I recall sitting in a private room in the NICU, a room specifically designated for the most fragile and critical cases. I remember sitting numbly in our sci-fi surroundings which housed a peculiar pod of sorts with lights and alarms sounding. I remember looking down at my belly and numbly realizing yet again that my child was no longer inside of me. He was in that sci-fi pod; he was no longer safe. He was in pain and I couldn’t protect him. I remember the neonatologist sitting with us and explaining what to expect in the NICU and then my mind went blissfully blank as he began to ramble off all the possibilities that my son may experience in the future…should he survive. My mind kept holding on to, “Nope, not my Joshie. He will grow and we will leave this all behind.”
Thankfully, Joshua did grow. He graduated from the NICU 129 days later and we couldn’t wait to get him home.
Home, for my micro-preemie looked much different than my first-born son who graced us with his presence on his due date and in perfect health. Where we were able to cuddle and enjoy parenthood with our firstborn, for Joshua, cuddling happened in-between the many different follow up appointments. We ran from Gastroenterology to Cardiology, to Neurology, Ophthalmology, Home Health Care, Early Intervention, a couple of surgeries and countless therapies and trips to the ER during RSV season. Life with Joshua was definitely different. But as we settled into our routine, things slowed down a bit and we were able to marvel at the tiny happy miracle in our midst.
Fast forward. Today, Joshua is 8-years old. I’d like to say that he has outgrown the effects of his preterm birth. I’d like to say that the moment we got him home, Poof! All signs of his early arrival disappeared, and I know for some, thankfully this is the case. For Joshua, however, I am still living in those NICU days where I tread with caution as new diagnoses are added to his medical chart and just like the NICU days, I’m finding myself floundering about as I continue to advocate for him.
So what is needed for preemie parents like myself who find themselves years out of the NICU but still floundering about?
Support: Just like the NICU days when you needed support from other parents who have already lived through the NICU, the same holds true now. Continue to find your support group. Find parents who have similar circumstances and who are dealing with the effects of preterm birth. Reach out to them often, ask questions and find out what works for them and what doesn’t. Join the Inspire Preemie Network. (preemie.inspire.com) Inspire was designed for preemie parents at every stage from the NICU to adult preemies. It is a safe environment, 61,000 family strong, led by Deb Discenza, CEO of PreemieWorld.
Be Gentle with Yourself: Mommin’ ain’t easy on the best of days but when you are dealing with a child with special needs, the worries and stress that come with it can quickly zap not only your energy but any reserve you may have stored up as well. Fill your cup. Breathe deep and light the lamp inside. Easier said than done, I know. Honestly, the question that I’ve encountered time and time again from parents is: “But how can this be done?” This is where we may need to tweak what self-care looks like. It may just be about finding small ways to restore your energy, hobbies to find your joy and remind yourself what an amazing parent you are. It may be as simple as hiding in the closet and enjoying an uninterrupted cup of hot coffee and a piece of decedent chocolate, or it could mean…and I chuckle as I type this, as I’m still learning this lesson, it may mean ASKING for help! Remember! Respite care isn’t selfish. Respite care is a way to fill your cup so that you can get back on that hamster wheel and keep rocking motherhood.
Research, Research, Research: One of the best ways to feel empowered is to find answers, look for solutions and ask questions. PreemieWorld.com is a perfect resource, not only for preemie parents currently in the NICU, but the PreemieWorld website has countless resources for post-NICU parents. Take a look at the extensive PreemieWorld Directory containing countless resources from support groups, organizations to books and products that can help you along the way.
Outcomes: Crystal Ball Health is working to create a preemie registry that will power the research to provide better patient outcomes – in the NICU, throughout childhood, and into the adult years. This registry, Preemie Crystal Ball, will help develop supportive and integrative care for prematurity-impacted families. Learn more and Join the Movement. https://crystalballhealth.com/
Yes, Premature Birth starts in the NICU, but our stories don’t always end there. The effects of preterm birth can linger and that’s okay. With support, research and resources (and a whole lot of caffeine and chocolate), though we will flounder a bit, we will have the tools necessary to help us continue to advocate and push forward. And remember! There is nothing in this world stronger than Preemie Strong…except maybe, the strength of a preemie parent!