Things Preemie Parents Don’t Want You to Know (But You Should..)

by Kristina Mulligan

Life as a preemie parent is a journey like no other. It’s filled with so many obvious difficulties, but also various hidden struggles that are unexpected and that people may not consider. It’s an ongoing battle with many stages throughout a parent and child’s life, mentally, emotionally, and physically. Here is what you should know, being in the support system of a family with a preemie:

1.      We have trouble accepting help. 
We missed out on those newborn days. A lot of parental responsibility was revoked from us for a period of time. This journey that we stumbled into was not one that we chose. There are so many things that we feel that we must do ourselves all of the time because we missed doing them in the NICU days including, but not limited to: laundry, diaper changes, feedings, rocking, snuggling, wiping tears, and bathing. You mean well when you offer your ability to do these things, but we sometimes feel that we can’t say yes. We’re taking our time back, just be patient with us. Your kindness doesn’t go unappreciated.

2.      We’re lonely. 
Due to medical restrictions, scheduling requirements, or simply pure exhaustion, preemie parents rarely have time for interaction with other adults. People in general are just busy and adulting is so hard, but parenting a preemie adds another layer of complication. We miss you, we really do, and every single time that you reach out or stop by or even tag us in a relatable meme is so appreciated. It helps us remember what it’s like to be seen when we feel so forgotten.

3.      We’re scared. 
Our parenting journey began with a crash course on how to keep our baby alive: what beeps require attention, which are absolutely critical, and which just result in closer monitoring, how to perform CPR on a baby that pretty much fits in your hand, wire-detangling without detaching, along with other terrifying items in the syllabus. As much as we try, and believe me we do, it’s impossible to fully come back from that. We’re constantly living in fear of germs, illness, diagnoses, and the next thing that will try to take us down. We accept being called paranoid because we know the alternative of letting our guard down. 

4.      We’re struggling financially. 
Did you know that they call preemies million-dollar babies? By the time a baby is discharged from the NICU, the total of all medical bills is potentially millions of dollars. This doesn’t include the dozens of doctors and specialist visits on the calendar at any given time, any medications or supplements prescribed, or any medical equipment. Oh, and kids in general are just expensive! Bottom line: we scrounge, pinch pennies, and do whatever we can to stay afloat. This may mean that we must decline invitations to activities which involve spending money, even if it’s just the cost of gas. It’s tough, but we try our very best.

5.      We’re tired. 
Parenting is exhausting, I think we all can agree, but I’ve never felt a tired like NICU-tired. I was so fatigued that I felt it in my bone marrow. It ran deep. Even now, my brain is still in survival-mode – a constant loop of “what-ifs” and “how to survive,” and my adrenaline pumps until I crash. But no matter how tired my body gets, even if I feel like I haven’t bounced back in these past two years, I’ve never been as tired as I was in the months that my baby was in the NICU. As exhausted as we are, however, we’ll never say it out loud. We’re trying to fully embrace the time we have.

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About The Author: Nick Hall

Nick founded Graham's Foundation in memory of his son, whom he lost to prematurity. Graham's Foundation supports parents through the journey of prematurity and is committed to making sure that no parent goes through that journey alone.