Saturday, May 26, 2012


I love baby feet!  For someone so teeny tiny, Charlotte had the longest hands and feet, just like big brother.  I often times wonder what she'd look like now.  Would her hands still curl up in a ball under her chin when she slept?  Would her hair have caught up from where it was "styled" for surgery?  How much would she weigh?  Which clothes would actually fit her?   Whether we're at a restaurant, in our neighborhood or in a store, I think of her all the time and I wonder what we're missing.  But then I remind myself what a dear friend shared with me that just as God gave her wings to fly, HE will catch me as I fall.  

Tuesday, May 22, 2012


As promised, here are a few questions that you've asked.  Feel free to ask more!

What caused Charlotte's Turner's syndrome and Hypoplastic Left Heart Syndrome (HLHS)?
It was by random chance that she was born with Turner's syndrome and HLHS.

About 1% of babies with Turner's syndrome make it to birth.  1 in 1500 live births results in Turner's.  About 1/3 of girls (with Turner's syndrome) have heart defects, as it is a characteristic of the syndrome. 

Apart from Turner's syndrome, congenital heart defects occur in about 1% of live births.  Within that 1%, 1-3 per 10,000 births are diagnosed with HLHS.  In the US, 1000 to 2000 babies are born with this condition every year, occurring more often in males.  The exact cause of HLHS is unknown.

Some girls born with Turner's don't have a heart defect, while others have a milder one unlike Charlotte who had the "Daddy" of them all: HLHS.

What are the chances of it happening to another child we have?
Our geneticist explains that it is about the same percentage as if we hadn't already had a baby with Turner's and HLHS, since Charlotte's heart defect was directly related to her having Turner's.

What did Patrick and I do while waiting for her to come out of surgeries?
It varied, but typically we would just try to pass the time.  Mostly, I blogged or wrote thank you's while P worked.  Sometimes we would just sit and stare.  Others, we had family or friends with us to help pass the time.

At it's peak, how many people were following our blog?
In terms of people following, we have 14.  The most page hits in one day was 5,138.

How much weight was she able to gain before she died?
It's ironic to think that we were literally waiting for that final weigh in to come on Thursday, the day before she was discharged.  It all depended on if she was gaining.  Her weight on April 11 when she left this earth, was just shy of 6 lbs.

What color were her eyes?
She was born with steel blue colored eyes - just like her big brother Patrick's.  Although it was pointed out to me a couple of weeks before she passed away that they were turning green - like mine.  As luck would have it, I finally got to see them just days before she died and it's true.  They were turning.  It's only fitting considering our green eyes are uncommon on both sides.  Leave it to Charlotte...

Describe our best day.
Our best day was probably the day that our family of 4 got to meet for the first - and only - time.  I may have been too busy trying to direct but did catch myself standing at the back of the room with my eyes full of tears ready to spill over onto my cheeks.  I was so happy that FINALLY we were complete.  My  first born who had just celebrated his 2nd birthday, "got it."  As he said, 'shhh, Charlotte sleeping," he knew that the baby in mommy's belly all that time was Charlotte.  She wasn't this imaginary person that we kept talking about.  His little 2 year old mind could comprehend that this baby was ours.  And she was just as wide-eyed and content as a baby could be.  It's like I always said, get her home to our house and she will heal.  She needs to smell the smells in our house, hear my loudness...Little P's squeals, Bear's barking and she will remember what it's like to be home.

Just as quick as we were together, Charlotte and I were left by our lonesome that afternoon.  Later, we were granted a pass of a lifetime: a trip to the butterfly garden outside.  It's a beautiful courtyard at the hospital and I was shocked.  I was leaving the CHSU...WITH CHARLOTTE in my arms.  It was a slice of heaven.  Outside, it was perfection.  You know the day that I'm talking about.  It's one of those which sits at the perfect temperature, where the wind blows at the right times and the sun only warms your skin to the point of comfortable.  The birds were singing and my Sweet Charlotte experienced life on the outside.

In the few days after she died, I kept going back to the that day.  Short of being called, 'the best day ever,' it was one that will hold a treasured place in my heart forever.  It is my peace that I have today.  God knew that I needed that day just as much as my sweet family needed it.

What were the hospital conditions like?  Did you sleep at the hospital?
Very nice.  The CHSU is fairly new, as are all of the accommodations.  Charlotte lived in three rooms and all were basically the same.  Couch which became a bed, rocking chair, patient 'facilities' and a flat screen which made Daddy happy.  He and Charlotte liked to watch basketball, specifically UNC!   

We never slept at the hospital in her room.  (We did stay in a courtesy room for a few nights in the early days after her first surgery.  And later at a nearby hotel as I "inched" my way toward our house, away from her.)  In the beginning, Patrick and I were always together, given Charlotte's "behavior."  We arrived each morning at 730, when we were allowed in after shift change, and we stayed until late evening.  Depending on how Char was doing, sometimes we left around 10 pm and others, not until after midnight.  Especially during these days, I pried myself away most often crying but I/we knew it was necessary to sleep in order to take care of her...and us.  Since she was so ill, she was assigned to one nurse who literally never left her room unless another covered for her because in those days, Charlotte required a lot of care.  This meant it was a "lights on" room.

What does Dr. Mendeloff look like?
What does amazing look like?  After all, what he does for a living is nothing short of that!  I SO wish that I had a picture of he and Charlotte together but I had planned on getting it the day of discharge.  I'll see him as our hero.

Who did she favor as a newborn?  Does she look like big brother Patrick?
I love that our babies look like each other.  Patrick Sr. and I think that she looked just like her older brother did when he was born, but just not with as much meat on her bones.  They both had dark hair and looked like outsiders because neither resembled us!  Though quickly big brother began to favor Daddy, as in, he was/is his "mini me."  In the later days, Charlotte began to look more like me I'm told.  CRM's hair line was blond which made me think that her hair would too turn a light blond like brother's is now.

What was a typical day like while caring for Charlotte?
Every minute was accounted for.  Some days, it was all I could to spit out a blog so that our prayer warriors could start praying.  And while every minute was accounted for, every day was logged in a notebook I kept detailing the importants of each.  The pages were made from a template my best friend made for me.  At the top of each, it read "Charlotte's Day" and I "charted" (my nurses would be proud!) every day.  I'm sure that I was a sight at rounds in the morning standing there with my notebook.    

What moment brings a smile to my face when I think about Charlotte?
Taking her outside.  Walking her around the unit (CHSU).  Recalling countless times that I could comfort her.  Reading to her.  Dressing her.  Bows!  Seeing her laugh.  Watching big brother smile so sweetly when he met her for the first time.  Her fiery self.  Green eyes.  Her hoarse cries.  Her loud cries.  The way she would "coo" and almost bat her eyes when Dr. M came in to see her.  How she loved her mama's voice and being in Daddy's arms.

What is the one thing that I miss most about Charlotte?
Can I just say that I miss her?  I'm not sure if I could narrow it down to only one thing because everything is equally as important.  If I really had to, I would say I miss the sound of her voice.

Thursday, May 17, 2012


I started to sort through some of Charlotte's clothes.  The week before she passed away, I got a wild hair and bought her some "essentials."  And if by essentials you mean tunics and dresses, then yes.   I bought essentials.  We were so close to being HOME that I felt confident knowing what size and type of clothing I should buy her.  I could buy bubbles and dresses to accommodate her her size.  And recently, I had the chore of returning a stack this week.  Another humbling moment as I trekked to the store with the lot of clothes that could no longer be worn by our sweet Char Char.

Without so much to report on each day, I don't really have too much to blog about lately which is why I'm opening up the next post to a question and answer session, if you will.  

Either send me an email to or leave a comment on this post and I will answer them in my next.  I absolutely adore talking about her, so it's only fitting to host a Q and A.  And please know that no question is off limits.   Her journey was and continues to be nothing short of miraculous, and we're happy to share!

These pictures of our Sweet Charlotte are more recent.  She was still in Room 2, her second of the three, and was in the 'waiting and growing' period before being eligible for her Gtube surgery.  We could bathe her...clothe her...hold her anytime we wanted.  Life was sweet.

Wednesday, May 16, 2012


On Mother's Day, we donated the last of Char's milk stock pile.  1004 ounces to be exact.  And very bittersweet.  It was my last bit of what was meant for my Sweet Girl and that made me sad but I was a "joyful sad" because I remembered all the good that is still coming out of Charlotte's life.  Because of her, the milk will go to potentially hundreds of babies thanks to how it is processed with other donors.  It will help many preemies in need have a better chance at life.  And that's something to smile about because our girl has done it again.  She really is something.

May the best of your todays, be the worst of your tomorrows.


Monday, May 14, 2012


I've never noticed butterflies until now.  I'm a pretty observant person as in I will tell you which earrings you wore with your last outfit, but I haven't noticed butterflies around me as much as I do lately.  Sometimes, one will linger in front of my stopped car at a stoplight while floating across the street.  It's as if it almost stops to stare at me.  

The little birdie in Charlotte's garden left my tree.  I think Bear may have scared her away.  But when I take walks in the neighborhood, would you believe me if I told you that one follows me from rooftop to rooftop for part of the way?  Not all - just a few houses - but it follows me and chirps the whole time.  Enough to make one stop and wonder if you're crazy or really seeing something wonderful?

Sometimes I wonder, is it Charlotte?  Is she smiling at me while nudging me in the right direction of "happy?"  And often I ask, "is it you Charlotte?"

I'm fully aware of how this sounds and before Charlotte I never would have published this thought to the world, but now it seems irrelevant because if my God is giving me little pieces, I'm going to take them and RUN.

People look at the outward appearance, but the Lord looks at the heart.

1 Samuel 16:7

Thursday, May 10, 2012


To most, a Wednesday is like any other week day.  You get up and go about your normal routine whether it's tending to your flock or working away from home.  Yesterday morning - like so many others - Little P and I headed outside on a walk which stopped short, just 3 houses down.  It's a new build and P LOVES the cranes, mixers and dirt.  We must have stood there for 15 minutes when I made a phone call to Sparkman Hillcrest.  

Charlotte's death certificate had arrived and I made arrangements to pick it up.  To many, it would be a sad phone call or visit, but to me, it gave me peace - albeit with sadness - peace nonetheless.  Anything that has to do with Charlotte makes me happy.  I absolutely love talking about her, even if it's discussing the final verbiage option for her marker or picking up her certificate.  It makes me feel closer to her because I am still able to "do" for her.  I wonder though how I'll feel when all is said and done.  When life is still.  I suppose I'll just have to continue doing 'for her' forever because I know that not a day will pass that I don't think about her at least 999,999 times.

I am wading through our thank you list.  YOU have not been ignored, rather quite the opposite!  We continue to be deeply touched by the true outpouring of love and support from each of you.  Your donations to the Chloe Duyck Fund continue to show your dedication to Charlotte...and to us.  God gifts us with many things in life but the gift of your friendship is one of our most prized.  To say that we are thankful doesn't seem adequate but neither does saying that we 'love' Charlotte.  Because to us, Charlotte is our whole heart just as our appreciation for you abounds.  My heart is happy.  Thank you for loving Charlotte - it's the best. gift. ever.

Under HIS wings you will find refuge. 

Psalm 91:4

Wednesday, May 9, 2012


Guess who's famous?  My sweet girl, that's who!  And this mommy is uber excited to announce that Miss Charlotte has a page dedicated to her on the Chloe Duyck Fund website.  With very special thanks to founder Michelle Duyck, Charlotte is being featured as a HEART HERO.  Gimmie some of that Sweet Charlotte!  

To make a donation which will honor Charlotte, Chloe and all heart babies, visit  Go to "Meet a Heart Hero" located on the header and you'll see Charlotte's page.  On it, is an easy to use donation button to place yours.  Remember all funds benefit the CHSU in the areas of awareness and lifesaving research which will one day hopefully save babies like Sweet Charlotte.  

As I've learned, grief comes in waves but it's not a perfect storm.  It teaches us about fear, loyalty and love, and reminds us that those we cling to will forever live in our hearts.  Your prayers and love for our dear Charlotte continue to give us peace.  Thank you for donating in honor of OUR GIRL.

Monday, May 7, 2012


My little sugar had a STOCK PILE of milk saved in her deep freeze.  Remember that famous Valentine's Day present that Daddy bought her?  Well, it's full and we are donating it to a local milk bank.  It makes me happy - and sad - all in one breath.  Happy that preemies in need will have the cream of the crop but sad that my Sweet Charlotte won't be the recipient.  Sad because it's such a labor of love from me to her and soon, it's going away.  

Each day, I would pump every 3 - 4 hours.  A painstaking effort to arm her with the good stuff.  Some days it was harder because I wanted to be sitting right next to her, or holding her in my arms but instead had to retreat behind the curtain in her room to "excuse myself."  I always tried to time it when she was content or sleeping.  Sleeping was best, because I could relax in the hope that she would remain so. Although the last few weeks while she was in Room 9, she fussed if she didn't have my undivided attention.  So my girl! :)  The unit was familiar with Mommy's voice drifting through the air from behind the curtain as I soothed my Sweet Charlotte.  Much like a person without sight, Charlotte was in tune with my voice since we weren't able to have held each other for so long.  Actually, it was my prayer all along that I would be able to minister to her in ways that only He could provide.  And I was able to do so - which I constantly reminded myself - because it's the best gift that I could have received.  I could comfort her.

I kept an app on my phone to "chart" each pumping.  It charts ounces pumped over each day, week and month.  (I told you that I'm an honorary nurse!  So proud are they of my efforts.)  Out of curiosity, I figured out how much milk Sweet Charlotte had.  I just dropped off an impressive amount - 705.5 ounces - from the last couple weeks of February.  I have the month of March and early April to take next.  I'm hopeful that the good work done with the milk will honor Charlotte.

And I suppose that my "milk freeze" - aka deep freeze - will now turn into a meat freeze, given the meat and potatoes family that we are.  But maybe I'll keep one bag in there to keep the meat company.

Friday, May 4, 2012


Look at this Little Lover!  

Love the Lord your God with all your heart, with all your soul and with all your strength.
Deuteronomy 6:5

Tuesday, May 1, 2012


Thanks to my very loving husband, Charlotte's tree has some friends.  We spent the better part of Sunday afternoon "making it pretty."  I tried my best to be a good hander of things, picker upper and even attempted to dig holes.  Have you tried to dig one?  It's hard.  He told me that he planted Charlotte's tree for her but he was planting the garden for her...and for me.