Believe

On Thursday, when I walked myself into the hospital and took the elevator up to the 3rd floor...labor & delivery,  I thought to myself, "I can't believe I am here again...too soon." 

But then, I also still can't believe that I am still pregnant!

I still can't believe that I have a happy, healthy 3-year old who loves Christmas...and Christmas cookies!

I still can't believe we made it past 28 weeks...and might make it even further.

I still can't believe that I have a little guy singing "We wish a Merry Christmas and a Happy Two Year!"

I still can't believe that I left the hospital yesterday, with a baby girl in my belly, instead of in the NICU! 

I still can't believe that I get to be home with my little boy, spinning stories of his "Super Family who help Santa save Christmas when all the presents fell off the sled!" 

Guess if I have learned anything from this journey, I should probably just let go of the "still can'ts" and just...BELIEVE.  Tis' the season!

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).

Awareness

 

          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)

Acknowledgement

 

          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!"

 

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 naïve 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. 

Prayer

I've never been comfortable with the concept of  the "power of prayer" - as in, if you just pray hard enough or often enough or say just the right prayer at the right time, then everything will be just fine.  In fact, I'm not okay with "just fine" either.  Everybody's "just fine" is different.  Distracted already...blame it on the pregnancy.  Where was I?  The "power of prayer."  I guess I just don't think it's fair to expect people to believe this theory/concept.  What happens if the people who pray most often and pray the hardest still have bad things happen to them?  Or does someone's loved one die because they just didn't pray often enough?  Or have the right amount of people praying?  The "power of prayer" and God not giving you "more than you can handle" - both on my list.  

So, that being said, I DO believe in praying and the importance of prayer (just not it's all-encompassing power).  And we were always so grateful to hear that people were praying for Jack while he was in the NICU.  I prayed for him often...hard...all the time.  But I tried a different type of prayer (and still do).  Instead of praying for God to do something for Jack (heal his lungs, send him home), my prayers were always that of thanks for what he already done for him or us.  "Thank you, God, for helping Jack breathe today without needing a ventilator."  "Thank you, God, for allowing Jack to tolerate his feeds today."  I'm pretty sure that I didn't want to pray for or ask for the wrong thing.  (Okay, maybe I believe in the power!).  Either way, this type of prayer helped me stay focused on what was happening, rather than what I wanted to happen.  I think Jack was praying the same kinds of prayers too.

Which brings me to today.  I've been praying the same kind of prayers for baby sister.  "Thank you, God, for allowing her to grow these past 24 weeks."  (Just had an ultrasound and baby girl is in the 42nd percentile, measuring at 1lb 6oz.  Right on target.  Not too big, which my gestational diabetes could cause.  Not too small, which possible preeclampsia and IUGR could cause.  I had both with Jack.)  Before the ultrasound, I had just attended Jack's first preschool "Harvest Party."  It's funny how different kids act when their parents are around (my Jack included).  I'll just leave it at that!  But, then, I got this surprise e-mail from Jack's teacher.  

"I totally forgot to tell you about something Jack has been doing in class.  It is ADORABLE!  Every time we say a prayer, I ask them to fold their hands.  When I do this, he immediately comes over to me and says "fold hands" and puts his hands out toward me.  I put my hands over top of his and we fold them together to say prayers.  He knows all the words to the prayers!  It melts my heart when he does this!  Enjoy your weekend!"

And I have no words.  Just tears. 

"Thank you, God, for putting this sweet, sweet boy in my life!" 

Octobers

Photo credit:  http://dearfriendblog.com/2012/10/octobers/

          I’m sure if you asked any of you, you have a favorite month.  I do.  I love October.  It has always been one of my favorite months.  I love the sweatshirt and jeans “football” weather (must be the former cheerleader in me!).  I love that this month is the start of many celebratory months…Thanksgiving in November, Christmas in December, the New Year and then my birthday in February!   I love Halloween costumes and décor.  My friends and I even dressed up as we got older, renting a bus or trolley to take us around town in our creative costumes.  One year, I was Chef Boyardee and handed out real pizza.  A few years before that, a group of us were dressed as people from the Publisher’s Clearinghouse, complete with a big check and a surprised winner in her bathrobe and curlers!  And I can forget the treats…I love candy corn.  I especially love big, round, orange pumpkins!   Although, I should admit that I’m partial to those mini “Jack B’ Little” pumpkins these days too!  Many have a specific image or item that is symbolic for them, that gives them hope or inspiration, be it a rainbow or a butterfly.  It may sound strange, but a pumpkin is that symbol for me.    

Our pumpkin, growing and maturing, just like Jack.

     October 2009, I placed a large pumpkin on our front porch and he stayed there through November.  By December, he was started to disintegrate, so I pushed him off the porch into our flower bed.  Yep, pumpkin parts and flower seeds everywhere!  Hubby wasn’t too happy, but I was secretly hoping for my very own pumpkin patch.  Jeff made an attempt to remove all the seeds, but little did I know that one little seed pulled through and began to sprout.  He had survived the harsh snows of February and March, the same time I became pregnant with Jack…whose due date was October 28.  I was super excited for an October baby…my favorite month.  He would be my little pumpkin!  As it turns out, Jack would be a summer boy (which suits him well), instead of a pumpkin…yet, that little pumpkin had just started growing and maturing in our front flower bed just as he was born.  

Jack's first October, in the NICU, a sign from his nurses, and my germaphobe costume that year (2010).

          Jack would do the same growing and maturing in a less nurturing environment, the NICU, which made October just a little bittersweet for our family.  Especially after Jack passed his due date in the NICU and stayed even 4 weeks longer.  So, while Jack’s birthday remains in August, I will always think of October as his “developmental” or “milestone” birthday.    I try not to get to stressed about missed milestones, unless they are truly missed by October. 

 

Jack's 2nd October, at HOME (2012). 

          Each year, those October memories remain, but the sadness and uncertainty have surely begun to fade and the month of October brings new memories to be made.  More pumpkins to give hope.  More candy corn to eat!  Yep, October is still my favorite month.  And any October with Jack in it is one to celebrate.  

Jack's 3rd October...our little "Ginger Snap."

Superheroes

     This weekend, I flew to Nashville for a quick trip and couldn’t be more in awe of the Preemie Parent Alliance (PPA) and its members.  Alliance...sounds like a group of superheroes, huh?  That’s because they are.  The PPA is an inspiring and influential group of parents affected by prematurity.  They have taken a traumatizing, and often heartbreaking, experience and are doing good with it.  More than good.  Great things.  Powerful things.  Not only are they empowering parents, they are concretely helping preemies and their families.   They have influence over the care premature infants and their families receive by medical professionals.  They are changing perceptions about prematurity.  They confirmed what I’ve always felt.  Prematurity is a big deal.  Not in the paparazzi take my picture kind of big deal, but in the life-changing, long-lasting impact type of big deal.  Maybe they could help you.  Or maybe you can help them.  Check them out:  PPA Members.  Each group in the PPA is unique, but as a whole have a common goal.  Yep, superheroes.  I want be just like them when I grow up.

     I would be remiss if I didn’t mention what made this opportunity possible.  The Foundation for Prematurity is a local (PA), newly formed foundation whose mission is to give grants to families of preemies needing financial assistance for therapies and interventions.  About 2 years ago, I joined support group of preemie moms.  Turns out, the founder had been working for years to get this foundation off the ground and asked me to be on the board.  We are currently looking to give funds (yep, $$$) to families who have therapies and interventions (for their preemie of any age) that aren’t covered by medical insurance or medical assistance (in PA).  This foundation gives directly to families.  Check out our website:  nevertoosmall.org.   No baby is too small.   No need is too small.  No donation is too small.    

nevertoosmall.org

     And, I can't forget my own little superhero who really made this all possible!  Jack is doing great.  Loving preschool and his therapies.  Adjusting well to my being back to work (probably better than I am).  Not sleeping in his race car bed.  Getting more aware of the fact that "baby sister" will be here in a few months.  Talking more and more every day.  Even when he's being defiant, "I not nap.  I not eat." - I can't stop myself from smiling because he's using sentences!  He loves to run now (and looks much more comfortable and fluid when he does...less like Phoebe from Friends), is always asking us to "take his picture," and is finally using a fork more consistently.  Here's a little video to prove it.  (Notice how he asks me to put the food on his fork and tells mommy and daddy to clap their hands after he is successful.  He's a fun kid!!)