March for Babies - Round One

We traveled up to Saratoga Springs NY this weekend to join some of our friends and family for the March for Babies walk up there on Sunday.  It was an absolutely gorgeous and perfect day for the walk.  Virginia was surrounded by some of her biggest supporters and our hearts could have burst from all the love for Ginny.

While we weren't on our "home turf" with all of the March of Dimes people we know and familiar faces in fellow NICU graduates, we were so moved and uplifted by all of the stories of survival and loss around us.  It was an important reminder of why we walk and fundraise for such an important cause.  There is a camaraderie among those affected by the mission of the March of Dimes like I have never seen before and it is just in the air at March for Babies events.

Thank you to all of our friends and family that joined us this past weekend!  We are looking forward to our "home" walk this coming sunday.  We have surpassed our 2013 goal and are well on our way to $10,000 and over 30 walkers for this year!!!  wow.

Virginia with some of her favorite Aunties!  These ladies drove many hours during a freak October snowstorm to meet her and support us when she was only 7 days old.  EVERYONE should have amazing friends like this.  

Ginny & Friends

Ginny & The Kent Family

progress

Virginia is starting to put the pieces together.  She still has a ways to go until she is walking, but progress is welcome here!   We have fallen into full on bribe-fest around here to get her to take steps .... she has us wrapped around her finger and knows it.

Her new found skills are very timely!  We are headed to Saratoga this weekend for our first of two March for Babies events.  Our remarkable team has raised nearly $8000 so far!  We continue to be in awe and so thankful for all of the support!

18 months

Virginia is 18 months old today!  

Ill get her height and weight on Friday at her appointment but I think she is about 30" long and weighs around 20.5 pounds. 

She is still reluctantly taking steps.  True walking is still a little ways off.  

Despite her reluctance to be on 2 feet, she is a total daredevil when it comes to climbing.  

She is still a great eater and will usually eat anything we put in front of her.  This weekend that included sirachi rice one day and an everything bagel another day.  crazy girl!

She has a few words including: dog, dada, hello, up, and uh-oh and knows a few signs as well.

She is super lovable.  I live for our morning snuggles and her sweet kisses.  

She is testing us all the time and is definitely a rule-breaker.  Virginia has always been this way and we know this is partly what kept her alive.  We are embracing it and know that she will do great things with that fire inside of her.  

The further we get in this journey the more I am learning about healing, parenting and living.  

I am learning that the whole "catch up by 2" thing is so bogus.  This deserves a whole separate post which I know many other bloggers have covered as well.  I think it is sorta like writing your birth story, as coming to terms with there being absolutely nothing magical about age 2 is part of the healing process

I am learning that there is not an expiration date on anxiety.  I thought nothing of going for my post-op appointment at my OB's office this morning until I got there and just felt a wave of uneasiness.  After I left I realized I hadn't been to that particular office since 2 weeks after Virginia's birth.

I am learning that all the challenges of parenting a preemie become more and more unique as time goes on.  There are certainly threads that bind us all as parents of preemies, but these journeys are all so different.  

I am learning with each day there is greater joy, more love, bigger challenges, louder whining and of course many more laughs! 

playground

Another busy post-rsv season weekend for us!  The weekend included a birthday party, church, errands, and grocery cart fun.  We finished off the weekend with a trip to the park.  In between attempting to eat the woodchips, Ginny especially enjoyed the swings, slide, and bouncy bridge.  We even ran into a few friends... it really was a perfect way to end the weekend.

We have a busy week ahead.  I have my last post-op appointment for the TAC tomorrow.  Virginia has a Speech EI evaluation on Wednesday and her 18 month pediatrician appointment on Friday.  Finally, Friday night we will head up to Saratoga for the weekend to attend the Saratoga March for Babies.  I'm proud to say that we are getting very close to our 2013 goal of $7500!

Maryland & DC trip photos

We had a jam packed weekend in Maryland and DC which included a bridal shower for my cousin, a wedding for very good family friends, lots of fun with Ginny's cousins, some sightseeing in DC, Virginia's first stay in a hotel, and some time lobbying on Capitol Hill.  Lots and lots of photos below! 

Cousin McKenna was bribing Virginia to walk by offering her nibbles of her cake.  Virginia willingly took 7 or 8 steps for her which is a new record :) 

Kara, Ginny, Aunt Karen & Mama

Uncle Mike!

blue eyed girls 

 big hotel bed!  

 Waiting for the air & space museum to open

 We had no idea that we would run into Eddie & Roseanne in DC. What a small world!

 Virginia was very excited about the Nasa exhibit.

 Asleep for the Washington Monument and the few cherry blossoms that were left.  

grocery shopping

Virginia sat in the grocery cart for the first time last week!  Have I mentioned how happy we are that RSV season is over?!  We did have a little scare when our Babysitter's daughter, who spends all day with Virginia, came down with croup last week.  Surprisingly enough Virginia did not get sick. Either we are very lucky or Virginia's compromised immune system is like "the little engine that could. "

I have to say our grocery trips are forever changed.  This has nothing to do with Virginia now being able to come along and sit in the cart, but everything to do with all that I am learning while here in DC with "Supermoms against Superbugs."   I came to Washington knowing how important this issue is to preemies as well as the general public, but I am learning so much about food animal production and the frightening effects of antibiotic abuse.  In the meantime I will be making even more changes in the food that is consumed in our house and will be asking more questions when we are out to eat at restaurants (a new favorite for Virginia is her post-RSV season life).

Off to bed... taking on Capitol Hill in the morning.

btw.. we had a great extended weekend in DC.  Ill be sharing lots of photos this week.

Save Antibiotics - Save Preemies

October 29th 2011 - Most people remember halloween weekend 2011 in the northeast for the freak snowstorm that caused massive power outages, we remember that weekend as one in fear.  Fear of infection for both Virginia and myself.  

Virginia had been born a week prior and in typical 24-25 weeker fashion, she presented with severe  respiratory distress and dangerously low blood pressure.  She was unimaginably small, she was sick, and the doctors suspected that in addition to her prematurity she likely had an infection.  On her 3rd day of life they did a lumbar puncture and started her on a long course of antibiotics.  They simply did not have time to wait for results of the cultures to start treatment.  During morning rounds we questioned this approach.  We were fearful of infections later in her NICU course and wondered if we were using up an "arsenal" that she would need later.  They assured us that she needed this treatment.  

At one week post partum I was still in significant pain.  My midsection was heavily bruised and I developed a large warm, red lump near my incision site.  The afternoon of October 29th I suddenly started bleeding heavily from my incision.  We drove to the hospital in the snow and I was later admitted for a hematoma and suspected sepsis.  I too was put on a long regimen of 3 different IV antibiotics.

I cannot imagine how my Husband felt.  Both Virginia and I were very sick.  Virginia was teetering and could have taken a turn for the worse at any moment.   Because of the severity of Virginia's condition and my newly minted mama bear attitude I thought  I was "just fine." I'm sure he knew differently.  

This photo is from November 3rd; I had been released from the hospital 2 days prior and Virginia was finally stable enough to have kangaroo care.

We are the lucky ones.  At the end of each of our antibiotic courses there were no signs of infection.  Many are not this luckily, especially the smallest patients - the millions of babies that spend time in NICU's each year.  Antibiotic resistant infections kill these vulnerable babies.  Concerns about infections are not isolated to the sickest micropreemies like Virginia,  infection can put a "feeder - grower" that is sailing through the NICU in grave danger very quickly.  Infection is a fear of every parent and caregiver in the NICU.

Next week I will be traveling to Washington DC to join the Pew Foundation and other "Supermoms against Superbugs" to advocate against the overuse and misuse of antibiotics in our food animal production.  Superbugs and drug resistant bacteria are a very real problem; a very real problem for you and I, but an especially real problem for the smallest, sickest, and most vulnerable.  

Before Virginia's premature birth I never gave much thought to superbugs or whether antibiotics would work when I needed them.  It was in those moments of vulnerability that I realized that I was at the mercy of something that I always took for granted.   Now I know better.  Now I know that antibiotics in our meats and dairy are compromising our health and promoting antibiotic resistant bacteria.  Now I know what to look for in the grocery store, but that is not enough.  

In 2011 nearly 8 million pounds** worth of antibiotics were sold to treat people with infection, whether it was for your child's ear infection or Virginia's suspected sepsis.  In that same year, nearly 30 million pounds** of antibiotics were sold for meat and poultry production.  Those numbers alone are obvious indicators that something is seriously wrong with antibiotic use and with what our country is (often) unknowingly consuming.  

Visit www.SaveAntibiotics.org for more information about why the FDA, Congress and the White House need to take action to preserve antibiotics.  

**correction: a previous version of this post incorrectly stated this statistic in dollars rather than pounds (weight not british currency)

1 week post surgery (Transabdominal Cerclage)

In addition to a lot of well wishes (thank you), I've had a lot of questions about the TAC surgery.  I'm realizing that there just isn't a lot of general information out there about the TAC even within the preemie community and even within the community of people that have delivered between 19-26 weeks due to an incompetent cervix or preterm labor.   I'll be sure to dedicate a few posts in the future to different topics related to IC and the TAC.

I am a week post op right now and feel far better than I could have ever imagined.  I was told to expect a similar recovery to a c-section, but a bit easier because was not going to also be recovering from pregnancy too.  My c-section recovery with Virginia was bad.  I'm now realizing just how bad it was.  I had a post-partum hematoma that got so large it caused my incision to reopen.  This landed me back in the hospital a week after delivery for an additional 5 days for suspected sepsis.  This recovery has been a breeze in comparison.  

I've had my Mom here all week helping me and my inlaws are here this weekend, but Monday Ill return to work and should be pretty much back to normal.  I'll wait a few more weeks to start exercising, but thats pure laziness more than anything else ;). 

At my post op appointment with my OB I realized that the I hadn't thought about much past having the TAC surgery.  We discussed a tentative "plan" for the next pregnancy (again ... this is a ways off) and it all was pretty overwhelming.  There will be many more appointments than a "typical" pregnancy and I will be watched closely for pre term contractions, but that is not what is overwhelming.  What is overwhelming is that I know too much now.    I know too many things can go wrong.  I know that despite taking many precautions related to my history  that there are no guarantees that something else could go wrong.  The NICU was full of babies with heart defects, babies with chromosomal abnormalities, babies born early due to placental abruptions, babies with neural tube defects, babies born early due to infection, and so on.   These fears can be paralyzing but I know we simply have to follow our hearts, trust in our plan, have faith, and believe that we are making the best decision for our family.  I'm not there yet, but I'll get there.  

Nephrology Update

Virginia had a nephrology clinic appointment on Thursday.  They didn't do an ultrasound and didn't do blood work or a urinalysis until after the appointment, so there really was no new news.  After they receive her urinalysis results they will decide if we will start a treatment plan for her kidney stones or if we will wait another few months and do a repeat ultrasound.  

The treatment plan might include Diuril , which her kidneys went batsh*t crazy on while she was in the NICU.  Im hoping that Diuril is not necessary as I fear a simple diuril dosage will quickly turn into a regimen of constant blood work and sodium supplementation too. 

now for a little rant - There has got to be a better way to get a urine sample from an infant than to use a U-bag.  I have spent way too many hours in the waiting area of Yale New Haven Hospital trying to simultaneously wrestle a baby, keep her upright, feed her a bottle, and keep her distracted from the glorified sandwich bag taped to her underside.  I usually end up a disheveled sweaty mess and Virginia's diaper typically has far more urine it it than the u-bag does.  I did the December appointment solo and it took 3 hours and 3 different u-bags to get a sufficient (and later deemed contaminated) sample!  rant over...

Ginny had her first visit to our favorite New Haven Thai restaurant after her appointment!  We are THRILLED to be getting out after RSV season!  

March for Babies Reminder

We are just a few weeks away from the Saratoga NY (April 28th) and Fairfield CT (May 5th) March for Babies.  We are thrilled to have so many people walking with us!   I will be ordering Go Ginny Go shirts very soon for our team and want to make sure I have one for everyone that is participating!  If you would like to walk please sign up on our team website so that you are registered and so I have your t-shirt size.    

you can sign up here http://www.marchforbabies.org/team/t1913662 !

Only adults need to register but please email me with sizes for any kids that will be walking too!    T-shirts are free to you but we would LOVE if everyone got a few small (or big!) donations from their friends, neighbors, co-workers etc.