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SUPPORTER UPDATE - MARCH/APRIL 2012

Our Children's Nutrition

Jackson's first bottleI was a formula fed baby. To my mom, breastfeeding was somewhat of a taboo subject. I think she was taken a little off guard when I informed her early in my pregnancy that I planned to breastfeed her first grandchild. When Jackson was born 16 weeks preterm, weighing just one pound and eight ounces, he was too medically fragile to breast feed at first. Even if his medical condition would have allowed me to hold him, his brain lacked the developmental capacity to successfully suck, swallow, and remember to breathe. But, as a preemie, his need for breast milk was even more crucial. (Pictured is Jackson receiving his first bottle at 2 months; he learned to breastfeed at 6 months of age.)

 Shortly after Jackson’s birth, I was encouraged to begin a rigorous pumping routine to stimulate my milk supply. Even though Jackson could not breastfeed, he could still greatly benefit from the immunological factors that are unique to human milk. I was blessed to have an abundant supply of milk. Unfortunately, many moms of preemies are not as lucky. The past decade has seen the proliferation of milk banks across the country to ensure babies that are unable to receive milk from their biological parent, can receive safe, donated, human milk. (If you are currently nursing and would like information about milk donation, visit the Human Milk Banking Association of North America to find the location of a milk bank near you).

As amazing and as critical as breast milk is for preemies, it often falls short in meeting the needs of the smallest and sickest babies. For these preemies, a human milk fortifier is required to ensure adequate amounts of protein, fat, vitamins and minerals are present to support the accelerated growth rate of the smallest infants. (During the first six months of life, a term infant will double its weight while a preemie’s weight will triple).

Enfamil brandstampThe only commercially sterile liquid human milk fortifier on the market is made by Mead Johnson Nutrition. Founded in 1905 by E. Mead Johnson, whose son had special health care needs complicated by feeding challenges, the company’s mission is to nourish the world’s children for the best start in life. I am very proud to announce Hand to Hold’s collaboration with Mead Johnson, which will allow Hand to Hold’s print newsletter, “Hand Prints” to be distributed to 650 Level III NICUs across the country!

"Mead Johnson Nutrition is excited to work with Hand to Hold to provide the parents of premature babies with relevant and compassionate support, so that their children may achieve the best start in life."

Hand to Hold is honored to have earned the support of a company whose products directly benefit the lives of hundreds of thousands of babies all over the world each year. This unique and exciting collaboration will ensure parents of preemies receive information, support and education during and after a NICU stay.

Kelli Kelley, Founder and Executive Director, Hand to Hold

Calling All Parent Bloggers
by Kathryn Whitaker, mother of 5 including two preemies & Lead PreemieBabies101 Blogger 

Preemie Babies 101Hand to Hold is excited to announce the debut of our parent blog, Preemiebabies101. This blog was generously gifted to Hand to Hold by Afton Mower, the mother of two preemies and one full-term child. We look forward to carrying on the torch of prematurity awareness and continuing the important work she began on behalf of so many families. See what's in store.

Whether you have a preemie and spent time in the NICU, have a special needs child or have experienced a loss, this blog reaches out to parents touched by all of these issues. We are looking to build a diverse base of bloggers to share their personal experience on a wide variety of topics related to prematurity. Prior to publication, all content will be reviewed. Bloggers will receive no compensation for their posts; however, they will receive plenty of kudos and warm fuzzies for sharing their knowledge and opinions to help other families. Find out how to get started!

Surviving the NICU is hard, life after discharge is even harder. Please consider signing on as a featured blogger and sharing your experience with other parents.

Top Ten: How to Survive the NICU
by Kathryn Whitaker, mother of 5 including two preemies & Lead PreemieBabies101 Blogger 

Kathryn feeding LukeHow does one do it? How do you care for other children and obligations at home while nurturing and loving your very sick preemie? How do you hold your marriage together? Eat decent meals? Keep your sanity alive?

I don’t know that I have expert answers to any of those questions, but I can share what worked for me. My most important advice? Learn to forgive yourself. You will not win an award for “Best Put Together NICU Mom” -- there is no such honor. Living the NICU experience was the hardest thing I’ve ever done. I yelled at God, my kids, my husband and myself, the house looked horrible, I was completely anti-social and I put up walls with people I loved because all my energy was expended on making it to the next minute. You will get your life back, it just won’t be what it was before. And that’s ok. You don’t have to have it all figured out. You just have to love your family. The rest will come in time.

YOU ARE NOT ALONE. Just close your eyes for a moment, girl, and feel the love. So many of us have walked in your shoes. We know how heavy the cross is, how uncertain and scared you feel. I know that you feel like life is spinning out of control and you just want to get off the tilt-a-whirl. I never wanted to join the Preemie Mom Club, it didn’t sound too glamorous. { it isn’t } But, it is full of some of the strongest women I know. I’ve learned to do things I never thought possible and I’ve learned to love until it hurts. You can do this. No really, you can. You will. You ARE.

  1. Say YES to help. When friends ask how to help, tell them. Whether you need someone to run carpool, pick up groceries, mow your lawn, take you to lunch, buy your granny underwear for that unexpected c-section—whatever you need, humble yourself and ask. You can’t go this alone.

Read the next nine survival tips and submit a comment.

Caring for Your Mental Health During Your High-Risk Pregnancy While on Bed Rest
by Dawn K. Gibson, LCSW, Mindful Mothering

waiting by Paul Nicholson available through Creative CommonsIn our society, being pregnant is seen as a joyous event; something to celebrate, not something to endure. However, once a woman learns that her health and/or her baby’s health is in danger and she is placed on bed rest, her entire pregnancy and outlook changes. Although mothers know that being on bed rest is best for them and their babies, lying in bed all day can evoke a host of unexpected emotions. Women may feel isolated, angry, scared, sad, and helpless, or as if they have lost control over their bodies, babies, and lives. Even so, there are many ways a woman can empower herself, gain some sense of control over her life and care for her mental health and her baby while feeling “stuck” in bed.

Self-Care on Bed Rest
Self-care is important for everyone, especially during pregnancy, after having a child, and ESPECIALLY during a high-risk pregnancy. It is easy to allow being on bed rest to take over your emotions, sometimes leaving you feeling helpless – like you have lost control over your own life. Click the link to read strategies that can be used to implement your own individualized self-care plan and help you to begin to feel empowered, even while on bed rest. Read more and submit a comment.

Meet the Provider: What Does a Dietitian Do?
Interviewed by Erika Goyer, Family Support Navigator

Leslie IveyAll children have unique nutritional needs – but this is especially true for babies who were preemies, micro-preemies or who have special health care needs. Some infants are able to establish a feeding routine soon after they’re born. Others will need help to overcome structural or physiological barriers to feeding.

While your baby was in the NICU they were cared for by a NICU dietitian who monitored their nutrition, caloric intake and growth. After your child is discharged you will need to continue to monitor their nutritional needs. A good discharge plan can help, but it is crucial that you follow-up with your pediatrician as well. Ideally, you and your doctors will seek the assistance of a pediatric dietitian who can work closely with you and your child to establish the best possible feeding routine for your baby.

This month Hand to Hold interviewed Leslie Ivey RD, LD. Leslie is a registered and licensed dietitian with Austin’s First Steps High Risk Follow-Up Clinic. She has five years of experience as a NICU dietitian at St. David’s Hospital, two year’s experience as a private practice dietitian working with both pediatric and adult clients, and has been working with NICU graduates at Austin’s First Steps clinic for a year and a half now since the clinic first opened.

What is your title and what was your program of study?
I am a Registered and Licensed Dietitian. I have a bachelor of science in Nutrition from the University of Texas at Austin and completed my internship through their Coordinated Program in Dietetics. The initials after my name refer to Registered Dietitian (RD) and Licensed Dietitian (LD). I am registered through the Commission on Dietetic Registration and licensed through the Texas State Board of Examiners of Dietitians. Read more and leave a comment.

Featured Resource: Feeding Tube Awareness Foundation
Interviewed by Erika Goyer, Family Support Navigator

Making the decision to tube feed is never an easy one. Tube feeding is frequently associated with gravely ill adults, not as a way to help children get the nutrition and hydration they need to be able to grow, thrive, and develop. And tube feeding can be a scary prospect for parents, but it doesn’t have to be. Thanks to moms Traci Nagy and Laura Wagner.

Harmony Receiving a Bolus FeedingNever Underestimate the Power of Parents
Traci Nagy’s son, Lucas, received his first feeding tube in August 2008 at two months of age. She wasn’t satisfied with the resources available to new parents on tube feeding and the general lack of awareness among the general public of the benefit tube feeding can have to medically complex children like her son. In June 2010, Traci launched the 
“Let’s Get a Tube Fed Child on Sesame Street!” campaign on Facebook. In October 2010, she galvanized an effort to create Feeding Tube Awareness Week which resulted in creating the organization, website and Facebook support page.

 Laura Wagner’s daughter, Harmony (pictured above receiving a bolus feeding), has had a feeding tube since she was born in June 2009. Laura has been an advocate for creating awareness through her blog and her group on Babycenter.com, Special Needs and Medically Complex Kiddos. She pushed to make the Feeding Tube Awareness Foundation a non-profit organization.

A Movement is Born
Feeding Tube Awareness was founded in 2010 as a means of supporting parents of tube fed children and raising positive awareness of tube feeding as a life-saving medical intervention. Tens of thousands of infants and children are able to live, grow and thrive because of tube feeding. The organization is dedicated to providing parents and caregivers with practical information needed for day-to-day life with a tube-fed child. In addition, FTA strives to raise positive awareness of tube feeding as a life-saving medical intervention, so that children who are tube fed enjoy increased acceptance in society and parents have greater support in their care. Traci and Laura want tube feeding families to know that they are not alone, even though they can sometimes feel like they are.
Read more and submit a comment.

Hand to Hold Seeks Volunteers to Staff Ronald McDonald Family Room
by Amy Carr, Public Awareness Director

RMHC Family Room at St. David's Women's CenterRonald McDonald Family Rooms are run by staff and volunteers who work closely with hospital staff to provide the most comfortable and relaxing environment possible for current NICU parents. Beginning this month,  Hand to Hold volunteers will staff the Ronald McDonald Family Room at St. David’s Women’s Center of Texas. We are seeking volunteers for Mondays from 9:00am to 1:00pm. While they are there, Hand to Hold volunteers will offer comfort and care for the families who are dealing with the stress of a NICU stay.  "Hand to Hold is extremely proud to be collaborating with the Ronald McDonald House Charities of Austin & Central Texas to provide volunteers for their Family Room at St. David’s Women’s Center," said Kelli Kelley, Founder and Executive Director of Hand to Hold. "Family Rooms serve as an important respite for NICU parents.  We hope many Hand to Hold families will choose to give of their time to ensure new parents have access to a hot cup of coffee, a relaxing place to rest and the support of another parent who has walked in their shoes.”

Read more about this new volunteer role. Or, get in touch with Gwen Claessen, Hand to Hold’s RMHC Volunteer Coordinator.

Helping Hand Highlight: Gwen Claessen - Helping Families Find Refuge in the Hospital

Gwen ClaessenWe interview Hand to Hold’s new Ronald McDonald House Charities Volunteer Coordinator Gwen Claessen about why she wanted to get involved with Hand to Hold and the Ronald McDonald House - and why she thinks other healthcare professionals should, too. 

Tell us a little bit about your professional background.
After being a stay-at-home mom of three for 10 years, with the support of my family, I returned to school in 2010 to become a registered nurse.  My clinical rotations at Austin area hospitals like Dell Children’s Medical Center gave me insight into a vast number of opportunities working within our community.  After being involved as a mother with organizations like local milk banks and La Leche League, I felt drawn to one specialty in particular, the NICU, because of the tremendous opportunities to apply who I am to caring, advocating, and supporting these tiny patients and the people who love them.  I expanded on this interest by interning as a postpartum caregiver, obtaining my neonatal resuscitation certification, attending specialized training on neonatal transport protocols with Children’s Memorial Hermann Hospital Houston NICU, and participating in lactation management training with the State of Texas.

How did you hear about Hand to Hold? What got you interested in volunteering?
I found Hand to Hold on the internet in my search to understand the NICU experience from a parent and patient point of view that would contrast with the “clinical” view that my educational experiences have provided me.  The first Hand to Hold event I attended was a Lunch and Learn on “Nutrition for the NICU Grad.”  The meeting was filled with information from healthcare professionals and NICU parents who shared personal stories and challenges.  I knew from that moment on that I wanted to be involved with the dynamic Hand to Hold organization and help in any way possible to connect families with opportunities and resources during their stay in the NICU and beyond. Read more and leave a comment.

Join Us on Pinterest
by Amy Carr, Hand to Hold Public Awareness Director

pinterest screenshotHave your heard of Pinterest, the social media application that has created quite a buzz in recent months? Hand to Hold sure has!

Pinterest's claim to fame is its ability to allow users to curate or collect interesting people, places, videos and things they find on the web. These items are "pinned" on an unlimited number of virtual corkboards - called "pinboards."

  • Use it to get inspiration by searching by keyword or visually.
  • Use it to collect links you want to find later. (Each image or "pin" usually links to the original website where it is found.)
  • Connect to friends who have similiar interests and find out what they think is neat and valuable.

Hand to Hold has pinned links to preemie blogs we like, self-care resources, products for NICU babies, crafts, preemie style, quotes, awesome accessibility, books, technology/apps, and more! Follow us at www.pinterest.com/handtohold. Happy pinning! P.S. If you need an invitation to join Pinterest, drop me a line.

Hand to Hold Reception, April 26

Hand to Hold Reception 2012We hope to see you on Thursday evening, April 26, 2012, at a reception in downtown Austin at the Mansion at Judges' Hill from 6 pm to 7:30 pm honoring all of our donors, supporters and volunteers from the past year. See invitation. Light hors d'oeuvres and beverages will be served. Please consider dinner reservations following the reception at our host venue's onsite restaurant at the Mansion at Judges' Hill. For more information, contact Angela Wright.

Next Lunch & Learn Set for April 16

Feeding ToddlerOur March/April Lunch & Learn program will feature Feeding Facts for the NICU Grad and More: Part II on April 16, 2012 from 12-1 pm at Austin's First Steps High Risk Followup Clinic. The session features a panel of speakers who will discuss feeding issues, feeding clinics and tube feeding including: Dr. Rahel Berhane, a Gastroenterologist with 'Specially for Children as well as Seton's Comprehensive Care Clinic; Carmen Huston, MA, CCC/SLP, a Feeding Therapist with Dell Children's; and Lesley Ivey, LD, RD, a registered dietitian from Austin's First Steps. Visit our Lunch & Learn page to learn more and RSVP.

NICU Support Groups

Casey in the NICUJoin Hand to Hold's Family Support Navigator, Erika Goyer, for an ongoing NICU Support Group on Thursday April 12, at St. David's Medical Center from 6-7 pm. Pizza will be served. A support group is also ongoing at St. David's North Austin Medical Center. For more information, contact Erika Goyer at 512-550-3181.

Upcoming NICU Reunion

Mom and NICU rad at Seton NICU Reunion 2011Seton Medical Center Austin's NICU Reunion will be held April 21 from 1-4 pm at Bailey Square Park. Hand to Hold will also be there, so stop by to enjoy some crafts and say hello!  Find out more details.

Sibling Sundaes Set for Saturday, April 28

Sibling Sundaes - Nurse and Parent with IsoletteHaving a baby brother or sister in the NICU isn't easy for older siblings. Bring them to Sibling Sundaes on Saturday, April 28 from 2-3pm at St. David's North Austin Medical Center (NICU Classroom 2 East) for a fun, educational program for older siblings to inform them about equipment in the NICU, to keep their sibling safe once they come home, to make a sweet craft for their baby sister or brother, and to enjoy a tasty ice cream snack! Learn more and RSVP today.

March of Dimes' March for Babies

March for BabiesJoin Hand to Hold’s team,  “Preemie Power” and show your support for a healthy start for all babies.  Wear your Preemie Power t-shirt or come dressed as your favorite super hero!  There is no obligation to donate or fundraise, just come show your support for this important cause and raise awareness of the amazing super hero qualities of all our children. The March for Babies in Austin will be held on May 5, 2012, beginning at 9 am at Auditorium Shores. Contact Kelli Kelley or visit our volunteer spot page to sign up!

Have a Baby in the Hospital Now? Get CareFlash

Knight baby in the NICUKeep your loved ones connected and updated with 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

A Memorial Service Honoring Precious Babies

Kelli Kelley and Erika Goyer at St. David's Memorial ServiceParents and staff of Hand to Hold were honored to participate in St. David’s Healthcare's March 25 memorial service for babies of St. David's patients, hosted by Cook-Walden of Pflugerville. Families and hospital staff came together to celebrate the lives of the children they care for. Their names were read as family laid flowers in their honor and received a memorial gift from Hand to Hold and St. David's. Later at the reception Erika Goyer and Kelli Kelley shared support group and bereavement resource information with parents to help them on their journey.

Making Connections

Hand to Hold Executive Director, Kelli Kelley, joined local pediatric medical professionals for a presentation by Amy Gates, a Board Certified Pediatric Nutrition Specialist from Georgia Health Sciences University, Augusta, Georgia. The discussion, “Leading the Way: Supporting the Nutritional Needs of the Preterm Infant” focused on advancements in nutrition for the preterm infant and the need for breast milk fortification during the baby’s NICU stay and in most cases for many months following discharge. Fortification is necessary to ensure adequate amounts of proteins, fats, vitamins and minerals to support brain development and other vital organs. The first two weeks of the baby’s life are the most critical and many hospitals now swab the inside of a baby’s cheek with the mother’s colostrum if the baby is unable to feed – in an effort to reduce NEC. Pictured below are Lourdes M. Shoaf, Executive Territory Business Manager, Mead Johnson Nutritionals and Amy Gates, RD, CSP, LD, a Board Certified Pediatric Nutrition Specialist from Georgia Health Sciences University.

Infant Nutrition Leading the Way

Students Pay it Forward
Canyon Creek Elementary Students Pay it Forward for Hand toStudents at Canyon Creek Elementary in Round Rock, TX chose Hand to Hold as their benefitting charity for their annual Pay It Forward service project.  Students collected baby items such as diapers, baby wipes, blankets, toys and books and prepared gift bags for parents receiving support from Hand to Hold.  Hand to Hold is truly grateful for this very generous donation and hope these gifts will serve as a source of comfort to parents during and after their child’s NICU stay.

Mark Your Calendar: Preemie Power Kickoff

Preemie Power LogoMark your calendars for Preemie Power night at the Dell Diamond, Friday, August 24. Round Rock Express Vice President and General Manager, George King, will serve as Master of Preemies 2012. A Family Celebration will be held prior to the first pitch – which will be made by the reigning Preemie Power winners Ikey and Reagon Kohler. Sponsorship opportunities are available. Please contact Angela Wright at angela@handtohold.org for more information.

Featured Blog

BlogNoah's Dad is a blog that gives an inside look at a family raising a child diagnosed with Down Syndrome. They tell Noah's story in 1-minute videos, and have lots of resources for new parents. They have dedicated themselves to showing the world what joy their son brings to their lives.

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.

Find out how to join the Founder’s Circle.

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Past Issues
Read more Hand to Hold Supporter Updates.

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

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