Words For Micropreemie Parents

I have noticed several people found my blog by using search terms such as “future for micropreemies”, “survival chances of micropreemies”, or “micropreemie aftermath”.  What follows is directed to those readers:

I know you have come across this blog during your desperate search for answers. I was once where you are. Late at night, I pounded away at the keyboard in an internet hunt for answers from my hospital bed.

I’m sorry to admit, I do not have any. Or rather, I do not have the type of answers you are seeking. What I can tell you is what I’ve learned along the way so far.

Being thrust into the micropreemie realm is difficult. You do not have to be brave, strong, stoic, or optimistic. It is practically impossible to be so when your heart is breaking. Don’t waste energy trying to be. Cry if you need to, yell if you feel like it, or pout silently if it is more your style. It is OK. There is no “right” way to be a micropreemie parent.

Survival and outcomes…  It’s an odds game that makes little sense to me. Even when provided percentages, data, and statistics, it feels like there is no rhyme or reason. I saw babies struggle who were expected to do well. I’ve read about the sickest and tiniest that graduate from the NICU with little to no long term issues. I’ve met parents who experience just about everything in between with their infants.

Everyone’s journey is different. I cannot predict how your little one will do. I can tell you to hope. There may be moments when hope is all you have.

Throw away the baby books. You are in a different world now. I suggest you start by reading one of many available books on preemies. There is much to learn and crucial decisions will need to be made. The doctors and nurses can guide you.

Listen to your parenting instincts. You will be surprised at how correct they are most of the time. Don’t let anyone fill you with doubt about your decisions… especially yourself.

Leaving the NICU is merely the end of the beginning. It is not over once you walk out those doors.

It will seem like everyone in your world knows of a micropreemie that catches up by two (if not sooner) and has no lingering issues. While these anecdotes are well intended, they can be despairing. Know these babies are the exception and not the rule. However, catching up is possible… it just may take longer than age two.

At some point, you may find or someone may have you read Welcome To Holland. While I found having a micropreemie is similar, my experience has been more like a layover in Holland. Right now, my former micropreemie continues to have special needs but I hope we will one day catch a flight to Italy.

I’m sorry that I can’t tell you things are going to be great or your baby is going to be fine. That is not the world our little ones were born into. Instead, every day in the NICU is a perilous battle for survival. They will have to struggle and fight for things like breathing, eating, and growth that others take for granted.

One thing I do know is that, despite the small size, micropreemies are mighty. These babies are incredible.

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About Rebecca Wood

In May 2012, my pregnancy ended three and a half months early due to severe early onset preeclampsia. This is my collection of thoughts and media. It is an attempt to document and discuss our experience of navigating the post NICU world. View all posts by Rebecca Wood

3 responses to “Words For Micropreemie Parents

  • roadtofertility

    I’m a parent of a preemie, not a micro preemie..but this is a great post. I sent this post to someone I know who delivered her triplets at 24 weeks recently. ❤

    Like

  • Jessica

    ❤ I began this journey six years ago, some days it still feels like yesterday. My son was also born at 26 weeks, he was also born with two birth defects (a hand amputation and severe clubfeet), he just turned six, is in kindergarten and for the first time is in a mainstream classroom. I am not sure if he will ever be 100% caught up in everything but in the past two years he has graduated from OT, and Speech, and is doing many things right along with his classmates. It's a tough road but little by little it becomes easier and less painful.

    Like

  • Karine

    “At some point, you may find or someone may have you read Welcome To Holland. While I found having a micropreemie is similar, my experience has been more like a layover in Holland. Right now, my former micropreemie continues to have special needs but I hope we will one day catch a flight to Italy.”

    This strucked me. My 24 weeker, now almost 2 1/2 years old, is still behind. But much less than a year ago. My fears for my daughter’s future are still there but they’re not as strong. As she grows up, as she meets milestones I am more and more confident in her abilities though, i know, issues can appear when she’s older. When she looks at me with her bright eyes and her huge smile it often feels like she’s saying ” Just trust me mom!” She’ll have life long follow up for couple things but they don’t make me feel that she’s a special needs kid as much now.

    So you kind of made me realize that we might afterall just be on a layover.

    Thank you!

    Like

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