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SUPPORTER UPDATE - SEPTEMBER/OCTOBER 2016

Bearing Witness to Pain After a Trauma
by Kelli Kelley, founder

hand holding candleMany people have strong reactions to and opinions about being told, “everything happens for a reason.” I recently read an article that equated these words to “nothing less than emotional, spiritual and psychological violence.”

I know while my son was clinging to life in the NICU I would not have wanted anyone to tell me his early birth held deeper philosophical meaning that would make me a better person. But I also can’t deny the fact that 16 years later, my life has been transformed in ways I could never have imagined.

If I had the ability to choose whether or not my son would have a NICU stay, I would certainly never choose to relive those four grueling months, knowing how much he suffered and how much he has struggled physically and developmentally through the years. Yet, with the support of my husband, family, community and amazing therapists, I was able to grow from the experience. I found out I was so much stronger than I ever believed. My life is so much more meaningful, parenting and marriage are so much sweeter, my friendships deeper and my faith stronger than before. And there is no question my son is a more empathetic person who knows his life has meaning and purpose because of what he went through.

Posttraumatic growth is often reported by cancer survivors, trauma victims, HIV-infected individuals and those with spinal cord injuries. Recent investigations have shown that posttraumatic growth also occurs for children and families after the serious illness of a child. And while it has not been widely reported in medical literature, we know posttraumatic growth is possible for NICU graduate parents as well. It should be noted this posttraumatic growth does not typically happen for many years, and is often impacted by socioeconomic status, the nature and permanence of the health condition, the parent’s psychological state and the family’s support systems.

A recent article written by healthcare providers who had personal NICU experiences with their children and grandchildren highlights the positive family transformations that often occur after a NICU stay. But the authors are careful to note they chose to reflect on the positive changes in their lives as transformations rather than posttraumatic growth. Rather than grow, they felt they were stronger, yet more vulnerable after going through the experience of prematurity, babies born with devastating diagnosis and loss.

Some of the life lessons shared in the article include gratitude for the gift of life, forgiveness, learning not to sweat the small stuff, respecting the fact that some things are simply out of our control, humility and resilience.

But before we can even think about what positive things may result from our difficult and traumatic birth experience we must first grieve what we have lost. Continue reading...


Kelli Kelley Speaks at National Coalition of Infant Health's Annual #InfantSummit

kelli infant summitOn September 15, Kelli Kelley participated in a panel at the National Coalition for Infant Health's annual Infant Health Policiy Summit in Washington, D.C. In their panel, "PPD & PTSD: Impact of the NICU on Parents, Families and Staff," the panelists shared their personal stories, along with the long-term mental and emotional impacts each experienced in regards to relationships and careers. The panelists identified the support and resources needed to help parents mitigate the impact of a NICU stay and loss and discussed the toll of the NICU on NICU professionals as well. 
 

More Good Stuff

Back to School After the NICU

Back to SchoolAs NICU parents we often worry whether or not our child is measuring up to their typically-developing peers. How do you know if your child is ready for the classroom? What does your child need to succeed in the classroom? As we settle into the school year, here are several important resources to have handy. 

 

The Misdiagnosis of PTSD in Preemie Parents

preemie babyPTSD is common for preemie and NICU parents but is often diagnosed too early. Healing is possible when diagnosis and support is provided at the right time. Therapist and Perinatal Wellness Expert Parijat Deshpande describes what parents can do to cope with their emotions following a traumatic birth. 



Delight Despite Delays

special needs childFor parents of preemies or special needs kids, it's hard to know when to step in and when to sit back. Blogger Laura Maikata tells of how after years of specialists and doctors, she came to terms with the fact that "normal" is an elusive term for her child. She could either spend her time constantly worrying, or she could embrace her child and revel in the delight he brings her.



10 Things Every Preemie Parent Should Know

preemie in NICUPreemie parents are often thrust into the NICU with little to no preparation. New NICU Family Voices blogger Ima Carnelus shares 10 things she wishes she'd known before she became a preemie parent.

Connect With Us

Like us on Facebook!Follow us on Twitter!Watch us on YouTubePin us on PinterestNICU Family Voices 28nicu family forum 28

Walk/Run a 5K with Team Hand to Hold!

Team Hand to HoldStay fit, have fun and raise money on behalf of NICU families! We are looking for 25 walkers or runners for the Paramount 5K and Austin Marathon/Half Marathon on February 19, 2017. There is no minimum fundraising requirement; however, a team shirt will be provided for those raising $250 or more. Sign up here or contact jessica@handtohold.org for more info.


Annual Luncheon to Feature NYT Bestselling Author!

melanie shankleWe hope to see you at the Hyatt Regency Austin on November 4th for Hand to Hold's 3rd Annual Baby Shower Luncheon. Guests will enjoy a Wizard of Oz-themed afternoon of bubbles, baby shower games, lunch, and message from nationally recognized speaker and NYT bestselling author Melanie Shankle. Click here for ticket and sponsorship information.
 

November is Prematurity Awareness Month!

preemie babyFor the month of November, we will be celebrating our preemies, while also raising awareness for prematurity and its causes, both known and unknown. Keep up with us this November on our blog, Facebook, Twitter, and Instagram.
 

Dates to Remember

calendarOctober: RSV season begins
October 15: Pregnancy and Infant Loss Remembrance Day
November: Prematurity Awareness Month
November 4: Hand to Hold's 3rd Annual Baby Shower Luncheon
November 17: World Prematurity Day 
November 20-26: GERD Awareness Week
 

Volunteer Opportunities

Kelli visits VictoriaVolunteer your time to write supportive notes to be given to families in the NICU now and to say thanks to NICU staff during special recognition months. Or virtually correspond with a family who has had an experience similar to yours by becoming a Helping Hand peer mentor. Whether you have a little or a lot of time, we have a spot for you to make a difference today. Get started.
 

Connect to Support on Your Schedule

Julie Cruz and hubbieA baby's NICU stay or loss can be a lonely and isolating experience. Let our experienced Family Support Navigators help you connect to information, resources and support to help make the journey easier for you. Send us a request to begin
 

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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