Preemie Parents Share the Power of Peer Connections

Preemie parents describe their experience with having a child in the NICU and how relationships they have formed with fellow preemie parents have made all the difference. If it has been 2-3 years since your child’s NICU experience and you’d like to be matched to support another family, please contact Erika Goyer. If you think you could benefit from support, call us toll-free 855-424-6428  ext. 1 or email Erika Goyer, family support navigator and fellow preemie parent. Having a baby in the NICU for any length of time can be traumatic and isolating. We want you to know you are not alone and we are here to help.

Maribel Farish and Her Son Daniel

Hand 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) 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.

What was having another parent to talk to like? Did you find it helpful?

When I spoke to Kelli, I felt that we were speaking the same language. She understood how I felt. Talking to someone who has gone through a similar experience made a big difference for me. Even though we had never met or spoken before, she knew exactly how I felt as well.

Kelli directed me to a variety of helpful resources for doctors and therapists. She also matched me with another parent who had been in a similar situation. The parent that she matched me with had also moved to Austin within a few months of her daughter’s birth, and the parent found herself in a very similar situation to mine. That parent happened to be Marty Barnes.

Marty was very helpful in advising me how to navigate the inter-workings of the regional medical system. I was so impressed with the website that she designed for her daughter and mainly with how calm and at peace she seemed. She helped me believe that my family’s emotional storm would eventually pass! [Read more…]

Meet Victoria Trejo & Her Daugher Amiah – What a Difference a Year Makes

By Erika Goyer, Hand to Hold Family Support Navigator

Amiah TSometimes you have the chance to connect with another mom in a way that is so personal and so intense that you feel an instant bond. I think that’s what happened when Kelli met Victoria on our visit to El Paso, Texas last year. If I’m remembering correctly she said to me, “Victoria needs to be matched with another mom. And I want that mom to be me.” I knew at that point that I wouldn’t even try to get between them.

We met Victoria in the NICU at Las Palmas Medical Center. Although she was from Las Cruces, New Mexico, her daughter, Amiah, had been transferred to a NICU in El Paso soon after her birth on January 15, 2011 at 22 weeks gestation. Once she recovered from her emergency c-section Victoria began the exhausting routine of driving back and forth from Las Cruces to El Paso to be with her daughter.

I remember seeing Amiah that day in the NICU. She was in the quietest corner of the unit where the lights were dimmed and where there wasn’t much sound other than the hum of the oscillator. We whispered to each other in her quiet room and wondered at her tiny, beautiful body. I am always humbled and amazed by these extraordinary babies. I don’t know if she is the smallest infant I’ve gazed upon in wonder and amazement but she may be. When Amiah arrived she was 12 ounces and 10-1/2 inches long, no larger than a soda bottle. [Read more…]

Jennifer Fagan and Her Daughter Natalie Grace

Fagan FamilyJennifer Fagan had her daughter Natalie Grace at 26 weeks due to placental abruption. She and her husband Mike have two other children. In addition to serving as a Helping Hand Peer Mentor, Jenn has also been helping facilitate a NICU support group at North Austin Medical Center. She shares below what volunteering to help other parents means to her.

How did you find out about Hand to Hold?

I can’t remember who specifically shared it with me, but it was one of the moms in our mom’s group that met once a week at the hospital while our kiddos were in the NICU.

What made you want to volunteer? What have you gotten out of it?

Hoping to be there for other families was our first reason. There were times we felt alone or isolated. We didn’t know anyone who had gone through delivering a premature baby. Two different opportunities really showed us the value in having someone who has gone through what you’re being faced with to support you. The first was through a weekly mom’s group for the moms with babies in the NICU. The relationships I developed through those get-togethers provided me with comfort, laughter, shared tears, strength and understanding. Second, we received an email from a family at our church who had heard of what we were going through and they reached out to us, listened, prayed and encouraged us. These things helped us to see first hand how impactful that type of support can be. To have an opportunity to be there for someone no matter how great or small, just to let them know that you are there for them, is our hope. We also want to do our best to make positive things come forth from a tough time in our life. [Read more…]

Finding Support When You’re Far From Home

Terra born at 24 weeksAlthough 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.

Loran’s Story:

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!

[Read more…]

Sonja and Rob Snow and their Daughter Scarlett

Rob & Scarlett SnowSix years ago, we were expecting our first child.  I was healthy and certainly no stranger to exercise as a professional dancer and dance instructor.  I attended all of the recommended prenatal appointments and by all indications our little girl was right on track.

At 26 weeks, I started noticing that my ankles were swelling really badly.  I didn’t think much of it since I was pregnant and on my feet a lot.  But on Easter Sunday, I woke up with a swollen face and fingers. I immediately knew something was wrong.  I checked my trusty “What to Expect When You’re Expecting” book and it said if your face and hands are swollen then call the doctor. I didn’t want to bother him on Easter, so I turned to the Internet.  All signs pointed to preeclampsia, which I knew was serious because I watched “Baby Special Delivery” all the time.  I read, “if your BP is at 140/90 you should call the doctor.”  My husband Rob, a former athletic trainer, had the training and equipment to take my BP. He took it, thought his cuff was broken, took it again, and said your BP is 190/110. I immediately called the doctor and told him the news. He said if those numbers were right, we would be delivering the baby that day.  We both panicked because I was only 27 weeks pregnant and we thought we had 3 more months to go. [Read more…]

Marty and Tim Barnes and Their Daughter Casey

Casey BarnesMy entire world changed the day my daughter, Casey, was born–April 23, 2006 just a few days shy of 37 weeks gestation.  Due to a birth trauma, she suffered a severe brain injury. The brain injury led to a handful of other health complications.  The first two months were spent in the NICU.  Then, when we finally did get home, we spent the next six months just trying to figure things out.  The past five years have been spent doing everything in our power to keep her as healthy and happy as possible.  We have had some great days, and some terrifying.  My daughter is without a doubt the most amazing person I have ever met.  She has inspired me in so many ways.

One day a friend of mine asked if I had heard of Hand to Hold.  She went on to tell me the general idea behind Hand to Hold and suggested that I contact Kelli.  When I pulled up the web page and began to read the history and how Hand to Hold came to be, I could not believe my eyes.  I felt like I had just found my long lost sisters.  There were so many times that I wished, even begged doctors, for another family to talk to about our experiences.  During our stay in the NICU, I think I must have asked daily.  At times I really needed someone that had been there to just tell me it will be okay. Other times (after the first year or so), I wanted so much to be able to provide other families with what wasn’t available to us.  The fact that Hand to Hold was created from that very idea was more than a sign to me.  I knew I had to get involved. [Read more…]

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…]

Colleen & Karl Heubaum and Their Daughter Trinity

Colleen and Karl Heubaum, both Helping Hand peer mentors with Hand to Hold, describe their family’s experience with prematurity after the birth of their second child and why they want to support other parents who have been down this path.

Our youngest daughter, Trinity, was born at 26 weeks, weighing 1 pound, 12 ounces. Trinity spent 110 days in the NICU with a Grade 1 IVH, BPD, a PDA and ROP, but thankfully no surgeries. Our first daughter was born healthy after an uncomplicated pregnancy, so ending up in the NICU was quite a surprise – something for which we were completely unprepared.  And the “surprises” kept coming – just about the time we learned how to navigate and deal with one aspect of the NICU,  some new situation would present itself and we would be faced with a new set of expectations or fears.   [Read more…]

Katrina Moline and Bryce

Our baby Bryce came barreling into our lives and hearts when I was just 24 weeks along. He delivered at our home actually, and we gave him CPR until the paramedics arrived.

Despite the severe emotional trauma of Bryce’s birth it would prove to be those following months that would take their toll on us. I found that we put so much effort into surviving the NICU that we were ill prepared for the struggles of being home with a medically fragile baby and no nurses or doctors to quell our many fears and concerns. I began seeking out other preemie moms online, through the website Meet Up, on Facebook and through any other avenue I could find. But time and time again I found myself disappointed by the lack of availability for what seemed like a simple service.

And then one day at yet another specialist appointment, a fellow preemie mom, Allie Alter, recognized Bryce and as we briefly visited, both anxious to relate to someone, she mentioned Hand to Hold. [Read more…]