A NICU Parent’s Social Media Survival Guide

January 8, 2013

NICU Social Media Survival GuideThere’s just no other way to say it. Social media saved my sanity during my son’s NICU stint and subsequent hospital stays.

A few months prior to his birth, my husband bought me a smart phone. Prior to that, I didn’t even know how to text. True story. My phone didn’t take photos and my contacts included three people: my husband, my brother and my mom. Even truer story. We had no idea just how valuable that super de-duper smart phone would be for me just three months later. I’ll come back to that in a moment.

Preemie Blogs

We had a family blog, but before our son’s premature birth, we used it primarily as a digital scrapbook for friends and family. That focus completely changed when our son was born. Not only was it a wonderful way to keep everyone updated on his progress and setbacks, but it served an even higher purpose – therapy for me. I never dreamed that writing about his birth and subsequent challenges and joys would be, dare I say, healing for me. During one of my internet searches I came across a heart-changing website, founded by fellow PreemieBabies101 Blogger, Elaine Jones. After submitting my son’s NEC story, Elaine contacted me directly. For the first time, I felt like I was not alone. There are no words to describe how her simple act of reaching out affected me.

After seven more hospital stays and a six surgeries, I had an even greater epiphany. How did NICU parents before me walk this road without social media? In a place notorious for isolation, I felt I had a community of support at my fingertips.

How blogging might help you. Whether you choose to keep your blog public or private, writing down your thoughts and feelings can be therapeutic. It can also help you keep track of your journey and see how far you and your child have come.


I’m not sure I ever closed my Facebook app. There, I posted photos of my son, shared my biggest frustrations and reached out to people when we needed help. What I never expected was to have people reach out to me. Friends I hadn’t heard from in years shared their own NICU stories. It was humbling and empowering to hear how others struggled and persevered. I was touched that so many people shared a portion of their life so freely and openly with me. It was through one of those Facebook encounters, that a friend introduced me to another NICU mom in the area. Bea and I share some pretty hilarious texts and see each other often at our sons’ therapy sessions. That connection has been invaluable. In addition, a group of preemie moms in my area created a closed group on Facebook. There, we vent, we laugh, we schedule monthly dinners out and we support one another. If you haven’t already, you can “like” the PreemieBabies101 Facebook Page and immediately connect with nearly 5,000 other parents, walking the same prematurity path as you.

How Facebook might help you. If you have needs at home – carpool, meals, playdates, therapist/specialist recommendations, etc. – Facebook can instantly connect you with friends who have walked that path before you.

Preemie Organizations

That smartphone I came to love, allowed me to search the Internet and it was during one of my searches I came across Hand to Hold, a non-profit based in Austin, then in its infancy. I called the founder hours after reading a newspaper feature that appeared in our local newspaper. Kelli and I spent an hour on the phone that first night. She listened; I cried. I had finally found a real-life person who understood – in an instant – my biggest fears. She has become one of my closest friends and one of our son’s biggest champions.

How Hand to Hold might help you. PB101 is the parent blog for H2H. We are a group of parents that desire to make another preemie parent’s life just a bit easier. If you’re in need of a mentor, get in touch with them.

Twitter, YouTube, Pinterest and Instagram

I wasn’t introduced to other social media outlets, like Twitter, YouTube and Instagram, until months after our NICU discharge, but those have also been instrumental in helping me cope, decipher hard diagnoses, laugh, document and relish in my new role as a preemie mom. Some of my virtual friends on Twitter are now real-life friends. Yet, I still share a strong connection to my virtual friends, as well.

Through YouTube, there is a plethora of resources, everything from RSV season and preemie nutrition, to dealing with PTSD. Hand to Hold’s channel is full of great resources.

Pinterest is more than pretty mantels, creative kids’ crafts and delicious recipes. Did you know that Hand to Hold has nearly 30 boards and more than 1,300 pins full of things to make you laugh, cry and settle in to your new role as a preemie parent?

How other social media outlets might help you. Through a quick Twitter search, you can find thousands of folks who share your experience (we are @preemiebabies; or follow Hand to Hold at @ATX_HandtoHold). Pinterest boards and YouTube channels allow you to find answers or see a creative way to approach a difficult challenge or situation. I’m betting there’s a social media outlet, just for you.

Never, in our lifetime, have we seen such power to connect with people who share such a strong connection to an intimate moment in our lives. For me, prematurity took my “perfect life” and turned it on its head. Social media has allowed me to not only heal, but to walk with others on this uncertain path. My empathy is greater. My desire to help compounded. My heart is more compassionate. And, my ability to love immeasurable.

If you find yourself feeling alone, frustrated and in need of some hope, I encourage you to log on to social media and find your place, your voice and your new community. Do you have a favorite social media outlet? If so, we’d love to know what it is. See you online!