Parents of Preemies Day

Becoming a parent of a preemie transformed who I am at my core.  Seemingly everything was taken out of my control; my impossibly small child was surgically removed from me 15 weeks early.  We had a month of bed-rest to prepare but no amount of preparation was sufficient for our impending journey.  It was like being catapulted into the ocean.  First we had to learn how to swim, but for a long time we were often just treading water.  Eventually we found our vessel.  Its was the same big ocean, just a different vessel.  

In the days leading up to Virginia's birth I was emotionally numb, I was scared, and I had enormous amount of guilt.  Everything changed within minutes of her birth.  Amidst a tense operating room a wonderfully sweet nurse placed plastic identification bands around our wrists, our first symbol of parenthood.  She tightened those wristbands and let us know that we had a feisty baby that was kicking all the way to the resuscitation room.  At 650 grams Virginia couldn't cry, she couldn't breathe on her own, and her eyelids were fused shut, yet she kicked and kicked and kicked.  From that moment I was so proud to be that baby's mom.  I didn't even know yet whether that baby was a boy or girl.  I hadn't yet seen her face.  I hadn't touched her, but I was so proud.  So proud that she was fighting.  She was fighting a fight that I couldn't fight for her.  She was fighting and I needed to be her coach in the corner.  I needed to advocate for her, pray for her, and support her.  I needed to pump, needed to be strong, and needed to be positive.  

The intense need for us to do everything we could to advocate for and support our girl has not changed.    Our vessel has been on a different course than what we ever imagined but it has allowed us to see the world in a new way.  I'm proud of the way that we have sailed our ship so far.   Im still most  proud of our first mate.  She kicked and kicked hard enough to swim with us until we found our way.  

On March 10th we will join many other parent's of preemies to celebrate our journeys and to be proud. Grahams Foundation is bringing the preemie community together for their second annual Parent's of Preemies Day to honor the 13 million people each year that become parents too soon.  It is a day to honor the parents that are reluctantly sent on this journey, yet gather the strength, courage and commitment to parent these tiny babies.   Please visit their facebook page for more information about events in your area and on the web and join their worldwide twitter chat on March 10th from 2-3pm EST by using the hashtag #parentsofpreemiesday . Register for the twitter event here to be entered to win a prize pack.  

1 year at home

Time is a funny thing.  Virginia's first birthday feels like SO long ago.  Her homecoming feels like yesterday though.  The good and bad moments that define my life are the ones closest to my heart and will always feel like they happened yesterday.  

Virginia's homecoming day was one of the proudest and happiest of our lives.  Her birth was surrounded with fear and unknowns (and if I can be totally honest, disappointment and guilt)  but her homecoming was just joy.  For that one day we forgot about the journey and we ignored everything that laid ahead and we just lived.  We were like any other first time parents coming home with their baby.  We asked ourselves "what now?" about 5 minutes after getting home,  we were excited to see how our dog would react,  we brought the bouncy seat to dining room while we ate dinner, and we prepared for a sleepless night.  Reality struck a few days later with a fury of appointments, feeding struggles, fears, and questions but for that day we just danced on cloud nine.  

Today we celebrated with crumbs cupcakes and some extra long snuggles at bedtime.  We are treasuring these days.  16 months old and 12 months at home... what a ride.  

Lily Wraps

I mentioned in my previous post that we are donating books and Lily Wraps to the YNHH NICU in honor and celebration of Virginia's homecoming.   We will be donating one for every donation to our March of Dimes team this week.  Truly every donation will make an impact.

Donating books was an obvious choice for us and something we also did at Virginia's birthday.  Most of the books on the NICU book cart are donated by graduate families and many come with a mention of how their family was affected.  The books that we have from that book cart gave us hope, warmth and love.

I recently met the wonderful woman behind Lily Wraps.  She so eloquently wrote about the story of how we met on her blog.  Go read it!   She is the mom to 4 beautiful children, one of which is a micro-preemie like Virginia and another little girl who was too small for earth and is now a beautiful angel.  April is also a NICU nurse here in Connecticut and is a tireless advocate for the March of Dimes and for prematurity and infant loss awareness. Yes, she is amazing!

We are so very aware of how we could have needed a Lily Wrap.  At 22 weeks pregnant my doctors offered very few options for care; most thought I would deliver immanently.  The darkest nights of my life were during the 2 weeks in the hospital before viability day.  I had so much HOPE but during those dark nights my hope wavered and I wondered how we would say goodbye and how I would memorize my baby's face.  My heart will never forget that anguish.

I can not imagine the pain of losing a baby.  I am sure it is a pain that is so raw and deeper than someone can adequately express.  I know far too many people that do know that pain.  I hate that anyone needs Lily Wraps, but I am grateful that April offers these perfectly small blankets to wrap precious babies and envelope the hearts of their families.

Please also consider donating directly to Lily's Amazing Grace.  100% of the donations go directly to Lily Wraps, NICU care packages, and Bereavement Boxes for local families.  http://www.lilysamazinggrace.com/p/how-to-donate.html

a homecoming celebration

On Friday we will have a homecoming celebration.  We will eat cupcakes and will likely talk about how big Virginia is and how homecoming day simultaneously feels like yesterday and forever ago. We will also celebrate by doing what helps us heal the most, by doing something to raise awareness and support for prematurity.

This year we will be donating a book or a lily wrap  for  every donation that is made to our march of dimes team or every new walker that signs up to join our team this week.  The books will be added to the YNHH NICU book cart for families to read to their babies.  We cherish the books that we received from this cart and also cherish the memories that were made when our only way of bonding with Virginia was reading to her through the portholes of her incubator.  The lily wraps will be donated to the NICU and Labor & Birth units at YNHH for families to wrap their babies in as they make their journey to heaven or after they have passed away.

Please consider signing up to walk with us or consider making a small donation to our March for Babies team this week  by following this link.  Your support will help not only the research and family support that are the forefront of the March of Dimes mission but will also comfort a family at Yale New Haven Hospital that is struggling with prematurity or loss.

Little Valentine

This is our last "first ______ holiday" at home.  We are approaching a whole year of Virginia being home with us!

Valentine's day last year was the turning point for Virginia.  She was finally starting to act like a newborn.  She was waking up for meals, she was crying, and she was starting to take bottles.   It was a turning point for us too.  We went from having so much fear of the unknown and for her future to really just enjoying her and taking care of her.  In a few weeks time the conversation turned from questions of ET studies, swallow studies, ng-tube, g-tube, PVL, ultrasounds and MRIs to talk of car seat tests, bottle types, home care instructions and discharge.

Valentines day this year consists of Physical Therapy, lots of playing and maybe a little time in the snow.   Hugs and Kisses from our little valentine to you!

look at those chins! 

 same heart <3

it stings

We should have been celebrating Virginia's first birthday this weekend.  I'm bitter that my biggest worry should have been canceling a birthday party because of the snowstorm of the decade here in Connecticut.

Allow me to sulk for a bit.  I typically try to focus on the positive things about the journey that we have been on.  We have met amazing people, we have watched Virginia overcome so much,  we have been awakened to our faith and most of all we have been embraced by so much support from family, friends and strangers.

There has been alot of shitty stuff along the way too.

I will always be haunted by the painful and life altering things that Virginia has gone through due to her prematurity.  There are few words to describe how downright awful the medical side of extreme prematurity is. Have you ever watched at 1lb 7oz baby clearly experiencing pain?  I have and it is awful.  I will leave it at that and instead finally let out  the other things that suck about prematurity.  I realize that many of these things may seem insignificant but unless you have gone through this it is hard to understand how much it can sting.

The fact that Heath never felt the baby kick.  He may have caught a glimpse of my stomach jumping as she did backflips while on bedrest but we never had that moment on the couch while relaxing at home, giggling over baby kicks.

We didn't see Virginia after her birth and she didn't cry.   It took 3 attempts to intubate her and we knew nothing during that time, not even if she was a baby boy or girl.  That moment where parents wait for their baby's first cry? ... we waited months for that.

Our first moments of privacy as a family came when Virginia was 4 months old.   The hardest and happiest moments of my life were in front of  dozens of other people with nothing but rolling screens to separate our 40 square feet from the rest of the room during the most private moments.

Only those people who knew I was pregnant knew I was pregnant.  At 22 weeks 1 day I drove my self to the hospital.  When I pulled my car into the labor and delivery valet the man who came to open my door looked at me and then informed me I was at the wrong entrance, he clearly didn't know I was pregnant.  Last summer I strapped Virginia into the carrier and brought her into my BV (before Virginia) daily lunch spot and the woman behind the counter thought I adopted her.  No lie.

There was no hospital bag. No comfy robe, soft blanket or newborn outfit.   We didn't even have a camera with us; forget about remembering power cords, snacks for dad, lanisoh or anything else on those mile long lists of "necessities."

We never took a birthing class but we were tormented by seeing the hugely pregnant women and their doting husbands parade past the NICU every Sunday and Wednesday for their birthing class and hospital tour.

Similarly the NICU was located next to labor and delivery for obvious logistical reasons, but this meant that there always seemed to be joyful families with balloons and flowers in hand waiting to see mom and baby as they passed by en route to go up to the post partum floor.

There was no third trimester, no registry gun zapping, no nursery furniture shopping, and no nesting.

Lastly there will never be a typical pregnancy or birth.  We hope to have another child some day but it will never be what most people experience. I'll never experience labor.  There will never be a natural birth.  Ill never get to experience having a big full term baby immediately placed on my chest.  Heath will never be the first to cut the umbilical cord.  We will never go through the process as it is described in those "What to Expect When you are Expecting" books, but hopefully it WILL happily commence with a big healthy baby.

P.S.   On the plus side I never had a glucose screening, group b strep test, swollen feet or stretch marks, and I was fully recovered by the time I was taking care of a "newborn" 24/7.

preemie moms & dads - what stings for you?  Feel free to share.  I felt much better after getting this out and having an adult beverage ;)

snow day

We are buried under 30 inches of snow from the blizzard that made its way through the northeast yesterday and overnight.  Unlike our friends and neighbors we are pro's at keeping ourselves occupied in the house all day, So other than having to dig out we are having a pretty typical weekend!   

We did take Virginia and the dog out in the fresh snow this morning but as you can see below neither of them were thrilled with the cold bursts of blowing snow.  

Stay safe local friends!  

Topper

I've written before about Giraffes being our special little thing for Virginia.

It  all started with Virginia's high tech isolette, her home for over 2.5 months, which was called the giraffe bed.  Then there were the uncanny amount of baby cards that we received that had giraffes on them.  But the real connection came from the 4.5 foot giraffes that were always in the hospital gift shop.  Heath and I often took a break from the NICU in the evenings to go down to the gift shop for a rice krispie treat and a pack of cherry life savers.  It was our routine and each night the giraffes peered over us as we picked out our snacks.  After a few weeks we noticed that people actually purchased these enormous stuffed animals.  We were incredulous that people actually purchased them and carried these laughably large stuffed giraffes through the hospital to greet a patient or newborn baby.  We decided that we HAD to have one.  One day, someday, on discharge day we would walk out of Yale New Haven Hospital with Virginia and the 4.5 foot giraffe in tow.  It didn't exactly happen that way and Santa actually delivered an identical one to our house (wink wink; Amazon had them on sale), but from then on giraffes became our thing.

We started to get lots of giraffe gifts for us and Virginia.  They are all very special to us.  We now have many stuffed giraffes and figurines, a giraffe photo frame, giraffe outfits, a giraffe hair clip,  a giraffe bank, a giraffe tapestry (from Africa!), and even a beautiful giraffe wine stopper (we needed it!).

The most special giraffe of all is a small beanie baby  from my Aunt Karen.  Initially it looked like another cute addition to the shelf of small giraffes that we had acquired, but then I curiously opened the tag.  I knew from my beanie baby collecting days of the early 1990s that all beanie babies come with a name and a birthdate, which can be found inside the small tag attached to their ear.  This one was named Topper, cute!  Then I scanned down to look at the birthdate and instantly got goosebumps.  May 28, 2007... what would have been my Grandmother and our little Virginia's namesake, Virginia Klem's 92nd birthday (her first after her passing on November 28th 2006).  Ironically I also found out I was pregnant with our little Virginia on May 28, 2011.
I can feel big Virginia smiling every time I arrange Topper just so on the shelf beside Virginia's crib.

a due date

2/4/12

Initially there was some confusion on my due date.  I thought it should have been February 7th, my first doctor thought it should have been the February 10th and ironically enough my OB finally put it in my file as February 4th to avoid any potential problems at the end of the pregnancy should I go over due and need an induction.  How ironic in hindsight.  That confusion also made the discussions during bedrest about viability and NICU interventions even tougher and more complicated than they already were.  All of us in the preemie community know that the days between a 24w 1d baby (February 10th due date) and a 25w 0d baby (February 4th due date) are excruciatingly critical.

Despite all of the initial confusion we had very quickly embraced 2/4/12.  We speculated whether the baby might come 8 days early for my birthday or maybe 3 days early for my sister and mother in law's birthdays.  We worried whether we would need to drive the 25 miles to the hospital in a snowstorm.  I had even bought a winter bunting just a few days before I went on bedrest.  All that changed as the leaves fell in late September 2011.  We immediately knew that I wouldn't make it to 2/4/12 but we hoped to have a 2012 baby.     Things got worse and we held on hope for a December baby, and then again our expectations changed and we hoped to make it out of October.  2/4/12 seemed so far away.

During the first 2 months in the NICU no one talked about going home.  This was for obvious reasons.  After Virginia moved out of the ICN most nurses told us to expect that she go home around her due date.  By mid January it was very clear that she was not going to make it home by her due date.  In fact, at that point I think I tried to erase 2/4/12 from my memory.  Im pretty sure I didn't talk about it, blog about it or mention her due date.  There were bigger worries at the time and there was no timeline for discharge.

This year is different.  2/4/12 seems more significant for some reason.  Thankfully there are less worries this year, so there is more space in the emotional part of my thoughts to think about the significance.  It brings back alot of guilt and alot of what if's.  We will always celebrate 10/22/11 (V's birthday) and 2/22/12 (V's homecoming) and hopefully the significance of 2/4/12 will fade away as we all continue to heal.

2/4/12

she's got soul

Ive written before about the many faces of Virginia but lately I see much past the happy, smiley, giggly faces.  This girl has some soul.

She also has spunk

 and joy

 She is definitely determined

 And playful

She is curious

And a bit mischievous 

 But most of all she's got soul