And you’re pretty sure that if you asked him if he wanted to play the cello, he’d clap and say, “YAY!” because he thinks you said Jell-O. His favorite flavor is orange-banana.
Child development is the ideal arena for this fear of comparison to run rampant, because developmental milestones are something to which most parents — even studiously antisocial jackasses like me — give at least a passing comparative glance.
The four-year old down the street can catch flies with chopsticks like Mr. Miyagi. A neighbor says she saw him do it blindfolded. Some seven-year old boy on the next block just ran a marathon — in clogs, to raise money for breast cancer awareness. Your sister’s fetus is reading James Joyce in utero. What can your kid do?
He likes to throw rocks at the house — sadly, not overarm like the specialist says he should at his age.
The whole spectacle is tawdry, it’s tacky, it’s downright shameful. Every parent knows they shouldn’t do it, because every parent has been told, repeatedly, that kids develop differently. And that’s, okay. But it’s like not thinking of an elephant.
Here’s the rub: while you shouldn’t compare your children’s development with that of other children, you should monitor and facilitate your children’s development. You shouldn’t but you should. Don’t but do. Sorry not sorry.
In developmental terms, children are like finely-tuned watches with intricately related parts, each of which affects the others. And contrary to us grown-ups, who are in developmental terms basically inert lumps, babies are developing at light speed. Each day is a new frontier for a developing baby.
Because a child develops in a handful of areas simultaneously, development in one area frequently impacts development in another area.
For instance, let’s say Johnny has a speech delay. Talk he don’t good. It’s likely that, untreated, Johnny’s stunted speech development will also retard his social-emotional development, because a kid who don’t talk good tends to get treated like a wet food stamp by his peers, and sometimes (unfortunately) even by his teachers. Plus, it’s hard to inhabit your feelings without language, which is why we tell kids (and not a few adults) to use their words.
So what happens developmentally when a baby comes out of surgery and lays around on his can for several weeks in an ICU and/or a step-down unit?
Nothing. Or, at best, not much. And that ain’t good.
The baby isn’t moving around, developing their gross-motor skills. The baby isn’t grasping at and manipulating objects, developing their fine-motor skills. Jack was fortunate in as much as he was a rock star at the hospital and the nurses crowded around his bed throughout the day like paparazzi, so his social development got a workout. But plenty of kids spend most of their days in these units staring at popcorn ceiling tiles.
Then there’s sleep and nutrition, which it seems uncontroversial to state are paramount to healthy development in all children.
Take sleep, my self-adjudged area of amateur expertise. They call it sleep training because, weirdly, human beings aren’t born knowing how to sleep, any more than they’re born knowing how to eat with utensils.
It turns out that the trick isn’t getting a baby to fall asleep — all babies who aren’t brain-damaged will do that, even if they’re hysterically overtired and chewing on your leg. Eventually they’ll run out of cortisol and crash.
The trick is training babies to stay asleep, which really means teaching them to return to sleep unassisted after they inevitably wake before they’re refreshed — which they will do multiple times during every nap and every night cycle. This is the textbook definition of healthy sleep.
Getting kids to achieve healthy sleep requires consistency. Consistent sleep environment, consistent sleep associations, consistent sleep cues, consistent soothing routines, and not least, consistent sleep schedule.
I have no idea how many people reading this have ever been in a pediatric ICU or a step-down unit, so I’ll assume the number is zero.
These places are zoos. Nurses and doctors running around, talking, machines beeping, parents playing Barney and Friends at Helen Keller volume in the bed next to your child’s.
The lights are the worst. The only foolproof way known to change sleep cycles is by changing light exposure. In the ICU, the default luminance in the open pods is staring-at-the-sun level; in the private rooms, the lights are still way too bright.
One of Jack’s nurses in the CCU told me that she regularly went around and turned on the lights above the kids’ beds because she didn’t think it was healthy for them to be sleeping so much.
Upshot: both times Jack has come home from the hospital it’s taken us weeks to unscrew the damage done to his sleep.
Nutrition. What’s so complicated about that? Jack’s a baby. He drinks breastmilk.
For medical reasons, Jack wasn’t given any nourishment for days after both surgeries. No breastmilk, no formula, no apple pie. Only intravenous nutritional supplements.
The result? His weight cratered after the first surgery. After the second surgery, his weight slumped, and then flatlined, and only picked up after we got him home.
Bear in mind that because Jack was three weeks preterm, he wasn’t a giant to begin with (something for which his mother expressed mixed gratitude). He was born in the 25th percentile for weight. After his second surgery, he fell off the chart entirely. He’s back on it, in the 1st percentile.
Even more than a normal baby, his health depends on him getting bigger. His intramural VSD, which was patched during his cath procedure in early January, appears to be staying the same size.
It’d be swell if it would just go away, but you have to take what you’re given. Best case is for the VSD to get smaller in relative terms, and for that to happen the Munch has to get munchier.
Which means we have keep feeding him like he’s three months younger than he actually is. Which is why I’m still awake at 1:12 AM to give him a dream feed.
We stopped giving the Woog dream feeds when he was like two months old, because we could. Ryan was a mountain of a baby. The Munch is still a morsel.
Speaking of which — gotta flex. Baby monitor’s blowing up …
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