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SUPPORTER UPDATE - FEBRUARY 2012

The Healing Power of Touch

Holding JacksonTactile sensation including massage, hugs and pats on the back have proven to accelerate recovery from illness, calm us when we are afraid and even help premature babies gain weight.This is not surprising given that our skin is our body’s largest organ. When our skin’s sensory receptors are stimulated, the hormone oxytocin, the "love hormone," is released. At the same time, the stress hormone cortisol is reduced.

Recently while traveling home from a short business trip, I had the opportunity to truly see the power of a simple touch. Our plane had been sitting on the tarmac for quite some time. The flight had already been delayed several times because of weather and the passengers (myself included) were growing restless. Then there was commotion at the front of the plane as three elderly passengers hurriedly boarded and followed the flight attendant down the aisle desperately searching for a vacant seat and an overhead compartment with space for their bags.

The windowseat on my row was empty so I stood to allow one of the women by. It was then that I noticed the tears welling in her eyes. As soon as she sat down she began to frantically make a series of phone calls assuring those on the other end of the line that she was on her way. As the plane ascended, she began to quietly sob behind her wrinkled hands. My heart broke for her as I sat helpless, watching her body shake with anguish.

Clearly she was very distressed.  But, she was a complete stranger.  What could I say or do to offer comfort?  Silently I said a prayer and then took a risk.  I reached out (over the poor man in the middle seat) and placed my hand on the woman’s shoulder.  It was awkward, but exhilarating.  I felt an immediate connection to this person I had never met.  She slowly turned her head to look at me and with tears streaming down her face, she whispered “thank you.”  I kept my hand there and periodically patted her arm.  The man in the middle seat (who spoke limited English) offered to trade seats with me.  I slid over – never removing my hand from my new friend.  

By the end of our short flight, I learned that her brother had a stroke the day before. He lived in Austin and she had not seen him in years. Due to the weather delays, she and her other siblings had missed two earlier connections. Her brother was in poor condition and she was stricken with grief to think she may not get to tell him goodbye. We held hands as she told me about her brother and some of her favorite memories of him growing up. As we departed, she repeatedly thanked me for showing her compassion and we both agreed that there is healing power in touch–even from a stranger.

Studies have found that touch can not only lower blood pressure, help reduce the effects of asthma, and ease migraines, but also touch significantly increases bonding with those around us. Parents of preemies know the power of touch – as well as the anguish in not being able to hold or touch their baby. I well remember how my body ached to hold my son, Jackson, but his situation was much too critical. Weighing just a pound and a half and relying on a ventilator for life, he could not be moved. Because of his underdeveloped nervous system and paper-thin skin, I was encouraged to only lightly stroke the back of his hand with my index finger. I will never forget the day (six weeks after his birth) that I was finally able to hold him skin to skin. I sat in an old rocking chair eagerly watching as a team of nurses worked to remove him from his bed, position his monitors and adjust his breathing tube. They placed him on my chest and it was at that moment that I truly felt like a mom. I felt a connection that had been desperately missing. A sense of calm and hopeful anticipation overcame me as I finally allowed myself to believe that this precious child would live and some day come home from the NICU.

With the proliferation of Facebook, text messaging and Skype, it seems like a great part of our daily human interaction is now virtual. For our own health and that of our children, let’s not forget the healing power of touch and the beauty of a long embrace.

Warmly,

Kelli Kelley, Founder and Executive Director, Hand to Hold

Bonding with Your Medically Fragile Baby in the Neonatal Intensive Care Unit
by Dawn K Gibson, LCSW, Mindful Mothering

Holding Hands in the NICUWhen you initially became pregnant, birthing your baby and having him or her whisked away to the Neonatal Intensive Care Unit (NICU) by hospital staff was most likely not in your plan. Many parents know that bonding after childbirth is important for both parents and baby, and you may have had some ideas about what this meant to you. You might have visualized yourself holding your baby right after the birth, looking into his or her eyes lovingly, or just lying skin-to-skin for a time. No matter what your vision, the reality of birthing a medically fragile infant is typically very different from these images. You may not have been able to hold, let alone touch, your baby right away and you may now be worried that you have lost a major opportunity to bond with your baby. Please know that this is not true. There are many other ways to bond with your baby – even during his or her NICU stay.

Bonding is a Process
Bonding will look different for each individual family due to each baby’s unique circumstances. Certain factors – such as mom’s health, the baby’s medical issues, diagnoses and gestation at birth - will affect the ways in which families can bond. For example, a baby born at 25 weeks cannot be held right away due to its size and medical instability, but a baby born at 34 weeks may be held, depending on his or her medical issues. Even so, some babies are able to tolerate touch very well, while others cannot tolerate touch at all during the initial phase of life. If you were unable to hold your baby within the first 24 hours or the first several weeks of life, please rest assured that your opportunity to bond with your baby was not completely lost. Bonding truly is a process. Read more and leave a comment.

How to Pay for Your NICU Stay 
by Erika Goyer, Family Support Navigator

Enjoy these tips for finding insurance coverage and programs to help care for your child's health no matter where you live in the U.S.

Call Your Employer. Let them know what is going on. If you are a working parent you should ask to speak to someone in Human Resources or Personnel about the following:

  • Your insurance coverage.
  • What time off you have available or accumulated through flex-time, sick time, and vacation time.
  • Whether or not you have temporary disability insurance through your employer.
  • Whether or not your place of business offers time off through the Family Medical Leave Act.

If you have recently been laid off or fired you may still be able to access health insurance from your former employer. To find out more about COBRA (Continuation of Health Coverage Act) and whether or not it is a good option for your family call 1-866-444-3272.

Ask about Perinatal Coverage. Whether you are in the hospital waiting to deliver or already in the NICU, you should be thinking about your perinatal care as well.  Many states offer free or low-cost programs for mothers. They will help you cover your patient care as well as your postpartum follow-up appointments. Call your State Department of Health Services or the WIC Perinatal Program to ask questions.

Read more and leave a comment. Get Texas-specific information on our website.

Understanding PTSD: When the Stress of the NICU Persists
by Blaine H. Carr, PhD, licensed psychologist and father to a preemie daughter

Blaine Carr and daughterAfter a busy weekend and tour of the hospital maternity wing, I was making my pregnant wife a favorite Italian dinner. She called me from another room, and when I went to see, we found her water had broken. “But our daughter is not due for another month,” I was thinking. What did this mean? My wife was terrified. I was terrified. We didn’t even have a name picked out or a bag packed. We found ourselves heading back to the hospital half-expecting and hoping to be sent home. Hours later, my daughter was born and whisked to the NICU because of breathing difficulties. We learned in the early morning that her lung had collapsed, and thus began our NICU stay. At the time, we focused on doing the basics and surviving, but looking back on it five years later, it is much easier for us to see the long-lasting emotional effects this experience had on us and to think about how we’d support ourselves differently with what we know now.

Different Reactions to Trauma
Going through a traumatic experience of a difficult pregnancy, a loss, and/or having one or more babies in the Neonatal Intensive Care Unit can affect parents’ emotions in very different ways. No matter how short or long your baby’s stay is or what the complications are, your reaction may be mild or severe. It is completely normal to feel intense sadness, grief, guilt, shame, anger, disbelief and numbness going through this time, especially when your baby reaches milestones or suffers setbacks. In fact, your baby’s hospitalization may be one of the most stressful times you ever experience.

It would probably then not surprise you to learn that childbirth experiences place parents at risk of developing Post-Traumatic Stress Disorder (PTSD). PTSD is classified as an anxiety disorder, and it is characterized by a collection of persistent, debilitating physical and emotional reactions to traumatic, scary or life-threatening experiences. To make matters more complicated, depression can co-occur with PTSD because of the powerful distress, grief and new caregiving routines that parents are thrust into in the midst of medical procedures, doctors and information overload. Read more and submit a comment.

Featured Resource: Nurtured by Design 
by Amy Carr, Hand to Hold staff and mother of one preemie


Yamile Jackson and her son ZacharyIn 2001, Yamile Jackson, PhD, developed severe pre-eclampsia. In order to save her life and her son's - Zachary had to be delivered prematurely, weighing less than two pounds. Three weeks after his birth, while he was still in the NICU, Tropical Storm Allison flooded Houston and shutdown all power to his hospital including his life-support equipment. His parents and the NICU staff kept him alive "by hand" for 9 hours until he was safely evacuated. Yamile held him in kangaroo care while her husband Larry and nurses took turns "bagging" him. Eventually doctors found hospitals where they could safely evacuate the 79 babies in the NICU. 

An Aha! Moment
During this traumatic experience, Yamile prayed for the opportunity to help babies on Zachary's behalf. Every day for at least 10 hours she was at the hospital personally providing proper intervention strategies, individualized care, and therapeutic touch for her fragile baby. The nurses taught her that her presence was invaluable. When she was not kangarooing she used her hands to provide effective neonatal developmental care practices in comforting, nurturing and healing her convalescent baby. She promised Zachary that his pain and struggle to survive were not going to be in vain. She knew she would use her talents and experience to make the NICU stay more comfortable for other babies.

A Parent's Healing Touch
While the nurses had to care for multiple babies at the same time, Yamile gave her undivided attention to Zachary. However, at the end of each day the agony of leaving her son was too difficult to bear. She kept asking herself, “How can I help Zachary when I am not here?” and wished she could leave her scent and loving touch so her baby would not feel alone or abandoned. Using her background and PhD in ergonomic and human factors engineering, she created two ergonomic hands, Zakys, to simulate her and Larry’s hands. These arms continued giving “undivided attention” to Zachary until his parents returned in the morning. Upon Zachary’s departure from the hospital after 155 days in the NICU, the nurses requested that she make the Zakys to help all the babies in the NICU. Thus, her company was born.
 Read more and leave a comment.

Helping Hand Highlight: Maribel Farish & Her Son Daniel
by Erika Goyer, family support navigator

Maribel Farish and sonHand to Hold is created by parents and for parents. Every one of our staff and board members has had their lives touched by either prematurity or a NICU stay - or both. So when we started Hand to Hold we didn't just want to build a non-profit - we wanted to build a community. Not every one will need every service we offer. But we want you to know that these resources are here for you if you do. Mostly we want you to know that you are not alone. In this Helping Hand Highlight, Mom Maribel Farish shares the programs that have worked for her and the many ways Hand to Hold has touched her and her family's lives.

How did you hear about Hand to Hold? What were you looking for? What did you hope to find?
My son Daniel was born on March 2, 2010, at 31-½ weeks in Brownsville, Texas. Within a week of his birth, he was life-flighted to Texas Children’s Hospital (TCH) in Houston where he spent three months in the NICU III. During this time, my husband, George, commuted regularly between Brownsville, Houston, and Austin. In August of that year, George started in the full-time MBA program at UT Austin while I stayed in Houston to look after Daniel and continue with follow up visits to TCH. Daniel and I finally joined George in September.

After a month of living in Austin and feeling extremely overwhelmed with Daniel’s medical needs, I reached out to a friend of my mother-in-law who told me about Hand to Hold. I immediately looked up Hand to Hold’s website and dialed Kelli’s number.

When I contacted Kelli, I did not know where to start looking for the endless list of specialists and therapists that my son needed. Even though I lived a few blocks away from Dell Children’s Hospital, I was hoping to find a parent that could tell me about his or her experiences with different doctors and therapists in the Austin area. Read more and leave a comment.

Thank you Preemie Posse Runners & Volunteers!

Team pouring gatorade at Hand to Hold's Austin Marathon wateThis past Sunday, February 19th marked Hand to Hold's kickoff of Preemie Posse as part of the LIVESTRONG Austin Marathon 2012. We are grateful to all the brave men and women from Bank of America, Cook-Walden, Turner Construction, Cedar Park High School PALs and more who graciously came out in the wee hours of the morning to help us fill countless cups of water and gatorade at Hand to Hold's water stop!

Dave Alter with Jada at the Austin Marathon 2012We are also grateful to the runners who signed up to run on Hand to Hold's behalf. Dave Alter, Hand to Hold's board president and a proud dad of Jada, who was born early, celebrated Preemie Posseafter the run. Clay Nichols and Brad Powell of DadLabs ran on behalf of Hand to Hold and Colin's Hope, a local drowning prevention program. And, we recognize Robert Goyer, Ruth Powers and Alicia Remaley who ran in our Preemie Posse!

If you have an upcoming race or event, and you'd like to raise awareness and funds to support us, visit Preemie Posse to learn more and sign up!

Sibling Sundaes Set For March 3rd

Sibling Sundaes - Nurse and Parent with IsoletteHaving a baby sister or brother in the NICU can be extremely difficult for older siblings! Join Hand to Hold for Sibling Sundaes on Saturday, March 3, 2012 from 2-3pm in the NICU-Classroom 2 East at St. David's Women's Center of Texas. Sibs will learn about the NICU, make a craft, and enjoy ice cream. Learn more or RSVP to Erika Goyer.

Lunch & Learn: Set for February 24 

mother breastfeeding her baby in nursery ©iStockphoto.com/Maxim You are invited to attend the next Lunch & Learn session February 24, 2012 from 12-1 pm at Austin's First Steps (near St. David's Medical Center). This month’s topic is “Feeding and Nutrition for the NICU Grad - Part 1." Lactation Consultant  Kay Needles-Gregorio and registered dietician Lesley Ivey will share everything you need to know about feeding and nutrition for your child. 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, March 8th at St. David's Medical Center from 6-7pm.  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.

New Video: Understanding PTSD After a NICU Stay

Understanding PTSD After a NICU StayThanks to St. David's Healthcare Foundation for their support of this latest educational video!

Texas M.I.L.K: Texas Moms I'd Like to Know

Texas M.I.L.K.Texas M.I.L.K. founders Lauren Bayne and Claire Jordan established an online community to celebrate remarkable Texas mamas. Hand to Hold's founder Kelli Kelley was featured on their blog this month.

In addition, Texas M.I.L.K. will be having a Mom's Rock! Showcase on Saturday, March 18th from 11am-5pm celebrating motherhood and music.

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

Upcoming Reception to Honor Hand to Hold Supporters

Hand to Hold Reception 2012On Thursday evening, April 26, 2012, Hand to Hold will host a reception at The Mansion at Judge's Hill in downtown Austin to recognize and celebrate all of our donors, supporters and volunteers from the past year. For more information, contact Angela Wright.

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

BlogMichael & Ollie: 24-weekers Who Beat the Odds is part of a memoir project about raising preemies to adulthood. Michael and Ollie are now 20 years old. Read about their amazing journey. See more family blogs. Send an email to Amy Carr to add yours to the list.

Siblings Soar: A Brotherly Bond

Enjoy this heartwarming video of two brothers Conner, 8,  and Cayden, 6, Long,  who compete in triathalons despite Cayden having cerebral palsy. Tom Rinaldi of ESPN’s E:60 really captures big brother Conner’s voice and why competing with his young brother is so important to him. Leave a comment.

A Brotherly Bond

Celebrate Parents of Preemies Day March 23

Parents of Preemies DayGraham's Foundation in partnership with other parent support organizations like Hand to Hold is sponsoring the first Parents of Preemies Day on March 23, 2012. Visit their site to learn more. 

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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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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