Meet Amber, Preemie Parent Mentor
My preemie(s) was born at: 27 weeks
Days spent in the NICU: 165
Parent of Multiples: Yes
Our NICU Journey included: Multiples, twins, feeding challenges in the NICU, feeding challenges at home, planned surgery, unexpected surgery, long-term NICU stay
Our NICU stay was almost a given because it was a twin pregnancy, but I had no idea it would be so long! We were expecting to be in the NICU for a few weeks at most, but ended up making the NICU our second home for months! We were fortunate to live just a few miles away, but the time spent away from home was still hard. I witnessed so many different experiences in the NICU – and watched with tears in my eyes as families were discharged while we were “stuck”. There were many times I sat silently crying behind the curtain because my heart was breaking that my children were having to fight so hard. The day we were finally able to leave as a complete family (at our second discharge) was the happiest moment of our entire adventure.
I became a Graham’s Foundation Preemie Parent Mentor because I was extremely fortunate to develop a network of other twin families in our NICU, and knowing that they understood the struggles we were having helped me feel less alone and isolated. It truly is a different reality with a unique set of struggles. Having someone to support you and listen while you vent your frustrations, fears, and hopes for your family can change your outlook. I want to be that person for someone and to help make their struggle a little less scary.
Amber’s tips for new NICU parents:
- The NICU can feel like it is part of an alternate reality that exists parallel to the “real world”. There is a weird time warp that occurs and you start to lose track of the days, even if you are counting each and every one of them. You will likely feel some sort of disconnect from your regular life and routine that can’t really be described unless you’ve also lived through it.
- Everyone will tell you to take care of yourself and take breaks. Yes, this is important for your health and mental wellbeing. Yes, it is difficult to do and may result in feelings of guilt or any number of other emotions. You are absolutely allowed to feel any and all of those things. Be kind to yourself, and do what feels right to you. And when you can, take a break. Even if that break is just taking the scenic route to a different restroom! It is so hard to leave your child, but just tell the nurse that you’re taking a short break and you have your phone with you. They will call you if there is something you need to be back for.
- Every NICU journey is different, and every NICU journey is hard! It doesn’t matter if you’re there for a day, a week, a month… It’s almost never a planned stay, and even when it is, there will be surprises constantly. It’s important to find your support system to manage the moments and the after-effects of the entire experience.
Preemie Multiples in the NICU and Beyond
Multiple birth and prematurity often go hand in hand, so many preemie moms and dads are also parenting twins, triplets, and quads. While all parents of preemies face incredible challenges, multiple birth can bring with it unique struggles and joys. Connecting with other parents of multiples is so important when it comes to coping with prematurity and then thriving at home.
The resources on this page are just for parents of preemies who’ve been blessed with twins, triplets, or more. Check out:
Feeding Issues in Preemies
Premature infants and children are more likely to encounter difficulties with feeding and growing than those born at term. From a diagnosis of failure to thrive to suck-swallow-breath coordination to coaxing an unwilling toddler to embrace solids, prematurity makes what should be simple-eating-into a challenge. Parents of preemies may have to navigate a confusing world of feeding tubes, specialty equipment, and therapies just to help their children.