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SUPPORTER UPDATE - OCTOBER 2011

Halloween - Not as Scary as the NICU

Jackson's first Halloween in the NICUI will admit it; I am not a big fan of Halloween. I don’t like skeletons and masks with fake blood and frightening scars. I hide my eyes from trailers for horror films because I am still haunted by memories of watching Friday the 13th when I was a teenager. For awhile I enjoyed reading a mystery series but as the stories became more violent, so did my dreams and my husband insisted I stop reading them because he was tired of being awoken at night to reassure me that I was safe. 

Sadly, as the parent of preemies, there are many scary things I have not been able to avoid. I think even the most hardened scary movie buff would shudder if required to stand at their one pound baby’s bedside and hear the many challenges their baby might face including breathing on their own without the use of machines, cerebral palsy, mental retardation, hearing and vision loss and more. The Neonatal Intensive Care Unit (NICU) is possibly one of the scariest places I have ever known. I would much prefer to tour a Halloween-themed haunted house than spend countless months in the NICU watching and listening to the many machines keeping my baby alive.

Unfortunately for many preemie parents, the scary challenges our preemies might face do not end at discharge from the hospital. We still fear Respiratory Syncytial Virus (RSV), the leading cause of re-hospitalization for preemies. This frightening virus presents as a common cold in most adults but for preemies it can mean death. I am certain I was more scared of my preemie being exposed to germs during cold and flu season than I ever was of Freddy Krueger. The knowledge that after months of fighting for his life in the NICU that my son could lose his battle with prematurity because of a respiratory virus was horrifying.

Hand to Hold strives to educate parents about the potential challenges their NICU graduate might face–not to scare them, but to prepare them to best meet the needs of their baby. Through generous support from St. David’s Foundation, Hand to Hold has begun production of a series of videos about issues of concern for parents of preemies. “Protect Your Preemie from RSV,” is the first video in the series. It is our hope that it will answer important questions of concern for parents and prepare them to advocate for their child’s ongoing medical needs.

I like happy endings. I need to know what the future holds – no surprise twists of plot. The Preemie Power stories inspire me and fill me full of hope and awe. So while I understand the fascination with things that scare us and the desire to feel those tiny hairs on the back of our necks stand up, I much prefer and look forward to Thanksgiving, a time to rejoice and be thankful for the gifts we have received! I look foward to seeing many of you at the Preemie Power Family Celebration on Sunday, November 13th.  

Kelli Kelley, Founder and Executive Director, Hand to Hold

High Anticipation Set for Preemie Power Family Celebration

Family at Preemie PowerJoin Hand to Hold for the second annual Preemie Power Family Celebration and Region-wide NICU reunion on Sunday, November 13 from 1-3 p.m. Everyone is welcome to attend, and all the activities and refreshments are free! The celebration will be held on the fourth floor of the Fellowship and Education Building at Covenant Presbyterian Church (3003 Northland Dr, Austin).

Batman and RobinWin cupcakes at the cupcake walk, pose with your favorite super hero, fish for a prize, request a balloon sculpture, jump in the bounce houses, make a super hero mask to take home, enjoy refreshments, and congratulate our 2011 Preemie Power Photo and Essay Contest winners. All participants past and present will be recognized and honored. Richard Hammett, father of a preemie and COO of St. David's Medical Center, will serve as our Master of Preemies. Winners of this year's contest will be announced online and at the event, where they will be presented with their prize packages. Visit the website for the latest details.

RSV 101: What Every NICU Parent Needs to Know

by Kelli Kelley, parent of two preemies and Amy Carr, mother of one preemie

Tiger Mask - CC License Courtesy of CB and GKFor most infants, respiratory syncytial (sin-SISH-uhl) virus (RSV) causes an illness like a common cold in the upper and lower respiratory tracts. But some babies, including those born preterm and those with special health care needs, may be at high risk for a severe infection which can cause pneumonia or bronchiolitis, inflammation of the small airways in the lung. These conditions can lead to serious complications, re-hospitalization and in some cases, death. According to the Institute of Allergy and Infectious Diseases, 75,000 to 125,000 children in the United States are admitted to the hospital for RSV infections each year. Fortunately, education about the virus and prevention steps can help you reduce your child's risk.

Ariel Doggett shares her family's experience with RSV: “Like most families RSV hit us unexpectedly. Our son, Will, was born four weeks early, at the tail end of RSV season and didn't meet the criteria to qualify for Synagis®. I was not fully aware of all the dangers of RSV. Will ended up contracting RSV when he was three and a half weeks old. He quickly deteriorated medically and was med flighted to Children's Hospital in Boston. He was placed on life support within his first week of hospitalization and as a last resort ended up on a heart-lung bypass system for almost two weeks. During his subsequent three month ICU stay for RSV he suffered a stroke that left him with a significant visual deficit, right-sided weakness, chronic lung disease and asthma. Read more and leave a comment.

Now I Know - An RSV Story
by Kasey Mathews, author, blogger, and mother of son Tucker and daughter Andie who weighed just 1 lb, 11 ounces at birth

Protect Your Preemie From RSV VideoOn Friday morning I sat down on my yoga mat and the tears instantly began to flow.They journeyed from my eyes, down my cheeks, to the edge of my jaw line, dropping in little puddles on my mat.

Looking at the tiny pools, I wondered what the heck I was crying about. (Watch the video. Kasey tells the story of her daughter's re-hospitalization due to RSV. Her story begins at 5:43.)

And then, in the next moment, I knew.

I knew why on Monday, I’d screamed at the man who pulled out in front of me as the traffic light turned green.

I knew why on Tuesday, I’d snapped at my son when he’d forgotten his homework at school.

I knew why we’d eaten takeout three nights in a row and why I’d had to drag myself out of bed each morning. I knew why my lower back throbbed and why I hadn’t walked all week.

I knew why I’d forgotten my dentist appointment on Wednesday and why after a lunch of coffee and cookies on Thursday, I still hadn’t mustered up the energy to return phone calls and emails.

As the tear puddles grew and my teacher began class, I remained still, sitting crossed-legged on my mat, absorbing the realization that all week I’d been stuck back in time, nearly nine years ago when my daughter had contracted RSV.

Months ago when Kelli from Hand to Hold asked me to contribute to a video they were making about RSV, I’d happily agreed. The deadline had been months away, and I’d given little thought to the reality of sitting down in front of a camera and telling the story of my daughter’s battle with that dreaded virus. Read more and submit a comment.

Inclusion & Halloween: Making Halloween Accessible for All Children

Nurse CaseyInclusion is an important word, especially when used to describe how we can build communities that welcome kids with special needs. To most of us, the term “special needs” conjures up images of physical differences, like the outward traits of Down Syndrome or the use of prosthetics for missing limbs. But not all disabilities are so apparent. Special needs can also refer to dietary issues (food allergies), developmental issues (autism) or attentional issues (ADHD), for example. How do we make sure we are including all children when we might not be sure what they need. The best thing to do is ask their parents!

The CLU Campaign, the brainchild of Marty Barnes who is a parent of a child with special healthcare needs, was established to help find ways to promote, improve and establish inCLUsion for special needs individuals. There are many inclusion efforts in place in schools and businesses that you might already know about such as ramps and special viewings at movie theaters for those with sensory issues. CLU wants to expand these efforts into the community.

To kick off the campaign, CLU has launched its Trick-or-Treat Project. For many kids, candy is simply not an option, but we don’t want those kids to miss out on the fun of Halloween. The Trick-or-Treat Project provides these kids with the option to trick-or-treat at participating houses, knowing they will receive non-candy treats. Read more and leave a comment.

Helping Hand Highlight: Finding Support When You're Far Away From Home

Manos laborales, cc license from Daquella ManeraAlthough they call Washington State home, Loran and her husband were living in Japan when their baby was born. In May 2010, Terra came into the world at 24 weeks and just 286 grams (0.6 pounds). She was in the hospital in Osaka until November. In January, Terra’s mom, Loran, contacted Hand to Hold about how to get connected with other families. She was paired with Colleen, a fellow parent of a preemie, who has served as her long-distance Helping Hand peer mentor.

How did you find Hand to Hold and what made you want to use this resource?

I found Hand to Hold when I was browsing the Internet looking for support groups for micropreemie parents. It sounded like a nice, easy-to-use site, so I wrote! As many parents have or are learning, there are a lot of unknowns with micropreemies and not a lot of information is available, so it is really great to have a site like Hand to Hold.

What were some of the things you encountered being in Japan and so far away from Seattle when Terra was in the NICU?

In our situation, it has been especially trying just figuring out what kind of services we should be trying to get for Terra. I feel like our NICU and hospital stay was very good and we got a lot of support there, but once we came home, it seemed that there was not a lot of follow-up support. It took us awhile to figure out that it wasn’t that Terra didn’t need follow-up, it was that there isn’t a lot of knowledge on this side of the hospital doors about micropreemies. So as long as she was not really sick, they were fine to just “see what happens.” We wanted to be more proactive, and so have had to rely on groups like Hand to Hold to figure out what practices are like in the States and then try to get that support here.Of course, there are also language issues; even though our doctor speaks English very well, a lot of the things we have to discuss are out of his league. And truth be told, even in our own language, we aren’t sure what we are talking about!

In what ways has being connected with Colleen made a difference?

Meeting other parents, even just as pen pals, is very useful in that it helps us not feel totally isolated here. It is nice to know that Terra is progressing normally for a micropreemie and that her issues are pretty common. It is also nice just to have someone outside the family to vent to now and then when things get kind of frustrating. Read more and leave a comment.

What To Do If You Suspect Your Child Has a Learning Disability
by Erika Goyer, Hand to Hold Family Support Navigator

Child Reading - Creative Common License courtesy of John MorEvery child has unique developmental needs, but some children’s needs are greater than others. Most children who spend time in the NICU will experience a developmental delay of one kind or another. Some of those delays are immediately apparent and others will take years to emerge. Early childhood interventions (age birth to three) are meant to quickly identify and address delays so that young children can reach their potential.  (In previous articles, we talked about early childhood development and what to do if you suspect your child is experiencing delays.) But at what point can you tell if a short-term delay is actually the first signs of a long-term problem? And how do you get help?

The first thing to know is that it is perfectly normal to need special education support. When a child is born early and has special medical needs at birth, it is natural that they will most likely have unique educational needs later on. The next thing to remember is that you are not alone. According to LD Online, The National Institutes of Health estimates that one in seven Americans has a learning disability and more than 2.7 million students in our public schools receive special help and instruction in school because of their learning disabilities. Finally, remind yourself that this is a good thing! We are fortunate to be at the point where families and educators can recognize and address what were once “invisible disabilities” and get kids the help and educational supports they need to be successful learners. Read the complete article and leave a comment.

Featured Resource: Bump Club and Beyond

Bump Club and BeyondAre you pregnant? A new mom? Looking for a connection with other moms and moms-to-be who know what you are going through? Bump Club and Beyond, which started in Chicago in April 2010 and has now expanded to Austin, offers Girls’ Night Out events, lunch and dinner seminars, discounted shopping, exercise classes and more. Member and Austin founder Jenn Larson happily became a fixture at BCB events after she moved to Chicago and learned she was pregnant. When she realized she would be moving back to Austin, she and Chicago founder Lindsay Spolan Pinchuk decided the women of Austin would benefit from the same supportive, social community that Chicago had embraced.

Austin’s Bump Club and Beyond debuted with its first event in October 2011 and will be hosting a number of upcoming events – some for families, some just for moms and others for moms and babies. Hand to Hold is excited to highlight a BCB-hosted Family Boot Camp Fitness Class, appropriate for all levels, set for Nov. 19 at 11 am at Shoal Creek led by Meagan Linstruth of Baby Bootcamp. Registration is $15 and will directly benefit Hand to Hold. Registration will open the first week of November.

“I have a special place in my heart for the super parents of preemies after experiencing challenges with my own pregnancy,” said Jenn Larson, Austin BCB founder. “Bump Club and Beyond provided me with a support system similar to what Hand to Hold does for a very special group of new moms – those that endure less than ideal birth experiences.” Read more and leave a comment.

Preemie Power Logo
Support Your Favorite Super Hero Preemies; Voting Ends November 1!  

We are thrilled that so many parents are participating in the 2nd Annual Preemie Power Photo Contest. This isn't your ordinary contest - the competition is fierce yet the comments supportive and inspiring! The last day to place your vote is just before midnight on Tuesday, November 1st. Winners will be announced online and at the Preemie Power Family Celebration Nov. 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.

Pay It Forward to More Families in Need

Couple Sharing their Preterm Birth StoryAre you passionate about helping other familes who have had a NICU baby or a loss? Hand to Hold now offers you the chance to create your own fundraising page to tell your family's story and raise resources that will fund the Preemie Parent Empowerment Project. Those who have participated so far have been shocked at how quickly friends and family have rallied to support their chosen cause. Start your fundraising page today.

NICU Support Groups

Hands of supportJoin Hand to Hold's Family Support Navigator, Erika Goyer, December 15th 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! A future time will also be scheduled for St. David's North Austin Medical Center. Check back for the next date. 

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!

Next Lunch & Learn - Special Needs Trusts 

Ronald GreeningJoin us November 10th to learn more about special needs trusts to prepare for your child's finanical security. Ronald Greening of The Greening Law Firm, will share more information and answer questions about this important tool for securing a higher quality of life for your child.

Missed the Medicaid Waiver session earlier this month? Not to worry. A plethora of information will be posted online shortly. Read more.

Hand to Hold Contributes to Late-Term Preemie Guidelines

National Perinatal AssociationThe National Perinatal Association has asked Kelli Kelley to serve as a parent liaison and spokesperson as they work to facilitate the development of Multidisciplinary Guidelines for the Care of Late-Preterm Infants. 

Hand to Hold Visits With Families at a Recent NICU Reunion

St. David's Medical Center NICU Reunion 2011Earlier this month, Hand to Hold attended the NICU reunion at St. David's Medical Center. Staff visited with families and shared resources and volunteer opportunities with Hand to Hold. Children enjoyed making sand-crafts to take home.

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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Support the Cause
Monetary contributions of any size will make a direct impact as they are thoughtfully applied to further the mission to empower and support more families who have had a child in the NICU or a loss. Hand to Hold is a 501(c)3 charity.

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

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