Going Social to Connect More NICU Families
I have a confession – I don’t tweet or yelp, and I don’t have a clue how to use Pinterest! I am what you call, a late adopter! When I founded Hand to Hold, I did not have a laptop, a smart phone or a texting plan. I drug my feet for years before creating a Facebook profile and still question the need for this time-zapping application in my life. It is somewhat shameful that I have a degree in Communications yet shun social media at every turn. Hand to Hold’s extensive online presence is the result of an amazing Communications Director and progressive staff who ensure we are utilizing every opportunity to connect with NICU families to provide ongoing education and support.
Today, social media plays an important role in the lives of people facing almost every diagnosis and physical/emotional challenge from cancer to Post Traumatic Stress Disorder to infertility. A 2012 Survey conducted by Pew Internet found that 72% of internet users say they looked online for health information within the past year. And 25 percent of adults have read someone else’s commentary or experience about health or medical issues on an online news group, website or blog. It's clear that families use social networking to not only research health information but also to find others who are going through or have gone through the same experiences. That's why it doesn't surprise me that some have gone so far as to suggest the online patient communities are better than in-person support groups.
Hand to Hold’s social media analytics reflect this trend. Our comprehensive Website handtohold.org welcomed more than 100,000 unique visitors last year. More than 20,000 NICU parents and professionals follow our preemiebabies101.com parent blog and connect with us through Facebook, Pinterest, Twitter and YouTube. And that number will continue to grow as Hand to Hold assumes ownership of an amazing online support group called Life After NICU. Started by NICU graduate parents from Rush-Copley Medical Center in Aurora, Illinois, the group was run by co-founder Aimee Sprik and Gena Brens. Life After NICU has quickly become the go-to Facebook page for NICU parents to connect with each other and to pose questions about the challenges many babies face during and after a NICU stay. Sprik and Brens asked Hand to Hold to consider integrating the site into our social media platform and taking over the herculean task of managing communication with their 10,000 followers so they can give their full attention to the needs of their own NICU graduates. Hand to Hold is honored to be chosen to carry on their dream to continue providing an online forum for NICU parents to connect and share experiences, ideas and inspiration.
While I often opine about the need for sharing every aspect of our lives online, I am thankful such resources now exist to ensure NICU parents have access to timely, meaningful and accurate information and support in so many forms – ping me if you feel the same!
Kelli D. Kelley
Founder and Executive Director
More Good Stuff
Dear NICU Nurse
PreemieBabies101 Blogger Heather Hucks received a lot of attention for her heartfelt open letter of appreciation and gratitude to NICU nurses everywhere. It even caught the eye of media outlet the Huffington Post who reprinted the post with permission to spread that message of hope, understanding and gratitude even further.
FB Chat: Parents and Kids Checklist for Managing Back to School Stress
NICU Mom and Pediatric Clinical Psychologist Dina O'Brien, PhD shares her best advice and answers questions about reducing anxiety (for your child and you!) from starting preschool, entering kindergarten, or going back to school. Learn what you can do to help your child with transitions, what's normal, and what to do if stress and worry are getting out of hand.
Raising a Preemie Is Like Climbing a Mountain
Katie R. Cascamo shares the story of her son's early birth at 30 weeks gestation due to pre-eclampsia and her decision, almost four years later, to step out of her comfort zone and scale Mt. Adams. In the journey, she learned more about caring for herself, her own strength, and how many similarities exist between parenting a child in the NICU and taking on an audacious task -- like learning to scale a mountain.
When a Difficult Diagnosis Means Hard Decisions
Hand to Hold Helping Hand Peer Mentor Kelly P. is the mother of John, who arrived early with a rare congenital condition and who earned his angel wings at eight months old. She was matched with Kathy M. who requested a mentor due to her son Nathan's diagnosis with a life-threatening condition. Together, they are navigating this difficult journey together and despite the hardship and pain - finding hope and a measure of healing in the midst of it all.
Join Team Hand to Hold in the 2014 Austin Marathon
Are you a runner and are you passionate about helping us support more NICU families in honor of amazing, resilient children? Join Team Hand to Hold at the upcoming Austin Marathon, Half Marathon to be held February 16, 2014. Run for the cause and help us raise awareness and funding to benefit families of NICU babies.
Advice For Parents Of Preemies: Learning To Ask The Questions
Missing your preemie's milestones in the NICU, even the seemingly small ones like bathtime, can be devastating. Kayla Aimee shares how you can lessen the heartache and play a greater role in your preemie's care.
Connect With Us
Preemie Power Begins Accepting Entries September 30, 2013
Be sure to visit preemiepower.org and enter your favorite NICU baby, child or youth to celebrate their amazing strength and how far they have come.
FB Chat: Keep Your Child Well During RSV, Cold & Flu Season
Hand to Hold will hold a Facebook Chat on its Facebook Wall coming up in October to help you prepare your little one for RSV, cold and flu season. Watch for details coming soon! Read more.
NICU Heroes Award Selected!
The results are in! After much deliberation, a panel of parents and professionals selected Pennsylvania neonatologist Gerard Cleary, DO, as the inaugural NICU Heroes Award winner. An awards luncheon will take place later this week, and we look forward to sharing his story and the stories of our amazing finalists, too. The award program is sponsored jointly by Hand to Hold and Mead Johnson Nutrition.
Support a Fellow NICU Family
Helping Hand Peer Mentor - Volunteer to support a fellow NICU family no matter where you live. Receive your training online.
Thanks to Our Superior Strength Preemie Power Sponsors!
Preemie Power Super Heroes
Meet 3-1/2 year old Samantha who spent 89 days in the NICU after her early birth at 26 weeks and fought off NEC, a serious bowel infection. Mom shares, "The doctors in the NICU called Samantha 'Sammie the Strong.' Nothing got her down… This is true to this day. Sammie has had some developmental delays due to being so early yet she continues to fight strong. She never lets anything keep her from accomplishing what she sets out to do." Be inspired by more Preemie Power Super Heroes.
For Healthcare Providers
Hand to Hold offers two resources exclusively for NICU health professionals. First is Hand to Hold's NICU Resource Library, a collection of educational materials available by subscription for NICU families in English and Spanish to complement Family-Centered Care practices. We also offer brochures, posters, newsletters and fliers to help healthcare professionals connect families to the free support Hand to Hold offers.
Read more Hand to Hold Supporter Updates.