I have struggled for days to write my regular column for the Nov/Dec e-newsletter. Typically it is one of my favorite (and least stressful) tasks that I perform each month. Maybe it has something to do with my turkey and pumpkin pie induced hangover. Or maybe I am preoccupied with the surprise I found in our attic when I went to retrieve the Christmas decorations – a squirrel! Or maybe it is the “to do” list that is bumping around in my brain: make gift list and check it twice; update Christmas card list; buy stamps, wrapping paper and bows, schedule sitter for office Christmas party, help my daughter memorize her lines for her school play, and lose 20 pounds before New Year’s Eve. Add that on top of the regular Hand to Hold case load, kids homework assignments, extracurricular activities, grocery shopping and housework, it is no wonder I am feeling a bit dazed and confused. Unfortunately, for many of us, our “to do” lists and hectic holiday schedules can detract from the joy of the holidays.
Thankfully, my inspiration finally arrived this afternoon –- in the form of a video featuring the photos of Hand to Hold’s 2011 Preemie Power contestants. As each precious face appeared on the screen, I found myself saying, “Thank you, God, for this precious gift.” While many of us have daily trials and challenges, it is impossible not to feel thankful when reminded of the gift we have been given in our children. My sincere appreciation to all the families who participated in the contest this year. We celebrate with you the might, brawn and sheer determination of each of your amazing super heroes. And we salute each of you for your resiliency, dedication to your families and your determination to ensure your children have the support needed to live full, healthy and happy lives.
I am so thankful for the 2011 Preemie Power sponsors. We truly appreciate your support. Because of you, Hand to Hold is able to provide navigation resources and support programs for thousands of families. We look forward to a long and fruitful partnership as we work to expand Hand to Hold’s reach. A special thank you to Richard Hammett for serving as our Master of Preemies this year. We hope you will display your Preemie Power cape proudly for years to come. Thank you also to the amazing volunteers who made Preemie Power possible this year – especially those brave enough to show up in full super hero costume! We treasure each of you and your many contributions to Hand to Hold throughout the year.
Finally, to the remarkable staff of Hand to Hold, I am forever grateful. When I look back on what we have accomplished in the past year on a modest budget with limited resources, I am truly amazed. You are each talented, creative and accomplished multi-taskers. I am so very thankful for each of you and humbled by your dedication to the success of Hand to Hold.
When the task of writing my column felt overwhelming, I should have known to just start with my list of thanks as it can fill page after page. Thankfulness for the families I am privileged to meet and serve through my work with Hand to Hold. Thankfulness for the doctors, nurses, therapists and specialists that have dedicated their lives to saving and nurturing our children. Thankfulness for my friends and family who are always there to lift me up, cheer me on and wrap me in a warm hug when life gets to be a little too much. Let us not reserve our thankfulness just for the month of November. Let’s remind each other daily to give thanks for the gifts we have all received.
Kelli Kelley, Founder and Executive Director, Hand to Hold
Hand to Hold Celebrates Preemie Power and Raises Awareness of Prematurity
by Amy Carr, mother of a preemie
Two hundred families, doctors and nurses celebrated Prematurity Awareness Month at Texas’ second annual community-wide Preemie Power Family Celebration on Sunday November 13, 2011. The family event organized by Hand to Hold gave families and health care providers an opportunity to recognize the incredible super hero qualities of NICU graduates and the milestones they have achieved. Families visited with one another as children enjoyed plenty of activities and refreshments. We were also honored to have NurturMe, BBVA Compass for Your Cause and Mothers' Milk Bank at Austin distributing information. See our family celebration video!
St. David’s Medical Center Chief Operating Officer and NICU graduate father, Richard Hammett, served as Master of Preemies announcing the finalists and winners of the Preemie Power Photo and Essay Contest. Ninety-one families from 29 states and Canada entered their child’s photo in the contest and shared their child’s heart-warming, super hero stories. Celebrity judges included Kim Pleticha of Parent:Wise Austin; Dr. Annette McCormick, local neonatologist, and Kasey Mathews, author and mother of a preemie.
Chiron Jimenez of Austin received top honors in the 0-1 year old category. “Scrappy Doo” was born at 29 weeks gestation weighing 3 pounds 1 ounce and spent 53 days in the NICU. He is now 9.5 months old. He was nominated by his mother, Elizabeth Wiley, who wrote: “Chiron could serve as Preemie of the Year not due to his uniqueness, but due to his ordinariness…He exists because of the constant vigilance and care of neonatal staff every day, not just in crisis situations. Chiron is a living model of what we are all seeking to provide for all preemies and thus I believe serves as a powerful model in the role of Preemie of the Year.” Finalists in the same category included 8.5-month-old twins Gabe and Sam, “The Real Dynamic Duo,” sons of Jason and Marci Jones from Columbia, Alabama and 4-month-old Aiden, “The Mighty Pound,” son of Anjelienne Wright of Mount Sterling, Kentucky.
Cade and Camdyn Hensel of Leander were named the winners in the 1+ to 5 years old category. Nominated by their mother Michelle Hensel, “The One Pound Wonders” were born at 24 weeks gestation weighing just 1 pound 2 ounces and 1 pound 8 ounces at birth. They spent 133 days in the NICU and are now 18 months old. Their mother writes: “From the first day of life, they had to valiantly fight off all the evil NICU villains… After 133 days of continuous fighting, they left the NICU battlefield…They have left the world in awe of their amazing powers - the power to eat, breathe, walk, talk, and most importantly, live after being given only a 30-40% chance of surviving! The One Pound Wonders have proven to the world that miracles exist.”Finalists in the same category include 2-year-old Luke Whitaker, “Lonestar Luke,” son of Kathryn Whitaker of Austin, Texas; One year, two weeks old Zephran, “The Big Z”, son of Kaitlin Young from Medicine Hat, Alberta, Canada; and 21-month-old Bobby, “Deuce,” son of Peter Ruhno from Perryman, Maryland.
Ikey and Reagon Kohler, 8, of Austin were chosen as the top winners in the age 6 and over category. Nominated by their mother Molly, “Ikey the Invincible & Resilient Reagon” were born at 26 weeks gestation, weighed 1 pound 15 ounces each at birth and spent 97 and 98 days in the NICU. Their mother shares, “After Ikey and Reagon were born by emergency c-section, they had an extremely rough start, and several weeks of the unknown…They were never feeders and growers. They were just trying to breathe. They are both amazing, smart, humorous, athletic, and just wonderful…they are just remarkable little boys who have been through far more than most people will ever go through in their entire lives.” Finalists in the same category include 6-year-old Lorenza Piper, “Smily Lorenza,” daughter of Beth Piper of New Gloucester, Maine and 8.5-years-old Ian, “Ian Man!” son of Maggie Smith of Vacaville, California.
Chiron Jimenez was also recognized with the Thundering Thurston Award for earning the most votes–4,162 in all. This award, named for Thurston Mossholder, a 2010 Preemie Power winner from Round Rock, who lost his battle against complications arising from his prematurity passing away shortly after his first birthday.
“We organized Preemie Power to raise awareness about premature birth and offer hope to families who may be new to the experience. We chose a super hero theme because of the incredible strength and courage of preemies and their families,” said Kelli Kelley, founder and Executive Director of Hand to Hold. “Families are often blindsided by the aftermath of having one or more children in the NICU. It is emotionally and physically exhausting. That’s why we are so passionate about sharing these stories and creating a community of parents dedicated to supporting one another.” Kelley is the mother of two children born preterm.
Hand to Hold is grateful to its title sponsors St. David’s Foundation, St. David’s Healthcare and Enfamil as well as underwriters Roger Beasley Mazda, Sonic, Epic MedStaff, H-E-B, Austin’s First Steps, Knight Construction, Mother’s Milk Bank at Austin, Proof Advertising and Germer Gertz Beaman and Brown L.L.P. for their support of the event. Winners received Preemie Power super hero capes and prize packages valued at more than $500 provided by A Maggie Film, Austin’s Park, Baby Blanket Music, Baby Sense, Marty Barnes and Family, Brand Builders Company, Brooke West Photography, Carousel Designs, Fisher-Price, Kokopax, Mellow Johnny’s Bike Shop, NurturMe, Pediped, Tracy Tenpenny Design, Mystery Inc., and other generous donors. Additional support provided by Beverly Demafiles Photography, Covenant Presbyterian Church, Ian Jensen, Michelle’s Patisserie, Mimi’s Cafe, PeekabooICU, RiverKids Pediatric Home Health, Lourdes Shoaf, Texas Clown Partys, Turner Construction, The Westin Hotel Austin and Zundunga Mexican Bistro.
Featured Resource: CareFlash
When people are caring for a loved one, keeping friends and family involved is difficult. Updating and engaging help can be an emotional drain. Organizing much-needed assistance with errands and meals is an exhausting challenge. Trying to be effective is painful when relying on emails and texts especially when you’re between home and the hospital. For most people, trying to help you and your family is awkward because no one wants to intrude. How do you keep everyone meaningfully engaged to help them feel valued?
Through a partnership with CareFlash, Hand to Hold is now able to provide free patient web pages called “care communities” to help you keep friends and family informed and make it easier to mobilize support as you care for a child or children in the NICU and beyond.
“CareFlash is proud to support Hand to Hold in extending their already incredible range of services by collaborating to help create better outcomes in the families they serve,” says Jay Drayer, CEO of CareFlash. Read more and leave a comment.
Helping Hand Highlight: Jennifer Fagan and Her Daughter Natalie Grace
Jennifer Fagan had her daughter Natalie Grace at 26 weeks due to placental abruption. She and her husband Mike have two other children. In addition to serving as a Helping Hand Peer Mentor, Jenn has also been helping facilitate a NICU support group at North Austin Medical Center. She shares below what volunteering to help other parents means to her.
How did you find out about Hand to Hold?
I can’t remember who specifically shared it with me, but it was one of the moms in our mom’s group that met once a week at the hospital while our kiddos were in the NICU.
What Made You Want to Volunteer? What Have You Gotten Out of It?
Hoping to be there for other families was our first reason. There were times we felt alone or isolated. We didn’t know anyone who had gone through delivering a premature baby. Two different opportunities really showed us the value in having someone who has gone through what you’re being faced with to support you. The first was through a weekly mom’s group for the moms with babies in the NICU. The relationships I developed through those get-togethers provided me with comfort, laughter, shared tears, strength and understanding. Second, we received an email from a family at our church who had heard of what we were going through and they reached out to us, listened, prayed and encouraged us. These things helped us to see first hand how impactful that type of support can be. To have an opportunity to be there for someone no matter how great or small, just to let them know that you are there for them, is our hope. Read more and leave a comment.
Consider a Holiday Gift Today
Would you like to help us reach more families this coming year? Want to help us expand the types of support we can make available? Consider a holiday gift to Hand to Hold this year or recurring monthly gift. A gift in any amount will be thoughtfully applied to support our Preemie Parent Empowerment Project. Hand to Hold is a 501(c)3 charity and will send you a prompt receipt and acknowledgement of your gift. For any gift of $25 or more (while supplies last), you can choose to receive a preemie power t-shirt (youth or adult sizes) as our gift to you! Call Angela Wright toll-free 1-855-424-6428 x6 to select the goodie of your choice.
Super Hero Photo Booth Photos Now Available
Thanks to our super hero volunteers, families and the talents of Beverly Demafiles Schulze who captured smiles all around. Download your complimentary image today and see even more photos from the Preemie Power Family Celebration.
NICU Support Groups
Join Hand to Hold's Family Support Navigator, Erika Goyer, for an ongoing NICU Support Group on Thursday, December 15th 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.
Next Lunch & Learn
Join Hand to Hold for the next lunch series event about the Medicaid Buy-In Program for Children on Dec. 9th, noon-1:00pm, at Cafe Express in Austin, Texas. Contact Marty Barnes to RSVP or to be added to the email distribution list for future Lunch & Learn programs.
Run or Volunteer for 26 for 26
It's marathon season in Austin, and Hand to Hold has been selected as one of the charities to be featured along the route of the Austin Marathon to be held February 19, 2012 as part of the 26 Miles for 26 Charities Program. We are looking for Preemie Posse runners to run on Hand to Hold's behalf and we're looking for 100 volunteers to help us staff a water stop along the route. Sounds like fun, yes?
BBVA Compass for Your Cause Program
If you already bank with BBVA Compass Bank or would like to open a new checking or charge account, you can designate Hand to Hold as your charity of choice. Read more about this new cause marketing partnership program which benefits Hand to Hold.
We are also extremely grateful for a generous grant from BBVA Compass that we received this month. Thank you, BBVA Compass!
Photos with Santa Set for December 12
Mark your calendar for Baby Bugaloo's annual visit from Santa on the morning of December 12, 2011. Brooke West Photography will be on hand to capture the magic of Christmas with a portion of proceeds to be donated to Hand to Hold. Stay tuned for more information on times, pricing and reservation instructions. Ho. Ho. Ho.
Bank of America Recognizes Hand to Hold in Neighborhood Excellence Program
Bank of America chose Kelli Kelley as a recipient of their 2011 Local Hero Award through their Neighborhood Excellence Initiative®! The Neighborhood Excellence Initiative is designed to recognize and encourage nonprofits, individuals and students for their community leadership and service. A gift was made to Hand to Hold in Kelli’s honor at an awards reception in Austin, Texas, in early November. Thank you, Bank of America, for your support!
Book Reviews Wanted
Are you a reader? Have you read a book about parenting, prematurity, education, advocacy, grief or another related topic that you think would help other parents? Send us a short write up about the book of your choice, and we'll feature it here for others to learn from. To submit a book review for a future newsletter, please email firstname.lastname@example.org.
Jessica Gorman writes a sweet blog called Thumba-Lea in honor of her micro-preemie, Lea, who was born 11 weeks early on January 4, 2011. Follow her family's journey online. See more family blogs. Send an email to Amy Carr to add yours to the list.
Making Connections: Rising Stars Pediatric Dentistry
Hand to Hold enjoyed taking part in the Halloween Open House at Rising Stars Pediatric Dentistry. Rising Stars has two locations in Austin and strives to provide high quality dentistry to children in a fun, safe and friendly environment.Visit to learn more. Find more resources like this and add your favorite healthcare provider on Hand to Hold's resource directory.
About Hand to Hold
Hand 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.
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