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SUPPORTER UPDATE - JANUARY 2012

Embracing Vulnerability

my heart in your hands by aussiegallA friend recently shared a link to a presentation by Brené Brown, a researcher and story teller who studies human connection – our ability to empathize, belong and love. Her presentation, entitled “The Power of Vulnerability,” significantly changed how I perceive my personal weaknesses and will shape my new year’s resolutions for 2012 – and hopefully my resolutions for years to come.

Connecting with others is what gives life purpose and meaning. Brown describes connection as a neurobiological need, and through her studies set out to find why so many people deny themselves this basic human need. She spent six years collecting and studying thousands of stories. Her conclusion: vulnerability is necessary for connection.

Hand to Hold is all about connection and was born from my deep, intrinsic need to connect with other parents who had been through a neonatal intensive care unit (NICU) experience. I craved this connection and felt I needed it for my very survival. I was vulnerable, and probably for one of the first times in my life, I was able to admit it to myself as well as to others.

Vulnerability is messy. It is uncomfortable and most of us prefer to hide it and/or numb it. Brown theorizes that this numbing process has played a significant role in the staggering number of adults who are indebt, obese, addicted and/or medicated. She also points out that it is impossible to selectively numb emotions so when we numb shame or fear, we also numb our sense of joy, gratitude and happiness.

Brown encourages us to embrace our vulnerability! We must have the courage to admit and show that we are imperfect. We must also be kind to ourselves and let go of who we thought we should be in order to be who we are. Vulnerability can be the birthplace of joy, love and belonging because it means we believe we are enough.

So rather than setting New Year’s resolutions that were ultimately about proving something to myself or others, this year my resolution is to embrace my vulnerability. This will be a year of personal authenticity in which I let go of living life to meet perceived expectations of others. No, this is not a way to get out of my typical weight loss resolution, it is simply a way to be kinder and gentler to myself and leave fear of failure and judgment in the past.

Happy New Year!

Kelli Kelley, Founder and Executive Director, Hand to Hold

Seeking Runners and Volunteers for
Austin Marathon

by Kelli Kelley, mother of two preemies

Preemie PosseI'm pleased to announce that The LIVESTRONG Austin Marathon to be held February 19, 2012 will officially launch Hand to Hold’s new Preemie Posse program! This program will empower athletes-- walkers, runners, swimmers, tri-athletes and more--to compete on behalf of Hand to Hold throughout 2012 and join us in our mission to ensure the best outcome for preemies and their families.

26 Miles for 26 CharitiesHand to Hold was thrilled to be selected to participate in the 26 Miles for 26 Charities program for the Austin Marathon to be held Sunday, February 19, 2012. There are two very important ways you can help ensure our participation in the event is successful.

Planning to run in the marathon, half marathon or 5K?
If so, Hand to Hold invites you to join the Preemie Posse to raise awareness of the mission of Hand to Hold as well as funds to provide critical support to parents of preemies during and after a NICU stay.

  1. To register for the February 19th race, visit http://youraustinmarathon.com/registration. During the registration process, you will be able to select "Hand to Hold" as the charity you are supporting.
  2. Hand to Hold also now offers team and individual personal fundraising pages, so you can tell your story and send a request to friends and family asking them to pledge $10 or more.  

Water Stop Volunteers
Hand to Hold needs 50 outgoing and energetic volunteers to join us from 6 am to 9:30 am on race day morning February 19th to staff the Hand to Hold water stop. While it will require an early rise on a Sunday morning, we know you will have a lot of fun and enjoy cheering on athletes while supporting an important cause. Please consider recruiting your spouse, teenage children, co-workers and friends to volunteer with you – it is going to be a great day! For more information or to sign up, contact Angela Wright at angela@handtohold.org.

Don't Forget the Siblings: Ways to Support the Entire Family During a Hospital Stay
by Khris Ford, MA, LPC & Founder of My Healing Place

Knight FamilyPregnancy and birthing, bringing home baby and taking care of baby are all a part of the family affair we call “becoming a family.” Siblings often get to help with picking a name, painting the nursery and many other activities that are a part of the transition through which a family passes as a new member is ushered into the world. Yet so often when the pregnancy and the birthing experience don’t happen as planned, the “family” gets lost in the midst of decisions that lead to more decisions, emotional adjustment processes, and the day-to-day business of survival and crisis management. Siblings who were once a part of this wonderful chapter in their family life cycle often find themselves on the outside trying to look in and understand what is happening.

Emotional Needs of Siblings
The fact is, even young children have important emotional needs that need to be met. While these healthy siblings may have their physical needs addressed by a loving family member or friend, their emotional and psychological needs are often misunderstood or simply missed as critical days and even weeks in the neonatal intensive care unit go by.  Read more and leave a comment

Nana in the NICU
Mary Dudley in the NICUby Mary Dudley, grandmother to two preemies

The night our son-in-law, Mike, called to tell us that our daughter, Kelli, was in preterm labor at just 24 weeks, our immediate reaction was a sense of urgency to get to the hospital to be with them. We made the four-and-a-half hour trip in just two hours and 47 minutes. When we got to Kelli’s bedside we found her very frightened and emotional as she showed us a polaroid picture of our tiny grandson. She told us that Mike was in the NICU with Jackson. That was our first time to know what NICU (Neonatal Intensive Care Unit) meant. We were very amazed when we entered the NICU for the first time and saw so many tiny babies attached to breathing machines and beeping monitors.

The doctors said the first 24 hours were critical, and if Jackson could make it to 72 hours, there was a chance. We stayed at the hospital as long as we could and spent many hours in the chapel on our knees praying for Jackson to fight and become strong enough to live. Jackson was 6 weeks old before I could hold him and I will never forget that moment. Read more and submit a comment.

Featured Resource: It's a Preemie Thing 
It's a preemie thing logoby Kelli Kelley, mother of two preemies

Julie Howard, preemie mom and founder of “It’s A Preemie Thing” is definitely not what I envisioned when I thought of an officer in the US Army.  Maybe her beautiful blond hair, sparkling blue eyes and infectious smile disarmed enemies?  Or maybe her amazing sense of humor had them rolling on the ground begging for mercy?  I really don’t know, but regardless she deserves our gratitude for her service to our country.  And as parents of preemies, we also owe her for bringing a little laughter into the NICU – a place typically void of humor.

It's a Preemie Thing launched on Labor Day, 2010 when Julie’s son, Spencer, was only 9 months old, and she was serving as a full-time Army Officer. A fellow preemie mom asked Julie to help her come up with a funny saying to put on the onesie her daughter would wear home after a long NICU stay. The precious baby would be leaving the hospital with a feeding tube, oxygen and several monitors.  Julie’s suggestion, “O2...it’s not just for old people,”  helped her friend embrace the needed equipment and celebrate their family’s major accomplishment – NICU graduation! Her business resulted from this a-ha moment when she realized it filled "the need for some humor in our lives."

Not only does It’s a Preemie Thing sell fun onesies, t-shirts and scrubs, they also connect parents with organizations like Hand to Hold.  “Nobody is in this alone, we just have to make sure they know that,” said Julie. Read more and leave a comment.

Book Review: The Gifts of Imperfection

by Kasey Mathews, author, blogger, and mother of son Tucker and daughter Andie who was born at 25 weeks and weighed just 1 lb, 11 ounces at birth

The Gifts of ImperfectionWhen you first found out you were pregnant, what did you imagine your life would be like? Did you have visions of a round swollen belly draped in the latest maternity clothes? Did you imagine yourself in the last months of your pregnancy putting the final touches on the nursery you’d so lovingly created for your newborn? Had you created a detailed birth plan to share with your doctor/midwife, one in which the end result was a healthy, round bundle of joy? If you’re like me, you had these visions and more. And if you’re like you’re me, your pregnancy/birth dreams never involved a traumatic birth followed by the uncertain rollercoaster ride of life in the NICU.

But if you’re like me, that’s exactly where you ended up.

When my daughter Andie was born so unexpectedly at 25 weeks, I spent hours of each day replaying the months prior to her birth, trying to figure out exactly what I had done wrong to cause her early arrival. After her birth, every cell in my being was satiated with guilt, shame and fear. It took me years to let go of my vision of the perfect pregnancy, perfect delivery and perfect baby, and many more to finally see her birth for the amazing gift it would prove to be.

When I read Dr. Brené Brown’s book The Gifts of Imperfection: Let Go of Who You Think You’re Supposed to Be and Embrace Who You Are, I wanted to stand in the middle of every NICU and pass out copies. The book is not about being a premature parent, it’s about learning to love and accept yourself and the path you are on, so wait a minute, it is a book about being a premature parent! Read more and leave a comment.

Meet Education Coordinator Marty Barnes
Marty Barnesby Erika Goyer, family support navigator

Native Austinite and Parent Volunteer, Marty Barnes is the brains (and the heart) behind Hand to Hold’s popular monthly Lunch & Learn series.  This program began last summer when Marty came to us with an idea. Parents who knew her and her daughter Casey also knew that Marty is a wealth of information when it comes to loving and living with a child with special health care needs; they were always asking her for advice. That’s because Marty is a reliable expert. She is a not just a seasoned preemie mama. She is willing to share everything she's learned on her journey caring for her daughter Casey. 

Marty and her husband Tim welcomed their daughter into the world on April 23, 2006. Though Casey was born at just under 37 weeks, she had a traumatic birth that resulted in a two-month NICU stay. She returned home with many ongoing medical issues. Marty says, “Although there have been many trying times, being a mother is the most satisfying and rewarding job I could ever imagine.”

In addition to working with Hand to Hold, Marty is an active volunteer with several other community organizations. She and her husband Tim have backgrounds in information technology (IT) and their expertise on using the internet as a means to reach others comes naturally. They host a website detailing Casey’s care and helping other families to access resources. In addition, last year Marty started a grassroots inclusion project called the CLU Campaign.

 As if that’s not enough, Marty recently returned to school with the goal of getting advanced training so that she can better serve and provide care to medically fragile children and their families. When Marty finds spare time, she is also learning Spanish and is writing a book.

Helping Hand Highlight: Victoria Trejo and Her Daughter Amiah - What A Difference a Year Makes
Amiah Tby Erika Goyer, family support navigator
 

Sometimes you have the chance to connect with another mom in a way that is so personal and so intense that you feel an instant bond. I think that’s what happened when Kelli met Victoria on our visit to El Paso, Texas last year. If I’m remembering correctly she said to me, “Victoria needs to be matched with another mom. And I want that mom to be me.” I knew at that point that I wouldn’t even try to get between them.

We met Victoria in the NICU at Las Palmas Medical Center. Although she was from Las Cruces, New Mexico, her daughter, Amiah, had been transferred to a NICU in El Paso soon after her birth on January 15, 2011 at 22 weeks gestation. Once she recovered from her emergency c-section Victoria began the exhausting routine of driving back and forth from Las Cruces to El Paso to be with her daughter.

I remember seeing Amiah that day in the NICU. She was in the quietest corner of the unit where the lights were dimmed and where there wasn’t much sound other than the hum of the oscillator. We whispered to each other in her quiet room and wondered at her tiny, beautiful body. I am always humbled and amazed by these extraordinary babies. I don’t know if she is the smallest infant I’ve gazed upon in wonder and amazement but she may be. When Amiah arrived she was 12 ounces and 10-1/2 inches long, no larger than a soda bottle. Read more and leave a comment.

Honoring Dr. Mary Ellen Avery - Surfactant Therapy Pioneer

Mary Ellen AveryDecember 4th, 2011 marked the end of the remarkable life of a remarkable woman. Doctor and medical researcher, Mary Ellen Avery, was responsible for what has been called the greatest “major advance in neonatal care in the last 50 years.” That advance was surfactant therapy. Read more, enjoy a poem shared in her honor and leave a comment.

Sibling Sundaes Set For January 28th

nurse with siblingsHaving your little brother or sister in the NICU can make life a little rough! Kids need support as much as parents do! Come Join Hand to Hold for Sibling Sundaes on Sunday, January 28, 2012 from 2-3pm in the NICU-Classroom 2 East at St. David's Women's Center of Texas. Learn more or RSVP to Erika Goyer.

Lunch & Learn Set for January 30th

A ladybird, a blade of grass vy Dave Knapik, creative commonsYou are invited to attend the next Lunch & Learn session January 30, 2012 from 12-1pm at the Ronald McDonald House of Austin (near Dell Children’s Medical Center). This month’s topic is “New Year – New You: The Importance of Self-Care." Local preemie mama experts will share what they’ve learned about self-care. RSVP to Marty Barnes.

NICU Support Groups

Isaac in the NICUJoin Hand to Hold's Family Support Navigator, Erika Goyer, for an ongoing NICU Support Group on Thursday, February 9th at St. David's Medical Center from 6-7pm. A support group is also ongoing at St. David's North Austin Medical Center. Pizza will be served. For more information, contact Erika Goyer at 512-550-3181.

Making Connections: Collaborating with WIC 

Texas WICFamily Support Navigator Erika Goyer spent a morning visiting with WIC’s Peer Counselors of Williamson County in Round Rock. The Women Infants and Children nutrition program recruits and trains experienced mothers to become breastfeeding counselors. They offer support, information and encouragement to fellow moms in the WIC program – and provide a perspective that only another parent can! Erika and the counselors talked about the unique issues premature infants and their mothers face while breastfeeding and about how Hand to Hold and WIC Peer Breastfeeding Counselors can work together to support these families. If you are interested in meeting with a peer counselor - or becoming one – contact your local WIC office, or reach out to  Kristina Arrieta at 512-341-4592.

Have a Baby in the Hospital Now? Get CareFlash

Mother and child in the NICUKeep your loved ones connected and updated with a your family's very own, private care community webpage provided at no charge by Hand to Hold in partnership with CareFlash. Free yourself of the emotional burden of having to re-explain procedures and health conditions over and over by sending one update, take advantage of an integrated iHelp calendar where friends and family can sign up to bring meals or pick up siblings, and much more. Watch a video to see how CareFlash works.

CareFlash

Congrats to DadLabs! 

The International Academy of Web Television held its inaugural IAWTV Awards at the 2012 International CES on the evening of January 12, 2012 at The Venetian in Las Vegas. The first IAWTV Award went to DadLabs for the Best Educational Web Series.

DadLabs Receives Award

Thank You for Your Sustaining Gift 

green-gift.s100x100.jpg by niezalogowanegoHand to Hold welcomes gifts of any size to help us further our mission to empower parents who have had a child in the NICU or a loss. If you'd like to pay it forward to future families, consider a monthly gift. Make your donation online or contact Angela Wright for assistance.

Featured Blog

BlogMegan Kresse Lubin began "His Middle Name" blog and FB community to provide gynecologic health information and to create a sense of hope and inspiration among parents of premature children and women who have experienced pregnancy complications. She shares a powerful story of her own personal experience with fibroids and subsequent early birth of her son Sutton who was born at 26 weeks. See more family blogs. Send an email to Amy Carr to add yours to the list.

Donors Enjoy a Sports Night Out 

Hand to Hold donors and friends recently enjoyed a sports night out thanks to a generous gift from Onair Development.  A group attended the Texas Stars hockey game on December 27, and another group attended an Austin Toros basketball game on December 30.

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. Based in Austin, Texas with plans to expand, Hand to Hold’s core service is matching experienced peer mentors with parents who have had a child in the NICU or a loss to offer support.

Stay Connected
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Support the Cause
Monetary contributions of any size will make a direct impact as they are thoughtfully applied to further the mission. Your gift couldn't come at a more meaningful time as 1 out of every 8 births is preterm.

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

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