The NICU and the Trough of Sorrow

In a lot of books and articles I’ve read about startups, founders talk about the “trough of sorrow,” the long slog after the initial burst of energy, before you can see the light, before the upward momentum is clear. I keep coming back to that idea this week, as we reach almost a month in the NICU, and likely have upwards of a month still to go.

For our son, it’s been slower progress this past week, or at least that’s how it feels. So much of this is a waiting game — we’re waiting for his lungs to get stronger, we’re waiting for him to grow, we’re waiting for him to be old enough to move past the issues that preemies this young and this small inevitably face.

We bounce back and forth, depending on the latest readings on the monitor, the latest test results — relieved on the one hand that nothing terrible is happening right now, nothing acutely bad — but concerned on the other hand that things aren’t moving in the right direction quickly enough, or that for every step forward (increased feed, lowered oxygen requirement), there’s a step backwards (can’t completely tolerate the increased feed, more episodes of apnea), and with that step backwards, we worry — is this just because he wasn’t ready for the change, or does it indicate a larger problem?

“Does this indicate a larger problem?” is a question we ask ourselves so many times every day, so many times….

One doctor used some terminology that resonated for me — we’re waiting for him to “take off,” and he’s just not ready yet. It’s back to the trough of sorrow idea — the graph I linked to at the top shows what comes next — you get these wiggles of false hope — and then: The Promised Land. The startup analogy falls apart after that… I guess the liquidity event is that he gets to come home, I don’t know. And of course coming home will bring its own set of worries and concerns, largely around how to keep him infection-free and avoiding any return trips to the hospital… but right now, that all feels very, very far away when we look at our son, oxygen mask covering most of his face, milk going into his body through a tube.

I’ve been wondering a fair bit lately — and it has come up in previous pieces, I know — about whether my experience as a parent, twice through the NICU, is fundamentally different from a “normal” parenting experience, or merely a more intense version of what parenting would have been like anyway — is it “advanced mode” or is it an entirely different game altogether? In the best of scenarios, is parenting easy — or is it always hard, just in different ways depending on you, your child, and your situation?

I look at our 4-year-old, who is by this point, I believe, the same person he would have been with or without his rough beginning. He’s great, but he’s also four years old. On our best day, life is harder than it was before, and doing things — doing anything — takes more energy, more preparation, more worry.

Being responsible for whether someone else is dressed, fed, toileted, sunscreened, happy… or content, at least… is hard work. Having to take care of someone else’s needs, especially when those needs are sometimes unpredictable — “come on, you were willing to wear those shoes yesterday, what happened?” — or entirely predictable but frustrating anyway — “yes, I know we have four shapes of pasta in the pantry, but I really only want to cook one of them” — is exhausting, even when it’s tempered by joy and laughter.

Add in the constant background (and often foreground) worry about a baby in the NICU whose fate you cannot control, and it’s just… a long month. Even having done this once before, it doesn’t, as the weeks tick by, make it all that much easier, because they’re not the same baby, and their ultimate outcomes aren’t necessarily the same.

Our baby this time started out almost a pound smaller than his brother, and has only in the past 24 hours finally passed his brother’s birth weight. So the course has been slower — it’s a longer runway until he takes off — which we are optimistic won’t make a difference in the long run, or even in a few weeks, but right now, today, that makes it harder. It’s hard that we can’t always be there with our baby — we’ve been trading a cold back and forth, so, literally, right now I can’t be there — but it’s also hard to be there, because it’s hard to be in the NICU, and it’s hard to go back and forth, and it’s hard to try to maintain a normal, insulated-from-worry routine for our 4-year-old, and… it’s just hard.

It will get less hard, I know it will. We will emerge from the trough of sorrow, our baby will take off, he will grow, he will breathe, he will feed… he will come home… and we’ll worry, but he’ll get bigger, and older, and eventually we will just be “normal” parents again, hard in normal ways, but at least, hopefully, not in a hospital. Too much hospital. Way too much hospital.