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.

Feelings of Grief, Gratitude and Healing

Neonatal Maternal Transportby Cindy Marks

After a difficult pregnancy, my son was delivered nearly 6 weeks early due to the fact that I had HELLP Syndrome. He was medevaced to a larger hospital while I had to stay behind as a patient at the smaller hospital. For 30 days, my husband, one year old daughter, and I traveled back and forth from our home to the larger hospital to visit our “Superman.” When he was finally discharged, I thought that everything was over and life would continue as normal. I was wrong.

For the first year of his life, I barely had time to think about what had happened with his delivery and our NICU experience because my life was consumed with taking care of two small children. When thoughts of what had happened would creep into my mind, I would shove them back because it was never a good time to think about them. I was taken by surprise on his first birthday when feelings of grief snuck in with my happiness. I felt something must be wrong with me to feel sad since everything turned out okay. Again, I pushed it back.

Eight months after his first birthday, my friend had a premature baby in the NICU. I wanted to provide her with my support, so I was forced to face pictures of the NICU, feeding tubes, and everything else that goes along with the experience. Her experience turned out different than mine, and her precious baby boy passed away a few days later. For the first time, I cried—hard. I cried for my friend and the injustice of what had happened, and I cried for my boy who also had been in the NICU. I was no longer able to push away what had happened. It was right there staring me in the face, and I had to face it.

A Google search led me to Hand to Hold. Laura Romero immediately responded to my request and was available to provide me insight to the unique feelings I had. She matched me up with my mentor, Kimberly, and the two of us talked on the phone. I told Kimberly of how I had tremendous feelings of guilt. I felt guilty that my son had to be delivered early because of my syndrome and had to be in the NICU. I felt unworthy of my sadness of the experience because my son was healthy and alive. I couldn’t figure out why I wasn’t “over” the whole experience and able to just move on with life. Kimberly shared her experience with me. A key thing she told me was that even after 8 years, she still has moments of sadness but that those moments are briefer and further apart. She told me that you don’t ever have to get over it. It’s a traumatic experience that happened to your child. You are that child’s mother and you never want anything tragic to happen to your child. And when something tragic does happen, it’s okay to feel sad—even years later.

My son just celebrated his second birthday. A week before his birthday, I found myself curious and wanting to see his NICU pictures which I couldn’t look at before because of tremendous sadness. As I was looking at the first days of my precious boy, I realized something . . . I was smiling. Today as I watch my son running around the house playing with his sister, my heart swells with gratitude and healing.

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…]

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…]