Hand to Hold

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SUPPORTER UPDATE - SEPTEMBER 2011

Some Heroes Are Smaller Than Others –
Much Smaller!

Kelli Kelley holding spider babyNo one knows this better than the parent of a preemie! Hand to Hold created Preemie Power –  a photo contest, team fundraiser, and family celebration – to recognize these tiny super heroes for the amazing obstacles they have overcome, often despite tremendous odds. Preemie Power also serves to educate the community about the difficult challenges preemies and babies born with special health care needs face during and after the NICU – sometimes for many years after their complicated births.

Thundering Thurston, 2010 Preemie Power winner in the 0-12 month age category, was expected to die in utero.  But he had other plans! For 12 precious months, Thurston fought gallantly and touched the lives of countless friends, family members, medical staff and perfect strangers.  When I went to see Thurston for what I knew would be the last time, his tiny Preemie Power cape hung beside his crib. I vowed then that Preemie Power would be an annual event so that we could celebrate and cherish these amazing medical marvels who defy odds and teach us lessons about grit and perseverance and faith.  (Visit the Preemie Power blog to read about all of amazing Preemie Power contestants last year.)

Hand to Hold will launch the Preemie Power photo and essay contest on Saturday, October 1, 2011. I can’t wait to read the creative narratives about courageous babies that have defeated arch enemies such as respirators, infections and birth defects. So start brainstorming about the perfect super hero name for your preemie and find a photo that captures their inner strength and outward charm.

New this year, Hand to Hold invites NICU families and the medical professionals who love them to create a Preemie Power Fundraising Team in support of the Preemie Parent Empowerment Project. Funds raised through Preemie Power will provide vital resources to families during and after a NICU stay including information about Post Traumatic Stress Disorder, peer-to-peer support matching, educational videos, support groups and ongoing education about the challenges many preemies face.

Mark your calendars now to join Hand to Hold for the Preemie Power Family Celebration on Sunday, November 13th from 1-3 p.m. in the Fellowship and Education Building at Covenant Presbyterian Church located at 3003 Northland Drive.  We will celebrate all the 2011 Preemie Power participants, announce the contest winners, and enjoy music, carnival games and visits from our favorite super heroes.  

True super heroes are not always faster than a speeding bullet or more powerful than a locomotive.  Sometimes they start life weighing little more than a pound and rather than leaping tall buildings with a single bound, they simply touch our hearts and change our lives forever.  

Kelli Kelley, Founder and Executive Director, Hand to Hold

Meet the Provider: What Does a Lactation Consultant Do?
by Erika Goyer, Hand to Hold Family Support Navigator

Nursing a preemieMost of us think that because breastfeeding is nature’s way of meeting our babies’ needs that nursing should come, well… naturally. But many of us struggle to learn the carefully choreographed dance between mom and infant to make feeding successful! This is especially true if you and your baby end up in the NICU. Being born early or with special health needs means that a baby may not quite be ready to nurse yet. And mothers may find themselves trying to establish a healthy milk supply under very challenging conditions - and possibly weeks before they expected to.

Yet NICU parents know more than anyone else how special breast milk is and the difference it makes for their children. In spite of all the barriers, mothers who have babies in the NICU actually go home nursing their infants at a higher rate than mothers who had uncomplicated birth – and continue to breastfeed longer.

This month we interviewed Kay Gregorio. Kay is an Internationally Board Certified Lactation Consultant and a NICU nurse at St. David’s Medical Center. We sat down with her to talk about how a lactation consultant can assist you and your baby as you establish your nursing routine. 

Read more and leave a comment.

The Gift of Human Milk
by Kelli Kelley, mother of two preemies

Human breast milk in bottlesFollowing the early birth of my son Jackson, born at 24 weeks gestation, one of the few things I could do to support his fragile start in life was to provide my breast milk. As preterm infants typically are unable to breast feed due to respiratory complications and lack of ororhythmic control, most moms must pump and store their milk which will later be provided to their child by tube feedings.

Pumping takes a lot of dedication –  much like breastfeeding a newborn baby. I well remember a friend once trying to console me about Jackson’s long NICU stay by saying, “Well at least you will be rested when he comes home.” What she did not know or understand was that I was still getting up several times a night – only I was awakened by the sounds of my alarm signaling me that it was time to pump – rather than the sweet cries of a newborn baby. I sat in silence except for the swoosh, swoosh, swoosh of the pump with no baby to hold or cheeks to softly kiss. It was not easy, but I am proud of the hours I spent attached to the crazy contraption we call a breast pump because I know human breast milk is like liquid gold for preterm infants.

Read more and submit a comment.

Welcome Hand to Hold's Newest Staff Member

Angela WrightAngela Wright has joined Hand to Hold to assist in managing event and development activities. She will play a key role in planning Hand to Hold’s annual signature event – Preemie Power. In addition, Angela will leverage her project and process management skills to build operational efficiencies as the organization continues to grow. She brings with her more than 13 years of experience in marketing communications and public relations.

“I’m truly excited about this opportunity to help advance the mission of Hand to Hold,” said Angela. “The Austin community has been extremely supportive as Hand to Hold continues to build out its programs, and it will be a privilege to help take these support services and resources into more and more communities.”

Angela is returning to work after staying home for two years to care for her three boys. During that time, she volunteered for a number of organizations including Hand to Hold. She graduated from the University of Texas at Austin with a Bachelor of Science degree in Advertising. You can reach her at angela@handtohold.org or 855-424-6428, ext. 6.

Book Review: Heaven is for Real
by Babs Garrett Haller, mother to preemie twins--Kate who is now 4 years old and Jack who died in utero.

Heaven is for RealI was six months pregnant with Jack when suddenly his heartbeat could no longer be heard. One month shy of the fourth anniversary of losing my sweet boy, I sent out a request for donations in his honor to be made to Hand to Hold. A week before the dreaded anniversary, a package arrived from my grandmother and namesake.

It reminded me of my first Valentine's Day in college when a care package arrived. It, too, was from Granny Garrett (as she is affectionately known to 24 grandkids and great-grandkids.) I opened the package to reveal the book Heaven is for Real described as the real-life account of a young boy, Colton, who emerges from life-saving surgery with remarkable stories of his visit to Heaven. Read the complete review and leave a comment.

To submit a book review for a future newsletter, please email kelli@handtohold.org.

Featured Resource: Epic MedStaff

Epic MedStaffEpic MedStaff Services, Inc. is a home health agency licensed in the state of Texas. They provide in-home pediatric care from skilled nursing to sitters to care for your child's special medical needs and for your peace of mind. Currently, Epic cares for infants and children with conditions such as: Acute/Chronic Respiratory Disease, Tracheostomy Ventilator Dependent, Cerebral Palsy, Spina Bifida and Genetic Disorders.  They are available 24 hours a day 7 days a week and take most insurance. They are also part of the Comprehensive Care Program (CCP) and Medically Dependant Children Program (MDCP).

“Epic is a family conscious company that understands the struggles and daily challenges of caring for a medically fragile child in the home,” said Brett Tebbe, Executive Director. “Epic specializes in caring for children by providing a safe environment that nourishes the physical and mental development of each special needs child. There is no greater joy than hearing a child laugh, or seeing their smile, and knowing that we were a part of that by providing the specialized care that they deserve.”

Read more about Epic MedStaff and learn of more resources that can be found in Hand to Hold's online interactive directory.

Family Story: Maribel Farish

Maribel Farish and sonMaribel Farish and her family arrived in Austin last year after an extended three-month NICU stay with her son in Houston. A dear friend connected her to Hand to Hold, and she was immediately matched with a Helping Hand peer mentor.

Maribel shares, “When a family receives the gift of a premature baby that turns into a child with special needs, our lives and dreams take a complete shift! Our worlds, hearts and minds are shaken in a way that transform us into a totally different individual! In a moment of crisis and in the years to come, a family needs love, support and a variety of resources from family, friends and the community! Hand to Hold has provided multiple resources to our family and many other families!”

To volunteer to support a family or fill another role, contact Erika Goyer.

Preemie Power Logo
Enter a Photo, Share Your Child's Amazing Story 

Share your child's photo and your story in Hand to Hold's Annual Preemie Power Photo/Essay Contest! Submit your photo starting October 1 so it will be ready in time for the voting phase, which begins October 17! We can't wait to help you celebrate your precious child/ren's accomplishments! Winners will be announced online and at the Preemie Power Family Celebration November 13. 

Thanks to Our Preemie Power Sponsors 

St. David's Foundation

St. David's Healthcare

Enfamil

Austin's First Steps, Epic MedStaff, Germer Gertz Beaman & Brown, LLP, H-E-B, Knight Construction, Mothers' Milk Bank at Austin, Roger Beasley Mazda, Proof Advertising, & Sonic.

NICU Support Groups

Hands of supportJoin Hand to Hold's Family Support Navigator, Erika Goyer, on Oct. 6th and 20th at St. David's North Austin Medical Center and October 4th and 18th at St. David's Medical Center from 6:30-8pm for the next installment in The NICU Survival Guide: What Every Parent Needs to Know. Pizza will be served!

Sibling Sundaes Set for October 8

child eating ice creamSibling Sundaes, formerly known as Ice Cream & Isolettes, will be held Saturday, October 8 at St. David's North Austin Medical Center from 3-4 p.m. Siblings will learn about why babies are in the NICU, see first-hand the medical equipment used to keep babies in the NICU healthy and safe, how to keep germs away from babies, and create a special craft for their own baby sister or brother. Ice Cream is generously provided by Blue Bell Ice Cream.  Read more.

Join Hand to Hold's Preemie Posse

Preemie PosseHand to Hold has been selected as one of the participants in the 26 Miles for 26 Charities program which is in support of the 2012 LIVESTRONG Austin Marathon & Half Marathon to be held February 19, 2012. The program provides Central Texas non-profits with the opportunity to advance community awareness while raising money to support their mission. Now you can run and support Hand to Hold at the same time!

New Ronald McDonald House Family Room Opens at Dell Children's

Hand to Hold presents a book to RMDH Ken BurressHand to Hold's Kelli Kelley presented a book to Ronald McDonald House Charities of Austin & Central Texas Chief Executive Officer Kent Burress for families to enjoy at the grand opening of the new Ronald McDonald House Room located within Dell Children's NICU. 

Hand to Hold Makes Pediatric Grand Rounds

Kelli Kelley recently spoke to pediatricians at Pediatric Grand Rounds at the UT Health Science Center San Antonio about the challenges many preemies and their families face after the NICU.  She also served as the keynote speaker at the Educational Summit on Prematurity - Empowering Parents of Premature Babies During the First Three Years of Life. Read more.

Kelli Kelley speaks at UTHSCSA.

NICU Nurses Receive Treats on September 15

Hand to Hold delivers treats and thanks to NICU NursesHand to Hold families wrote heartfelt thank you notes, baked goodies, assembled and delivered treat baskets to local Central Texas NICUs in celebration of Neonatal Nurse Appreciation Day held September 15. 

Charitable Business Alliance Collects Items for Bastrop Fire Victims

Charitable Business Alliance collects donations for BastropBOND Boutique, Rae Cosmetics, and Children’s Medical Group collected diapers, clothes, pillows, toiletries, food, and more to assist children and families who have been affected by the recent Central Texas Fires. Patrons brought donations through September 9th and items were distributed by volunteers working in Bastrop.Thanks to everyone who participated!

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.

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

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