snuggles

I think most parents of preemies can agree that the day they begin kangaroo care is one of the best days of their NICU stay.  For many parents, including us, it marks the day that their baby is finally stable after some scary weeks.  Our whole days were planned around kangaroo time. The good days were made great by snuggling skin to skin and the bad days were made worse when Virginia was not stable enough to come out of her isollette.

I have always either nursed or rocked Virginia to sleep at night but lately she seems to want to play more than rock.  I feel like our snuggling time is changing or ending.  It makes me thankful for those "extra" days that I got to snuggle her during kangaroo time in the NICU.  I would have rather had her inside of me but kangarooing her tiny soul was such an amazing treat.

spring fever

The holidays are past us, yet spring still seems so far away.  We were at the pediatrician today for Virginia's 15 month appointment. They said that they think the worst of this year's rough rsv/flu season has peaked but is no where near over :(  We sure are ready for it to be over!

Spring seems far away much in the way that at this time last year Virginia's discharge seemed so far away.  The light at the end of the tunnel is awfully dim.  I'll quit complaining now and instead make a bucket list of things to look forward to.

Post RSV season bucket list:

Take the metro north to nyc for the day

Go to the children's museum

Go to the aquarium

Let Ginny sit in the grocery cart!

Let Ginny sit in the grocery cart at Stew Leonards!!!

Go to the library

Enroll Virginia in a music or swim class

Go out to brunch

Go to church as a family again

Go to Target

Go to Chips for pancakes

Let Virginia explore the toy store

Host a playdate with all of our baby friends

Virginia is planning her escape!

Ginny was 19lbs 4oz and 29 inches long at her appointment.  This puts her at around the 5th percentile for 15 months old!  At least she is now on the charts!   Her head is at the 50th percentile!  Can't deny that she is a Kent!

why we walk

http://www.marchforbabies.org/virginiakkent  We now have 21 Walkers and have raised $355!   Please consider donating to our team or walking with us in Fairfield CT (May 5)  or Saratoga NY (April 28) or joining Team Go Ginny Go and walk near where you live.  

Heath and I are honored to be more and more involved with the March of Dimes here in Connecticut.  Just in the past few weeks we have had dinner with the National Ambassador Family and March of Dimes National Staff and we shared our story over lunch with the Volunteer Council from General Electric.  We are excited to be bringing our friends and family together for our Family Team , Go Ginny Go, as well as developing a GE Corporate team to walk at the Fairfield March for Babies.  We have a lot of work to do but it is for a cause that we are passionate about.

We are passionate about working with the March of Dimes because their funding and research has significantly contributed to the advancement of care of premature babies like Virginia, but also because of the support that we received from the March of Dimes during our NICU stay and after.

We are also passionate because of the other families that we know.  We walk for the precious babies that have gone to heaven, for babies that never met their families, for babies that fought hard, for babies that are still in the hospital, for babies that are still struggling, for babies that have overcome so much and for families that will never be the same.  We walk for Virginia, Eryn, Biden, Isabella, Logan, Maxim, Hope, Patrick, Faith, Eva, Dylan, Holden, Baby Patel, and Baby O.  Each of these babies have stories of love, heartache, and strength.

We also walk for families like these:

http://www.huffingtonpost.com/rebecca-campbell/art-and-grief_b_2481232.html?utm_hp_ref=fb&src=sp&comm_ref=false  and http://www.youtube.com/watch?v=n3x7vhO4Wdw

Join us... together we can all make a difference.

15 months old

Virginia is 15 months old today.   I have no idea when toddlerhood starts for preemies or full term babies for that matter, but she seems to be on the cusp.  

She is growing physically, intellectually and emotionally and is full of sass.  

She is a creature of routine and a lover of making a mess for the sake of making a mess.  

She has tantrums and giggle spells within minutes of each other.  

She crawls everywhere, climbs on everything, and cruises along furniture but seems no where near ready to be standing independently or walking.  She has proven me wrong time and time again though :)

She weighs around 19.5 pounds and has grown out of every pair of 6-12 month pants.  

a letter to doctors, nurses, sonographers, anesthesiologists, therapists, etc

I get it, this is your job.  At the end of the day or shift you go home and you have your own life to live.  I have a job that I care about immensely but at the end of the day it is just my job.  The difference is that the people I come into contact with at my job will most likely not remember my name or face or the words that come out of my mouth years from now.

You however, have a different job.  Your job inherently becomes intertwined with the best, worst, most powerful and/or most horrific day of peoples lives.  Sure this is not always the case, and I'm sure there are plenty of "boring" days in clinic or in certain specialties.  However, even those boring days are often substantial to your patients.  The way you treat that anxious patient that comes in for their first physical, teeth cleaning or bloodwork in years or maybe decades can dictate whether they take back proactive control of their health.  The way that you speak to a teenager can influence them for years to come.  The way that you look your patients in the eye (or not) can solidify (or destroy) their comfort in your care.

I don't envy your position and I admire the way most of you handle this difficult part of your jobs.  I assume that there are many coping mechanisms for handling this part of patient care but please always keep at the forefront that everyone has a story and your ordinary day is very often  your patients extraordinary day (good or bad).  For those patients that are having an extraordinary day (good or bad), they will never forget your name, face, tone or words.

For me, I will never forget the MFM who we saw at our lowest of lows.  I will never forget her name, her face, the room, or anything else about the one hour exam and discussion.  Without looking away from the ultrasound screen and without any compassion in her voice she told us the worst news of our lives.  Her job was to relay the facts (MFMs often have to relay some horrible facts), it was not her job to be our cheerleader. Unfortunately her tone, demeanor and failure to understand her audience made an extraordinarily bad day for us transform into a day that dark places are made of.

I will never forget the way that my OB slapped us with reality.  He had the advantage of a relationship that was already established; a doctor - patient relationship that had trust.  However he knew the critical moment when he needed to be "real" with us.  With a mixture of compassion, hard facts, tough statistics, scary scenarios, and gentleness he fairly accurately described how the final days of my pregnancy would play out.  His words set the tone for how we handled our journey from that day on ... with a healthy mix of reality and hope.

I will never forget the calmness of the face of our nurse and neonatologist in the NICU on the day of delivery.  I was in a hazy state and don't remember much of what was said,  but I know that they were both simultaneously serious and calm.  Again this set the tone for a healthy relationship of many ups and downs in the subsequent days and months.

There are countless others that I will never forget.  I often feel like I can't step foot in that hospital without seeing someone that had that impact.  Most of these people I only encountered once or twice.  They certainly don't remember me, but that is why their job (and your job) is so important, difficult, and different from my job.  Please know that many patients you see each day hang on your words, read into your demeanor, and are experiencing some of their best or worst days.  Thank you for all you do.

more teeth

Virginia certainly isn't on the fast track for getting teeth but slowly she is getting enough to keep up with her adventurous palate.  She always seems to want a bite of our sandwich or banana or ice cream cone and without having those front arsenal of teeth it gets messy.

We were hitting the lows of bottle feeding at this time last year and often wondered whether eating would ever be something that Virginia would enjoy or even do.  She clearly had something to prove to us.  

phone photos

I need to get out my "big" camera more often, but the iphone is just so easy to snap quick photos.  Here are some from the past 10 days.  

PT & OT Essentials in our first year

Virginia started PT and OT in the hospital just about a year ago.  We were primarily focused on bottle feeding techniques at the time.  I wont talk about bottles here, because that journey warrants a whole post of its own ;) The other thing that we worked with PT on at the time was using infant massage as a way of helping Virginia.  Virginia seemed to have some emerging sensory issues and was always very sensitive to light, sound and touch.  I really believe that the infant massage that the PT taught me was helpful for Virginia.


This Lotion was our favorite to use for massage and general post bath moisturizing.

Upon coming home from the hospital we were immediately working on play techniques to help with her gross and fine motor development.  Below are our favorite items in chronological order from when we used them.

These links and this toy were good for grasping and visual tracking.

This mirror was used for tummy time very early on and still is a favorite today. It is big but not too big, stands up easily, shatterproof, easy to clean, and doesnt have that "fun house" effect that many infant mirrors have.

My mother is a pediatric PT and I have to say I was initially skeptical when she showed up at our house with the wingbo , but this prone swing really transformed tummy time for Virginia.  She lasted twice as long in the wingbo as opposed to tummy time on the  floor.  We used links, the stand up mirror, and suction cup toys with it to keep her entertained.  It also can be used off of the stand like a more traditional swing, although we haven't tried that yet.

We used this weighted stability ball  as an alternative for tummy time and eventually for core exercises.  The sand weight at the bottom gives it more support and control.

Typically I fall in favor of simple toys - board books, wooden blocks, stacking cups, small musical instruments.  Virginia loves these types of toys, but needed something a bit more motivating (lights and sounds) for some of the activities that she hated found more challenging ;)  These were the real motivators for her: musical garden , piano , and bongo drums .

As we struggled to find a sippy cup that worked the OT suggested using a honey bear container to teach her to drink from a straw.  Sure enough, a few days of working with the honey bear container and she was able to easily transition to a zoli cup.  I've linked to an actual honey bear training cup but we just emptied and sanitized a honey container that we had in the house and used a dunkin donuts straw.

We have a few new items that I anticipate that will be helpful with our  PT & OT in the coming year.

bilibo

pewi ybike

Any items or toys that you found helpful?  Any suggestions for us for the upcoming year?

From the Archives...

I was cleaning out my spam folder and found an old email from my dad (sorry dad, your emails aren't spam).  In it was a photo of Virginia from November 14, 2011 that I have never seen before today.  I believe this was just a week or so after she opened her eyes for the first time and probably the first time my Dad saw her beautiful eyes.  I still can't believe she was ever this small.

She also looks crazy red nice and pink (probably from a recent blood/platelet transfusion) and it looks like she had recently had her tapes replaced since that darn ET tube clip is so far in her mouth :(   Virginia was coming out of a pretty rough few weeks and looks pretty darn amazing though!

life in the grey zone

We are in the midst of cold, flu and RSV season and one of the most challenging things for us has been navigating the grey zone that we seem to fall in.  Last year Virginia came home towards the end of the season and we were obviously SUPER cautious and extra vigilant with sanitizing, hand washing, limiting visitors and until early May we only left the house for doctor appointments.  This year she is much bigger and stronger, doesn't qualify for synagis, and has been off oxygen and diuretics for nearly a year.  No one has given us specific instructions for this cold & flu season, as we seem to fall in that grey zone where "better safe than sorry" is said more than "don't even think about it."

Virginia still has never been in a grocery cart, has never touched a community bin of toys, has never been passed around at a large family function, has never had full freedom to play with her young cousins and has never visited the local aquarium, children's museum or zoo.  These are all things that are off-limits for us this winter but it is the other things, the less risky things that we struggle with as we sit in the grey zone of a former micro preemie.   We struggled with whether to travel to Maryland for the holidays.  We were careful to constantly be sanitizing and asking others to wash their hands, but it was risky to  be around so many people.  A risk that left my stomach in a pit as the holidays wrapped up.  I started to second guess our decision as I heard of RSV and flu outbreaks and as we learned of babies that we know being admitted to the hospital for RSV.  There was no taking back our decision and thankfully Virginia remained healthy, but it was a risk.

We take other risks too.  I occasionally take Virginia out for lunch, we occasionally go to small gatherings (after ensuring that everyone is healthy), and we occasionally host a playdate (again after ensuring everyone is healthy).  None of these decisions are taken lightly and I do often wonder if it would be easier to be in super lockdown than navigating this grey zone.  I doubt it....

By anyone standards Virginia appears to be a very healthy and active baby emerging into toddlerhood.  What we do know though is less than a year ago her lungs were in poor condition.  Some people use the example of trees. A full term baby's lungs are like a big oak tree in full summer bloom while a a preemie's lungs are like that same oak in late fall, not nearly as full of the important healthy bronchioles that help babies breath through a respiratory infection.

What I know is that we are following our gut, we are doing what we feel is best for our family, and we are reserving our right to make decisions and change them at any given moment for any reason.  This stuff is hard, as many things in parenting seem to be.  I'm not wishing these winter days away but I sure will be glad to see spring arrive and we already have a bucket list of things that I can't wait to do with Virginia outside the confines of our little house.

our little virginia - year one

I have finally finished and received the finished book!  Virginia's blog started as a way of keeping our friends and family informed in those chaotic and scary first days and weeks and then emerged into a baby book of sorts, a place for us to heal, and a place for us to share our journey and connect with others families.  This book is 137 pages of laughs, tears, anger, thankfulness, and beauty that I will always treasure and I hope Virginia will too.

For any fellow bloggers, I used blurb to create this book and am so pleased with the outcome.  You can auto export from any of the "big" blogging platforms and simply edit your book from there.

routine

The hustle of the holidays were a welcome distraction to our cabin fever quiet days at home but I think we are all glad to get back to our routine.  Virginia's morning routine started a bit early this morning so we quietly rocked and napped together for an extra half hour or so while the sun rose.  It was the most perfect morning of quietness, warmth, and snuggles until she woke up and realized that there was a whole clean room of picked up toys and vacuumed floors to destroy  explore :)

She treated me to the biggest smile and giggle right before I left for work

ohh what a year

2012 goes down as the best year yet for our little family.  As the calendar turned from 2011 to 2012 there was so much uncertainty, so much stress, and we were still living day to day.  I know that I didn't have the time, strength, or energy to think about what 2012 may hold but i had so much hope for Virginia and for Heath and I.  As we make the turn into 2013 there are still so many uncertainties but the picture is clearer than ever and our hearts are fuller than ever.  What we have experienced/ are experiencing is life,  life as we know it,  life on full throttle, and a life that we wouldn't ever change.

To my husband- Thank you for a year of strength, a year of hope, and a year full of love.  This year you were able to see through my words and into my heart and knew just how to protect it.   Im thankful that you get how this journey has changed me.

2012 in photo review - photos of the happiest days

January 2012

February 2012

March 2012

April 2012

May 2012

June 2012

 July 2012

 August 2012

September 2012

October 2012

November 2012

December 2012