What I Wish Everyone Knew About This Preemie Life

Over the last eleven months of blogging, I have noticed a theme within many preemie bloggers’ reason for blogging.  We simply want people to better understand our journey.  For me, what I really ended up finding has been solidarity with other preemie families and a lot of healing through the process of writing and reading my thoughts in others’ writings. Those aspects of keeping a blog have been wonderful gifts and probably more healing than educating “the rest of the world”.

However, I can’t help but still wish for that original goal.  I do have some non-preemie readers, but the majority of this blog’s readers are other preemie parents.  If I had to sum it up into one list of things that I wish people knew about prematurity and being a preemie parent, these are my big ones.

Premature babies aren’t just smaller versions of full-term babies.  Premature babies are born sick.  By referring to where they stay as the “NICU” as one word, it seems that many people forget that the last three letters stand for Intensive Care Unit.  Prematurity, regardless of gestation, presents serious long and short term health and development concerns.

Every premature baby’s story is different.  Your sister’s best friend’s cousin may have had a 22 week 6 day preemie who was less than one pound at birth and is now a Rhodes Scholar and Olympic athlete…or maybe she’s “just fine now”, but that doesn’t in any way predict the outcome for any other preemie.  Preemie parents’ concerns and fears for their children’s immediate and long-term future are real.  You’re right, pondering on those concerns won’t change anything, but if you just brush the concerns under the rug, you’re not being honest, or don’t understand, the risks for children born too soon.

There is nothing magical about two.  Being born too soon is not something that is outgrown.  Medically speaking, once a child is past their due date, they are a “former preemie”.  However, that does not mean the baby has caught up and many don’t “catch up” at two, or ever.  One example is Owen, he will be two in 25 days.  He’s still on oxygen support, he does not eat, he does not walk, he does not talk, nasal congestion caused by teething requires breathing treatments.  He’s not all that unusual within the preemie world.  There are many premature children who are doing better than he and there are many that are not doing as well.  He’s not technically still a preemie, but turning two doesn’t make the impact of his premature birth go away.

Washing your hands is really easy.  I’m pretty appalled that I even have to include this point.  Just do it. It’s the most effective way to prevent the spread of illness and disease.

I am (over) sensitive.  The emotional toll of prematurity is significant for the entire family.  You may mean no harm when you complain about your last weeks of a full-term pregnancy, or use the r-word or try to tell me that I am being over-protective of my child, however, those are only reminders to me that you don’t, at all, get me or my experience.  That makes me feel lonely and sad and a whole slew of other emotions that I haven’t figured out yet.  Just like there is nothing magical in the child turning two, there isn’t some magical point when I become “okay” again either.

I’m not amazing.  I don’t deserve to be on any parenting pedestal.  Some days I’m a great mom, some days I pray that I didn’t just screw up my kids for life.  The tasks on my job description for mom may look a little different from many other’s but at the end of the day, I’m just doing what I need to do to give my kids’ their best chances.  Trust me, it’s what you would do too.

I miss you too.  Partly because of those extra tasks on the job description and partly because of my new emotional needs, I don’t get to see my friends as much now.  For those same reason, I do need to hear from you still.  Thank you for making the effort when it seems one-sided.  I like to hear about your life and not just talk about mine.  If you’re having troubles, I want to still be able to help you through them.  You may need to be more direct with your needs from me, but I am still here for you.  I value your friendship and am so thankful that you’ve stuck by me.

Other preemie parents, what would you add?  Also, I’d love to hear from non-preemie friends and families who follow this blog; what do you think are the key things you’ve learned that we preemie families might be so close to it all that we miss the lesson?

prematurity

Dear New Preemie Parent

When Owen was born, my biggest pet peeve was when people would say things like;

“Don’t worry, he’s going to be okay”

Or Worse,

“Most of these baby’s turn out just fine”

I know these people were trying to be supportive and they were at a loss for words as to what to say and, I don’t fault them for trying.  At the same time, I wanted to scream the statistics at them.  I wanted them to be honest and really understand what lay ahead for our family.  The truth is, in the best cases, mirco preemies have challenges for years.

Here’s an idea of what I wanted them to say.  It’s what I would say, to those with a new preemie.

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