Finding Someone Who Understands How Hard the NICU Experience Is

Watching a vulnerable child during a NICU stay is emotionally draining and difficult whether your child has many complications or just a few. Courtney’s son Jackson was born at 27 weeks and was in the NICU for 79 days. She contacted Hand to Hold to find a mentor to support her through the emotional roller coaster and who knew first-hand how hard this experience is. She was matched with Jessica, mom to Isaac who was born at 28 weeks gestation and who had a 50-day stay in the NICU. Despite the early birth, both boys had very minor complications and are both doing well. Both moms were glad to have found the peer support they needed to give back, find hope and heal.

Courtney B and her son

Courtney with her son Jackson

Courtney B

“There are so many benefits to receiving support!  In the very beginning, I felt like I was thrown into this unknown world and I felt alone. I found comfort knowing that someone, like Jessica had gone through a similar experience and that I could go to her for advice! When I was worried about something or scared, I would write her and she always had something helpful and positive to say!! It’s also comforting to have someone who knows your story and who is rooting for you and your little one!

Talking to Jessica made my NICU experience less scary, and gave me hope! We became friends on Facebook and it helped me a lot to see her son Issac’s pictures and how good he is doing now! Her positive words brought me happiness during a gloomy time!”

Jessica D

“Being a mentor to Courtney has also helped me continue my healing process from the premature birth of my son. When someone has a similar story to yours, it can help you see situations in ways you would not have when you were the one in their shoes. You can say “I know how you feel” and truly mean it. I was matched with Courtney very soon after her son was born and it has been amazing to get to know her and her baby Jackson through messages and photos that she shares.  

I believe that having someone that can relate to you no matter where you are in your NICU journey is extremely important. At the hospital where I had my son, there was no peer support system for parents which is very disappointing. It is a very scary time and just having an ear to listen can help tremendously. My only regret is not finding Hand to Hold sooner!”

Kim & Wynne: Finding Simple Joys in Preemie Parenthood

Kim, who had her son at 25 weeks gestation, was matched with Wynne, also a preemie mother of a son born at 25 weeks. They both explain what it has meant to them to participate in Hand to Hold’s Helping Hand program, which matches peers with one another for support. Such meaningful exchanges have allowed them to honor their unique stories and parenting journey. Together, they’ve inspired one another to find comfort, understanding and meaning in small moments even when there may be challenges yet to face.

Kim J

Kim JohnsonBeing a preemie mom is really hard some days. I was struggling with different hurdles – both my son’s as well as my own. It’s hard to relate to “termie” moms because their babies rarely face the challenges my little guy has faced, and their path is rarely as traumatic as a preemie mom’s can be. When I reached out and was given a match from Hand To Hold, it made such a big difference! Having someone available who is/was willing and able to support me in my new journey as a preemie mom has been invaluable! The main benefit for me has been having someone who’s not only a mom, but a preemie mom herself and can relate on a “preemie level.” That makes sharing and talking a whole lot easier. My match, Wynne, not only has a child with very similar needs to my own son, and but has also been through the struggles I’ve had (and am still working through) myself. She’s been there to talk to about my fears and concerns – and she really gets them! She’s helped make my path easier and I know I can text or email her at ANY time! There are no conditions and no judgement. She’s there to help me navigate this new world of being a preemie mom in a way that only another mom can help with. She’s helped me to gain perspective and has given me hope that this journey – although full of bumps and turns – does get better.

Wynne M

We all have a story that needs to be told. Our stories are unique to each one of us and to tell it makes the story more real, tangible, something to be understood celebrated or grieved. As a helping hand volunteer, I hope to welcome people to tell their story whatever it may be. I have enjoyed being matched with Kim through Hand to Hold. Kim has tremendous strength and tenacity to see the positive and bright side in her situation with her young son, Xanny. She comes to helping her son with joy, love and humor. These qualities might I add are great strengths for a new mom! For instance, Kim shares with wonder how great it is that Xanny is now wearing glasses so he can see shapes, colors and enjoys books more than ever before!! By sharing the ups and downs of her experience, she has shown me inspiration that one’s outlook determines their destiny. Though the diagnosis of her son is currently in question, Kim continues to be amazed at his gradual progress. Kim has taught me to see joy, special moments, and to relish in the small things. Kim: Thank you for sharing your story and allowing me to share mine so we could inspire each other.

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…]

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…]

Joan Kincaid and Her Son Will

Will was born at barely 25 weeks. He was battered and bruised by the traumatic birth; he was just under 2 pounds; he was unable to breathe on his own and the doctors were not hopeful. Signing a DNR and baptizing your baby in the NICU within 24 hours of delivery is beyond horrifying. For everyone involved. But days of survival grew into weeks, and small hopeful signs joined the constant barrage of setbacks and the NICU is your only reality as you become an expert in one little baby’s every physical, medical measurement of health. And you sing. Everyday. To that baby.

[Read more…]

Amy Bills and her son Oliver

Worry, anger, grief, joy, exhaustion, relief, bitterness, financial anxiety, physical pain. That sounds like a bad year by any standard. For a parent with a premature child in the Neonatal Intensive Care Unit, it’s not unheard of to experience all of those emotions in a single day.

The phrase “it takes a village” never meant so much to me as during the summer months of 2008 after the premature birth of my 28 1/2-week-old identical twin boys, Oliver and Avery, and the loss of Avery at two days old due to a congenital heart defect. My husband and I were lucky to have a close community of family and friends propping us up as we experienced all of these emotions and more. Because we were cared for, we could care for our children. But not everyone has that network. Volunteering through Hand to Hold to help prop up another NICU family allows me to bring the gift full circle.

[Read more…]