“Two steps forward, one step back”: The nature of progress for micro-premies
Mateo's NICU journey Part 3
In an effort to share my wife and my story — about our experience having a 24 week micro-premie—I’ve written this series. This is part 3. The part of our story takes place a week or so after Mateo was born. My wife was finally discharged from the hospital and we were ready to face our “new normal”.
(Thank you for reading. By the way, feel free to read part 1 here and part 2 here.)
The NICU lingo
When you spend many months in the NICU with your child, you start to hear the same phrases repeated again and again. Like any unique place with its own culture, the NICU has its own specialized language. You quickly learn that a "desat" refers to a desaturation event—a sudden and frightening drop in a baby's blood oxygen levels, common among babies born prematurely. You learn that a "brady" means a notably slow heartbeat, often recognized when the heart rate dips dramatically for a moment, another common occurrence in preemies. Early on, you hear the importance of their "gases," referring to respiratory function, and their "sugars," or blood sugar and nutritional status.
Beyond the medical jargon, you also hear common sayings about the experience itself. One phrase that always stuck out to me was: “Two steps forward, one step back”. As nurses and doctors in the NICU frequently remind parents, NICU babies often experience significant regressions. It can feel incredibly deflating for a parent when, one week, your child seems to be making steady progress—they are gaining weight, breathing better, having fewer "events" like bradys or desats—and then suddenly, you walk in to find them on a higher ventilator setting or the doctor informs you that overnight something concerning occurred. At first, these setbacks feel like a punch in the gut. "What happened?" you wonder. "They were doing so well."
Progress in the NICU
“Two steps forward, one step back”, the staff would reassure us. Looking back, I realize this was some of the best advice we received. Observing other parents and children we met during our NICU journey, especially those like Mateo who faced long-term challenges and complex medical conditions, it became clear that such regressions were common. This reality is why, as a parent of a micro-preemie, you learn not to get too excited by progress. My graduate courses in psychology reminded me of a similar phenomenon described in studies of children in adverse environments—there is always a lingering apprehension, always waiting for the next thing to go wrong. You can never truly relax. That’s precisely how it feels to be in the NICU with a micro-preemie.
After about a week or so in the NICU (which felt more like a month) we began to feel a cautious sense of settling in. My wife had been discharged from the hospital, her blood pressure finally stable enough for her to leave, though we weren't ready yet to truly go home. Instead, we found ourselves adjusting to a temporary new normal, living at the Ronald McDonald House near the hospital, spending every waking moment at Mateo’s bedside.
In those early days, there was a strange comfort in this fragile routine. We woke each morning in that small, hotel-like room, grabbed coffee at Dunkin’, and walked the short distance to Mateo’s bedside. I tried to ground myself in gratitude for small mercies: the convenience of our accommodations, the support around us (Like the incredibly Kind person at the desk of Ronald McDonald House), and the precious hours we could spend with our son. I tried to anchor myself in optimism, knowing we had months of uncertainty ahead.
I also tried to focus on what was right in front of us. In that first week or so, there are a million potential problems. But at the start, the only major problem we knew about was his lungs. It was why he was on a ventilator. I dove into researching bronchopulmonary dysplasia (BPD), a lung condition common among extremely premature infants like Mateo. Doctors had already mentioned that Mateo was showing early signs of BPD, so immersing myself in research gave me a sense of control and purpose. I studied ventilator settings, oxygen saturation levels, and the long-term developmental outcomes of babies with severe prematurity. If I couldn’t control Mateo’s health, at least I could try to understand it.1
Looking back, that early period feels hazy, like a distant dream—or more accurately, a nightmare. I was experiencing a sort of dissociation, a common trauma response where your mind shields you from overwhelming stress by making events seem detached or unreal. It’s the mind’s protective mechanism, often seen in those who have endured extreme trauma. Though I still felt somewhat disconnected, I was beginning to sense my feet finding solid ground again. Perhaps it was the steady routine we’d established, or the focused clarity that researching Mateo’s condition provided, but I started to feel a faint glimmer of hope. It was as if someone had cracked open the door to a pitch-black room, letting in just a sliver of light from the outside.
Yet, we were about to experience how quickly hope could vanish in the NICU. The next morning would be our first harsh lesson in the unpredictable rhythm of progress for a micro-preemie. Rather than the reassuring refrain of “Two steps forward, one step back”, it felt unmistakably like "one step forward, two steps back."
Hope lost
The previous morning, Mateo received his first head ultrasound. During that initial week, doctors had cautioned us about the risk of intraventricular hemorrhage (IVH), commonly referred to as a brain bleed—a complication relatively common in micro-preemies. Mateo was vulnerable, not because of any physical trauma to his head, but simply due to the extreme fragility of his underdeveloped brain. Born at just 24 weeks, he should still have been safely growing inside the womb. Instead, his traumatic birth—during which he required multiple chest compressions—placed immense stress on his delicate blood vessels, particularly those lining the ventricles, the fluid-filled spaces within the brain. Nevertheless, the medical team described IVH as something they would carefully monitor, emphasizing it was concerning but not necessarily catastrophic.
When we arrived at the NICU that day, a nurse gently mentioned the ultrasound results were back and the doctor would speak with us shortly. Her casual tone initially gave me comfort, but I soon realized it masked deeper concern.
We waited anxiously beside Mateo’s isolette. I remember adjusting the blanket draped over it, hesitant even to touch him fully, relying instead on monitor readings rather than natural parental instincts.
The doctor finally approached, her expression carefully neutral—neither alarming nor reassuring.
“We have Mateo’s ultrasound results,” she began softly. “There is some bleeding in his brain.”
My stomach tightened as she carefully explained IVH grading:
Grade I: Mild, typically resolves on its own.
Grade II: More concerning but often without lasting effects.
Grade III: Serious swelling of ventricles, potential complications.
Grade IV: Most Severe; bleeding extends into the brain tissue, increasing risks of lasting damage.
I held my breath, hoping desperately for Grade I or II.
“It’s a Grade IV,” she said in a serious but, non-dramatic sort of way.
Everything around me went still. The NICU seemed to fade away as the weight of her words sank in. I waited desperately for reassurance, for any hopeful prognosis. Instead, she cautiously explained that Grade IV bleeds came with higher risks of complications such as cerebral palsy and developmental delays, and outcomes were notoriously difficult to predict.
Grade IV—the worst possible news.
As days turned into weeks, we slowly adjusted to this new reality. Eventually, another neonatologist explained Mateo’s prognosis in frank terms: “With our Grade IV kids, it’s a flip of the coin, whether they have cerebral palsy or other serious issues. Some babies surprise us and do remarkably well, others face serious challenges.”
That phrase, "flip of the coin", echoed relentlessly in my mind. It underscored the unpredictability of Mateo’s journey. This uncertainty was exactly what "one step back, two steps forward" encapsulated: the chaotic, nonlinear path we had now embarked on, where progress wasn’t measured in straight lines but in the unpredictable, often painful zigs and zags of NICU life.
As parents facing a Grade IV intraventricular hemorrhage, we quickly learned the delicate balance of remaining emotionally present without becoming overwhelmed. The challenge of this type of diagnosis was, we really didn’t know what it meant. We may not see any impacts for months, or even years. We had to move forward, whatever that meant at the time. Every parent copes differently, and they all deserve support in whatever path they choose. For us, it felt crucial to always have one of us at Mateo's bedside, offering our presence as an anchor of familiarity and love amidst the sterile and often frightening hospital environment.
Our NICU routine
While some days required me to return home, an hour and a half away, to care for our cats, my wife remained steadfastly by Mateo's side every day. On days we were both at the hospital, our routine became a carefully choreographed dance: one of us would arrive early, while the other rested; we'd switch around lunchtime, allowing each other brief moments to decompress. Often, I'd spend afternoons working on research and my day job from the hospital cafeteria, intermittently checking on Mateo and my wife, balancing professional responsibilities with the relentless emotional weight of our situation.
Evenings saw us both at his bedside again, trading brief solitary dinners in the waiting room, staying late into the night—sometimes midnight or even 1 a.m.—before finally heading back to sleep. This routine provided structure and predictability, a necessary framework to cope with the unpredictable ups and downs we faced each day.
During these endless days, we consciously tried not to dwell on the frightening possibilities and the overwhelming uncertainties ahead. Yet, amidst the chaos, hope found its way to us in small but meaningful moments. After weeks of little progress and immense frustration, our turning point came with kangaroo care—holding Mateo gently skin-to-skin on my wife’s chest, even with his tiny body still tethered to a ventilator. Despite the complexity and risks, these moments provided profound connection and healing. Reading to him, softly speaking, and simply touching him reinforced a bond we hoped would transcend medical interventions and uncertainties.
Small signs of hope return
Slowly—agonizingly slowly—small signs of progress emerged. Mateo required slightly less ventilator support, and his ability to tolerate feedings through his feeding tube improved incrementally. These tiny victories meant everything. Yet, the cruelty of NICU life meant hope was never unguarded. Just as we felt confidence building, traumatic setbacks reminded us of our vulnerability—like the night Mateo accidentally pulled out his breathing tube. Watching helplessly as medical residents struggled unsuccessfully to reintubate him, until finally, a neonatologist took over, etched itself painfully into our memories.
These days, filled with moments of trauma and resilience, blurred into weeks and then months. Progress was intermittent, marked by frequent setbacks and rare victories. Calls to the hospital often offered reassurance, only to be shattered by bad news upon our arrival the next day. It was a relentless emotional rollercoaster, perfectly captured by the phrase, “Two steps forward, one step back” Yet, with the perspective of hindsight, we now understand the journey differently—it was truly two steps forward, one step back. The trajectory wasn't linear or predictable, but over the months, Mateo did improve, slowly, unevenly, but undeniably. Amidst the darkest days, hope persisted, reminding us that healing, while never straightforward, was always possible.
Yet amidst the relentless emotional rollercoaster of NICU life, the truest encapsulation of hope came in those rare, beautiful moments. They were few and far between—so much so that you almost felt guilty when they occurred. You’d glance around at other parents, aware they might be in the depths of their own painful struggles, and you’d feel a pang of guilt for savoring your brief moment of joy. Yet, despite that guilt, those fleeting glimpses of hope were profoundly precious.
These moments arrive differently for every family, uniquely paced and tailored to their individual journeys. For us, one such unforgettable moment came months into our NICU stay. By this point, Mateo had more than tripled his birth weight. Although he still required heavy breathing support from a CPAP machine, he had finally graduated from the ventilator. Progress, though slow and measured, was unmistakably there.
Unexpected Miracles
On this particular day, one of our longest-tenured doctors approached us with an unmistakable warmth in her eyes. When you spend months in the NICU, you become familiar with everyone, from nurses to respiratory therapists to neonatologists. This doctor had seen countless babies, experienced numerous heartaches, and celebrated incredible triumphs. Yet she approached us with an eagerness we hadn’t seen before.
"Hello, Acton family," she greeted us brightly. "I have something amazing to show you."
With more than a hundred babies in her care, each dealing with urgent, life-threatening challenges, she took the rare step of pausing her rounds to sit with us. In the middle of the bustling NICU, amidst alarms and the hum of medical machinery, she opened her laptop and brought up Mateo’s weekly cranial ultrasounds. Since Mateo's initial diagnosis months earlier of a Grade IV IVH, these scans had been a weekly source of anxiety and dread.
She carefully guided us through the scans, starting from those early weeks. Initially, the images showed clear asymmetry—damage from the brain bleed was unmistakable, the ventricles distorted, one side looking entirely abnormal. It was a stark visual of the medical reality we'd been processing emotionally for months.
The doctor sat with us and started changing the picture to the next week’s scan. As the scans progressed week by week, we saw something incredible unfolding. Gradually, miraculously, the ventricles began to appear more symmetrical. The damage wasn't entirely gone—nothing could fully erase the scars left behind—but the improvement was stunning. Each subsequent image brought with it cautious optimism, a visual affirmation of Mateo’s resilience.
Yet, even more profound than the scans themselves was seeing the reaction from our doctor. Despite decades of witnessing tragedies and hardships, a genuine excitement and warmth illuminated her face. It was clear that even after years of seeing miracles amidst despair, moments like these remained profoundly special to her. Her reaction validated our cautious hope, lifting us in a way we desperately needed.
One Step Back, Two Steps Forward
Months later, we were still in the NICU. By then, we had adjusted to life there, in the way you do when you don’t have another choice. I could easily write ten more blog posts about everything that went wrong during those months—unexpected infections, procedures that delayed progress, days where we thought things were finally better only to be proven wrong. But in the end, the specifics of each setback weren’t the most important part of the story.
What mattered was that, despite all of it, the advice we were given early on proved true2. Mateo had taken serious steps back—some that felt impossible to recover from. There were days we wondered if we would ever see him move forward again. But he did. Slowly, steadily, and sometimes in ways that weren’t obvious at first, Mateo kept making progress. The phrase we’d heard so often, “Two steps forward, one step back” became something we understood not as a cliché, but as a hard reality. It wasn’t just optimism—it was the pattern of NICU life.
Over time, those small improvements added up. Mateo’s weight climbed. His feedings improved. His breathing, while still requiring significant support, was stable enough that leaving the NICU no longer felt impossible. For the first time, discharge felt like something we could talk about without immediately dismissing it as a dream. Plans were beginning to form. In a few weeks—just after his original due date—we would transfer Mateo to a lower-intensity NICU closer to home.
In that moment, it became clear to us that progress in the NICU doesn’t look the way you expect. It’s not a steady line upward. It’s not constant good news. It’s not even something you feel confident about while it’s happening. It’s a process of moving forward through setbacks, one that only makes sense when you look back on how far you’ve come.
This is the lesson that stays with me most. As we move forward in life with Mateo, it has become our guide. When we hit tough weeks or months, I remind myself that setbacks are temporary and that true growth often happens quietly, beneath the surface of the struggle. The relentless emotional rollercoaster of the NICU taught us to hold on through every "one step back," because we learned, with a certainty forged in fire, that the "two steps forward" are always on their way.
(Thanks for reading part 3 of this series! I expect to post (the final) part 4, in the coming weeks). Stay tuned!).
I learned a lot of stuff by the way. Some day I’d love to share our advice for a parent who is unfortunately placed in our position (future post!). I found the NICUparents Reddit one of the most helpful places to read about parents like us. I want to do the same they did for me.
It's important for me to note that this isn't true for everyone. Despite Mateo's miracles, this wasn't the case for all families. We had some close friends and Mateo's buddies in the NICU that were unable to make it.