Sign up for Go Ginny Go

We are 21 walkers short of our goal of reaching 25 walkers by the end of the year!  Please consider signing up and joining us at the Fairfield, CT walk or the Saratoga, NY walk!

As the calendar turns to a new year we are gearing up for the 2013 March for Babies. We have set an ambitious fundraising goal of $7500 and hope to grow our walker total 3 fold.  We are also looking into some additional ways of fundraising, so if any of you have ideas please send them my way!  

Please visit our fundraising page.  If you are local (or feeling up for a roadtrip) please consider walking with us here in Fairfield on Sunday May 5th 2013.  The walk is such a beautiful celebration of babies and a very inspiring event.  There has been some momentum for a Go Ginny Go team for the Saratoga NY walk on Saturday April 29th 2013.  If you are interested in either of these walks please sign up on our page and I will work with the March of Dimes to make sure the registrations for the walks are properly coordinated.

http://www.marchforbabies.org/virginiakkent

2012 vintage go ginny go

phone photo dump - christmas edition

I will do a full update when we get back home, but in the meantime here are some photos from Christmas Eve and Christmas day.  Virginia had a wonderful Christmas.  It goes without saying that Heath and I had our best Christmas yet, there is no better gift or blessing than our happy and healthy girl.

travels

We spent Saturday packing and preparing for our trip to Maryland to spend Christmas with my side of the family.

Virginia falls somewhere in the gray zone in the precautions that most people recommend for preemies of her age and health.  She is definitely still at risk for a bad reaction to a respiratory illness, but she is also pretty big and strong.  She looks so healthy, but the reality of how small and sick she was is still very much in the front of our memory.  We spent alot of time debating what to do for the holidays and we were hopeful that Virginia would qualify for synagis to make our decision a bit easier.  After 3 rounds of appeals and denials it is ironic that our final denial came on Friday.  We had already decided to travel, its the best thing for our family and we are taking plenty of precautions to protect Virginia.  These are the types of conversations and decisions that have become part of our life.  Not being able to take Virginia to church, the grocery store, the mall, the library or a mommy and me class doesn't bother us, but it is harder when it impacts our ability to see our friends and family.  This trip to see friends and family is a much needed break to our winter isolation.  

We adjusted Virginia's schedule to prepare for the 5 hour drive.  We skipped her afternoon nap and let her learn to climb the stairs as a way of wearing her out in the hope that she would sleep most of the ride.

That "adjustment" to her schedule has seemed to backfire.   The combination of some serious teething, a little cough, a new environment and alot of holiday excitement has made for some fitful sleep.    Im hoping that Santa brings us all a long night of uninterrupted sleep!

Advent

Virginia has been mastering the art of opening gifts throughout the advent season with her extra special advent calendar.  Nino and Papa made all of the grandkids an advent calendar of christmas books!   Each night Virginia opens a new book and we (usually) read it right before bedtime.  She has gotten good at unwrapping and chewing on the books.  Most of the time she also enjoys reading them with us too.  For those of you that havent been following along on instagram, below are some photos of her advent calendar so far.  

The most wonderful time of the year!

This little elf is starting to get into the Christmas spirit!  She enthusiastically unwraps her advent gift each night.  More on that in a post in the next few days.  She also enthusiastically tries to unwrap all the other presents under the tree as well!  I hope our friends and family don't mind ruffled bows,  soggy paper, and half opened gifts!  Surprisingly enough she doesn't bother the tree too much and hasn't attempted to use it to pull to her feet like she does with everything else in the living and dining rooms.  

This isn't her first Christmas, but it sure is special.  I do think fondly of her first christmas.  It was truly a magical week for her and probably the first time that I truly believed that everything would be ok, even with all the unknowns.  I have never been so proud of anyone in my whole life as I was of Virginia last Christmas.  She got fiesty, she let everyone know that despite her desats, failed extubations, problems with diuretics, and general troublemaking that she was ready to take charge.  In the week and a half before christmas she was extubated for good, she graduated to CPAP, she moved out of her room in the ICN, and just in time for Santa to arrive she was put on nasal canula.  It was a christmas miracle for us :)  

We will savor our Christmas with Virginia this year.  It is the most wonderful time of the year!

As many of you know we live quite close to Newtown, CT;  Friday's horrific tragedy has is quite literally hit close to home for us.  Beyond just being geographically close I find that there are so many other ways that this hits close to home.  I am devastated for our community, for our state, and for our country.  We have lost beautiful souls with bright futures, but have also lost the innocence of so many other children as well.   I hope that the days and weeks ahead bring peace and comfort to the families of Newtown  and that our country has the ability to come together to make a difference to prevent such senseless violence.

In the new year I plan to (and not just talk about doing):
Thank a teacher
Thank a first responder
Savor the small moments with Virginia, Heath and my family
Write/contact my congressman, senator and president with my feelings on sensible gun control and mental health reform.

Powerful

I have read ALOT about pregnancy complications, bedrest, limits of viability, the NICU, and preemies in the past 16 months, but this series of articles from the Tampa Bay Times has reached into my soul in a way that nothing else that I have read has.  This writer has emotionally, delicately and profoundly written about her experience that parallels much of our life from September 2011 onward.  She has provided the most accurate view into the world of pre-viable bedrest and the decisions, experiences, tragedies and triumphs of the NICU with a micropreemie.  The writers daughter had many more complications than Virginia, which were mostly a result of NEC (an infection in her bowels).  We were and are acutely aware how a single infection, a single mistake, or a single complication can spiral into a series of life or death problems in the NICU.   Huge kudos and thanks to the writer and The Tampa Bay Times for this wonderful series.  These are not short or emotionally easy reads, but I encourage you to read them.  You will see our story and the story of so many other premature babies in a new light.

part 1

part 2

part 3