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SUPPORTER UPDATE - NOVEMBER/DECEMBER 2013

A Defining Moment for Our Micropreemie

Jackson ready for footballThe night my son, Jackson, came barreling into the world four months too soon, my husband and I shakily stood at his bedside in the Neonatal Intensive Care Unit (NICU) and listened to the neonatologist compassionately but matter-of-factly explain the many challenges Jackson would face during the first hours, weeks and months of his NICU stay. The first of which was just to breathe. The doctor went on to explain that Jackson might be deaf or blind, he may have Cerebral Palsy or mental retardation, he may have life-long respiratory problems, he may have speech and learning delays. We were in a state of shock! How could this have happened? Why us? Why Jackson? Were we prepared to be the parents this tiny, medically fragile baby needed us to be?

I admit it took months before I would allow myself to envision Jackson as a NICU graduate. I was so afraid of losing him, I could not allow my heart and my mind to picture rocking him in his nursery, helping him take his first steps or blowing out birthday candles. I certainly would never have dreamed of him playing football in seventh grade. And never could I have imagined him guarding a wide receiver three times his size, intercepting a pass and darting for the end zone. But recently, this dream played out in full color on a brightly lit football field in Texas. While he did not score, to this preemie mom, it was so much more than a touchdown! As I screamed and rang my cowbell as if it were Super Bowl Sunday, I could not hold back the tears. It seemed like a defining moment in our family’s quest to overcome prematurity.

Maybe it is only something another NICU parent can fully understand, but this was so much more than an interception, it was a symbol of the resiliency and strength of preemies and babies born with special health care needs. It was a reminder of our tremendous blessings and the insurmountable obstacles hundreds of thousands of NICU families must overcome to ensure their child meets their full potential. It was victory over respiratory infections, surgeries, occupational, speech and physical therapy, sensory integration disorder, ADHD, learning delays and hours upon hours of doctor’s appointments and consultations with teachers, therapists and tutors.

During November (Prematurity Awareness Month), Hand to Hold celebrated the resiliency and strength of our NICU super heroes through our national photo and essay contest, Preemie Power. NICU parents from across the U.S. and three other countries flooded our Website with stories of tiny babies that beat the odds. There are many who will endure lifelong medical and developmental challenges, but each brings so much joy and light into the world and the lives of all who know them.

While great strides have been made during the past decade to reduce the rate of preterm birth, the parents of more than 15 million babies born preterm each year worldwide (about 500,000 in the U.S.)  must have access to support, resources and ongoing education to equip them to be meet the needs of their medically fragile child to ensure their tiny super hero reaches his/her full potential.

In celebration of  World Prematurity Day and to honor the preemies in the U.S. and around the world, I ring my cowbell for all the amazing preemies who inspire me daily to never give up and to enjoy life to the fullest! A special shout out to Bryce for his stellar performance in the Miracle League and Andie who skis competitively! Three cheers for Hanna and Rachel who excel on the track, and Casey and Brooklyn for their beautiful ballet! Spencer, keep mixing it up in martial arts. Lauren keep wowing the crowd with your back handsprings and Ella bring down the house with your Irish dance! You are what Preemie Power is all about!

In honor of all the precious children born early or who spend time in the NICU for other reasons, I would love to hear about the defining moments of the children in your life. From our family to yours, we wish you and yours a very happy, peaceful holiday season.

With Appreciation,

Kelli Kelley Signature 
Kelli D. Kelley
Founder and Executive Director

More Good Stuff

And the Preemie Power Winners Are...

Ari-TronHand to Hold announces the winners of it's 2013 Preemie Power Photo and Essay Contest. This year's overall Preemie of the Year is awarded to Ari-tron. Age category winners includeTerrific Tommy (0-6 months), Ari-tron (7-12 months), Ezra the Jedi Padawan (1+-3 years), Princess Smileyface of the Sunshine Brigade (3+-5 years), and Hope with Hannah (5+ years). Ari-tron won the Thundering Thurston Award for the most votes. Nate the Great won the Staff Favorite Award and Tiny-N-Tuff were honored with the Executive Director's Pick.  Hurrah for all the families and resilient children who bravely shared their stories! Be watching our Preemie Power blog to read stories of these amazing super heroes throughout the year.

Surviving the Long Winter Quarantine

Vinson-Hill Family's First OutingSummer Vinson discusses her first winter quarantine with her preemie son who was born 14 weeks early, along with some of the ways she coped with the isolation. At times alternating between gratefulness and despair, the loneliness was one of the most difficult challenges post-NICU. This photo is of her family's first outing!

{Professional Insight} Creating a Preemie Personal Health Record

Sara SkillenProfessional organizer and fellow preemie mom, Sara Skillen, provides some fantastic tips for creating a Personal Health Record (PHR) for your baby for future reference. A PHR is particularly helpful if your preemie is undergoing treatment/therapy, if you need assistance from someone who is assisting with your paperwork and bills or if your child is in an emergency situation.

When Friends and Family Just Don't Get the NICU

Kathryn and DinaWell-meaning friends and family often don't understand the emotional roller coaster that is the NICU. It's a matter of perspective they can't fathom because they haven't endured it themselves. Kathryn Whitaker shares how she dealt with her feelings of isolation and sadness by getting in touch with Hand to Hold, a nonprofit that matched her with a peer mentor who understood where she was coming from. 

Going the Extra Mile for a Friend in the NICU

Roche FamilyKenny Wottrich, a childhood friend of new NICU dad Adam Roche, signed up to participate in the Tri Pearl Triathalon this year when he heard of the impact Hand to Hold had in the life of Adam and his wife Jacquelyn following the preterm birth of their son Evan.  Running on behalf of baby Evan and Team Hand to Hold, the event gave him a chance to make a difference for an organization that brought a huge sense of comfort to his friends as well as a place to share Evan's story. If you're a runner and would like to give back, join Team Hand to Hold in the Austin Marathon, Half Marathon February 16, 2014.  

Deck the Halls with Hand Sanitizer

Holiday TreeAre you in isolation this holiday season with your preemie or NICU baby? Never fear. Heather Hucks has eight ideas to keep you celebrating (and healthy!) this year.

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We Ask, You Tell

PreemieBabies101 BlogEvery day we strive to put content on our blog that is relevant, helpful and honest with you, our dear readers. Now, it’s your turn to tell us what you love and what you want to see. Please take a moment to answer these 15 short questions and help us provide the very best site we can for preemie and NICU parents. 

NICU Tour Video for Siblings Now Available in Spanish, too!

View the Spanish and the English NICU tour, created especially for siblings.NICU Tour

FB Chats: Connect with Experts Virtually

Dr. Sue HallWe've had a phenomenal fall season of Facebook chats on Hand to Hold's Facebook Wall. We designed these educational events virtually so families can connect with invited experts who share resources and answer questions live!

In case you missed them, the sessions we held this fall included the following:

Keep Your Child Well During Cold, Flu & RSV Season with Neonatologist Dr. Mitchell Goldstein and NICU Parent Kristen Padavic

The Many Shades of the Baby Blues with Dr. Sue Hall, neonatologist and author of For the Love of Babies

Coping While Under Quarantine with Emma Trenti Paroli, NICU mom and co-author of Preemies and co-creator of IOS app MyPreemie 

Do you have a topic or speaker to suggest? Please contact Family Support Navigator Jennifer Beatty.

Visit Our NICU Parent Forum!

Life After NICU Powered by Hand to Hold

Become a Helping Hand Peer Mentor

Mom holding a preemieVolunteer to support a fellow NICU parent no matter where you live. Most support is provided via email or phone. Go through training online, submit a quick background check and receive support throughout the process from our Family Support Navigators.

Thanks to Our Superior Strength Preemie Power Sponsors!

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St. David's Healthcare

For Healthcare Providers

MilesHand 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. 

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   About Hand to Hold
Hand to Hold logoHand to Hold is a 501(c)3 nonprofit organization providing comprehensive navigation resources and support programs to parents of preemies, babies born with special health care needs and those who have experienced a loss due to these or other complications. 

Hand to Hold - www.handtohold.org - 855-H2H-NICU

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