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!

In what ways has being connected with Colleen made a difference?

Meeting other parents, even just as pen pals, is very useful in that it helps us not feel totally isolated
here. It is nice to know that Terra is progressing normally for a micropreemie and that her issues are
pretty common. It is also nice just to have someone outside the family to vent to now and then when
things get kind of frustrating. I think my last letter to Colleen was in this vein – poor woman – she should
get a counseling fee!

What would you tell other NICU families about caring for their family and finding support?

I think it is really important that they have contact with parents who have been there and can reassure
them about what is happening and is likely to happen on their journey. I think for us it would have been
helpful to have a parent talk to us about oxygen, ROP, eating disorders, etc., rather than just nurses
and doctors who can be very clinical and scary. I have found out things from parents after the fact that would have really helped relieve some stress and tension at the time. I think it would also be helpful for current NICU parents maybe to have close (weekly or daily) contact with another family/parent as a peer-counselor to be able to talk about what is going on in the day to day – because that is when the stress and worry is at its greatest. We had family to talk to, but of course, they hadn’t been there, so didn’t really know what was going on or how to help us.

Loran’s Helping Hand, Colleen:

What does being a Helping Hand mean to you? What do you get out of it?

Hand to Hold is an opportunity for my husband and I to “give back” and help families in a unique way.
When our daughter was first born, I remember thinking that whatever the outcome, I would use the
experience to help other people. It was one of the few ways to make sense out of a senseless situation.
Now that our daughter is healthy and growing up “on track,” participating in Hand to Hold is a way for us
to have her rough start “make sense” and serve a purpose.

What did you have to consider before you decided to be Helping Hand to Loran?

As our situations were not exactly the same – no two are – I had to consider whether our experiences
with our daughter were something that could potentially benefit Loran. But I also thought about
whether other personal experiences – such as living overseas and being isolated from family – would be
helpful as well. I was a little nervous at first, not knowing much about some of the issues Loran and her
family are facing, but I knew I had a great backup team with Hand to Hold.

What have you gained from knowing Loran and hearing her story?

Loran is a neat person, and I never would have had a chance to meet her without Hand to Hold. But
working with her and families like hers, it reminds me how far our daughter – and our family – has come
since her birth. And it helps me to remember to be grateful every day for the advances in modern
medicine and the little miracles in our everyday lives.

What advice would you give other parents?

If you are considering becoming a Helping Hand, do it. And if possible, do it with your partner. My
husband and I took the training together, and are so glad that we did. It gives us a reason to occasionally
reflect on what we’ve been through, and to “check in” with each other and how we’ve dealt or are
continuing to deal with those rough early years. It does not take that much time away from your work
or family – it’s such an easy way to potentially make a meaningful impact.

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