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Micro-preemie, IUGR, ROP, Early Intervention/ CP

Meet Noelle, Preemie Parent Mentor

My preemie(s) was born at: 26 weeks
Days spent in the NICU: 97
Current age of preemie(s): 6
Parent of Multiples: No
Our NICU Journey included: Preeclampsia, HELLP Syndrome, hospitalized bed rest/monitoring, deciding whether or not to terminate the pregnancy, IUGR, low amniotic fluid, reverse placental flow, micro-preemie, breathing support, PFO, FTT, ROP (Stage 3) and Plus Disease (laser eye surgeries), bilateral hernia repair, hypospadias, pumping, advocating for our son, switching NICUs (level 3 to level 4), balancing the NICU/preemie with a career, life after the NICU (Early Intervention, developmental delay management, sensory processing challenges, reflux, cerebral palsy, impacts of preemie journey on marriage), pregnancy after preemie

For those of you feeling like the NICU rollercoaster will never end or that the journey is unbearable, take comfort in the fact that it gets better. Six years out of the NICU, when asked “What do you remember most about your NICU journey?”, the first thing that comes to my mind is gratitude. Thinking about the NICU instantly conjures feelings of appreciation and joy, especially for the doctors, nurses, and therapists who supported us and made the hospital feel like our first family home.

In contrast, when asked about my struggles in the NICU, I need to look back at my notes for the list of medical concerns and scares we endured. Eventually, the long hours, days, weeks, or months of being obsessed with grams, oxygen levels, and medical acronyms will fade away. You are then left with gratitude for having such an amazing child who overcame something seemingly impossible, for the support you are given (medical, family, and otherwise), and for every day you have been able to wake up and see your child.

I am excited to be a mentor for the Graham’s Foundation so that I can provide a source of hope, which I so desperately needed and searched for during my journey. Also, at so many points along the way I wished I knew someone who had already gone through what I was experiencing and could tell me what it looked like ahead. I would love to be that person for those nearer to the start of the path. I want to hear what you are going through, to remind you to have hope and to trust your instincts, and to let you know that what you are going through is scary, but you are not alone.

Three things I want every NICU parent/grandparent to know:

  1. HAVE HOPE! Allow your heart and mind to believe that a good outcome is possible.
  2. BE GOOD TO YOURSELF because you deserve it! You are carrying a tremendous load and your journey can often feel impossible. Being good to yourself will help you to fight alongside your baby.
  3. TAKE NOTES. This might seem unimaginable right now, but one day this will all be a memory. You will appreciate having notes to look back on milestones, quotes from people, comments on how you felt, or anything else you want to write down.

For me, in the NICU, during a time when I felt so helpless and out of control, keeping a log of my son’s weight and medical information gave me a daily ritual that I could rely on. Along those lines, a NICU nurse gave me the advice of buying a stuffed animal and taking regular pictures of it with our baby. We did this weekly in the NICU and monthly (to this day) after going home. All of these things will help remind you how much you and your baby overcame and what a miracle s/he is!

Micro-Preemie Support

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.