GO GINNY GO

March for Babies season has officially begun.  Due to Hurricane Sandy damage in the beach area of Fairfield the date has been changed for the walk.  The 2013 walk will now be held on May 5, 2013.  We are already involved with planning, team development, and local publicity for this event but we are hoping to surpass our goals for Team Go Ginny Go as well.  Our goal is to raise over $7,500 and have at least 25 walkers here in Fairfield with us.

Please join our team.  There is no better way to celebrate Ginny's success than to raise awareness and funding to help prevent premature births.  We promise to have cool t-shirts, fun people and the toughest baby I know leading the pack.

Sign up at http://www.marchforbabies.org/team/t1913662 .  Do it now, help us get to 25 walkers before the end of the year.  

Prematurity Awareness Month Finale

Today is the last day of Prematurity Awareness Month.  Thank you all for listening, supporting and spreading this message that is so important to all of us.

The infographics in this post came from another preemie Mom who has an amazing blog that chronicles their journey, but also provides an immense amount of support and information to the Preemie community.  Many Thanks to Tatum at aintnorollercoaster.com .

I hope none of you will know another family going through the trials of a NICU journey, but with 1 in 8 babies being born prematurely the odds are that you will.  Below are some wonderful ways that you can help.  Ill add some additional ones below as well.  

We were lucky that we had many people that reached out to us in the ways that Tatum listed above.  Some additional things that we found helpful and loved were:

• Personalize: Anything personalized with Virginia's name made our home away from home for 4 months feel better.  We received blankets, preemie hats, signs, and crosses.  She was the only "Virginia" in the NICU so it meant that her things did not get misplaced as well.  We also loved personalized items because her official name in the NICU was "baby girl kent" and I liked when the doctors and nurses readily recognized and knew her real name.  A bit of a rant: I know it was simply hospital procedure (because the babies are admitted to the unit before they have a birth certificate) but I HATED that she was refered to (mostly on paperwork, during rounds, etc)  as baby girl kent.  It felt so institutional and she was a real live human and had a name afterall!

• Gift Cards for gas or parking:  We had many people who very generously gave us gift cards for gas and paid for our monthly parking at the hospital.  Many families live a significant distance from the hospital and the financial burden of the travel can be overwhelming.  We were lucky that our trip was "only" 55 miles round trip, but we often made multiple trips per day.  

• Visitors:  Not everyone feels this way but we appreciated visitors.  We obviously did not have time to cook for or entertain anyone, but we really appreciated when people would meet us out for a lunch or dinner, stop by our house with breakfast or sat with us in the waiting room in the hospital.  

Much of what was mentioned was also a huge help to us while I was on bedrest.  Ill dedicate a post next week to helpful ways to support a friend on bedrest at home or on hospital bedrest.  

Prematurity Awareness Month- Learning to Celebrate

Heath and I learned early on that celebrating the positives, the achievements, and the victories was going to be our way to cope.  As NICU parents we were celebrating many things that parents often take for granted.

We celebrated making it to 24 weeks with YNHH clam chowder

We celebrated Virginia's PDA closing by kangarooing with her for the first time

We celebrated the first day that she got to wear clothes

 We REALLY celebrated when she came off the ventilator for good.

We celebrated the day that she went into a "big girl" crib, which meant that we could pick her up and snuggle her any time we wanted.  

We celebrated when she took her first breaths completely on her own.

We celebrated the first whole bottle of milk that she took.

We celebrated the day we took her home from the hospital 

We celebrate each milestone along the way, big and small, delayed or on time.  Most parents of premature babies know the fears of potentially never seeing each of these milestones, so I think we all celebrate to honor our warriors.  All babies develop and reach milestones at different rates, but this is especially true for premature babies.  There are many preemies that will "catch up" to their actual age peers very quickly, others will take the 2 years that many physicians allocate for preemies to "catch up" and others will never "catch up."  

We have been doing ALOT of celebrating lately.  Virginia has had an absolute explosion of milestones lately and we are just so so proud of her.  

She now crawls everywhere and is climbing on everything!   She is fast too!

She is babbling all the time.  She says bye bye on occasion and has got the "no" head shake down pat :-/

She mastered the sippy cup this week and we are down to one bottle a day!  

Yes Virginia, there is a Santa Claus

Santa visited the Kent house on Sunday to meet Virginia.  She was a bit apprehensive at first but enjoyed his visit.  She told Santa that all she wants for christmas is her 2 front teeth, which we suspect are on their way in.  

Thankful

Its hard to express just how thankful we are to be home and healthy this Thanksgiving.   We are also thankful to each of you who have supported us, loved us and prayed for us.  We are so blessed.

While we have so much to be thankful for we are also thinking of the many families that are struggling this holiday season.  We are thinking of those families that are spending Thanksgiving away from their loved ones, in the hospital, and those struggling to find joy this holiday season.

We are also thankful to all the people who are away from their families because they are serving our community.  Thank you to all the doctors, nurses, firemen, police officers, soldiers, and others that serve.  We were in the hospital for many many holidays last year and while it was difficult, some of our best memories from our hospital stay were those holidays.  The doctors, nurses and staff were so warm, thoughtful and caring despite the fact that they were away from their own families.

We always were surprised with a card, sign or gift "from" Virginia on holidays.  This is the one of the  ones that Virginia's nurses helped her with last Thanksgiving.  I will be recreating this same craft with her later today.  Ill update the post with new pictures.

World Prematurity Day

Saturday was world prematurity day,  Many, many thanks to all of you who wore purple and who took the time to tell others about prematurity.  It is a very real problem worldwide and in the United States.

Worldwide Crisis:
In other parts of the world far too many babies that are born prematurely die because of the lack of adequate medical care.  Even without the most advanced medical techniques, like the ones that saved Virginia, many of these babies can be saved with simple education and care.  Many babies die of jaundice, diarrhea, dehydration and simply because they cannot maintain their temperature.  Simple medications, basic warming isolettes, phototherapy lights, and even education about kangaroo care could save many of these babies.

US Crisis:
In the last 20-30 years in the United States there has been tremendous improvement in the outcomes for premature babies, especially among the smallest and sickest babies.  With that said, the crisis of prematurity has gotten more and more troubling.  The rate of premature birth in the United States is among the highest in industrialized nations.  There are many reasons for this, but none of them should be excuses not to push for more awareness, funding and education to improve these statistics.   It is important to note that most of the time a premature birth is of no fault of the mother or family.  I still struggle with guilt, but I know that I did everything I could have done to have a healthy full term baby. I fought hard for every hour of my pregnancy and would have done ANYTHING to spare Virginia of all she went through while in the NICU and all she continues to go through.

Below is a photo of Virginia from last year on world prematurity day and then again this year.  She is pictured with the same beanie baby lamb in both photos.

crawling

About an hour after I posted yesterdays blog Virginia started crawling :)