Fevers, What-Ifs, and God’s Faithfulness

Not sleeping well isn’t new in my world. Dot still nurses roughly every three hours, so those middle-of-the-night feedings are part of the routine. At this point, I’m not even sure how awake I am when I scoop her out of her crib and help her latch.

What is new is scooping up a warm baby. It’s been hot here, and my sleep-addled brain thinks, Odd. Did she actually get too warm in her bed? Ninety minutes later, the fussing starts again. With the window open and the fan blowing, I’m a little chilly. My child is not—not at all.

I rack my tired brain for where I put the thermometer. She nurses and fusses, nurses and fusses, for another hour. By 5 a.m., my brain finally clicks: I really need to take her temperature. Fumbling out of bed with her pressed to my chest, I pull the thermometer from the drawer where I stashed it last. 102.8.

My heart sinks. My girl has her first-ever fever. Cradling her, we crawl back into bed. I text my mom. I consult “Dr. Google.” By 6:30 a.m., it’s 103.4.

Google breaks down fevers for kids and when they’re concerning enough to see a doctor by age. But what it doesn’t say is what to do when your 12-month-old is the size of a newborn. Are these recommendations by weight? By development? She is more developed than a newborn, but nowhere near a typical one-year-old. Just how functional is her immune system? And what about other symptoms? What do we do with those? Because of her surgeries, a lot of other “symptoms” are actually baseline for her. Stuffy nose? Always. Coughing? Pretty regular. She swallows a lot of mucus, which means she’s always trying to cough it out. That inevitably triggers her gag reflex—which in turn often leads to vomiting.

Reading through the guidelines, I find myself hovering between two reactions. The calm of knowing that kids get fevers. Fevers mean the immune system is doing its job, and that part of me is content to watch and wait. But the other side of me—the one that has walked through surgeries, hospital rooms, and the NICU—knows my daughter doesn’t always fit the mold. That part cycles through what-ifs quickly enough to send my adrenaline spiking and my head spinning.

So what do you do when even the exhaustive What to Expect When… guides can’t help you? Every online article, every CDC guideline, all the checklists—they all assume a “typical” kid. I am constantly filtering: what’s normal, what’s normal for her, and what’s a warning sign. I know my daughter…I know what is baseline for her and what is abnormal. I also know that there can be gray space in between abnormal and needing to actually worry. And I never realized how exhausting all that mental filtering is. Every cough, every gag, every runny nose is noted and noticed. I keep track of how often she spits up in a day, in a week, the general consistency, and any outliers that might mean something else. I do it without thought. (Honestly, the mental energy that alone requires is probably why I can never remember where I put my keys!) But seriously—it feels like my baseline now is to always be on high alert. Translating the standard advice into our reality is hard, especially without unraveling and second-guessing myself.

There’s no clear protocol, no checklist that fits our kid perfectly. And that can be isolating—not just emotionally, but practically too. When you can’t rely on standard resources, you end up feeling like you’re inventing the map as you go. Even with support groups and a fantastic “village,” CdLS is a spectrum. Every kid is different; there isn’t a standardized experience. That can feel lonely. And even when you’re doing everything “right” and everything is going well, the balancing act doesn’t stop. It’s a constant push and pull between trusting your gut and wondering if you missed a crucial sign.

That tension between confidence and self-doubt plays out differently depending on the situation. In a clear-cut emergency, my instincts take over and I move with calm certainty. But in the murky, middle-ground moments—the ones with no obvious answer—that’s when my anxiety ratchets higher and higher.

It’s a little wild to me how calm I can be in the face of a true emergency. When I’ve rushed her into the ER, I can keep my cool, clearly explain what’s happening, and communicate exactly what needs to be done. I remember last October—I was worried, yes, but I was collected. I went into the ER, explained that she had been having apneic episodes, shared her history, and requested to be seen by an ENT as soon as one could be called in.

I’m told we all do that to a certain extent as parents—just like we all feel the heartbreak of helplessness when our kids are sick. Most of my mom friends swear that if they could take it all away and just be sick for their kids, they would. There is nothing quite like seeing your lively little one too tired to play or laugh—it’s a gut punch. But for me, it sometimes feels disproportionate. A low-grade fever, a small rash, a cough that’s a little worse than usual…in those moments, my body doesn’t just register concern; it reacts as if the stakes are high. My past experiences have trained me to notice and catalog every detail around my daughter’s health; to treat every signal as urgent until proven otherwise. I have to talk myself down. I have to remind myself that not every little thing will take us back to the hospital. And I have to balance the need to talk myself off the proverbial edge with the need to trust my gut.

And the panic over these ambiguous symptoms isn’t always just a mental battle—it’s physical too. There is sort of an embodied memory of the stress of our time in the NICU, the fear around going back to the hospital, all of the emotions through surgeries and recovery. My chest tightens, my heart sinks, my stomach knots the moment something seems off. Even something as simple as her fever today has my stomach so tight with anxiety, I genuinely wonder if I will puke. I think it is purely the grace of God that I can drive us to the ER during a true emergency and remain calm. And not just calm—I can make jokes and laugh with nurses.

But give me a gray-area symptom at home—something that might be nothing—and for whatever reason I’m primed for a fight-or-flight response. It’s as though my nervous system is still wired for those intense moments, echoing in the ordinary stress of a sick kid. Every minor rise in temperature, every gag, every extra spit-up isn’t just a data point—it’s a physical reminder of past crises. My mind remembers the alarms, the monitors, the deep helplessness of having a kid with congenital medical issues. It’s true when they say that the body keeps the score. And as silly as it seems, it’s being home where I have to force my mind to slow down and remember that the God who was faithful in the hospital is just as faithful here.

As I sit here now with my little girl shifting restlessly against my chest, trying to burrow her tiny nose into that place where my neck meets my shoulder, I’m reminded how different “sick” looks in our house. Historically, sickness almost always meant an emergency—packing bags, moving into a hospital room, bracing for the unknown. But today, we’re at home. Today, we’re just watching, waiting, making sure her immune system can do its job.

And yet, even in the calm of our living room, I feel the weight of the what-ifs that don’t actually feel far-fetched given our history. My mind knows it’s just a fever. My heart remembers how scary it can be. And my nervous system still can’t tell the difference. The world outside keeps moving—the dishes call from the kitchen, the beds aren’t made, the Roomba is stuck on a cliff somewhere—but here, time has slowed to the rhythm of her breathing. My first-time-mom brain wonders how other parents do it. What is “normal”? What’s the balance between routine and care? There has to be one, because how else would you care for multiple children?

As I sit here, my little girl growing restless while we both wait for the bottle to finish warming (because I’m trying to keep track of how much she’s actually eating while feverish), I realize this is what parenthood is: a delicate balance between presence and responsibility, between worry and trust. I’m learning that life doesn’t stop for sickness, and that’s okay. The world keeps moving, the chores pile up, schedules shift. When she settles to sleep again, I’ll take a few minutes to do a quick pick-up around the house. But for now, the dishes can wait. The beds can wait. The Roomba can figure out its cliff on its own.

Right now, all that matters is this—her head warm under my chin, her little hand curled into my shirt, and the quiet conversation I’m having with God as I hand Him all the what-ifs. If the fever turns big and scary, we’ll go where we need to go, and He’ll meet us there. And if it stays small, we’ll stay here—tucked on this couch, learning again that His grace covers even the gray areas.