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Necrotizing Enterocolitis (NEC) in Premature Babies

Meet Laura, Preemie Parent Mentor

My preemie(s) was born at: 24 weeks
Days spent in the NICU: 228
Current age of preemie(s): 5
Parent of Multiples: Yes
Our NICU Journey included: Raising a survivor twin, NEC, hearing loss, g-tube and feeding, special needs advocacy, allergies to foods and medications, navigating multiple specialists post-discharge.

Our motto through our son’s NICU stay became, “Two steps forward, one step back.” When I finally accepted that his NICU stay was going to be a journey – one that included NEC – life became a little easier. We weren’t going to win the race overnight, and that was okay. As we were going through our journey, there were times when it never seemed like we would leave the NICU. It felt like the days were years long. But here we are now – years after leaving the NICU and having developed our own “normal.” I never thought these days would come.

I want to connect with preemie parents who feel alone and overwhelmed so they can take comfort in knowing there is someone who has lived through the journey they are experiencing. Being in the NICU can be very, very lonely. Coping with NEC is a nightmare. Knowing there are other parents who have walked the same path can be such a comforting feeling.

Necrotizing Enterocolitis (NEC) in Preemies

NEC is a gastrointestinal disease that all parents of preemies learn to fear beginning in the earliest days of the NICU journey and then for months after birth. It can take the life of a preemie baby within hours of its discovery and doctors still aren’t sure why some preemies contract it while others don’t.