The sudden, early arrival of her second child launches this mother into a profoundly hard season of life — but also brings glimmers of joy and gratitude.
by Jessie Rumbley
One year ago, I blearily nursed my baby on Mother’s Day morning. She had come home about a week prior — six weeks after her due date and 18 long weeks after her birth. For months, I’d dreamed of this moment.
Louisa was born on Christmas Day, despite being due in late March. I was 26 weeks along; she was less than 2 pounds. The turn of events leading to her arrival were swift, confusing and scary: after a fairly normal first half of pregnancy, things became unpredictably complicated in one whirlwind month. I never imagined I’d have a premature child. In fact, I didn’t know arrivals that early were possible.
On that Mother’s Day morning one year ago, Louisa fed briefly before losing her stamina. I hooked up her feeding tube and snuggled her while a pump delivered the rest of the milk directly to her stomach. We paused mid-feed to give her microdoses of medication, part of the dozens she needed each day. This reality — prescriptions and interventions — was not part of my dream.
Thus began my crash course on living in the blurry gray in-between of having a premature baby. There is no black and white here, no guarantees. Prematurity is complicated, and the “homecoming” is often not the end of the story. Louisa has no lifelong conditions that we know of and is not disabled; it appears that prematurity is her biggest obstacle to overcome.
But it’s a big one.
Since Louisa’s months in the hospital, we have navigated feeding tubes, home oxygen tanks and an ongoing, rigorous medicine schedule. There are so many specialists and therapies and appointments that my 3-year-old now knows which waiting rooms have which toys — these outings are our routine now.
There’s every reason to believe Louisa will outgrow most of her diagnoses and even out between ages 2 and 3; she will almost certainly catch up by kindergarten. So my family — my husband, our older toddler daughter and Louisa — is doing our best to take the long view as we power through daily survival.
We are weary and transformed. But we are also awestruck, doting parents; Louisa is a moonbeam, shining light on a dark and unknown journey. There is a sense of abundance thanks to perspective, privilege and supportive friends and family.
And yet I can’t help but grapple with a deep frustration at and disappointment in a health-care system that is chaotic to navigate, entrenched in silos and red tape. I have this system to thank for my daughter’s life, yes, but my family has sacrificed so much in the meantime.
And we are not alone. During 131 days trekking to and from a NICU, I encountered injustice and inefficiency that still leaves me angry and heartbroken. I witnessed the unimaginable — horrific and miraculous. Most of all, I encountered an astonishing capacity to love; to endure; to empathize. I have sat in much bitter and much sweet.
Like many in this medically complex community of parents of premature babies, I now have a solid understanding of pediatric nursing and insurance intricacies; I’m on a first-name basis with our neighborhood pharmacists; I have five specialists on speed dial; I check MyChart like it’s an email inbox; we get as many boxes from the DME (durable medical equipment) company as we do from Amazon. I am more than a mother — I am also a caregiver, a case manager,
a tenacious advocate.
Some months ago, I would have told you I was drowning in all of it. Until one day I realized that Louisa wasn’t. She’s treading water just fine. She’s active and spunky and social, just like every other 1-year-old you know. Her medical needs are exhausting — but she is a delight. My true dispatch from the deep end, here, is that sometimes the light hits the water just right; joy exists in difficult experiences, too. Grace is everywhere, even and perhaps especially in sorrow.
This year on Mother’s Day, we’ll be back at the hospital where Louisa was born. She’ll be fresh from open-heart surgery, hopefully her last big challenge before we ease into an ever more “normal” existence.
I’ve come to understand, though, that normal is what I make it — at least for now, at least while my two children are young. Perhaps this messy, emotional path is actually the most normal of them all, and I’m both sorry and proud that my daughters have walked along it early. While I trudge through this profoundly tough season, my girls scamper and giggle onward to the only life they know: one full of curiosity and energy and syringes and books, pushing around the IV pole and the walker toy alike.
Their memories of this time will fade, the feelings baked into who they are, but the details fuzzy. I just hope what they end up remembering is love — fierce, open-hearted love.
This article originally appeared in the May 2024 issue of WALTER magazine.
