Saturday, June 29, 2013

when did my baby become a toddler?

Seriously.... toddlerhood totally snuck up on me!  I feel like I woke up one day this week and suddenly she was a big, sassy, independent, and affectionate toddler.

So now that I have accepted that she is a toddler, I have also accepted that she will not be "caught up" by two and most likely by three either.  But thats all ok.   The progression of her development has always been very cyclical for me.  The stages are :
Worry - I spend too much time scrutinizing her skills compared to her  peers.  I know better... comparing kids never ends well.
Anxious- I will notice progress but the process of the progress drives me crazy.  I know better ... its her schedule not mine.
Proud- I finally recognize her progress and how amazing she is and spend some time just marveling at her and her latest accomplishment.
Annoyed- As I linger in the proud stage, I find that everyone else is moving on to the next skill or the next thing that she may be delayed in.  Annoyed and feeling like others just come stomping over our confetti I quickly get thrust back into the worry stage.

Whether it was vent weaning or crawling ; bottle feeding or walking - I haven't been able to break the cycle.  One of these days I will get "caught up" and learn how to temper the worry, anxious and annoyed and how make that proud stage extra special.

Wednesday, June 26, 2013

tiny toes - big climb

These itty bitty little toes ....  small enough to fit through our wedding rings but big enough to recognize that she inherited my strange toe genes.  

Those little feet have never stopped moving.  
Virginia was breech and VERY low so every kick felt like she was escaping.  
At birth she did not cry and she had no drive to breathe yet she was kicking. 
She has been trying to climb out of her crib since the moment that she could pull to stand back in December. 

And now she can officially climb up her highchair (yikes!).
She will move boxes to climb to get something out of reach.
She can climb onto the couch.
She tries to climb the baby gates.
If given the opportunity she can climb in and out of the tub (double yikes!)

We are totally in for it.....

Monday, June 24, 2013

night away

Its amazing what 24 hours away can do.  Heath and I spent our first night together & away from Virginia since February 21st 2012 (her last night in the hospital).  We have each been away from her a number of times but never together.  I wasn't nervous to leave her because I knew she was going to be having lots of fun with Moma, but I was very happy to see her (and her big smile) when we got back home.

We were in Brooklyn this weekend to attend the wedding of one of my dearest friends from Architecture school.   It was so nice to see some wonderful friends that I don't get to see nearly enough and a great getaway for us as a couple.  It was such a gorgeous evening full of love, celebration, and delicious cocktails.  There is nothing like seeing the friends that you love get married.

Moma arrived a day before the wedding festivities so we were able to spend some time with her before our little getaway and then a little more time with her before she left.  Naturally, we spent most of that time at the beach.

Thursday, June 20, 2013

looking back

I still can't believe that this beautiful face had...

this goofy little grin just a year ago...

and was this fragile and sick just 19 months ago.  

It all still feels like just yesterday... moreso 19 months ago than a year ago.  I look at that photo and can tell you EXACTLY what was going on. 
*I had just gotten to room 3 and Virginia had clothes on for the first time.  I took the photo to send to my Mom who had bought that "shirt,"  which was no bigger than a deck of cards.
*Anne, her nurse, was getting ready to set up a feeding.
*Virginia was clearly unhappy to be on her back.  She spent 90% of her days on her belly back then.  
*She had just started opening her eyes a week prior.
*She had just gotten back up to her birthweight and started gaining some weight.  To this day I still don't know how low she got and I don't wish to know.  
*We were anxiously awaiting some critical endocrinology reports that day as well as her 30 day head ultrasound results.  
*I was able to simultaneously worry over the medical issue of the day (or hour) and cringe at the unmatched linens in her bed.  

I look at the photo from a year ago and am comforted that I have no idea what was going on that day.  I don't remember taking that photo and looked at it for the first time when I went searching for a photo from exactly one year ago.  The irrelevancy of photo gives me joy because I realize that we had emerged from living life day to day (or hour to hour) and were able to find joy in just living.  We were cautious, knowing that there were many challenges ahead but finally able to appreciate where we were.     

Monday, June 17, 2013

Father's Day in Photos

We had a great weekend... meaning I am exhausted!  Ill keep my words brief and instead post plenty of photos.

Last year I made this clever collage of photos to spell D-A-D (thanks to pinterest!)  and thought I would duplicate it this year.  It was about 98324759283 times harder to take the photos this year.  Virginia had no interest in holding the letters and even less interest in standing still or smiling.  I think it took 108 photos to get these 3, which I put in the same style of frame as last year.  It will be fun to see these side by side in Heath's office.

BobBob came for a visit this weekend.  Heath had class all day on Saturday, so BobBob, Virginia and I spent the day at the beach and then went to another beach in town for lobster rolls and an absolutely gorgeous evening of eating and playing at the shore.  

Sunday was spent doing some of Dada's favorite things... brunch this morning, US Open watching this afternoon, Mexican for dinner followed by our favorite Ice Cream Parlor.  It was a pretty perfect weekend!    

Happy Father's Day to all the dads out there but especially to  Heath, to BobBob, and to Papa.   We are also thinking of all the Dads that are celebrating their fathers day in the NICU.  Dads often have a uniquely powerful and difficult position in the NICU journey and today we are thinking of all of them, wishing them peace, strength and love.  

Thursday, June 13, 2013


With Father's day just around the corner I thought Id share my all time favorite photo of Virginia and Heath.  Taken on her due date, this image perfectly depicted those days of love, fragility, and mercy.  

Today I look at this image and for a moment could confuse it with a typical newborn hospital photo, that one that is taken on delivery day amid balloons and visitors.  
It has that intense love.  
There is that tiny baby.  
That typical hospital background.

But deeper there are all those things that set it apart.
The confidence in his grasp, something that can only come after handling your baby for 4 months.
His eyes, there is more than love in that look; there is immense gratitude, deep pain, and so much hope. 
And then there is that pesky little NG tube hanging down her back.  

3 weeks after this photo was taken, we took Virginia home.  Heath carried her out of the hospital in her carseat like every other proud first time Dad.  It was presumably one of the proudest days of his life.  

Tuesday, June 11, 2013


This is a pretty typical mealtime around here.  A perfect illustration of Virginia's independence and defiance.  These photos also shows why Pippi puts up with all of the excitement and sometimes not so gentle petting and love from Virginia.  

Thursday, June 6, 2013


Tuesday was one of those days full of NICU irony for me.  As my head hit the pillow that night I couldn't help but shake my head a bit.

Last week I was asked to attend the last NNICU Family Advisory Council meeting as a guest and prospective volunteer.  The council is made up of parents, administrators, doctors and nurses and serves  to organize and support family centered initiatives for the NNICU.

I was sure to leave myself plenty of time to navigate traffic on my way to New Haven because rushing to the hospital reminds me just a little too much of those days where I would run (literally and figuratively) from work to the NICU in time to make it to Virginia's 6pm feeding and care time.  More often than not I was that crazy parent that would run from the parking garage over the pedestrian bridge through the atrium and then frantically wait for the elevator up to the 4th floor.  I now give myself lots of extra time for any appointments or meetings at the hospital - its just better for my mental health ;)

As I pulled into the garage and started to navigate the steep curve towards the ticket machine the satellite radio in my car regained its signal and slowly I heard the strum of a guitar and a special song.  "Home" played as I made the all too familiar turns through the garage until I finally found a spot in my preferred area on the 6th floor.  Hundreds and hundreds of trips through that garage and the anticipation of finding the right spot still sits deep inside of me.  The spot had to have quick access to the elevators but I also preferred to be at the outside wall so that I could have my regular ugly cry before driving home for the night.  I did not let myself cry in the hospital so that parking space was critical.  There were no tears on Tuesday, just a smile over the irony.

From the garage I made my way down the the 2nd floor pedestrian bridge.  I always see familar faces at the hospital.  Most don't remember me in the way that I remember them but today was different.  The resident that was running room 5 at the end of Virginia's stay approached, smiled and immediately asked "How is Virginia?"  I was surprised that he recognized me over a year later and even more shocked that he remembered Virginia's name until I remembered the hell that both Virginia and moreso Heath and I gave him that month.  It was an incredibly frustrating and scary time for us and this particular resident dealt with endless amounts of questions and questioning.   After showing him some photos of Virginia I walked away realizing that he remembered us because Virginia was likely his most challenging patient and we were his most relentless parents during that rotation.

After the meeting I zipped back home in time to put Virginia to bed.  I got her in her jammies, zipped her in her sleep sack, and sorta mindlessly pulled a book off the shelf to read.  We have lots of books with paper pages but don't read them as often as our board books because Virginia tends to turn them into confetti.  For this reason I was not very familiar with the book I pulled out.  I opened the front cover and immediately realized that it was one of the books that we received from the NICU book cart.  I looked closer and realized that this book was donated by the family of the woman who invited me to join the advisory council meeting.  full circle.

The irony.  The beautiful and painful circle of prematurity where all those little things like parking garages, books and songs carry great significance.

Sunday, June 2, 2013

Officially Walking

At a little over 19 months I think we can officially say that Virginia is walking. 
We are no longer counting her steps.  
She is able to stop and start.  
She is able to traverse uneven surfaces.  
She can turn. 
And ...  she can finally(!) get up without having to pull up on something.  

I generally consider walking as a "social milestone,"  one of those things that EVERYONE always asks about.  A milestone that in some ways is more critical in everyday life than it is in the medical and developmental world.  With that said, there was a tremendous amount of hard work and a lot of other milestones that were less significant socially but more significant developmentally that went into achieving this milestone.  

There was a time when we weren't sure that our baby would ever walk.  Walking falls into the long list of things that the Neonatologists recite in their well rehearsed speech to parents that are about to welcome their babies into the world at the brink of viability.   
neonatal death
brain injury
permanent lung damage
social and intellectual disabilities 
never walk
never talk
never eat
Its an awful and scary list, but a list that we were suddenly forced to prepare for.  

This is my favorite picture.  You know Virginia is concentrating very hard when she crosses her sweet fingers on her left hand ;)