Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Sunday, November 17, 2013

Unexpected - World Prematurity Day 2013

I wasn't going to write today.  I had a kind of defeatist attitude about the whole thing.  My train of thought went something like this, "The only ones who will read what I write, already know.  Are aware.  As much as I love this community joined together by prematurity, they aren't who we NEED to reach.  We need to reach outside our community, outside our WORLD."  And then, unexpectedly, it hit me....what I want from a day like today, World Prematurity Day (11.17.13). 

Absolutely unexpected...Jack at birth (28 weeks).

          Society sets expectant mothers up for a joyful, blessed pregnancy (with some discomfort at times) and an even more powerful (and still possibly painful) moment at birth when you finally meet (and hold) your little one.  Sure, there are short paragraphs in pregnancy books about things that could go wrong…but I’ve noticed that most end with “if you have good medical care” this won’t happen.  But what if you do everything “right” and have good, even great, medical care and your expectations are STILL turned upside down by prematurity.  I think some of the biggest trauma, for me, has been so much of the unexpected that has happened during this journey (from Jack’s early arrival, his NICU stay and even now).  I never expected  to have my baby turn blue and stop breathing while holding him.  I never expected to hold his arms down and put a tube into his nose so I could feed him.  I never expected my three year old to need three therapists, a nutritionist, a gasteroenterologist, a pulmonologist, and daily breathing treatments.  What’s even worse, is that the medical community often seems surprised by this as well.  The perception that prematurity ends once leaving the NICU is FALSE.  Yes, false.   When your child’s own pediatrician isn’t aware and doesn’t acknowledge the lasting impact…well, that’s another expectation overturned.  So, yes, it’s the unexpected that makes prematurity so darn difficult.  Not only has society set families up for a perfect pregnancy and birth, but childhood is also supposed to look that way too.  As the mom of a premature child, I often feel like I’m in a whole different world at times.  But, by continuing to acknowledge WORLD Prematurity Day…maybe someday my world won’t be so different, so unexpected.  Maybe some day, if prematurity is still upending expectations, a mom, like me, won’t be so traumatized or feel so isolated because of the unexpected.  As much as I love the prematurity “networks," friends, and FB groups that I have found, I would have loved it that much more if awareness were higher among the general public (and medical community).  So that I and other parents didn’t have to seek out a special place, a private place to talk about our experience, our fears, our worries.  I will continue to promote WORLD Prematurity Day in hopes that some day, sharing our story will be accepted.  Will not make others uncomfortable.  Will not scare, but inform other pregnant women.  Will not cause others to say, “but at least…”
To be fair, I never expected to be able to have a family photo like this, 3 years after our biggest expectations were overturned.  (Oct 2013)

          I have a voicemail that I save; I have been saving it since August 13, 2010, just three day into Jack's little life.  It's not the usual congratulatory message one receives when giving birth, but it's being saved anyway.  Don't get me wrong, many people offered up congratulations in a not so joyous time.  And I'm glad.  If they hadn't, I would have been hurt.  But this voicemail, from a friend, my best friend, was exactly what I needed to hear then and what I still need to hear, even 3 years later.  My friend called to check on me, to see how I was feeling and gave me the very thing I needed to hear.  Acknowledgement.  That this was not what we had planned and things did not go as they should have.  That acknowledgement still brings tears to my eyes now, as I'm writing, as it did the first day I've heard it.  Since that day, I've been wrestling with the lack of acknowledgement that is given to the very real, and very unpleasant, experiences that prematurity can dole out to any given family.  That friend, she said the most meaningful thing to me throughout this entire journey.  I can’t remember hearing it from anyone else, but it is what I hope other parents will hear often as long as we continue to promote days like this.  World Prematurity Day.  
She acknowledged our unexpected.
          I know I could have written about Jack today and how awesome he is.  Given other parents hope about what life looks like 3 years later.  I wanted to take a different approach.  Because, the more I thought about it, the more I realized how much prematurity has changed me.  Yes, it may impact his entire life, but he will always be my Jack.  I would never allow prematurity to define him.  But prematurity, it has changed me, changed my expectations.  As an adult, his mother, I can choose how prematurity affects me, changes me.  Jack, he doesn't know a thing about it, really.  In fact, if I had asked Jack if he wanted me to write about him on World Prematurity Day.  He'd probably just say his new favorite phrase, "No thanks, I'm good!"  It wasn't what I expected, but prematurity has changed me.  For good.
"No thanks.  I'm good!"


Monday, November 4, 2013

Two Worlds

Most days, I feel like I live in two different worlds.  Depending on the day or my mood, I might feel like I’m 90% in one world and 10% in the other.  The next day, it might be the complete opposite.  I know that it is really just one world that I live in, but I can't help but separate them sometimes in my head and my heart.  And it would be na├»ve of me to try to live in just one of them.  Just to give you an idea of what these two worlds look like…

In one world, I have a bright, funny, loving three year old who loves preschool.  In the other, I have the same bright, funny, loving three year old who also sees three different therapists and a multitude of specialists, while still managing to love life.

In one world, I prepare our baby girl’s nursery with new paint, new curtains and hand-me-down toys and books from her big brother.  In the other, I have already packed my hospital bag in preparation for her possible early arrival.

A glimpse into baby girls' room.

In one world, I have conversations with my MFM about due dates and scheduling my repeat c-section.  In the other, I hesitantly ask my MFM what gestation is considered viable at our hospital and whether parents are included in the decision-making about what kind of interventions and care to provide at that gestation.  

In one world, I go into our 20-week anatomy scan, looking forward to guessing the gender before the tech does!  In the other, I’m asking questions about fluid levels, 3-vessel cords, heart defects and appropriate size.  

In one world, I’m making lists of baby names.  In the other, I record my daily glucose levels, my blood pressure readings and am hyper-aware of any signs of preeclampsia setting in.  

In one world, I am trying to make the next few months as fun for Jack as I can, while he’s still an only child.  In the other world, the thought hits every so often that I'm squeezing in good times and making memories for Jack, just in case something were happen to me.

In one world, the 112-day NICU stay is in the past.  In the other, prematurity is always present. 

In one world, I try not to read or hear about prematurity like I used to because my knowledge scares me more to think what might happen again than to think about what already happened.  In the other world, I’ve read two biographical books just this week written by parents of premature babies.  

In one world, I can for days without that deep-down feeling.  In the other, that deep-down feeling grabs a hold of my heart and twists it so hard I can’t breathe.

In one world, I don’t shed a tear for weeks.  In the other, just typing the previous sentence about that deep-down feeling causes me to sob…instantly.  

In both worlds, I read through the “What to Expect Book” each week, hoping to get past the bookmark that I left on Week 28 three years ago.  

My bookmark is an appointment card for an appointment that I never attended because Jack had already arrived.