Tuesday, January 21, 2014

advice for myself

This year I am serving as the family teams chairperson for the Connecticut March of Dimes.  In addition to helping new and experienced family teams with their team development and fundraising, we have been also focusing on the heart of the mission.  As a group we have found healing and gratification in giving back, mentoring and inspiring those that are the beginning of their journeys.  Our latest project is a video that comprises dozens of parents sharing the advice that they would give themselves on the first day of their journey.  Naturally I quickly thought of a few inspirational words, wrote them on paper and took a photo.  Those words are exactly what I would tell myself on the first day of our NICU journey and are a great contribution to the video, but what I realized is that our journey started weeks before our NICU journey.  

A pregnancy gone wrong journey.  A journey that lead to our NICU journey. It started on September 21st  2011 at my 20 week OB appointment.   The greatest amount of guilt that I still hold is within the 32 days between that appointment and the birth of my beautiful little Virginia.  Pregnancy joy and dreams were replaced with complete fear in those days.  
I can easily recall the details of those 32 days.  
The braxton hicks contractions that I mistakenly thought was the baby rolling while at the gym doing my regular workout.  
The nervous shakes and sweaty palms that I got when the ultrasound tech went to get the doctor after checking my cervix.
The utter devastation and panic that I felt while laying on the floor (naturally, rather than sitting in the chair) of the admitting office while waiting for my hospital room at 21.5 weeks pregnant.  I feared the baby would would be delivered right there on that blue carpet .    
The convulsions of fear that took over my body as I watched the flurry of activity surround me late in the night at the cusp of 24 weeks when they moved me down to labor and delivery for "immanent" delivery.  

It is all so clear to me but blurry at the same time but 28 months later I am telling myself:
"trust your gut" because doctors and statistics are not always right.
"fight for what you believe in" because I still regret not pushing harder for someone to attempt a cerclage.  The what-ifs are hard to get over.  
"stop googling" because nothing that you find on the internet will bring you the peace and hope that you can only find in your heart.  
and lastly...
"It's not your fault" because its not.  Its your body's fault but not your fault.  28 months later and I am still coming to terms with the difference.  

Monday, January 13, 2014


It seems as though that Virginia has always thrown us a curveball.  That whole never trust a preemie thing?  Totally applies to this kid!

While she was in the NICU I worried about an endless list of complications.  I googled statistics.  I asked lots  (and lots and lots) of questions.  I laboriously tracked her vent settings.  I became obsessed with her (in)ability to take a bottle.  I lost it when I found out that not only we were enrolled in cardiology clinic follow-up because of her PDA but also for a pulmonary fistula and pumonary hypertension.

The one diagnosis that I really never worried about - her kidney stones.  Those were for adults, or so I thought.  Her kidney function labs were always a little weird and she was never able to get on an acceptable long term diuretic, so instead she had lots and lots of lasix which in turn contributed to the formation of the kidney stones.

2 years later and we are still tracking those pesky and surprisingly large kidney stones.  The largest stone is much too big to pass, in fact it is too large for a full grown adult to even pass.  More concerning is that it is large enough that it could block the blood supply to the kidney if it migrated towards the artery.  Her typically stable urine analysis was unfortunately worse than normal at our latest appointment as well.  They are not sure what is causing this latest change, but we will go in for additional blood work and another urine sample later this week.  I'm not sure where it is all headed, medications and surgery are both possibilities, but it doesn't look like we will be discharged from this specialty any time soon.  We most likely will be adding urology to our specialist list as well.

Thankfully Virginia does not appear to be in any pain and we had plenty of good news at her appointment as well.  She is back on the charts for her weight at 22.5 lbs (up 2 pounds in 2.5 months) and is up to 33 inches.  She also dazzled all the doctors with her charm.

Wednesday, January 8, 2014

holiday photos and Virginia-isms

I didn't take nearly as many photos during  our big holiday roadtrip as I would have liked due to the plague cold and sinus infection that I was battling.  Here are a few photos, most of which were taken by our very talented friend, Carolyn.

Aunt Karen and tier 2 & 3 girls on Christmas Eve

Moma and Virginia on Christmas Eve

McKenna, BobBob & Ginny on Christmas Eve

Virginia, McKenna & Clare on Christmas Eve

Tearing into gifts on Christmas Morning

Rudolph Pancakes!

Ginny loved visiting the trains at Carolyn & Carl's house!  choo choo!

Lobsters on New Years Day!

And finally some new Virginia-ism's

"Stop it Mommy" - said many times a day.... lovely
"A,B, C, D, E, F, G..mumbling P, Q, R, S, T, U,V,W,X, Y, Z"
"I go running"
"I Jump"
"Clap Mommy" "Clap Dada" - in response to anything she does or in tune to music on the radio
"Pony... Bow... Ginny Hair"
"Moma... Dada... Moma... Dada... Pippi...Papa... Nino... Mama... Moma... BobBob... Pippi.. Mama" - over and over while wanting to get out of her crib at bedtime.  

Friday, January 3, 2014

isolation reflections

Winter isolation is the worst.   Us preemie parents generally just dread the long, slow and lonely days that are essential to protecting our babies whose fragile lungs and systems simply cannot handle the germs and viruses that are EVERYWHERE from October to April.  

Our first winter was fine.  Most of it was spent in the NICU.  Heath and I did take precautions to reduce our personal exposure, but generally we were too busy to be in places where we would be exposed anyway.  Virginia came home in February and we hibernated until May.  It was perfect actually and just what we needed.  Long days of snuggling my baby in the peace and privacy of my own home was simply perfect.  I had no desire to go anywhere anyway.  

Our second winter was  a whole different story.  We had an active baby.  We had met local friends.  We had to take a leave of absence from our weekly playgroup.  We were generally miserable.  I longed for the days where I wouldn't have to worry so much.  I was desperately jealous of my friends who were able to bring their baby to the grocery store or out to a family dinner.  I didn't even let myself think about the fun we were missing out on by not being able to go to a music class or a swim lesson series.   Virginia didn't notice any of this, but it was quite hard on us.

For those of you in the thick of it, I'm sorry.  It just plain stinks.  Feel free to throw yourselves a pity party with lots of confetti and w(h)ine.  It is well deserved.  But also don't wish this time away.  

This year we have had very few restrictions.  I still sanitize like crazy in public places and avoid certain childrens play areas, but generally we have been carrying on like any other family with a young toddler.   Restaurants, church, museums, stores, and playdates... ohh my!  Its been really great, but also really busy.   

Our new found winter freedom also meant that we could travel for the holidays.  We embarked on an 11 day holiday roadtrip that spanned half of the east coast.  We saw family& friends, went to the movies, went shopping, went on a date, went to 5 holiday celebrations and Virginia was spoiled with countless amounts of generous gifts.  On the downside we all got sick, had one urgent care visit (not for V thank goodness), listened to some endless whining in the car (from all of us), and spent the car rides passing a circuit of toys back to V that could make up a small aisle in toys r us.  We came home completely exhausted.  Happy, thankful, and grateful but completely exhausted.    

The truth is that there are moments where I wish for isolation.  I long for the simplicity of our little family and our quiet days.  I don't mean that I wish to relive it and certainly don't want to downplay the seriousness why we all impose the restrictions, but now that we are on the other side I can see the silver linings of those long, cold and lonely months.  There are moments where I miss the simplicity of isolation simply because I wouldn't be in challenging parenting scenarios like I was in at Target tonight where Virginia repeatedly stood up in the front seat of the cart screaming and doing her best Titanic impersonation.  Mostly though I am thankful for those long, slow days with few distractions.  In those days we read book after book after book, we snuggled longer and I was far more patient.  I don't need isolation to be able to do those things but I am thankful that isolation taught me to do those things.  I just need to slow down and do them now. 

Virginia playing with her cousins... something that was sadly off limits last winter.