Sharing the Journey of Prematurity and Loss
Mother’s Day will soon be here – a time to celebrate and honor mothers and motherhood – a time to reflect on the influence our mothers (or a significant maternal figure) had in our lives. And hopefully, a time where we, as moms are encouraged to relax and enjoy a little pampering.
For moms with a baby in the Neonatal Intensive Care Unit (NICU), Mother’s Day can be bittersweet. No woman plans or expects to begin her journey as a mom this way! But for more than 500,000 moms each year, their babies arrive too soon and too small, and must be whisked away to be cared for in a NICU.
I wrestled with my role as a mom for many months following the preterm birth of my son. (Read my full story.) I felt more like a bystander than his mother because I was unable to hold him, feed him or participate in his complicated medical care. I was ashamed because I found the first photos of him to be terrifying and disconcerting. I was plagued with guilt for “failing” to carry him to term. I desperately just wanted to start over. I was not sure I could handle being the mom of such a medically fragile child.
For years I kept these feelings of guilt and shame to myself. What kind of mother would people think I was if I admitted that I did not feel an immediate bond with my own baby? It was not until I read the transcript for the new book entitled, Preemie: Lessons in Love, Life and Motherhood, written by preemie mom Kasey Mathews, that I fully accepted the emotions I felt after Jackson’s early birth and understood that they were normal. With each page of the book I found myself shaking my head in understanding and wiping away tears of gratitude for the courage of the author to allow herself to be so vulnerable and voice her darkest secrets.
I scribbled notes in the margins. I underlined sentences, phrases and full paragraphs, and on page after page I found myself writing, “Yes! That is exactly how I felt.” I could not put the book down and I could not wait to meet the author – who felt like a long lost sister.
Kasey and I have become fast friends. It has been my honor to accompany her on the long journey of her book’s publication – from transcript rewrites, to finding the perfect publisher and finalizing the front cover. I absolutely cannot wait for the book to hit the shelves because this book about prematurity goes beyond the story of a tiny baby overcoming tremendous medical challenges – this book is about the journey of the mom of a preemie. Preemie beautifully chronicles the emotional, physical and psychological challenges that parents of preemies face. And most importantly, it illustrates the transformational power of allowing ourselves to be vulnerable while stepping up and doing more than we ever thought possible.
Hand to Hold will be participating in many Mother’s Day celebrations at local NICUs in the coming weeks. As our gift to these special moms, Hand to Hold will provide each mom with a copy of Preemie: Lessons in Love, Life and Motherhood along with a promise to be there with them through their NICU journey and beyond. Kasey wrote her book because during her daughter’s NICU stay and for years that followed, she longed for the comfort, compassion and true understanding that could be given only by another parent who had walked in her shoes. Together we hope to comfort, inspire and empower moms who so desperately need a Hand to Hold.
To all moms – those with babies in the NICU, now at home, or in the hand’s of God – many blessings on Mother’s Day and always.
Kelli D. Kelley, Founder and Executive Director, Hand to Hold
Order your copy of Preemie: Lessons in Love, Life and Motherhood,which will be available May 29, 2012.
Hand to Hold Honors Award Winners at Spring Reception
by Angela Wright, Events Planner, Hand to Hold
At Hand to Hold’s annual spring reception held on Thursday, April 26 at the Mansion at Judges' Hill, Founder and Executive Director, Kelli Kelley, expressed heartwarming words of gratitude to the families, medical professionals, community partners, corporate sponsors and individual donors who have helped advance the mission of Hand to Hold over the past year. Jeff Garvey, President and CEO of Austin Community Foundation, started the program with a few opening remarks.
Hand to Hold named Mead Johnson Nutrition, St. David’s HealthCare and a local family foundation as its 2011-2012 Corporate Heroes.
Hand to Hold is honored to have earned the support of Mead Johnson Nutrition whose products directly benefit the lives of hundreds of thousands of babies all over the world. This unique and exciting collaboration will ensure parents of preemies receive information, support and education during and after a NICU stay, starting with distribution of Hand to Hold’s print newsletter, Hand Prints, to 600 Level III NICUs across the country.
St. David’s HealthCare has supported Hand to Hold since its inception, serving as a pilot location for innovative support and education programs for parents of preemies. Their dedicated leadership and staff play an important role in the continued growth of the organization, and Hand to Hold is honored to serve as one of their many community partners dedicated to the health and well being of Central Texans.
The emotions of the evening continued as Program Director Erika Goyer made a touching presentation to Hand to Hold’s Volunteer of the Year. Marty Barnes, mother of a preemie and Hand to Hold’s Volunteer Parent Education Coordinator, serves as a Helping Hand peer mentor and has been the driving force behind Hand to Hold’s Lunch & Learn series. These monthly educational discussions bring parents and health professionals together to talk about topics concerning their child and family’s care. "Marty’s willingness to share her knowledge, passion and experience has benefited the families of Hand to Hold in innumerable and immeasurable ways," shared Goyer.
Hand to Hold’s spring reception program closed on a tearful yet joyful note as a video was shown of parents sharing their story of premature birth and as singer Sarah Sharp shared her rendition of Over the Rainbow as images of past Preemie Power participants flashed across the screen in time to the music. It is with a thankful heart that Hand to Hold extends its gratitude to all our reception sponsors without whom the evening would not have been possible, including Cook-Walden Funeral Homes, Erica Egner Graphic Design, Sarah Sharp & Buffalo Speedway, Mansion at Judges’ Hill, OfficeMax at Lakeline, Peary Photography, Tito’s Vodka and Melissa Turner.
Questions Every Pregnant Mother Should Ask About Preterm Birth
by Darline Turner-Lee, mother to preemie Vanessa and founder of Mamas on Bedrest and Beyond
As a parent of a late-term preemie, I found myself completely unprepared for the emotional fallout after my child was born early and with breathing problems. Term births are considered pregnancies carried to 40 weeks. Babies born at 37 week gestation or earlier are considered premature. Even though I had been at risk and was very nearly on bedrest at several different points during my pregnancy, the topic of a neonatal ICU (NICU) stay never entered the conversation. I worked in the medical field for many years and still felt unprepared for my child’s stay. (The story of my daughter's preterm birth will be featured on PreemieBabies101 this Friday, May 4th.) I sincerely wish my OB and I could have discussed these possibilities in advance. If you are pregnant, here’s some tips and questions to help you prepare your own backup plan in case your child is born earlier than expected or with complications.
Have a frank discussion with you obstetrician about preterm labor and prematurity. As your pregnancy progresses, ask them, “What would happen to my baby if s/he were born today?” Find out if your hospital has a NICU, what level of care it provides and if your baby could receive care there. Get in the habit of asking the question and don’t let them hedge the answers. Your question may be met with, “Why would you want to even contemplate such a thing? Everything is just fine” or “You stay calm and let me worry about you and this baby.” Keep pressing. It’s important that you know what to expect.
Learn the Signs of Preterm Labor & Have a Backup Plan
Learn the signs of preterm labor, and discuss this with your obstetrician. Have a tentative plan for what you would do and who you would call if you went into labor earlier than expected. Read more and submit a comment.
Plagiocephaly: The 411
by Kathryn Whitaker, PreemieBabies101 Lead Blogger
For many preemies, plagiocephaly (and in some cases, brachycephaly) are yet another thing in which they struggle. Our son became a high risk after having three bowel surgeries, as a direct result of NEC (necrotizing enterocolitis). He spent much of his early months on his back and was developmentally delayed in things like rolling and crawling. Those surgeries also greatly weakened his core muscles. In addition, he struggled with torticollis, or a tightening of the muscles on one side of his neck that didn't allow for full range of movement, thus making both his plagiocephaly and brachycephaly worse. If you're on Pinterest, check out Hand to Hold's board on plagiocephaly for articles, helmet bling, information and more. Here are few things we learned about symptoms, diagnosis and treatment.
- Recognize the signs. You might initially notice that your infant can easily turn his head to one side and not the other which could indicate torticollis. The severity, however, would have to be assessed by a medical professional. As a result of that stiff neck, perhaps you notice a "flattening" on one side of the head, the ears may be assymetrical or the shape of the head is no longer round. If you have concerns, visit with your pediatrician. She may refer you to a specialist, like a plagio clinic or a plastic surgeon for further assessment. Our neurosurgeon first noticed our son Luke's flattening on the back of his head and referred us to our local plagio clinic. After an hour-long assessment it was determined that our son was a candidate for physical therapy and a helmet to help correct the bone formation. Two great online resources for more information about plagiocephaly, brachycephaly and torticollis are Alexandra's P.H.A.T.E. and Baby Begin.
- What you can do. There are certainly home-based treatments you can try. Initially, we tried stretching his neck using techniques given to us by Luke's physical therapist. In addition, the therapist encouraged us to be aware of his head placement and to stimulate his attention on the side with his stiff neck.
- Visit with your pediatrician about physical therapy. During Luke's three-month well check, my pediatrician was very proactive and mentioned that Luke was at a higher risk for developing torticollis and plagiocephaly, due to his complicated medical history and tethered spinal cord. Fortunately, she gave us the signs to look for and we were prepared when we began to see them.
Read more and submit a comment on our PreemieBabies101 Blog.
Featured Resource: Wrap Buddies
by Kathryn Whitaker, PreemieBabies101 Lead Blogger
In 2010, when our son was fitted for a helmet to correct his plagiocephaly and brachycephaly, we were thrilled to learn of a non-profit, located in Dallas, that wrapped orthotic helmets for free. Each month 360 Wraps, a for-profit business, closes their shop and opens it to parents and kids, like our son, to wrap about 15 helmets. For us, the atmostphere was festive, welcoming and understanding as we made connections with other parents facing a similar situation.
However, as the owner Tommy Strader (who still personally wraps every helmet!) started working on the first helmet, he began to tell us the story of how Wrap Buddies was born. It was his witness and his easy-going candor that left the room speechless, sprinkled with bits of laughter.
In 2009, a father contacted 360 Wraps and asked if they would wrap his son’s helmet. Tommy had never heard of plagiocephaly, but decided it couldn’t be much different than wrapping a motorcycle helmet. He typically charges $300-$1,000, but when he learned of the out-of-pocket cost to purchase the orthosis, sometimes as high as $4,000, he gifted the helmet to this father and his son. News spread like wildfire and the shop started getting numerous calls a day. Read more and leave a comment.
Tips to Create a Safe Sleep Environment
by Erika Goyer, Hand to Hold Family Support Navigator & Amy Carr, Public Awareness Director
There are few pleasures that can compare with holding your sleeping baby in your arms. Any parent who has spent time in the NICU can tell you exactly what it meant to them to hold their baby for the first time! Once we bring our fragile babies home we do everything we can to keep them close and protect them. This includes being well-informed about safe sleep practices. This begins with the ABC’s. All babies should sleep:
- On their Back
- In a Crib
Reduce the Risk
According to First Candle, “Despite the existence of compelling research and statistics about the importance of safe sleep in reducing our nation’s high rate of infant mortality, the number of babies who die in adult beds and other unsafe sleep environments is on the rise. In fact, of the more than 4,500 sudden, unexpected infant deaths each year, statistics show that as many as 80-90 percent are the result of unsafe sleep practices. These are preventable deaths.” Unsafe sleeping environments might include an adult sleeping with a baby on an overstuffed couch, placing an infant in a crib with a bumper and with pillows and toys, or sleeping with them in an adult bed with comforters and pillows.
Share a Room, Not a Bed
Caring for an infant, especially an infant who has recently returned home from the hospital, can be an exhausting time for parents under the best circumstances. Some preemies may come home with special equipment, such as apnea monitors, oxygen or feeding tubes which makes having their own space very important.
Read more and leave a comment.
Walk With Us at March for Babies, May 5th
Join Hand to Hold’s Preemie Power team and show your support for March of Dimes and for a healthy start for all babies. Wear your Preemie Power t-shirt (or show up and we'll give you one while supplies last) or come dressed as your favorite super hero! We’ll be walking together then hosting a craft and photo booth at Auditorium Shores. 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!
Lunch & Learn: Home Health for the NICU Grad
Bring a brown bag lunch and join Hand to Hold for the next Lunch & Learn about home health for the NICU graduate. The free event will be held Monday May 14th, noon-1pm at Encompass Pediatric Services, 9101 Burnet Rd, Ste 214, Austin, 78728. When preemies come home, some may need in-home medical care. Learn about common health needs preemies have and how home health providers can make the transition from NICU to home easier. RSVP to Marty Barnes at email@example.com.
NICU Support Groups
Join Hand to Hold's Family Support Navigator, Erika Goyer, for an ongoing NICU Support Group on Thursdays, May 24 and June 14, 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. Find out more, contact Erika Goyer at 512-550-3181.
Sibling Sundaes Set for Saturday, May 19
Having a baby brother or sister in the NICU isn't easy for older siblings. Bring them to Sibling Sundaes on Saturday, May 19 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, how to keep their sibling safe once they come home, how to make a sweet craft for their baby sister or brother, and enjoy a tasty ice cream snack! Learn more and RSVP today.
New Nutrition Videos Now Available
Feeding a baby after a NICU stay comes with its own set of challenges. Hand to Hold’s newest educational videos discuss breastfeeding, fortification and tips to find help when you need it. Many thanks to Austin's First Steps, St. David's Foundation and St. David's HealthCare for their support of Hand to Hold’s growing video resource library.
Preemie Nutrition: Nutritional Needs & Fortification
Preemie Nutrition: Increasing Your Milk Supply
Making Connections: Seton Medical Center NICU Reunion
Hand to Hold was honored to participate in Seton Medical Center’s NICU Reunion held April 21. Hand to Hold hosted a craft table with activities for a variety of ages and shared information with NICU graduate parents about Hand to Hold’s Helping Hand peer support program.
Have a Baby in the NICU? Get CareFlash.
Keep 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.
Helping Hand Highlight: Preemie Parents Share the Power of Peer Connections
Four preemie mothers share why peer support was so important to them after the birth of their children. This video was featured at Hand to Hold's Spring Reception. Read more and leave a comment.
Mark Your Calendar: Preemie Power Kickoff
Mark 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 for more information.
Kasey Mathews, the author of Preemie, blogs about her daughter's premature birth. She writes, "My premature journey began November of 2000 when I thought I’d given birth to the smallest baby ever born...After my daughter was born, I longed for a compassionate woman who had been in my shoes to sit on the end of my bed and share her story with me. It wouldn’t matter how different or similar our stories were, just to have someone who understood what it felt like to know trauma." Follow her to share the lessons she's learned and is still learning about love, life and motherhood.
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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Learn more about how Hand to Hold empowers preemie parents and help us with a tax-deductible gift of any amount so we can expand our services to serve more families.
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