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SUPPORTER UPDATE - JUNE 2012

Preemie Fatherhood at a Moment's Notice

Mike Holding JacksonI was ready for children years before my husband, Mike, embraced the idea. As I impatiently waited for him to give the green light, the ticking of my biological clock constantly rang in my ears. Looking back, I am so thankful he asked for more time – he instinctively knew that parenthood was more than sleepless nights, diapers and play dates. Although he could not have known the tremendous challenges the birth of our micro-preemie would bring, he knew as a father he had to be ready to lead, guide and protect his family – not a role to be entered into lightly.

I truly believe our son, Jackson, would not be alive today had it not been for Mike’s actions during my pre-term labor. He insisted a reluctant EMS team take me by ambulance to the hospital even though they felt a simple visit to my OB would be sufficient. While his abrasive behavior in Labor and Delivery embarrassed me, I am certain it saved us precious time when every second counted. While I had the luxury of being put to sleep for my starring role during delivery, my sweet husband was left to watch helplessly as our one pound eight ounce baby was stripped from my body. For a man who had never seen a birthing video, the experience was horrifying. He told me later that Jackson looked like a limp baby bird with little chance for survival.

Upon arrival at the hospital, my sister recalls finding Mike sitting alone in a hallway with his head buried in his hands softly crying. How could he not be distraught? His son (who was not due for four months) was fighting for his life in the Neonatal Intensive Care Unit, and his wife was unconscious in the next room as doctors worked to put me back together. Just days before, Mike had finished painting the nursery and assembling the crib. He thought he would have months to prepare for the arrival of his child. We were both ill prepared for instant parenthood, but Mike quickly rose to the occasion.

Mike felt an instant bond with Jackson spending hours at his bedside, softly singing to him and telling him all the things they would do together when he grew up. It was an exhausting pace, but Mike split his time between the NICU and my hospital room keeping me apprised of Jackson’s fragile condition. He held my hand and pushed the IV pole as I struggled to master the walk to the NICU. He consulted with the doctors, made phone calls to loved ones, assured our family and friends, dealt with the insurance company and encouraged me as I struggled to keep up with the grueling pumping schedule.

Over the past 11 years since Jackson’s early arrival, I have marveled and celebrated the bond between Mike and our children. The road has not been easy, but his unconditional love, support and open affection has ensured that they both know without doubt that they are loved beyond measure and will always have a dad by their side to protect, encourage and love them unconditionally.

To my amazing husband and dads everywhere – Happy Father’s Day! May it be a day of reflection and celebration as we honor you for all you do!

Kelli D. Kelley, Founder and Executive DirectorHand to Hold

The Day I Became a NICU Dad
by Joel Brens, Papas of Preemies & PreemieBabies101 Blogger

JaydenMy wife had a very normal pregnancy for the first 30 weeks. When she went in for a routine checkup, her blood pressure had skyrocketed. They immediately admitted her and began giving her medicine to get it under control. Unfortunately, I was at work when this happened and was unable to be there for support. She called me at work crying and there was nothing I could do. I felt so guilty and helpless. I just wanted to be there. Luckily, the doctors were able to get her blood pressure under control shortly before I arrived. She spent four days in the hospital and was released on bedrest. Weekly fetal non-stress tests (NST) and biophysicals were a mainstay for the remainder of the pregnancy. Unfortunately, just under 33 weeks she was readmitted to the hospital because doctors had discovered diastolic umbilical artery flow and planned to induce two days later after rounds of steroid shots to help with lung development. That Monday evening, she had her best NST to date, so everything seemed set in stone.

I remember Tuesday morning, May 11, 2010, like it was yesterday. I was a restaurant manager and worked the morning shift that day. I got a call from my wife just before it was time to get ready for work. Her tone seemed pretty normal but my gut said something was wrong because she wasn’t saying much. Something was definitely wrong. I had to go about my business as usual. As I was walking into work, she called again. My heart sank. On the other line my wife was hysterical. Apparently our son’s heart rate had dropped to 60 BPM for approximately four minutes. The doctors had to make the choice right then to do an emergency c-section. Nobody was there with her because we had expected to have our son Wednesday. She needed me there. Immediately. I was in the building with others and needed someone else to cover for me. While 45 minutes doesn’t seem like much under normal circumstances, it was an eternity for me. I spent the 20-minute drive praying our son was going to be okay, crying and occasionally breaking some speeding laws. Read more and leave a comment.

Nourishing Your Premature Baby in the NICU
by Amy Gates, RD, CSP, LD, board certified pediatric nutrition specialist, Georgia Health Sciences University

Amy GatesAdvances in perinatal medicine have improved the survival of premature infants born as early as the 23rd week of pregnancy. Preemies weighing less than one pound often survive and even thrive in NICUs across this country. Undoubtedly, if you are reading this article you have experienced the birth of a preemie. The NICU course can be a long and painful journey for both preemies and their families. One of the greatest milestones these babies will achieve is to learn to feed and grow on their own. It’s important to understand that preterm infants will need to grow and develop at a proportionally faster rate than term infants. So they will require special nutrition to support faster weight gain and growth.

Total Parenteral Nutrition
During the third trimester of pregnancy, the mother passes vital nutrients from her body to that of her unborn baby. When babies are born prematurely, they miss the opportunity to absorb and store these nutrients. The first two weeks of the preemie’s life are often the most difficult. At first, preemies may be fed an intravenous solution of protein, fat and carbohydrates called Total Parenteral Nutrition or TPN. This solution will provide nutrients such as calcium, phosphorus and iron to replace what the mother's body was unable to pass to her baby. Because TPN is a solution, the amounts of these nutrients we can provide are limited. If you remember high school chemistry and the process of osmosis, you remember how elements will move from an area of higher concentration to an area of lesser concentration. Adding too much calcium, protein or iron to a TPN solution will cause those nutrients to precipitate or fall out of solution. This means that only a small amount of what the preemie needs can be provided by the TPN. The TPN is a lifesaving intervention that almost all preemies will need at some point. As with most medical interventions there are limitations to TPN. Because of these limitations, the preferred way to feed the preemie is through the digestive tract. Read more and leave a comment.

For the Love of Cameron
by Laura Romero, Family Support Navigator & PreemieBabies101 Blogger

Romero SiblingsSome things in life just never go as planned, even the expectations we have for the siblings in our family. Growing up with a sister of my own, I am all to familiar with the "we are like night and day" scenario that many siblings speak of when talking about their relationship. Even though my sister and I couldn't be more different, there has always been comfort and security woven into the fabric of my life knowing that she and I have each other. Naturally, when my husband and I decided to have children, God-willing, we decided to have two in hopes that our children would experience that same thing. Not long after our first-born, Cameron, turned 18 months, we found out we were expecting our second bundle of joy. The excitement, the plans and the visions of my two children playing consumed my every thought.

Brooklyn was born at 33 weeks gestation and was diagnosed with cerebral palsy six months later and our son was just shy of 2-1/2 years of age when we received the diagnosis. The experience of having a premature child and then hearing the news that your child will have life-long challenges is overwhelming and traumatic, at minimum. I remember the sense of constant guilt and the overwhelming ache in my heart that developed as a result of feeling as though I was choosing one child over another. Whether I was at the NICU with Brooklyn or at home spending time with Cameron, I thought I needed to be doing the opposite. The task of trying to explain to my toddler why things were happening the way that they were still brings tears to my eyes. Read more and leave a comment.

Featured Resource: GastroKids
by Amy Carr, Hand to Hold Staff

GastroKidsGastroKids provides easy to understand information about the treatment and management of pediatric digestive conditions for children and parents. They have a wealth of information in multiple languages (English, Spanish and French) to help parents and teens navigate how specific conditions are diagnosed, treated and managed for the short- or long-term. They have downloadable guides, videos, podcasts and pre-screened external links. Patients can also connect with them on Facebook and Twitter

In addition to their pediatric digestive disorders A-Z Glossary, GastroKids has collected in-depth information on the following most common conditions:

  • Pediatric Celiac Disease, a serious condition caused by a permanent intolerance for gluten--a protein found in wheat, rye and barley.

  • Eosinophilic esophagitis (EoE), an inflammatory condition in which the wall of the esophagus becomes filled with large numbers of white blood cells causing symptoms similar to GERD.

  • Inflammatory Bowel Disease, which includes both ulcerative colitis and Crohn's disease.

  • Reflux and GERD (gastroesophageal reflux disease) - Reflux or spitting up is very common in young children. It becomes GERD when reflux causes troublesome symptoms such as weight loss, bleeding, respiratory problems or esophagitis.

  • The Nutrition and Obesity section gives information about healthy eating and fitness.

GastroKids is the patient outreach and education effort of NASPGHAN - the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition – an organization of more than 1,400 pediatric gastroenterologists, predominantly in 46 states, the District of Columbia, Puerto Rico, Mexico and 8 provinces in Canada. Read more and leave a comment.

Helping Hand Highlight: Daddy Clay from DadLabs.com Shares His NICU Journey
by Amy Carr, Hand to Hold Staff

Clay Nichols from DadLab.com, an online resource for dads, shares the story of his son’s early birth. Born at 30 weeks gestation at just over 4 lbs, his son is now 14 years old. Daddy Clay reflects on the difficult experience of having a child born premature and the emotional turmoil he and his wife endured during those early days. Clay wishes that Hand to Hold, a nonprofit provider of peer support to preemie parents, had been in existence when their son was younger. He encourages families who have babies in the NICU to connect with Hand to Hold. (Reading this on a mobile device? Click here for a direct link to the embedded video.)

Clay Nichols Describes His NICU Journey

What Does a Pediatric Home Health Provider Do?
Interviewed by Erika Goyer, Family Support Navigator

Christina Aguillon, RNTaking your baby home from the NICU can be both joyful and a little  intimidating. This is especially true for families who find themselves going home with oxygen equipmentapnea monitorssuctioning equipment or complicated feeding and medication regimens. Even when your baby is stable enough to go home, you still might find yourself wanting the assistance of skilled nursing staff to help you with your child’s care. Fortunately, this resource is available to you. Some private insurers offer Private Duty Nursing benefits for qualifying children. More often this service is offered through Medicaid and approved for families through a state run Medicaid Waiver Program. Find out more about programs in your state.

This month, Christina Aguillon, RN from Encompass Pediatric Services in Austin shares information about in-home nursing and what a Pediatric Home Health Provider does.

What is your title and what was your program of professional study?
I am a Registered Nurse (RN) who has worked in pediatrics since the beginning of my nursing career.  Beginning in 1999 I was a Licensed Vocational Nurse (LVN) on the pediatric floor at Scott and White Hospital. Later I transitioned to being a pediatric field staff nurse for a home health agency.  The flexible schedule of a field nurse allowed me to complete my Registered Nurse (RN) degree in 2005.  In 2006, I became Director of Nursing (DON) of a home health agency and in 2010 I joined the Encompass Pediatric Home Health team as the Clinical Administrator. I’m part of a team of nurses who provide home nursing for medically fragile children.

What services do you provide?
Pediatric Home Health companies provide home care for medically fragile children from 0 – 20 years of age.  Pediatric Home Health works more like Private Duty Nursing (PDN) instead of intermittent care which is the case in geriatric home health. When we talk about PDN, we are talking about skilled nursing care provided in the patient’s home on an hourly basis. This could be as little as 4 hours a day or up to 24 hours a day, depending on the needs of the child.  Home nursing is a continuation and an extension of the nursing care that was received in the NICU. Skillful observations, medical treatments, charting, medication management and caregiver education are just some examples of what skilled nursing can do in the home.

When would a family use your services?
A family might come to us for a number of reasons, but in every case it is because their child needs daily nursing care that goes beyond the needs of most children. 
See this definition of what it means for a child to be “medically fragile.”  The physician must determine the medical necessity for a child to have home nursing care upon discharge from the hospital.  This determination is made with the help of hospital discharge planners, social workers, and nursing staff. 
Read more and leave a comment.

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Volunteer to Help Another Family in Need

Couple Sharing their Preterm Birth StoryDid your child have a NICU stay? Did you suffer a loss at any time? Consider giving back to help fellow parents who are new to these experiences and give them a hand to hold. Volunteering as a Helping Hand Mentor is simple – but tremendously impactful.  Support can be provided by phone, e-mail, text or in person depending on what is best for you and the new parent you are mentoring.

Hand to Hold's next in-person volunteer training will be held Sat., June 30th in Austin, Texas. For mentors outside Austin, our online volunteer training will be coming soon! RSVP to Erika Goyer or call 1-855-H2H-NICU ext. 1.

Lunch & Learn: Things to Do in Austin for Kids with Special Needs

Jada SwingingBring a brown bag snack or dinner and join Hand to Hold for the next Lunch & Learn about Things to Do in Austin with Kids with Special Needs.The free event will be held Wed., June 25th, 6:30-7:30 pm at Dell Children's Medical Center - Outpatient Rehab (Enter off of Philomena and Mueller Blvd., Austin) Need some inspiration about fun activities to do with your children no matter their abilities? Come connect with fellow parents who have been where you are now and are eager to share ideas and information about inclusive options for children of all abilities and ages. RSVP to Marty Barnes at marty@handtohold.org

NICU Support Groups

Hot Dogs on a Bun by Mike Johnson - TheBusyBrain.comJoin Hand to Hold's Family Support Navigator, Erika Goyer, for a special NICU Support Group "Dads and Dogs" celebrating dads on Thurs., June 14, at St. David's Medical Center from 6-7 pm. Join us for a hot dog dinner complete with root beer, and a Father's Day cake. Find out more, contact Erika Goyer at 512-550-3181.

Sibling Sundaes Set for Saturday, June 23

Jackson holding sisterHaving a baby brother or sister in the NICU isn't easy for siblings. Bring them to Sibling Sundaes on Sat., June 23 from 2-3 pm 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, create a craft, receive a coloring book, and enjoy some ice cream! Learn more and RSVP today.

Mothers at Austin NICUs Showered with Care

Hand to Hold in partnership with St. David's HealthCare held a Mother's Day brunch for mothers in the NICU at St. David's North Austin Medical Center, St. David's Round Rock Medical Center, and St. David's Medical Center. Professional photographers were on hand to photograph each mom with their baby, and moms enjoyed the fellowship and comfort of other moms undergoing similar experiences. In addition to a photo, each mom received a goodie bag, a copy of Preemie by Kasey Mathews and a gift from our local March of Dimes. Hand to Hold volunteered with the March of Dimes at their events for moms at three local Seton hospitals and brought gifts of books and peer support.

Hand to Hold would like to thank Mead Johnson, Hummingbird Kitchen, Cook Walden, The March of Dimes and our fabulous volunteer photographers - Lourdes Shoaf, Amanda Wintenburg, Barbara Balliette - for their generous contributions to these events.

Mother's Day in the NICU

Parent Hour Hosted with RMH of Fort Worth

Kasey Mathews reads from her book at the RMH of Ft WorthHand to Hold and Ronald McDonald House of Ft. Worth hosted a Parent Hour featuring preemie mother and author Kasey Mathews who shared her personal story with prematurity, read excerpts from her new book Preemie: Lessons in Life, Love, and Motherhood, and answered questions from parents. Her book beautifully articulates the emotional, physical and psychological challenges of parenting a medically fragile child. Hand to Hold provided a signed copy of the book to each family in attendance and information about how to receive support.

National Association of Neonatal Therapists Conf.

Hand to Hold exhibited at and attended the National Association of Neonatal Therapists in Ft. Worth on May 4-5 to network with pediatric therapists and enlist their collaboration and support of Hand to Hold’s parent support program.

NANT Conference - Kasey Mathews, Kelli Kelley, and Sue Ludwi

Have a Baby in the NICU? Get CareFlash.

Allie holding her daughterKeep 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. NEW - CareFlash now offers spiritual/inspirational content and music therapy. Watch a video to see how CareFlash works.

CareFlash

Mark Your Calendar: Preemie Power Kickoff

Preemie Power LogoMark your calendars for Preemie Power night at the Dell Diamond, Fri., 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. Sponsorship opportunities are available. Please contact Angela Wright for more information.

Featured Blog

BlogBea Smith, a nurse and mother of three, blogs about her youngest son Caleb's journey with medical issues following his premature birth. Caleb was born with a congenital condition  called imperforate anus, meaning he was born without a "pooper." Follow their medical battle, faith and the challenges and discoveries along the way on her CaringBridge blog and connect with her on PreemieBabies101.

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.

Join Our Founder's Circle

Founder's Circle logoHand to Hold invites you to become a member of our Founder’s Circle. A gift of $1,000 or more will ensure Hand to Hold is able to build a strong foundation from which to provide comprehensive programs and services to parents of preemies, babies born with special health care needs and those who have experienced a loss. 

A gift of $1,000 can be made in multiple contributions over time or raised among the friends and family members who’ve accompanied you on this journey.To sign up, please contact Angela Wright.

Support the Cause
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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