Tips for Handling a Long Distance NICU Journey

This post was shared with us by preemie mom Serena, one of our Preemie Parent Mentors. To share your own story or advice to help new parents of preemies cope with the reality of premature birth, click here.

For all of us preemie parents, the birth of our child(ren) did not go as expected, nor as planned. For a much smaller portion of us, this journey began hundreds or even thousands of miles away from home. Having a preemie close to home is already challenging… How do you cope with this difficult situation AND do it far away from home, family, friends, etc.?

Each experience and family situation is different, of course. Some of us leave behind work, other children, a husband, home, etc. for the entire period we are involved in a long distance NICU journey. We have not only been thrown into these unfamiliar hospital surroundings, but we also have no place to call home while we are stuck there. Some preemie parents, if close enough to do so, drive long hours each day to get to a preemie’s bedside… and some stay in hotels, while others stay at helpful organizations like the Ronald McDonald House.  

In 2011, I was traveling for work, on my flight home when my water broke on the plane. I live in California, but Houston, Texas is where I resided for the next two months after my son was born at 24W3D, weighing 1lb 7oz. My husband and I were lucky enough to stay at the Ronald McDonald House, and worked remotely as much as possible.

We had no other children, so this new, super tiny baby was the only thing we focused our time and energy on other than putting in some work hours in the hospital break rooms and in our home base at the Ronald McDonald House.  

Being one of the long distance NICU parent mentors for Grahams Foundation, I often get asked by parents how they can handle this situation. Unfortunately, there is no correct answer.  I do wish I had known about Graham’s Foundation’s support programs back then, because it would have been nice to have been able to reach out to a parent who had been through something similar and could help get me through the journey. But in the end we did what we had to do to get through it.  All you can do when you’re far away from home is what any parent in this situation does: take it day by day.

We may not have our home, familiar belongings, family or friends to get us through it, but when you really think about it, all we really need is time, hope, and love to get us through this journey… no matter where we are!  

We have to be our babies’ advocates, and their “continuity” of care is huge no matter where we call home. Eventually, our perseverance pays off!


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