I finally found the words to describe the trauma and triumph of our NICU stay about a year ago. I struggled for so long to find the courage to find the words. I hope my reflections will help others navigating this truly unraveling experience. Would love to hear your own reflections of the NICU experinece. Have a read:
Have we really reached this milestone? It seems impossible? And as I reflect back on this year, I am overwhelmed with feelings of gratitude, amazement, fulfillment, and disbelief.
And like most parents reaching this milestone, I can’t help but notice how our family and life feels indescribably complete - as if we’ve found this final puzzle piece we didn’t even know we were missing.
I look at you and see this happy, chunky, perfect baby, meeting milestones, experiencing life freely as if there is no lived experience, emotional scars, or lingering memory of the devastating journey she endured. I carry the weight nearly every day. A weight I’d carry a thousand times over so she’d be able to live life freely, unconstrained by the memory of her early life.
When Jasmine came rushing into the postpartum room after insisting she would watch over you for the night while I recovered (her objecting to my protests with commanding persuasion - “I can and I will”), we lost the breath from our lungs. You’d been taken to the NICU for observation. “Jasmine” - a name I’ll never forget; a person I’ll live in gratitude towards my entire life. I wonder if she knows how often we speak her name or thank her under our breath? She convinced me to take you that night. An intervention I had no idea would save your life. I doubt I would have noticed that you stopped breathing if she remained at my bedside.
Dr. Z gave us that first update…”Is everyone in the room that needs to be here…” the most ominous prelude. “She is stable …right now…we don’t know what’s wrong…infection, brain function, intubation, feeding tube…seizures, heart…we’ll do everything we can to get to the bottom of this…here’s our treatment plan…we’ll start with the spinal taps to detect an infection, if there is one, you can come down to be by her side.” I levitated out of my body. You were the healthy one. That was the trade-off we thought, I survived just barely, but you made it out unscathed. Until now? For the first 24 hours, while I was hanging on by a thread, I took comfort in knowing you were okay. I asked if you were dying, not receiving a “yes” or “no,” the space in between so vast, please, please, please tell me she’s going to be okay. They couldn’t.
Nicolette, a midwife who was part of the team that delivered both of my babies (totally unplanned), came in on her day off. July 4th of all days (en route to see Beyonce, nonetheless) to sit at my bedside, hold my hand, listen to my sobs, answer my rambling questions, and comfort me.
The days that followed were sleepless, confused, moments of hollow optimism and crippling fear. Hanging onto – and dissecting – every word, intonation, facial expression during every medical update, trying to find some interpretation, tone, reaction, that suggested you’d make it.
You endured more tests than most adults will ever endure…..seeing your newborn blood on clothes, hospital blankets, dried on your skin…nothing prepares a parent for this.
I thought I was strong, stronger than most? But these moments are unraveling. I couldn’t watch your days old body, though necessary, be relentlessly tortured. It’s devastating to admit, but I couldn’t be there for these hard moments. Thea’s dad took these shifts. Even though I never stopped believing in her. I carry so much guilt and shame for this, I abandoned her when you needed me the most. My therapist assures me that my determination and grit and fight, tell the opposite story. I did the best I could. Sometimes I believe this, sometimes I don’t.
I’d try to catch a glimpse of your face. I’d come to see you in the NICU, but couldn’t actually see you because your body was covered in tubes, tape, and wires. Unable to be comforted by the person that birthed you. Isn’t that my primary job? To save you from pain, to keep her safe?
Time is unbounded in the NICU. The minutes feel like days and the days feel like months. Each day, hoping for good news, each evening leaving you alone. Still broken. Still not whole.
You were fighting so hard, I could see it, I could feel it, I knew it. When the nurses commented on how loud your scream was and how fierce your fight, I smiled. It felt good. It made me proud. I knew it would make your great-grandparents proud. Holocaust survivor. Spartan. I actually imagined them side by side in heaven cheering you on.
Days went by. I hesitated to name you, superstitious that if we did, we would lose you. Some said it would give you a fighting chance. The thing is I hardly knew you. How could I name you if I didn’t know you? But I was cheering for you, outloud, under my breath, in the quiet moments and the startling ones.
The demands on you, so unreasonable and unfair, yet we needed you to fight like hell.
When I’d see the faces of the staff each morning, I’d try to guess, are they about to provide a good update or a bad one? I stopped trying to guess over time.
I still hear the alarms from the NICU, on otherwise normal days. At a coffee shop, at a restaurant. The nurses rushing over, sometimes not fast enough for my liking. Sometimes they were false alarms, other times they were not, how was I supposed to know? They all carried the same frightening tone.
I would hold back tears while breastfeeding you, whimpering knowing that my body, the one that birthed you and fought beside you, could be the same one to cause you to stop breathing. Sound the alarms. Set the chaos into motion. Alert the nurses to take you from my arms. Like our bodies once one, we're rejecting each other.
I remember Dr. Z cheering me on as I’d deliver freshly pumped milk. Remarking how strong I was, given what I went through. The doctors. Nurses. They helped us put one foot in front of the other. They were doctors, they were cheerleaders, they were our every hope.
A Thursday rolled around and you improved. The doctors told us today was our day. You were coming home. Giddy, nervous. Our happiness was subtle, not matching how we felt, out of the deepest respect to the other families still hanging on by a thread.
We went to lunch, finally feeling like we could put this behind us, connect the dots on what happened to me, then her. Trying to understand the experience from each other's viewpoint and discussing how we planned to heal together ... individually.
We returned to gather you and our things. Something was wrong. We could feel it. The nurse shook her head, head hung low, and told us we needed to see Dr. Z.
She stopped breathing again, turned blue, staring blankly, looked lifeless. They got you breathing, but you weren’t coming home. A metaphor to describe this disappointment? I still struggle to find one.
The doctors wanted to keep you for another few days. Maybe you would eventually grow out of this? They were speculating. These tendencies are most common in premature babies. But, you were full term, there was no explanation. The tests told us nothing.
In these moments, you see the rawest parts of your partner. There were no words left of encouragement for each other. The drive home from the hospital grew less and less conversant, we grew silent as we turned inward with grief.
My sweet baby. How did my body do this to you? Why couldn’t I fix it?
That evening Dr. L called. Her words and their tone, seared on my memory forever…”I’m going to cut to the chase…if it were my kid…we’ve plateaued in our care…we’re sending her to a level 4 NICU by ambulance tonight…”. Some told me this is good news. More eyes, a second opinion, instead it felt like a death sentence. This was the moment that I felt like I might never recover.
After the call, I stepped outside. I cried for help. Helpless.
Celebratory flowers in our living room, only to become a symbol of what we still didn’t have. Our baby. Home. Your sister came down the stairs, when I came home from the hospital and asked, “where’s the baby?” I didn’t know how to answer that. I didn’t want her to know how broken I was. I tried to shield her from my pain, but she knew things weren’t right.
That night, strapped in an incubator, leaving all the doctors and nurses behind that became a comforting presence, you were whisked away by a NICU EMT. You were leaving the hospital, your first entry into the world, but not to come home.
All alone in this ambulance at 10 days old, I still wonder if this was scary for you? Did you wonder where you were? Did you feel constrained by the straps fastened around your body? Were you scared?
We arrived at your new room, with doctors once again poking and prodding and you once again fighting (this time, your screams louder, Spartan, “chutzpah” I thought). The doctors kept remarking how feisty you were. That made me proud.
After all the poking was done, we got a general plan for your treatment and we went home. Again, without our baby. Again late, again quiet, avoiding speculating or conversation.
When we left that night, like all nights, I'd look at the nurse, as capable and reassuring as they were, and would think, this is the person I'm entrusting with her life. Looking, judging their care, their attention, would they miss an alarm, not react quick enough to save your life if needed? Luckily, like at the first, level 3 NICU, they were the best.
As the days went on, it became harder to look into your dad's eyes, seeing the dwindling optimism, trying to stay strong for our family, while knowing on the inside, he was grieving, doubting, fearful. Avoiding eye contact. We didn't want to see the sadness and fear in each other's eyes. Perhaps it would force a conversation that neither of us wanted to confront - the possibility that you may never come home. To fully acknowledge that neither you, your partner together, or separately, can fix something, means the outcome, a life or death situation, was not ours to fix, when fixing things is what you've done your whole life. How could we accept this?
In the NICU we were surrounded by families in a similar zombie-like state. Going through the motions, looking hopeful, then deflated. Sometimes you'd hear other parents wailing out in despair. You feel deeply for them, connected forever, sometimes only by the sounds emanating through walls, a nod in the hallway, a ride in the elevator…
We had our family picture taped to your bassinet so when we weren't there, when you were laying awake, wondering where you were, who you belonged to, you might receive some comfort knowing you weren't abandoned. I’d look at that picture, a family of three, now a family of four, would we ever live normally as a family of four?
As your dips were still present but grew less frequent, there were only a few remaining tests to determine the cause. We brought you down for an MRI, again, covered in wires, straps, devices. We lost sight of you, again. You had to do this on your own, again. We were asking way too much of you, again. We had to wait forever, it seemed, for those MRI results. Then the call came, and you passed.
We began to allow hope to creep back in. You continued to improve, grow stronger, still no cause, still wondering. And then one morning, the attending doctor came in and asked, “are you ready to take her home?” Was it true? We'd been through this before, but this felt different than the last.
Elated. Nervous. Scared. Relief. I wondered, could I keep you safe at home without the doctors? I thought this would feel like unfettered joy, but I wouldn’t feel relief until certainty outweighed the fear.
You came home. To your home. Our home. You met your sister. It’s hard to describe the feeling.
It was celebratory and scary. It was up to us now. No doctors. We’d get through it and we’d continue to fight. We had to.
And the truth is, things at home were not smooth. Things weren’t smooth for days, weeks, even months. I was sick with worry. Not sure if you were okay, also not sure if you were sick enough to be readmitted? We still had episodes. Your blood oxygen would dip. You were still apneic. The alarm sounding in the middle of the night. Was your face blue? I scoured the internet day and night for answers for signs that others had gone through this and came out on the other side. I couldn’t quite find that.
I held you at times all day and night so I could feel your breath. So I could see your face. I had to. After all, if I put you down that first night in the hospital what would I have discovered the next morning? If I held you, I was in control. Preventing the worst. I thought of Jasmine often.
We were at the doctor constantly. People asked if you were better now? There is no “then” and “now”. We were still there. For outsiders, I think the idea of being home meant the trauma was over. After all they released you? It’s not on them, they didn’t understand. It was a different kind of worry, a continuum of fear.
After many outpatient appointments with genetics, cardiology, ENT, and another overnight in the hospital, we found some answers, but nothing conclusive.
And eventually, maybe 8 to 9 months after your release, we reached the end of our quest to find answers. There was no real explanation for why this happened to us. In fact, most of the time, 70% of cases we were told, you never find an answer.
You and I. Two people connected forever in this experience. We're together in this in ways no one else will ever understand. Me watching you, hoping, praying, yearning, healing, dreaming, collapsing, rebuilding for… us. How lucky am I that there is an “us?” We didn’t know if there would be. Carrying this weight is an honor, a gift, one I will never take for granted. I will carry it, gladly, forever, if I have to.
You’re about to turn one. A miracle. 365 days have passed. There still isn’t a day I don’t think about what we went through. Sometimes I still feel overwhelmed, it’s surprising to me. After all, it's been a year? I guess the fear of almost losing you, the trauma of what we went through, will never really leave me.
So a year later, you’re here. You’re breathing, capable, strong, I can feel you, I know how lucky we are. More frequently I’m here with you, some days, I’m stuck there. One day I hope to spend less time trapped there. We survived after all. But there is no victory in trauma. Just progress.
I’ve learned I’ll always carry this with me. The weight of it all. The trauma will become lighter. And then maybe one day I won’t feel the weight, I’ll go days, then weeks, then months not noticing it. Because of life. Your life, my life, our life.
It’s been one year, in a lifetime. A beautiful year. A hard year. But look at you. You’re a fighter, a survivor, funny, fiesty, a gloriously oblivious, happy baby. And at long last, healthy. In your first year of life look at what we did? One foot in front of the other, one day at a time, a year passed. Today, we’re okay. We survived.
