Merry Christmas

Merry christmas from our family to yours!

Virginia is just about 100% on the mend after her first real cold.  I expect her cough to stick around for a while but Im happy to have the fussiness, sleeplessness, and worrying mostly behind us.  I have to say that I'm shocked it has taken this long for her to get sick.  After 3 months in daycare she finally succumbed to the yuckies.  We are so thankful for her better than expected immune system and ever fighting spirit.

Wishing you a safe and healthy holiday season and a new year full of life, happiness, and health.

Safe to say that our visit with Santa didn't go so well....

This is Virginia's 3rd christmas.  She was in the NICU for her 1st and Santa visited her isolette.  Unfortunately the Polaroid photographic evidence was lost before we ever got to see it.  We were in RSV lockdown for her 2nd christmas so we definitely did not venture to the Mall or any "breakfast with Santa" events.  Instead my Dad donned his jolly red suit for some photos last year.  Needless to say we were excited for this little rite of passage this year!

On Saturday we traipsed through the snow to go to a local store to see Santa.  Good friends of ours work there so we knew that this was pretty low key as santa goes... no long lines and no scary elves. I knew to expect this type of reaction, but I really thought that she might do ok.   We were careful to show her Santa and let her wave to him and then go do some other things.  We lingered around watching other kids visit with Santa and we talked about how nice he was.

NONE of that mattered.  I don't blame her.  

It was quick and mostly painless.  There is a funny picture as evidence and she waved as we left so I don't think that we did any permanent damage.

However, I don't think we will be visiting the easter bunny this year....

And the stocking now...

Roughly 18lbs later that stocking is looking awfully small.   I cannot wait for Santa to stuff that special little stocking in a few weeks  :) 

surviving the holidays in the NICU

Two years ago today on a whim we did something that saved the joy of the holidays for me while in the NICU.  To set the scene you need to understand that we were going on 2 months in the NICU and while our scariest days were seemingly behind us Virginia had failed extubation once again earlier that week.  I was overcome with fear amidst the endless discussion of ventilator dependence, steroid treatment, and the risks of all the different scenarios.  But for one night, with our favorite nurse on duty, all of that was put to the side.  We traveled the right of passage for any new parents and took family holiday photos.  It surprisingly felt totally normal to stuff our 2.5 pound 8 week old in her little stocking and take pictures.  That glimpse of "normalcy" was what we needed that night.  It wasn't much but it was a distraction from the intense fear and worry.  

The NICU is admittedly a difficult place to be during the holidays.  It is literally impossible to be with your family.  You are never actually whole on days that are defined by counting your blessings and celebrating the birth of a full term baby in a manger.  Everyone else is full of holiday cheer and christmas busyness, yet the relentless schedule of pumping, visiting, and NICU worrying allows for little of that and in many cases makes you resentful of all that cheer.  

The NICU does not take holidays.  There is spirit in the air as nurses make footprint ornaments and holiday dinners are provided, but the only way to survive the holidays in the NICU is make the best of those little moments and cherish them.  

Hang a stocking off of the IV pole.

Read christmas books bedside.

Buy that baby's first christmas ornament even if it wasn't supposed to be baby's first christmas.

skype with family... its the next best thing.

connect with other families... everyone is feeling the same way.

Ugly cry to James Taylor's christmas album (or Kenny G may be more your speed)

Ring in the new year with your baby and funny hats.

There is never a "right" way to cope in the NICU and this is especially true during the holidays.  Do what you need to do, one foot in front of the other. Embrace the season where it feels good and turn off the holiday music when you feel the bitterness creeping in.  

Thinking of all of the NICU families in the coming weeks.  I wish I knew how joyful Christmas 2012 and 2013 would be when we were in the throws of NICU Christmas 2011.  

Also thinking of all those post NICU families that are still struggling to find the joy and normalcy of the holidays while navigating their way through RSV isolation.  It gets better :) 

Virginia Lately

Just a good ole fashioned update and mom brag.

This kid is AWESOME.  Seriously, she is awesome.  She is also awesomely naughty sometimes. She is changing and learning so much lately that I am experiencing that bittersweet heartache of pure joy of her continued development and total devastation that she is growing up.

She still LOVES everything elmo.

Her phrase of the week is "whehh _____ go?"  Some variation of this phrase is said 34875203987 times a day.

She practices "running" and "jumping" everyday.  She has a long ways to go but is very enthusiastic about both :)

She insists that everyone's coats and shoes come off when we get in the house.

She is obsessed with shoes.

Her hair is finally starting to grow.  I've never been so proud of a mullet ;)

She licks her finger before turning the page in her books.... imitating much ?!

Lately she confuses "chin" and "Ginny" .. that makes for some funny conversation.

She looked at us like we were totally crazy cakes when we brought the christmas tree in the house. She also let out a huge "WOW" when I turned on the lights for the first time tonight.  We are so so so excited to experience the holidays with her this year.

Virginia will sit on the potty, but only because she wants to use toilet paper.

She is the most ticklish kid ever! and always says "mowr tic tic"

Our bedtime routine has gotten much less dramatic since switching to "how do dinosaurs say goodnight" as our last book of the night.

and now for a photo dump... lots of holiday happenings around here!

prematurity awareness - hear it from others

We have had the honor, pain and joy of sharing our story here over and over here for the past 25 months but nothing is more profound then learning that each story of prematurity is different.  Each story is profound and each story has changed peoples lives.

I'm sharing a few of my favorite posts that others have written during prematurity awareness month this year.  Again, with more awareness we will all make an impact.

Watch this video of little Ward to get the truest glimpse into the world of the NICU as I have ever seen. This video has gone viral for a reason!

Read about Boo and Jax and the world that most of us never knew existed before we were affected by prematurity.

Read about another little V and how not just prematurity but a single moment in the NICU can change people forever.

Read about the babies that may seem to be forgotten but instead are embraced and loved by the angels of the NICU.

Read about how guilt is such a large part of the prematurity journey from Jenny.

Read about all of the losses that accompany prematurity from Charlie's mom.

Read Laura's tremendous collection of prematurity facts of the day.

Learn about the two worlds that prematurity becomes for Heather.

There are many, many more stories (please share others in the comments) and all need to be told and retold.  More awareness is the path to lowering the rate of prematurity.  More awareness is the path to changing the perceptions of prematurity.

prematurity.... 2 years later

Last year as part of my post on prematurity month I wrote a post called Our journey in medical terms.  It was my attempt to convey the foreign language that prematurity is and how quickly parents and care givers must acclimate to the new language and unfamiliar world of prematurity.  

What I didn't talk about in that post is the lasting impacts of prematurity, especially the less obvious ones.  I will try to highlight some of these impacts below because prematurity does not end when you leave the NICU.  

We have hit our very expensive medical insurance deductible for the past 3 years and expect to do the same for the next year or two at least, yet we are thankful to have insurance.  Additionally early intervention services in our state are not free.  

Doctors and therapists come and go from our schedule.  It seems as soon as we drop one we pick up another.  This weeks new patient appointment - a developmental opthamologist.  I never knew there was such a specialty. 

We buy shoes that fit SMOs,  hand sanitizer in bulk,  sensory "toys" and hepa filters galore.  

The only way I was able to return to work was because I am fortunate enough to have a flexible schedule and found a wonderful Nanny.  

Thinking about another child is not a matter of considering how far apart we would like our kids to be in age.  For us and many others it is starts with the contemplation of the risks.  Then it is surgeries, high risk status, medications, and alot of worry.  

Superficially it may appear that prematurity is behind us but every day there are not only reminders but real impacts.  However, everyday I am reminded of the quote below through the magic of watching my 2 year old.

world prematurity day

Virginia on World Prematurity Day in 2011, 2012 + 2013  holding her NNICU lambie.

World prematurity day is coming to a close and this little blog has had alot of visitors today (welcome to our little world, y'all!).  I typically have not linked this blog to any of my personal social media accounts, in fact the blog originated as a way of keeping things somewhat private (ohh the irony) and off of facebook when we were facing those terribly scary days of autumn 2011.  However, I realized that awareness was the the most profound thing we could do to contribute to reducing the rate of preterm birth.

Thanks to lots of friends posting and reposting our story, I feel like we have made a difference.  Given the alarming rate of prematurity in our country (1 in 9 babies) I am certain that we have reached someone that may be at risk for a preterm birth.  I hope by sharing someone at risk knows more about the warning signs and is more confident to advocate for their care.

Our story is everyones story.  We will continue to share it and hope that you do too.

please visit The March of Dimes to learn more about the risk factors, signs, and symptoms of premature birth.

and go to the World Heath Organization to see the global impact of premature birth.

hugs heal

Hugs Heal.

They really do.  They heal hearts.  They heal premature babies.

Hugs have quite literally saved millions of babies in hospitals around the world where neonatal equipment is scarce.  Pre-term Babies previously died under these conditions because they were unable to regulate their body temperature.  Kangaroo care was developed in and has transformed neonatal care in the developing world, saving many many babies.

Virginia was lucky enough to be born in a top notch hospital and lived in a high tech incubator appropriately dubbed the "womb with a view."  She could be weighed, fed, and given medication with little disturbance within her plexiglass box.  The incubator was also able to carefully monitor her temperature and provide humidification and heat as necessary.  Because of this available technology,  in our case kangaroo care was not necessarily life saving but our hugs certainly did heal.  It was healing for all 3 of us (Heath and I equally split our kangaroo care opportunities.)

I spent the first 3 weeks of Virginia's life peeking at her through the blanket covering her isolette and softly reading to her.  It was all I could do for her aside from pumping breastmilk every few hours.  I was envious of the other moms in our pod that held their babies each morning and night.  I watched closely as the well choreographed transfer of tiny babies and all of their equipment resulted in the calmest moments in the NICU world that was anything but calm.

There were an overwhelming number of ups and downs in those weeks.  The days were painfully long and sleep was scarce.  The future was a world of unknowns, forcing us to live and cope in the moment.    Things were so uncertain that I did not even know that I was going to be able to hold Virginia for the first time until moments before it actually happened.  

I will never ever forget the first hug I had with Virginia.  The tubes, IVs, tape, wires; while cumbersome, mattered little in that moment.  Her unbelievably small body settled into mine, her body relaxed and her sats stabilized.  We were finally back together again and it was truly the first time I felt like a mom.  I was providing her warmth and comfort and she was healing my heart.  hugs heal.

Honor these tiny babies by giving more hugs.

Hug your healthy kids.

Hug those you are thankful for.

Hug those who need it.

Hugs heal.

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.  

quizzing (video)

Virginia likes for us to quiz her on things lately.  She especially likes when we ask her to do animal sounds ;)

Elm City Legends

Our little family has the honor of being the March of Dimes ambassador family in a few short weeks at an event called Elm City Legends.  As many of you know New Haven, the ELM CITY, is near and dear to our hearts.  It is where my first BIG architecture/development project monopolized my time from 2007 to 2011 and more importantly it is where we essentially called home for 5.5 months in 2011 and 2012 during our bedrest and NICU stays.  A LOT of blood, sweat and tears have been shed in New Haven.

New Haven is a city full of good food, great pizza, lots of new england charm, great museums, a spectacular hospital, and some really wonderful people.  Elm City Legends is an event each year that honors some of those wonderful people that have made a positive impact on the community and simultaneously supports the Connecticut Chapter of the March of Dimes.

We are honored to share our story at the event and are thrilled that one of the honorees is one of our very special nurses from the NICU.  This nurse was the first one to show me how to hold my one pound daughter.  Let that sink in.. I needed someone to show me how to physically hold my daughter amid her endotrachial tube, IVs, PICC line, pulse-ox, and umbilical lines.  She was the nurse that cheered when I brought down the smallest little bottle of breast milk for the first time.  "A few CCs is all we need," she said.   She was the nurse that gave the biggest hugs during both the hard times and the good times.  Hugs big enough to feel her love, compassion and prayers.  She is most deserving of this honor.

If you are local to New Haven an able to attend this event on November 8th please follow this link to purchase tickets.  If you are not able to attend but would like to show your support that same link can be used to make a "Fund the Mission" donation.

the best part of my day

My computer is currently getting CPR at the Apple store, so its been quiet around here.  I have to say, its been nice to have one less internet device/power cord/distraction though.

We have been trudging through the week.  The anniversaries have started.  Fall has arrived.  Work has been busy.  Life has been busier.  However, all is good when we get home at the end of the day and have these precious moments outside before its time for the dinner/bath/bed scramble.

This is the best part of my day.  everyday.

anniversaries

I can feel it.

The emotions are brewing.

It's the weather that always tips me off.

I entered the hospital on a day much like today.  A chilly morning followed by a warm sunny afternoon.  There was a crispness in the air yet the trees still had their leaves.

I hear these anniversaries get easier.  While I am sure they will get easier,  right now things still seem fresh.  Yes, easier than last year but still fresh.

I dont think that I will ever forget the details surrounding late september and october of 2011, nor do I want to.  It was those days that changed our lives forever.   The difference is that this year its not just the memories of those scary days, weeks and months of 2011 but there are also some really wonderful memories of this time last year as we led up to her 1st birthday.  Im reminded of  Virginia learning to sit up  and her first little teeth popping through.  It was those things a year ago that got me through the anxieties and sadness from the year prior.

While the days leading up to Virginias birthday bring on a mix of emotions I still think of her actual birthday as a really joyous time.  A time to be celebrated.  It is afterall the day that we found out that we had a daughter, the birth of our first child, and the day we set eyes on our beautiful little girl for the first time.

These anniversaries are fast approaching... starting in just a few days.  I simultaneously dread the late nights that remind me of hospital bed rest and so look forward to her 2nd birthday.  However, it is days like today that remind me to celebrate how far we have all come.  The same weather that brings me right back to the fall of 2011 also brings on some of the best days here in the northeast.  Today we welcomed in fall with a morning family photo shoot followed by apple picking and fall fun at a local farm.  

Afterall, apple cider donuts are good for the soul ;)

Neonatal Nurses Day

I was planning to write a post today in honor of Neonatal Nurses Day but 2 extraordinary bloggers wrote posts this weekend that so profoundly and beautifully captured why neonatal nurses are so special.  Their words capture exactly how we feel about our amazing nurses from Yale New Haven Children's Hospital.

Heather from Team Hucks wrote this article for preemie babies 101 

and

Tatum at Aint no Rollercoaster wrote this post.

If you have spent time in a NICU you know how spot on perfect these two posts are.

If you have not spent time in a NICU, please take a moment to read these.  You will instantly understand why we call our nurses our heros.  You will understand just how we were able to leave Virginia's bedside to go home at night.

To our nurses:  Thank you is insufficient. You changed our lives.  You served as family, friends, and counselors during our 124 days and we are thankful for your continued friendship and support.  In our eyes you wear a cloak of superhero and a halo of an angel.  Much like Heather Hucks "I’ll never be able to think of my child’s life, without thinking of you."

what I always dreamed of

This.

This is what I always dreamed of.

gorgeously unkept rose garden.

aloof sweet spotted dog.

curious & beautiful little girl.

soul mate (not pictured).

What I now realize is what I dreamed of doesn't have to be perfection to be a dream come true.  I would do anything to take away the pain that this journey has caused Virginia and I will do anything to avoid her pain in the future, but this journey is what makes this image perfection to me.

Like the pebbles strewn across the slate path, our lives and bodies are not perfect but somehow it does not take away from the beauty of the moment.  Those pebbles, our struggles have not destroyed the dream, they have just made us more focused on the beauty.

Like the tilted flowers looking for the sun, we are still finding our way.  Looking for the best direction to help our girl blossom.  We must me flexible and willing to reach for that brightness.

It is always easier to see the beauty and relinquish the pain while we are in the moment.  

read more about why the garden is so special here. Virginia's own little secret garden.

day 1 of daycare

We all survived day one.  Virginia has cried just about every morning that I have left for work for the last 6 months, so it really was no surprise when she got a pouty lip and reached dove for me as I dropped her off this morning.  I made it short and got out fast feeling like the most cold hearted mother ever, but I know it was for the best (for both of us).  

I had a busy morning (also a good thing) and finally got a chance to call in the early afternoon.  I got that familiar pit in my stomach as I waited for someone to pick up.  Much like when calling the NICU I had no idea what kind of report I would get.  She was doing fine (obviously) and then it hit me... we are so damn lucky.  Yes, it sucks to leave my kid with virtual strangers all day, but been there done that.  Been there done that at a time where I wasn't sure if she would survive.  Been there done that at a time where I didn't know what her future would hold.  Been there done that when a day like today was unimaginable.  Been there done that for 124 days without getting to snuggle her and eat her up when we got home.  We are so damn lucky.  Its all relative friends.  

By the end of the day she was pretty strung out.  I did my best to be patient and follow her cues.  This is how the evening went... apparently she was hungry.