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

Post NICU essentials

Im sure the things that we found helpful in those first few weeks after coming home from the NICU aren't all that different from what parents of a full term baby would need, but below are some things that were essential to us in those first few weeks.  Hopefully some of the preemie parents that find this blog find this list helpful.  

 I joke that I bought purell by the case, but this was absolutely essential.  We had one in each room of our house, one in each car, one in the drink holder of the stroller, and one in the diaper bag.

an air purifier was an absolute essential.  We have one in Virginia's room and another downstairs.  It seems to really reduce the dust and dander and provides nice white noise.  

These little portable night lights made it easy for us to check on her throughout the night or change a diaper without really waking her up.  They turn on as soon as you pick them up from their charging base. 

We did not come home with an apnea monitor because the only A&B episodes that Virginia had in the final weeks of her NICU stay were during bottle feeds.  She was still having pretty bad episodes during feeds and the docs thought that a monitor would cause us more anxiety than good and they typically only prescribe monitors for babies going home on oxygen.  With that said, I did research and consider getting an angelcare or snuza monitor but in the end decided that a simple video monitor would be enough to calm my nerves.  We spent 4 months with medical monitors and for us it was time to move on.  

The bottle warmer became essential, especially in the middle of the night when we didn't have the time to let the bottle warm in a a pitcher of warm water.

Virginia had super tiny feet.  The only socks that fit her and stayed on were the newborn socks from Baby Gap.  

We often kept a hat on V during the day.  Our favorite was this super soft kissy, kissy hat.  It was stretchy and light but warm and stayed on her head well.  

We used cloth diapers from day one of coming home from the hospital.  The only ones that fit really well for her in those first few weeks were the fuzzibunz xtra smalls

If we had to leave the house I typically just carried Virginia in her car seat carrier.  It was easier for me to control curious strangers.  This JJ Cole cover was especially helpful when it was still cold out because it provided warmth and protection from germs.  This one fits over the carrier like a shower cap so I didnt have to worry about the fit of the straps like I would have with one of the covers that looks more like a sleeping bag.  

I also "wore" Virginia alot.  Again this was to keep strangers (and their germs) away.  My favorite carrier when Virginia was small was this baby hawk mei tei carrier.  Virginia also had a "witching hour" that lasted from 6pm-11pm where she ate every hour and refused to be put down.  This carrier saved my sanity, especially on the nights that Heath was at class. 

These burpy bibs got and still get so much use.  During those early days they were essential for catching the extra dribble during bottle feeds.  

 Everyone should have at least a dozen of these prefold diapers.  We use them on the changing pad, we rolled them for a bolster during tummy time, we rolled them as a support for when Ginny had a touch of torticollis, we used them to wipe the condesation off the bottles when they came out of the warmer, and soo much more 

Most preemie parents suggest the rock n play sleeper for nighttime sleep for preemies with reflux.  Thankfully Virginia never had major reflux problems and preferred to sleep in her crib from night 3 onward, but this little sleeper was ESSENTIAL for daytime naps.  Unlike swings it reacts to the babies movement and gently rocks as the baby stirs.  Unlike bouncers it sits up high, almost exactly at chair height which made it easy to rock, replace pacis or keep her entertained while I was pumping.  It has a small footprint, folds up nearly flat and is generally awesome.  

This vibrating chair was the only way I was able to shower each day.  It is pretty basic, just plays a lullaby and vibrates but that was all Ginny needed to take a nice long snooze on demand.  

Virginia slept in fleece swaddle me wraps for several months.  They kept her warm and soothed and were super easy to put on even when deliriously tired.

The aden and anais swaddles and the carters cotton swaddle blankets were our go to blankets for getting V into a tight swaddle.  The A+A ones were especially good when she was super tiny because they could easily be folded down before swaddling.

This fold out black and white book and caterpillar toy were the only ways we could get Virginia to tolerate even a few minutes of tummy time.  

Preemie moms and dads - what other items were "must haves" for you in the NICU or when you came home?

stocking stuffer

It was just a year ago that we stuffed Virginia, who seemed so big (to us) at almost 2 months old, into her stocking with the help of Amy, her amazing night nurse.  I sewed the stocking on a whim because I knew that it would be difficult to find  a stocking that was the perfect "Ginny size." For a month it hung from her IV pole.  It marked her spot in what was otherwise a fairly anonymous room of 10 babies in their respective incubators.  It sat right next to her ventilator as she struggled to be extubated for good and it moved with her into the continuing care nursery in those amazing days around Christmas 2011 where she made so much progress.  

We have done alot of comparison photos and posts over the last year.  Virginia was so small, probably smaller than any of you can imagine and certainly smaller than I was prepared for.  Even though I had a month of bedrest and I laboriously calculated and imagined her size with each passing day, I was still shocked at her size.  We have taken all of these comparison photos for scale, as a reminder to us and as a way of showing all of you.  

Stuffing her into her stocking that night was one of my favorite nights of last winter.  We giggled as we tried to get her squirmy little body, which was just starting to get a little chunk, into that small stocking.  I immediately thought about what Christmas would be like this year.   All year I have looked forward to getting her special stocking back out. 

A Virginia Update

I haven't been doing monthly updates since Virginia's first birthday but now seems to be a good time to do one!

Virginia had an explosion of developmental milestones right after her birthday.  She now, crawls, climbs, stands (but doesnt yet get to her feet on her own) and transitions really nicely from sitting to laying down, to crawling, to her knees, etc.  It seems like everything happened at once but it was the very welcome and celebrated culmination of alot of hard work for her.

Ginny has grown to be a rockstar eater.  Who would have EVER guessed?!  Anyone that knew her in the hospital is positively shocked by this.  While we still watch for other sensory issues, it has become pretty clear that eating will not be the struggle that we thought it would be.  She exclusively eats finger foods, with an occasional yogurt, applesauce or other food off the spoon.  She is also almost entirely transitioned to cows milk and sippy cups.  She still gets a nighttime bottle so we are sure that she has a full belly before bed and to be sure that she is staying sufficiently hydrated.

We thought Virginia was showing signs of some food allergies.  She had pretty bad facial redness and a little swelling after eatting potatoes and eggplant.  Surprisingly enough she tested clear for all food allergies last week!  The doctor said that her sensitive skin must have reacted topically but not to be concerned.  Another specialist to cross of our list.   Virginia has now been discharged from allergy, cardiology, and retinology.  She is still followed by opthamology, nephrology, and Occupational Therapy/ Physical therapy. The list of specialists and therapists always seems to ebb and flow but we are very happy to be trimming the list for the time being.

Ginny did have a nephrology appointment earlier this week.  I think we (us and her doctors) went in the appointment hoping that she would be discharged from that specialty too, but that was not the case.  They were very pleased with her weight gain and general development in the 8 months since they have seen her.    Unfortunately they were not as impressed with her kidneys.  Her nephrocalcinosis (kidney stones) have resolved on her left side, but have not resolved on the right.  More troubling is that they seem to be migrating downward and they are quite large.  She also has a bit of hydronephrosis (swelling of the kidney) and some slightly abnormal function based on her blood and urine cultures.  We are still awaiting a few more tests before a new treatment plan is decided on, but it will likely be a wait and watch approach for a few more months.

Ginny now:
weighs 18lbs 12oz
fits mostly in 6-12 month clothes but things are starting to look a little short
Is probably ready to have a real big girl bath since she climbs out of the inflatable froggy tub over and over during bath time.
loves to play in front of the mirror
follows me into the kitchen every.single.time. I go in there
is SO ticklish
eats EVERYTHING off of the floor.  I could vacuum all.day.long. and she would still find things to put into her mouth.  This is bad bad bad for a mama that is already anxious about cold/flu season.

Bedrest Essentials

Last week I wrote about things that were helpful to us during Virginia's NICU stay.  Today Ill write about the things that saved my sanity during bedrest.  Ill eventually get to writing about post NICU essentials, pumping for a preemie essentials, PT/OT essentials etc.  Its easy to find lists of "what to register for" or "what to pack in your hospital bag" or "newborn essentials" but I haven't come across many recommendation lists that are applicable to bedrest, NICU stays, or life after NICU.  Hopefully someone finds this series helpful.

Not many people anticipate bedrest and can prepare.  If you have a friend or a family member that is suddenly faced with bedrest and you want to help, here are some of the things that helped me through my month of varying degrees of bedrest (home bedrest, hospital bedrest, strict hospital bedrest, and hell-ish strict hospital bedrest.)

Communication & Visitors-  the number 1 thing that helped me were the calls, emails, notes, skype dates, text messages, & VISITS from friends and family.  Many of my friends and family members also knew the times and days that Heath wouldn't be at the hospital with me and were especially conscious to call, skype, or visit with me at those times.  Only positive attitudes were allowed and my heart swelled with so much hope and love from all the support.

Entertainment- I read, watched TV, browsed the internet and did work but I also appreciated the all the books and magazines that I received.  Upcycled & random magazines were best because that ensured that I didn't receive 4 copies of the current issue of US weekly :) I very quickly got up to speed with pop culture!

Food- The food at YNHH was really pretty good.  I ordered the same rotation of items each day even though there was a 4 page menu of options.  What can I say, I was living on routine and I was prepared for a long stay and wanted to pace myself.  The fruit selection on the hospital menu was pretty blah so I really appreciated the edible arrangement that a group of friends sent.

Water Bottle- My camelback water bottle was a lifesaver because I could drink from it while laying down.  I had to drink several bottles of water each day to convince the docs from keeping me off of IV fluids and the camelback bottle made it much easier to do so.  

Manicure set - my nails grew quickly when I was pregnant and because I was laying in bed all day having a manicure set became a welcome activity.  I have never had such great nails as that month on bedrest. 

Nice Toiletries-  When you are only allowed to have a 2 minute shower every 3 days or (gasp) only a sponge bath, some nice toiletries (leftover L'Occitane samples from a hotel stay were my choice) goes a looooooong way.  Hospital supplied toiletries include one bottle that is shampoo/conditioner/body wash/deodorant in one and smells like, well, a hospital.  

lululemon headband- see above for a description of my shower privileges.  My hair looked like hell 97% of the time and these headbands were able to tame the mess without giving me a headache.

The hospital is SO dry and chapstick is a must.  This Nivea chapstick was my favorite.

My Pi Phi friends may be the only ones to appreciate this.  I got a special "wish cookie" while in the hospital and not only was it delicious but made me so happy.  I twirled my finger under that cookie and made alot of wishes for the 36 or so hours that the cookie lasted :)

Games- I probably had 20-ish words with friends games going at any one time.  It was surprisingly fun and seriously helped pass the time.

Clothes and Linens- Hospital pillows are similar to sleeping with a gallon ziploc bag filled with packing peanuts.  My pillow from home (with a non-white pillowcase) was an absolute essential.  I chose to wear hospital gowns and use the hospital towels & linens.  It would have been really nice to be in my own clothes and to have a towel that was larger than a receiving blanket but I didn't want to put anymore responsibility on Heath by burdening him with laundry.   If  you know someone on bedrest, helping with household chores such as laundry, walking the dog, helping with other children, or running an errand  is so helpful.