spreading the word. making an impact. (video)

Prematurity awareness is more than just one story.  But this is our story and tomorrow night we will be sharing it with 250-300 people at a March of Dimes event just a few miles from the hospital where our story began.  In attendance will be several doctors and nurses that know our story and were vitally important to it, but there will also be a whole lot of people that don't know us, don't know our story and may not even know much about prematurity.  We hope that our story will have an impact tomorrow night.  More importantly we hope that our story gets retold.  That by sharing there is more awareness.  

If just one person knows more about prematurity because of our story than we have made an impact. 

If just one mom-to-be learns more about the warning signs of preterm labor than we have made an impact.  

If just one person tells another person about the staggering statistics of prematurity than we have made an impact.  

Go and share your story.  Prematurity is all of our stories.   Take the time this month and tell someone else about your child, grandchild, niece, nephew, friend's child, neighbor's child, or co-workers child that was born premature.  The stories will come alive and we all will all make an impact.  

pumpkins, peacocks and prematurity

We had an awesome halloween.   It was my first experience as a parent to see the magic of a holiday through my child's eyes.  Virginia loved her costume and wore her ridiculous fascinator headband the entire night.... shocking, really.    I think she was mostly just stunned that random people were handing her candy.  Luckily she has sorta forgotten about all the candy and I have hidden the bag ;) 

Today, amid the candy detox, the calendar turned to November.  While notable for veterans day, thanksgiving, the anniversary of marrying the love of my life, and the acceptability of christmas music on the radio, November is also prematurity awareness month.  Last year I wrote quite a bit about prematurity awareness month and world prematurity day (November 17th).  While worthy of posts, I feel like most of the readers around here are very aware of prematurity and all of its implications.  Preaching to the choir much?  This year I hope to talk more about how we can all help make others more aware about prematurity and how we can all help support those who have experienced a premature birth.  

I look forward to the conversation, passion, and knowledge that happens this time of year in preemie social media community.  What posts are in the works?  Anyone doing anything at their NICUs on World Prematurity Day?  

2 year old stats

I have failed to keep a baby book for Virginia.  I suppose that went the way of my birth plan, nursery designs and child rearing reading.  This blog serves as my way of keeping track of what happened when, so without further ado here is Virginia at two:

Virginia at TWO

height: 33 inches

weight: 21.5 pounds - officially fallen off the charts :(

clothing: 18m

how old she would tell you she is:  Eight (!)

favorite food: pretzels (she is a klem afterall!)

favorite song:  row row row your boat (alligator version)

favorite toys: baby stella & play kitchen

favorite book: Some Dogs Do

favorite everything: elmo

favorite place to be: outside

sleeping: erratic

words: new ones every day and  stringing 2 & 3 words together

favorite word: NO

favorite phrase: NO NO Pippi (our dog)

PT: working on "running," climbing/descending steps & ramps, following directions, completing simple tasks (puzzles etc)

two

Dear Virginia,

As we spent our day together I couldn't help but think of who we were two years ago.  I was a new mom, although not willingly.  I was desperately scared for you as your tiny 650 gram body was dramatically pulled from mine.  As I laid on the operating table words raced through my head but simply could not come off my lips.  My tears were trapped inside, perhaps because they were conflicting tears of devastation and joy.   Outwardly I was strangely emotionless but on the inside there was an eruption of love and pride.  

love and pride.  The moment that I laid my eyes on you, that was all that mattered.  You pulled it straight from my soul and have continued to do so for each and every day since.  Today, your 2nd birthday, was no different.  I spent the day so in love with your soft little voice, your kisses, and the way you pat pat your baby doll.  There was so much pride today too.  Truthfully, I am proud of every breath you take but today I spent the day in awe of your strength and wit.  In your attempts to "run."  In your ability to follow the leader in library class.  In the fight that you gave the doctor at your well baby visit.  Finally, in your adamant request of pretzels for dinner.  

I will love you, forever and always, because you are my dear one.

xoxo,

momma 

warrior not miracle

I always hesitate to use 'miracle' as a description for Virginia, her journey, or the events surrounding her birth.  I am honored and humbled when other people refer to her as a miracle but for me that term is better suited for circumstances that have defied impossible odds or unexplainable courses.  Fortunately Virginia's odds were not impossible.  There was a series of very slim odds that have highlighted our journey, but never impossible.  I learned to hang my prayers on slim odds and eventually I learned to let go of odds and statistics.   She defied odds & she succumbed to odds but none of that could have given me a glimpse into what life would be like now.   We counted grams and hours, there is just no way that I could have imagined what 20lbs and 2 years would look like.

Now I know.  I know how lucky we are & I know how strong Virginia is.  To me, she is a warrior that fought (and fights) a hard battle; calling her a miracle almost doesn't do her strength justice.

HopeDay

We will always celebrate Virginia's birthday and homecoming day but quietly I still celebrate today, hopeday.  October 13th was day I received steroids and was transferred to maternal special care for more monitoring and eventual NICU intervention.  I had spent a terrifying and exhausting 2 weeks on the gynecology floor of the brand new cancer hospital (that was awkward to explain to people!) where we waited to reach the day that we would use "all medical measures" to save our child.  You see like most things in childbirth our situation was different.  It was complicated.  The baby was footlong breach, necessitating a c-section (classical if born before 29ish weeks).  We believed that my official  due date was a few days too soon.  We were traveling through those critical and very grey (emotionally and theoretically) days of viability.  Intervention was a tough topic.  

It was 2 weeks of feeling like a ticking time bomb.  I tried to ignore any symptoms willfully wishing them away.  I spent my positive energy researching my condition and reading up on everything prematurity.  I watched a lot of HGTV.  I waited and wished for the days to pass quickly to my first goal .. Oct 13.  

At the time October 13th was a day to be celebrated.   My nurses were all smiles as they packed my things into bags for my trip from  north pavillion 14 (cancer hospital) to the west pavilion 10 (maternal special care).  I emailed and texted friends and family with news that we had made it to this first goal.  I celebrated by ordering pancakes and bacon for dinner.  

HopeDay changed my perspective.  Suddenly the impending birth of a baby born months too early was an answered prayer.  

We spent the afternoon celebrating at a birthday party for a set of adorable twins that we met in the NICU.  All  four of these babies were born within a week and a half of each other and combined weighed less than 8 pounds.

why "Catch up by Two" drives preemie parents crazy

AAP, doctors, nurses, EI folks ... whoever is "in charge" of deciding that 2 years old is some magic age where all of a sudden preemies gain back the weeks and months that they missed out in the womb, please, please just stop it.  I get that you want to throw away that adjusted growth chart and stop turning a few pages back in that tidy little infant development booklet that we got at our first pediatrician appointment, BUT..

You are setting up unrealistic expectations.

You are creating an arbitrary deadline on prematurity and all of us in the prematurity business know that there is no deadline for the implications of an early birth.

You are also perpetuating the understanding of the general population that prematurity is just something that can be grown out of.

Virginia will turn two in 2 weeks.  She has made steady progress since she was discharged from the NICU at 4 months old.  In the past 4-5 months she has made some tremendous progress.  Amazing progress really... she is really amazing.  Yet she does not look like, talk like, walk/run like, or play like a two year old.  And you know what?  That is A-OK!  She shouldn't be two years old in 2 weeks, she should be two years old at the beginning of February.  She missed out on nearly 4 months in the warm, quiet, nourishing womb and I think we can give her a pass on catching up to her full term peers before she even reaches pre-school.

We will keep on keeping on, knowing that there is nothing magic about two other than a pink and gold glitter party ;) .  I know there will be a day that I won't mentally adjust her age but its not now and it wont be at the same time that other micro-preemie parents stop mentally adjusting for those months lost in the loud and unnatural world of the NICU.

I know I am not alone in feeling mislead, frustrated and annoyed by the promise of "catching up by two."  Many others have written about this, both from a parent and physician perspective.  Please share other posts on this topic in the comments.

There is no magic age for catching up, not catching up, receiving diagnoses, or understanding long term outcomes.  These are moving targets to understanding where the cards of prematurity will fall and working to make the best of the hand we are dealt.