Hand to Hold

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A NICU Stay is a Marathon, Not a Sprint

Kelli Kelley with Katie Jo DixonAs I cheered on thousands of runners as they passed Hand to Hold’s water stop at the recent Austin Marathon, I was struck by the diversity of the athletes. Runners of every age, ethnicity and ability made up the crowd of 14,000 runners. Some passed by quickly as they made their way confidently towards the finish line while others struggled to keep the pace. It reminded me of the diverse population represented in neonatal intensive care units (NICUs) across the country.

Prematurity does not discriminate. While some demographics have a higher risk for preterm birth, all groups from teen moms to advanced maternal age mothers experience the trauma and uncertainty of having a baby born too soon, too small. Parents of every race, religion and socioeconomic standing find themselves facing similar struggles as they navigate the difficult journey of a NICU stay.

NICU nurse Katie Jo Dixon of Austin understands the challenges NICU parents face and decided to run her first marathon on behalf of Hand to Hold and the many families she has cared for as a nurse and as a photographer for the Now I Lay Me Down to Sleep Foundation, which provides the gift of remembrance photography for parents suffering the loss of a baby. 

Before participating in the marathon, Dixon had never run more than three miles. She trained for four months to complete the 26.2 mile race. She finished in four hours and 20 minutes and raised more than a $1,000 in support of Hand to Hold’s mission.

“It was a very meaningful experience because it required me to push myself past many physical boundaries,” Dixon said. It was the connection to community and to Hand to Hold that kept me going. Hundreds of volunteers were cheering for us and people I did not know kept telling me I could do it,” she said.

Thanks to Marathon runnersAs Dixon described the wall she hit at mile 22 and how she experienced anger, fatigue and sadness, I recalled my son’s long NICU journey and the many days I thought I just could not go on. I remember our nursing staff telling me that a NICU stay was a marathon, not a sprint and for the first time, I can truly appreciate the analogy. I can also relate to the importance of a community of support as that is what carried me and my husband through our 109 day NICU experience.

Thanks to devoted and skilled NICU medical professionals like Katie Jo, NICU babies are experiencing better outcomes. And thanks to athletes who compete on behalf of Hand to Hold, generous corporate sponsors, individual donors and devoted volunteers, Hand to Hold is able to provide support, education and resources NICU parents need to ensure they finish the race strong and are ready to meet the needs of their medically fragile child long after a NICU stay.

If you are interested in running, walking or competing on Team Hand to Hold no matter what city you live in, you can set up your own fundraising page or contact Jessica Torres-Sosa to learn more.


Kelli Kelley Signature 
Kelli D. Kelley
Founder and Executive Director

Honor Your Child & Family's NICU Hero 

NICU Heroes 2015Hand to Hold and Mead Johnson Nutrition are currently accepting nominations to the Third Annual NICU Heroes Award. Together they are inviting parents and caregivers to nominate NICU health care professionals whose compassionate care and dedication helped lessen the emotional toll of a NICU stay and ensured the best outcome for their baby and family.

Online nomination submissions include a short form with contact information, the family’s story, hospital contact information and the name and email of the NICU professional who is being nominated. That’s it!

Nominations are open until May 14, 2015 at 5pm CT. All nominees will receive a Certificate of Nomination in recognition of their achievement and a copy of the story shared about the difference they made for a child/ren and family

A panel of judges, composed of NICU parents and active NICU professionals, will select two winners. The two NICU Heroes Award Winners will receive the following:

  • A NICU Hero Award certificate and trophy, presented at the winner’s hospital,
  • A $2,500 donation made in their honor to the pediatric healthcare charity of their choice*, and
  • A one-year subscription to the Hand to Hold NICU Resource Library for the winner’s hospital to help educate families new to the NICU.

*Some limitations apply.

Please consider nominating your child’s NICU health care hero today at http://www.handtohold.org/hero.

More Good Stuff

Introducing an Older Child to the NICU

siblings in the NICUCarolyn Leighton-Hilborn invites Child Life Specialists Riann Horan and Shaindy Alexander to share tips working with older siblings before, during and after a newborn's neonatal ICU stay.

Mourning a Loss that Doesn't Quite Have a Name: Grief and Loss in the NICU

Preemie reaching outEvery NICU parent experiences it, even if only on a small scale. Kara Wahlen, NICU mom and therapist, gives voice to grief and its many expressions. She encourages families to create space for this uncomfortable emotion to integrate loss into our lives in a way that is meaningful.

Teams and Machines: 10 Tips for Baby's Homecoming

Shoshana Koch HomecomingBringing baby home should be a joyous occasion, but a homecoming post-NICU can be especially trying. Shoshana Koch shares her best 10 tips for working with home health, specialists and durable medical equipment.

The Color of Prematurity Awareness

Kaleena BerrymanWhat does prematurity awareness mean for the African American community? NICU mom and advocate Kaleena Berryman shares her perspective and how important it is to help moms who have traditionally been underserved and have their voices heard. 

Do I Have Delayed-Onset PTSD?

Eyes OpenNICU mom and author Jennifer Degl describes the PTSD symptoms that remained long after her traumatic pregnancy and her daughter's early birth and gives tips for healing.

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Hand to Hold 5 Year Birthday

NICU Resource LibraryTo celebrate five years of tremendous impact in the NICU community, Hand to Hold's eNewsletter will feature a milestone that we have been able to accomplish thanks to support from our community locally and nationally. This month's feature is the NICU Resource Library.

Parents are often unprepared for a NICU stay. In the face of enormous stressors, they have to quickly adapt to this new, medically complex environment. Hand to Hold’s NICU Resource Library provides tools for NICUs to use for the education and support of parents during their stay and in preparation for discharge, which helps parents become active members of their baby’s care team. Endorsed by the National Perinatal Association, this comprehensive navigation resource tool has been placed in hospitals across the country to enhance family-centered care programs.  

Congrats to our NICU Grand Prize Giveaway Winner!

Miles in the NICU eyes openHand to Hold is pleased to announce the winning family of its 2015 NICU Grand Prize Giveaway! This year's winner is Maggie Boyd of Austin, Texas who was fundraising in honor of her son Teddy and his NICU, Seton Medical Center in Austin, Texas. The prize package worth $5,000 will be gifted to Teddy's NICU. Our thanks go to our sponsors: The Boppy Company and Nurtured by Design. 

Eat! Drink! Rock!

GuitarAustin’s all-female rock band The Mrs. will help us kick off Hand to Hold’s 5-Year Birthday Campaign with a special performance on May 1st!

Food, beverage, and mini golf will be available for purchase with a portion of the proceeds donated to Hand to Hold. Try the “The Mrs. Martini” or “The Mr. Whiskey” created especially for this event! Then join us outside at 8 p.m. for live music by The Mrs.

Attendees will also have the opportunity to bid on an autographed George Strait guitar. One of just 220 produced, this Natural Epiphorne DR 100 guitar features a photo from Country Music Legend George Strait’s The Cowboy Rides Away tour. Bidding will begin online at noon on Monday, April 27th and run through 9 p.m. on Friday, May 1st at biddingowl.com/HandtoHold. Proceeds from the guitar will benefit Hand to Hold.

Download the Invitation (PDF) to share with friends and family! Or share this event via Facebook. For event questions, contact Jessica Torres-Sosa.

Save the Date

Join us for our 5th Birthday Party on Friday, August 14th at Dell Diamond (Round Rock, TX)! Help us celebrate the success of Hand to Hold with the NICU families we have served over the years, as well as Austin-area sponsors and volunteers. More information coming soon!

Become a Helping Hand Peer Mentor

Mom holding a preemieVolunteer to support a family like yours. Become a Helping Hand peer mentor and use your experience to help a fellow NICU parent. Sign up for our online training and our Family Support Navigators will guide you through the process.

Coming Up

April 1 - NICU Heroes Awards Nominations Open
April 25 - Listen to Your Mother Show benefits Hand to Hold
May 1 - The Mrs. Performs at Hill Country Golf & Guitar
August 14 - Hand to Hold's Fifth Birthday Party 

Thanks for Your Support


For Healthcare Providers

MilesHand to Hold offers resources exclusively for NICU health professionals. These include a selection of brochures, posters and postcards. Hand to Hold also offers its NICU Resource Library, a collection of educational materials available by subscription for NICU families in English and Spanish. Endorsed by the National Perinatal Association, these materials complement Family-Centered Care practices. Watch for our new online store, which is coming soon!

Past Issues

Read past eNewsletters.

   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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