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Challenge: NICU Parenting

What It Means to Be a Preemie Parent

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This essay is for all the fellow preemie moms who share this journey. It’s also for the doctors, nurses, and early intervention specialists who know and love our preemies like their own babies. We love you, and we thank you.

I never expected to have preemie babies (or babies, plural, for that matter). With my older girls, I had easy full-term pregnancies, where I sailed past each viability marker without a care in the world. I was, in a word, blissfully ignorant about premature birth and pregnancy complications.

All that changed with my triplets, who were born at 30 weeks and 4 days gestation. I was suddenly thrust into the world of feeding tubes, apneic episodes, and kangaroo care. Over days, weeks, and month, I learned so many things all preemie parents know to be true. Here’s a glimpse into that world, and what it means to be a preemie parent.

  1. It means always referring to the number of weeks and days when you refer to your baby’s gestational age, because, as you are acutely aware, every day in the womb matters.
  2. It means delivering your baby and holding your own breath while you wait to hear her cry, because you know that means that her lungs are strong and working well.
  3. It means meeting your baby for the first time in the NICU, where she will be hooked up to leads, monitors, and an IV. Despite the equipment, you will see your tiny baby and know: she is mine, and nothing else matters.
  4. It means not holding your baby for a day, days, even weeks after delivery. When you finally do, joy and relief surge through you in a way you hadn’t expected. You snuggle in together and marvel at the fact that your baby is here, and, even though she’s small, she’s ok.
  5. It means not taking for granted that your baby will know how to breathe, eat, and maintain her body temperature. Each day when you arrive at the NICU, you hope for a good report and forward progress. You know every step involved in your baby’s journey to exiting the NICU, and each day you hope they make baby steps towards the door as they remove one breathing device for another, take another bottle, or move to an open air crib.
  6. It means helping your amazing NICU nurses dress your perfect little baby in baby clothes that would fit a tiny baby doll.
  7. It means being intimately familiar with scary medical words like apnea, bradycardia, nasogastric tubes, heart murmurs, and cerebral bleeds.
  8. It means leaving your babies in the NICU each day and heading home without them. For many moms, this is heartbreakingly hard.
  9. It means pumping milk alone, in the middle of the night, and carrying it all to the NICU on ice in dozens of tiny labeled containers.
  10. It means cheering on your baby’s progress with your beloved team of NICU nurses and doctors, who truly treat your baby like their own.
  11. It means holding your breath when your baby does her carseat test, because you know passing that test is the one thing standing between you and your baby coming home from the hospital.
  12. It means that “coming home day” actually involves going back to the hospital to pick up your baby when she finally leaves the NICU.
  13. It means feeling anxious about taking care of your precious preemie baby once she's finally home with you, even if you’ve been a parent to full-term newborns before.
  14. It means fiercely guarding your baby’s health, whether that means limiting visitors or using gallons of soap and hand sanitizer. You know that RSV or the flu will land you back in the NICU, and while the doctors and staff there are quite lovely, you do not want to go back there.
  15. It means calculating everything according to actual and adjusted age for their first two years of life, and explaining these terms to others countless times over. (Actual age is your baby’s actual age, whereas adjusted age is how old your baby would be if she were born full term. So, for example, my babies’ actual age is almost 17 months but their adjusted age is 15 months).
  16. It means understanding that your baby may not hit developmental milestones until her adjusted age or even later. It also means worrying about when you’ll know she's ok, when she's "caught up."
  17. It means wondering when your baby will ever grow so much that they eventually get ON TO the growth chart, because they were born so small. When she finally does, you smile and feel so relieved.
  18. It means celebrating BIG when they hit each developmental milestone.
  19. It means instant solidarity with other preemie parents. You may face different challenges, but they really understand your stresses and joys.
  20. It means knowing that you are one of the lucky ones. You have friends whose babies arrived too early, who lost their babies. You feel your friends’ pain deeply because you know your friends’ fears, wishes, and dreams for their babies, and you know it’s simple luck that your babies are here and theirs are not. You know that life is unfair that way so you mourn their losses with them.
  21. It means being moved to joyful tears when you hear a fellow preemie mom delivered her babies and they’re doing well in the first few days of life, which are so critical.
  22. It means never taking for granted that your baby is here, and is a truly a miracle. Every. Single. Day.
  23. It means staying friends with your NICU doctors and nurses, who share your joy in your baby's progress.
  24. It means being a little nervous when your team of specialists and pediatrician look at you and smile, and say: “they’re all caught up, and they’re exactly where they need to be,” before telling you you’re officially on your own with your “normal” toddlers.
  25. It means forever referring to your babies as preemies because you can't forget what they looked like when they were just 3 or 4 pounds (or less), and you can’t help but get teary thinking about how far they’ve come.

And for me, today—right now—it means smiling as I watch my three precious preemies talk, laugh, and play in the backyard. No matter how big they get, I'll never forget how far they've come, and I'll never forget what fighters they are. They'll always be my precious preemie babies.


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