The Joy And Fear Of Bringing Your Micro-Preemie Home

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My Son Was A Micro-Preemie, And This Is How He’s Changed Our Family

Amanda Hoffman

“You’re complete. We’re taking you to delivery.”

Two and a half years later, these words still haunt me. When I close my eyes, I can still see the scene vividly. I was 26 weeks pregnant – not even into my third trimester yet. After being admitted for an unexpected onset of premature labor, the doctors had been hopeful they’d be able to stop my contractions with an intravenous drug called magnesium sulfate – which made me feel like I was being burned alive from the inside out.

But it hadn’t worked. I’ll never forget the measured calmness in the doctor’s voice – as if she were both trying to reassure me, and herself, that everything would be okay. We both knew that was a giant question mark.

Twenty minutes later, Emmett was born, weighing just 860 grams, or 1 lb. 14 oz. His first APGAR score was a 1 (on a scale of 1-10). He was barely alive, but he let out a tiny mew of a cry and I knew instantly he would be a fighter.

We spent a little over three months in the NICU, eventually coming home two days after Emmett’s original due date. The doctors had told us they expected him to stay until his due date, and so by those accounts his NICU stay was virtually textbook for a micro-preemie.

But it turns out, “textbook for a micropreemie” is anything but textbook when it comes to motherhood and the human psyche, and what no one tells you is that the NICU experience doesn’t just disappear once you finally bring your baby home.

For some babies that means physically bringing aspects of the NICU home – many babies come home on oxygen or an apnea monitor or a feeding tube. For some babies that means significant cognitive or physical delays, many of which don’t manifest for months, or even years. We escaped relatively easily, all things considered, with some lung scarring and breathing issues that present and are treated much like asthma, some swallowing issues requiring us to thicken all his liquids, difficulty gaining weight no matter how much he eats, obstructive sleep apnea that required surgery when he was a year old, and some minor issues with his stance and gait that we’re correcting with ankle-foot orthotics. And yes, that’s considered escaping easy.

One of the first times I became aware we hadn’t left the preemie plight in the NICU was the first time a stranger asked me how old he was. He was more than three months old, but looked just like a newborn at one week adjusted (adjusted age in preemies is the age the child would be if they’d been born full-term). I don’t remember exactly what I said, but I remember rambling and feeling like I’d just given way too much information to a stranger who was just trying to make pleasantries in the elevator. Her look of shock and then pity made me feel like a freak show.

From then on, I found myself panicking slightly every time I saw someone approaching us in public, because for some reason when you have a baby everyone needs to know how old they are. I eventually learned to triage the situation, and if I was unlikely to see the person again I’d just lie and tell them his adjusted age. Other times I would give his actual age and hope they wouldn’t comment on how small he was. Sometimes I’d give the full explanation, which, depending on the day made me feel either proud or ashamed.

One of the more taxing remnants of our NICU experience has been extreme hypervigilance. Every new mom will admit to watching her new baby sleep out of fear they’d stop breathing. But when you’ve actually seen your baby stop breathing, that fear feels a little too real. Emmett slept with a breathing monitor for the first two years of his life – not because the doctors prescribed it, but because I needed it to sleep.

Today, feelings of guilt still consume me. No matter how many times I’m told otherwise, I’ll never not feel responsible that my body failed him. Birthdays are challenging. Most parents will tell you the day their child was born was the best day of their life. But the day Emmett was born was my worst. I’ve never been one to hold onto romanticized ideas around pregnancy or birth – let’s face it, childbirth is messy, undignified and hurts like hell. Yet I’m still mourning the fact that I missed out on the entire third trimester, and I was cheated out of that beautiful moment the doctor places your newborn baby on you. Emmett wasn’t even stable enough to be held for five days. Birthdays are bittersweet, marked by polar emotions: intense pride for how far he’s come, but also a sobering reminder of the day I failed to keep him safe and we nearly lost him.

Having a preemie and an extended NICU stay is something (thankfully) few parents can understand. Not many people have watched their child fight for their life, watched them struggle to do things most babies do naturally — like breathe, eat and maintain their body temperature. But over the years as I’ve connected with other preemie parents, I’ve found everything I’ve described – which I’ve only recently come to recognize as PTSD – is actually very normal for what we’ve been through. These feeling may not ever go away, but through preemie parent support groups and just the act of talking or writing about it, I’ve learned to acknowledge my feelings as valid, and move on.

For other preemie parents reading this: I get it. I know your struggle, and I know your strength. Our babies likely had many similar, and many different challenges. Yours may have been born earlier than mine, or later. Yours may have more lingering issues, or fewer. You may be handling the trauma better or worse than I am. But regardless of the specifics, I’ve come to learn preemie parents tend to have more in common than not.

We don’t know what the future holds for Emmett. By all accounts he is doing remarkable for a 26-weeker – he’s certainly surpassed most of the doctors’ predictions. But there are still things we may not uncover until he’s much older. The unknown is daunting, and it reminds us we’re still riding this roller coaster. But he’s come so far already, and every challenge we’ve had to overcome just makes me that much more proud of him.

His early start will always be a part of his story, but I hope it remains a story of perseverance and overcoming the odds. This experience has forever changed our family, but in many ways it’s made us stronger. He has made us stronger.