Today was one of those days.
Theo has had several desaturation episodes — not his usual ones, not the quick dips that resolve with a touch or a breath — but the kind that pull the air from your lungs as you watch him struggle. His oxygen drops into the 20s, his skin turns blue, and for terrifying seconds, he stops moving.
The nurses rush in. Monitors scream. My hands shake as I whisper his name over and over — “Come on, baby, breathe.”
The same interventions that worked before aren’t helping this time. He takes longer to recover, longer to turn pink again, longer to make that faint sound that tells me he’s still fighting. Each second feels endless. Each episode feels like a lifetime.
We think it’s withdrawal. Yesterday they weaned his morphine, and that’s always the hardest day for him. His little body shakes, his heart races, and sweat beads across his forehead. You can see the confusion in his eyes — as if he’s wondering why his body feels this way. He’s only nine pounds, but he’s carrying a fight far too big for someone so small.
The doctors made adjustments today — changing his medication doses and feedings to match his new weight. He’s growing, slowly but surely, now up to 9 pounds 5 ounces. A tiny miracle in numbers. They also lowered his PEEP from 14 to 13 because his lungs looked too expanded on the x-ray, making his heart appear smaller.
But tonight, it feels like the change made things harder.
His chest pulls in with every breath — the retractions that signal struggle. It’s a sight no mother ever forgets. His little ribs show as he tries to pull air in, his body working twice as hard just to survive.
The PEEP, they told me, helps keep his alveoli open, prevents air from getting trapped, and helps his body clear the carbon dioxide. But right now, his CO2 levels are high — 80s and above — flashing on the monitor like an alarm my heart can’t silence.
I sit beside him, my hand wrapped around his. I whisper softly, hum to him, tell him he’s safe, that I’m right here. Sometimes, he calms — for a moment. His breathing evens out, his numbers rise. But then, it starts again. The alarms, the color change, the panic.
Each time, it feels like my heart breaks a little more.
Watching your child fight for air is something no one can ever prepare for.
There’s no training for it, no strength you can build ahead of time.
