Meet Lisa Ruley and Her NICU Grad, Sloane

Helping Hand Peer Mentor Lisa Ruley describes the familiar kinship of a NICU experience and why she decided to get involved to support other families new to the experience. Her daughter Sloane, now 5, was born at term and faced complications that landed her in the NICU with more equipment and tubes than most of the babies there who were smaller than she was. Volunteering has tremendous meaning for her because only other parents who have been on the NICU rollercoaster really understand the ride.

Lisa and Jason Ruly, Photo Courtesy Ruly Family

Meet Lisa and Jason Ruley with daughters Sloane (5) and Morgan (3)

How did you find out about Hand to Hold?

I had heard of Hand to Hold through the children’s clothing store, Baby Bugaloo.  It’s in my neck of the woods and just happens to be owned by my neighbor.  Baby Bugaloo has sponsored a few fundraising events for Hand to Hold.  Then, while attending the Seton Medical Center NICU Reunion Picnic, I saw that Hand to Hold had a booth set up with information about volunteering.

What made you want to volunteer?

I have been looking for volunteer opportunities, and while there are countless great causes out there, there wasn’t one that I felt especially connected to.  When I saw the mission of Hand to Hold, I knew that it was something I could wholeheartedly get behind and help with because of our NICU experience.

What has connecting with other parents meant to you?

To me, connecting with other parents means validation.  Having a baby in NICU is an experience that is unique and has an effect on you long after your child has “graduated.”  It takes time to learn to cope with that kind of stress. No one can relate to this except parents who have been there.

What would you like to share with other NICU families?

I would like to share that it’s okay to feel cheated out of the experience of having a “normal” delivery or “normal” baby.  It’s okay to grieve that loss.  As a family expecting a baby, you have this picture built up in your mind of going into the hospital, having an uncomplicated delivery and leaving a few days later with a healthy baby.  When this doesn’t happen, it’s devastating.  It’s okay to be devastated.  It doesn’t mean you aren’t happy to be a parent or that you aren’t completely in love with your child.  It just takes a while to find what normal is going to be for your family.

What would you tell parents about being in the NICU? What do you wish someone had told you?

I would like to tell parents to let your support system support you and be specific.  We were so blessed to have many family members and friends support us during our stay at the NICU.  And while we appreciated so much that people wanted to visit us and show their support, it was always tough to carve out time for visitors when you are working around a NICU schedule, pumping every three hours, etc.  I wish that someone would have told me that it was okay to tell that support person that our schedule didn’t leave much time for visiting, but we could really use someone taking our dogs for a walk, or giving me a ride home once my husband had to go back to work, or doing one of the many things that needed to be done.  I know now that these wonderful people would have been glad to do any of those things.

How do you think you NICU experience was unique? How did it differ from what the other parents around you were going through? How was it the same?

Our NICU experience was somewhat unique just because Sloane was a term baby.  I’ll never forget entering the NICU where the baby’s footprints were displayed.  You could pick out her footprint in an instant because it was so much bigger than all of the other babies!  She was originally on a high frequency ventilator, so she took up more space and had more equipment than those babies around us.  All things considered though, I think our experience was more similar to the other parents than unique or different.  We were all on a similar journey.  We were learning a new medical language, learning to bond with our babies despite tubes and equipment, and getting to know the doctors and nurses.  Also, despite the different reasons we were in the NICU, all of the parents were learning to deal with the stress of having a sick child and riding a roller coaster of emotions.  These similarities are exactly why Hand to Hold can make such a difference in the lives of NICU families.

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Sherri and Andy Smetana and their Daughters, Sophie & Lily: A Mother’s Dream

Sophie and Lily Smetana

Sherri and Andy Smetana share the story of the birth and hospitalization of their twins, Lily and Sophie , and the challenges they experienced after being released from the NICU. They volunteer as Helping Hand peer mentors to “help others KNOW they don’t have to do it alone, there are no judgments, and someone has walked in their shoes.”

On December 15, 2008, my husband and I saw my first ultrasound – surprise, we were having twins! We were so thankful and felt so blessed to have two little miracles joining our family. We had always wanted to have two children, so having twins seemed like it would be a dream come true.

After an otherwise ordinary pregnancy, our twin girls, Lily and Sophie, were born at 34 weeks and 3 days. My water broke and I knew the babies were coming even though it was six weeks too early. My dream of having a “normal” pregnancy and delivery was crushed in that moment. I had a quick and easy c-section and I heard those sweet girls cry, but they were rushed to the NICU after a quick kiss from mommy. I never had the happy scene of delivering my babies and holding them in my arms surrounded by family and well wishers in the hospital. Luckily my girls just needed a bit more time to grow but the NICU time was extremely hard and the days at home were even harder. [Read more…]

Melissa Overy and Sons Aidan and Dom

Have you ever had a friend whose circumstances are so overwhelming that you are exhausted just from imagining yourself in their shoes for a moment? Melissa Overy is one of those friends. And yet it’s difficult to say whether her determination or smile is her most admirable quality as she blazes a trail for her young boys with the weight of the world on her shoulders. “Indomitable” is the perfect adjective to describe her as one of her preemies is actually named “Dom.” At the playground you can see him and his older preemie brother, Aidan, as two happy, rambunctious boys jumping, climbing and running. But at home you will encounter his bleach baths, tubes and feeding pumps. We all agree that raising young children is challenging, but raising medically fragile children as a single mom must be completely overwhelming. But not for Melissa. She takes each day in stride and is not afraid to glance off at the the horizon often too. Each week consists of full-time employment, part-time education, single motherhood, specialists appointments, fevers that require emergency room visits, G-tube maintenance, and somehow even time as a Helping Hand volunteer at Hand to Hold. Below you’ll hear about this incredible mom in her own words.

Hi. My name is Melissa and my Christmas miracle, born 6 weeks premature, is Aidan. I was 17 years-old when he was discharged from the NICU. For five years Aidan surpassed expectations and overcame every obstacle. He was in great health while I was starting to question my own. An ER visit revealed that pregnancy was the source of my physical discomfort, but it’s the emotional pain I remember most upon hearing that it appeared to be ectopic. Two weeks later a second ultrasound confirmed that there was no growth in my uterus so a procedure was scheduled to terminate my pregnancy. [Read more…]

Melissa McSpadden and Her Sons Landon & Gavin

October is National Pregnancy & Infant Loss Awareness Month.  78 infants are lost each day in the U.S. — 2,474 babies in Texas each year.We were so excited to give our two-year old daughter Camryn a sibling so imagine our shock and joy when we found out we were having twins!

For 4 months the pregnancy progressed normally. We found out they were boys and identical. We started on their nursery; painting it blue, buying the furniture, the bedding, and even several matching outfits.

At around 20 weeks I had tremendous pain and swelling in my belly. My husband took me to the emergency room and the ultrasound revealed that I had excess fluid in the sac where the boys were growing. A specialist would see me the following Monday but that appointment never came.

In the middle of the night I had a “rolling” feeling. “There is no way this could be labor”, I thought. I was only 22 weeks and 5 days along. We sped to the hospital, running red lights and all.

[Read more…]

Volunteers

Share Your Experience

BECOME A HELPING HAND – MENTOR A FELLOW PARENT

Are you a seasoned parent NICU parent or baby born with special health care needs? Have you experienced a loss? Are you ready to help others who now walk in your shoes?

Did you know that 87% of parents report that peer support reduced depression, anxiety and stress?  Imagine the difference we can make by simply sharing our stories, listening with empathy, and answering those “been there” questions that no one else can.

Become a resource to other families who are new to these challenges. You can be a source of hope and strength for another family.

Join our growing community of Peer Mentors. Our Helping Hands training program will give you the tools you need to be confident to support families in their journey.  You will then be matched with a parent whose story may be very similar to yours. This may be a pregnant mom experiencing complications, parents of a baby or multiples born early, the family of a child born with special health care needs, or a family who has experienced the loss of their child.

Together, you’ll decide what level of support will be most helpful – from a few quick telephone calls or text messages to regular email correspondence. The time commitment depends on you and the new parent’s needs. The Hand to Hold staff will follow-up with you both at regular intervals, be available to support you and make sure you have all the resources you need to ensure success.

Other Direct Service Roles

 

AMBASSADOR PROGRAM

Join Hand to Hold in your local NICU for CookSt. David's North Austin Medical Center and Hand to Hold at a Mother's Day Tea in the NICUies, Coffee and Crafts, Sibling Sundaes, and Parent Holiday Events where former NICU parents visit the NICU to provide meals, introduce Hand to Hold’s resources, lend an ear and share the unique fellowship of parents who have experienced similar journeys. Or join us for annual events like our Mother’s Day, Father’s Day, or NICU Appreciation Day celebrations. Get more information about our Ambassador Program by emailing support [at] handtohold [dot] org.

COMMUNITY VOLUNTEER PROGRAM

Community Volunteer

We are seeking local volunteers in the Austin, TX and Dallas, TX areas as well as national volunteers to support all of our families.

Austin and Dallas volunteers will have the opportunity to provide in person support to Hand to Hold staff members which might include thigns like assembling parent packets, staffing local events or other administrative tasks.

National volunteers will have the opportunity to support their local NICUs by participating in letter writing campaigns, crib card activities, and more!

NICU families thrive on words of encouragement and markers of milestones. Sharing an encouragement letter, Crib Card for the babies isolette or a Birthday Card for the new family experiencing a NICU journey can be what gets them through an extra tough day.

National volunteers also help Hand to Hold to identify opportunities to provide our resources to more families by spreading the word. Word of mouth is the best way to make sure that friends, colleagues and family members take advantage of the services we provide. You never know when our peer support may be needed!

Share Your Professional Talents

If you have a professional talent that you would , such as photography, graphic design, or marketing,  We also welcome inquiries for positions on the boardcharitable athletic events or third-party fundraising opportunities.

Many volunteers would like to provide assistance to families in the NICU. Most hospitals require that volunteers go through an extensive training program through the hospital’s volunteer program and commit to a specific number of volunteer hours in order to participate in their NICU rocker programs. And although Hand to Hold does not facilitate any of these types of programs, we are here to cheer you on! Our Pinterest board is full of ideas and printables for things you can do in your local hospital.

Questions about any of our volunteer programs? Feel free to contact us at volunteer [at] handtohold [dot] org.

CONSIDER BECOMING A DONOR

Sustaining Circle of LoveAs a nonprofit organization, Hand to Hold provides its services to families free of charge. Please share our vision of empowering premature and NICU children reach their full potential by making a gift of any size. Special recognition is available through our Sustaining Circle of Love those interested in making a gift of a $1,000 or more for at least three years.

Visit Hand to Hold’s Pinterest board – Ways You Can Help

 

 

Site last updated May 23, 2017 @ 3:00 pm