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Micro Preemie, PDA, Long Distance NICU Support

Meet Jennifer, Preemie Parent Mentor

My preemie(s) was born at: 27 weeks
Days spent in the NICU: 107
Current age of preemie(s): 13 months
Parent of Multiples: no
Our NICU Journey included: BPD and lung/breathing issues, PDA, Piccolo procedure, ROP, pumping/breastfeeding (or inability to breastfeed as the case may be), therapeutic needs/developmental delays, HELLP, and MMH/PTSD.

Every single detail….I remember the moment I knew I could trust the medical team working for my daughter. I remember every setback and milestone achieved. I remember how long it took to first hold my daughter (almost 4 weeks). I remember the moment she figured out how to breathe and eat. I remember crossing the line in the vinyl flooring that marked the “walls” of our pod, with no wires or tubes restricting us, and walking out of the NICU with our daughter, who had a very low chance of survival from the moment she was born.

We were extremely lucky to have been at a NICU (while they have several satellite units, we were at a Level 4 with labor and delivery, and transferred to main campus shortly after) that had amazing access to support for families, but not everyone has that same access. If I can help just one family who doesn’t feel like they have support that they need, then it makes our experience that much more “worth it.”

What are 3 things that every NICU parent/grandparent should know?

-That YOU are the most important part of your little one’s team. That means if you don’t understand something, ask questions until you do, and then don’t be afraid to speak up and advocate.
-That sometimes the NICU can be terrifying and feel endless, but it’s also your home and can be a place of immense joy, so work through the tough and celebrate the happy!
-That it does not matter if your experience is 1 hour or 1 day or 1 week or 1 month or beyond; your experience is your own and there are services and supports available to you to help.

Micropreemies Issues

The micropreemie journey can be like walking through a mine field for both preemies and their families. The moms and dads of the earliest babies celebrate not only the milestones, but also the minutes. Every hour in the early days is hard won. Every milestone met, a triumph. A micro-preemie parent’s courage and resilience may be tested to the very limits. The struggle may feel never-ending, but it’s important that parents know they are never alone.