Monday, October 15, 2012

"MOMMY, I HEART"

Patrick Jr. is always telling me "I driver man," "I running man," "I number one!"  "I" this or "I" that and nothing out of the ordinary for a 2 year old.  On the way home today, I heard him say, "Mommy, I heart."  When I looked in the back seat, he had his little boy hands shaped like a heart, over his face and said again, "Mommy, I heart."  We always talk about Charlotte living in our hearts and when I said, "Like you are in mine.  Is Charlotte in yours?" ...and in his little boy voice, said "uh-huh."  Praise Jesus for these heaven-sent moments.


Wednesday, October 10, 2012

LOST IN TRANSLATION

It happened again, but this time I was at the park leaving a group play date.  I happened to walk out behind a friend of a friend whose question didn't necessarily catch me off guard but it left me at a loss for words.  

Not having had face time on the playground with this new friend, I didn't have the opportunity to share that I had another baby, not just Patrick.  So when she asked while we were loading kiddos in cars, I realized that not every time is the right time.  

I am best when I have a few minutes to explain CHARLOTTE.  She's not just my daughter who is in heaven.  She's so much more and in an effort to serve her, I sometimes discriminate against situations.  Had we backed up just a few minutes prior and found ourselves in the same position, I would have LOVED to share.  Rather we were hurried, trying to beat the clock before kids melted down.  Dirty diapers, tollway traffic and a hunger meltdown doesn't necessarily equal a "good time" for me to introduce my darling Charlotte into my new friend's world.  Just as soon as I would have said that Char has since passed away, I would have had to say "later."  I guess to some that's okay, but to me I feel like I'm doing her a disservice.  To me, there is so much more to her life than a quick few sentences before speeding off in my car leaving a trail of dust...and no explanation of Charlotte's incredible life. 

Other parents who have lost children may disagree but to me - right now - I understand Charlotte's life as too precious to not get to explain her, if even for 3 minutes.  So when I found myself in this situation, I chose otherwise.  But even one time, is one time too many not being able to share with the world the wonderful who is my daughter Charlotte.

Monday, October 8, 2012

BROTHER LOVE

 Nothing warms my heart more than seeing P remember Charlotte in his own way.  He absolutely loves to water her tree.  In part, I'm sure it's due to the fact that there's a hose, with water coming out of it, but when he asks to water Char's tree, I happily oblige. 



Wednesday, October 3, 2012

FLITTER, FLITTER, FLY

Charlotte's incredible spirit made itself known yet once again, and this time in Stillwater, OK.  Home of Mommy's alma mater and nearly 60,000 fans during the OSU vs TX game last Saturday night.  One of my dear childhood girlfriends noticed a butterfly fluttering in front of her, despite the chaos which was that of the game all around.  It was when it kept hovering around her that she texted me and asked, "I mean who sees a butterfly on the 50 yard line of T. Boone Pickens stadium?"  My thoughts exactly.  

Tuesday, October 2, 2012

I SEE HEARTS

I see them everywhere.  Quite possibly I'm the only one who can make out the sometimes faint shape of a heart, but nonetheless I see it.  Take for instance Sunday night at the Rangers game.  As the sun was setting, I looked up and saw a heart in the clouds and felt the love of my Charlotte.  And as I went to upload Sunday night's picture, I saw this one of Patrick on his first day of school not long ago.  Our wreath is usually fluffed out in all of its round glory but its new shape caught my attention.  These and many others are pieces of happiness...they are pieces of her.



Saturday, September 29, 2012

LOVE, GOD

My best friend texted me this picture not long ago.  Yet again I was somewhat startled when I saw it because frankly speaking, I'd not heard of another Charlotte Rose.  Coincidence?  Probably so, yes, but I like to think that is another heaven sent moment from Him to me.  Word.


Friday, September 28, 2012

FOR THE LOVE OF CHARLOTTE

Until earlier this summer, Patrick and I hadn't been back to Medical City since Charlotte had passed away.  Well, once in the week after her departure to deliver cookies to the staff (a gift intended to be given on "check out" day) but we sat in the car as my mother made the delivery for us.  I wanted to go but opted otherwise to avoid the elephant in the room type of situation.  The elephant in this scenario would be nothing short of beautiful and flawless, as is my Charlotte, but not wanting to stand awkwardly in the CHSU, I stayed in the car.  So when Charlotte's NICU roomie was having his second heart surgery not long ago, it was decided to drop off lunch for his family.  I was at a meeting so my sweet husband and son were tasked with the job.  Honestly, I didn't expect to run up there, as nap time usually dictates my daily schedule.  There was simply not enough time between the lunch hour and P's nap, however sometimes life has a different way of working out.  

My boys were just finishing up their own lunch in the lobby of the children's tower, so I headed over to pick up Patrick Jr. and race home.  I'd been there no longer than 3 seconds, and with just enough time to be informed by my 2 year old that I couldn't share his mac n cheese, when I looked up and saw Charlotte's nurses.  It just so happened to be two of my FAVS.  I'm quite certain that I became the world's greatest long jumper that day as it took me all of one leap to reach them.  And from then on, the floodgates opened as the team of doctors and nurses who so lovingly took care of Charlotte emerged from a classroom.  Dr. Mendeloff's right hand woman, Dr. Stromberg and our other "favorites" - all so many familiar faces which happened to be in the lobby.  They were just leaving a training class and although I missed seeing Dr. M and a few others, we hit the motherload that day.  

To be at Med City made my heart happy.  I'd always wanted to go back but short of showing up to work a shift in the CHSU (ha!), I really didn't have a reason to go.  Had I known how therapeutic it would be, I would have shown up much sooner.  We were happy, happy and happier.  Everyone there was just smiling as we caught up and remembered Charlotte.  I'm not sure that I had realized before then just how much I missed everyone.  What a gift from Him as we happened upon our very own little reunion. 

I'm excited to share that thanks to recent research and our very own Charlotte, the CHSU is implementing yet another check in the checks and balances system already established.  The EEG is a test which marks brain activity and will do so in a child who has HLHS both before and after surgeries, attempting to intercede a potential seizure like the one Charlotte had which led to cardiac arrest.  The medical study linked children with HLHS and seizures which, until now, had not been so.  To know that babies like Charlotte will benefit thanks in part to her life, makes me burst with happiness...thankfulness...pride.  Charlotte's sweet life wasn't spared, but her legacy will live on.


Wednesday, September 26, 2012

FLOATING

This past weekend a butterfly landed on my shirt - a first - and then a short time later, off it went into the distance.  I stood there awhile watching it float away, all the while wondering where she was going.  I felt like saying, "come back!  you just got here," but yet she had other plans.  So I thanked Him for the little piece of hope that had landed on my shirt - and heart - for just a moment.

Later, I happened across what I would only imagine having ordered for an event for Charlotte, whether it be a baptism, birthday, or homecoming!  To be honest, it took me by surprise.  I stared, stunned almost, looking at the little girl's sweet silhouette...her pony tail...her name and I couldn't help but smile.  And wonder, of course.




Tuesday, September 25, 2012

OUR HEART

Earlier this summer when our revised marker finally arrived, I was on point ready to "approve" and, later, taking in what seemed to be a heart shaped outline around it.  Look closely, it's there.  My girl is there.  

And just today, Little P and I paid a visit to Sparkman Hillcrest.  He had asked to "see Charlitte," so I obliged...with bubbles.  The wind whipped around carrying our bubbles far away and when we were done, the wind was too.  Funny how that happened.  P handpicked acorns from all over Lullaby Land to place on Char's marker to "make pretty."  Bless him.





Monday, July 30, 2012

SURF, SAND AND CHAR CHAR

Charlotte should have been with us at the beach this summer.  We had planned on taking her after my favorite Nurse Practitioner had asked why we thought we couldn't take her.  I remember that day, that conversation so clearly.  I was warm in the cold, dark radiology room.  It was so liberating to know that we could do and see all things with Charlotte.  Our baby would get to experience life. 

Despite her not being with us physically, she was very present...in our hearts and even making herself known in the sand!  I saw a few families with a big brother toddler and a baby sister and longed for the 'what it could have been' but remember that our reality is for a reason.  I may not understand that reason but I do trust, so that's what I lean on, even in heavier moments.  I remember watching her initials being washed away during high tide on the first night there.  Just as quickly as I wrote them, they were gone. Kind of similar to her short life, but unlike her initials in the sand, she lives on.





Monday, July 16, 2012

IN PRINT

Among the many talents which are my grandmother, she is an accomplished writer.  Recently, she shared her most recent piece, The Blessing of Charlotte, a poem written in honor of our sweet baby girl.  As I listened to her melodic voice read the words, I realized that it is a memory I'll always treasure.

THE BLESSING OF CHARLOTTE

What a beautiful child she was
Eyes so blue and hair so brown
With curling lashes and porcelain skin
And lips like rosebuds ready to sing
Who caused people to pray
Who had perhaps never prayed before
And wished for miracles everyday
Who cried real tears for one so young
Whose tiny life had just begun.

One thinks, perhaps, that's why 
The Lord kept her here that long
For the blessing of Charlotte
Will live on and on.
T.C.

 




Thursday, June 28, 2012

YOU ARE MY SUNSHINE


 

the other night dear
when i lay sleeping
i dreamt i held you in my arms
when i awoke, dear
i was mistaken
so i hung my head and i cried

you are my sunshine 
my only sunshine
you make me happy when skies are gray
you'll never know dear 
how much i love you
please don't take my sunshine away

Tuesday, June 26, 2012

FLOWERING

Charlotte's garden is growing, especially her tree.  Take a look at all the "pretty" on it!  In true Charlotte style, overnight it went from a few traces of pink to an explosion...and there's still more to come.  I just wish that instead of a beautiful tree, I had my beautiful baby girl at home.   One day...


He is before all things and in Him all things hold together.
Colossians 1:17

Sunday, June 24, 2012

BROTHERLY LOVE

Patrick and I had some time before a lunch date last week so we stopped by Sparkman Hillcrest to visit Charlotte.  He ran right over to her plot and said "hi, Char Char."  My sweet boy.  Of course he wasn't too into taking any photos but Mommy couldn't resist.  I love that he says "hi" and "I love you, Charlotte"... and knows right where her plot is.  

Likely, he'll grow up not remembering her as much while she was with us but rather the memory of her which we keep alive in our hearts.  I pray that his heart holds a love for his sister whom he never really knew, but whose incredible spirit feels like "home."  





Wednesday, June 20, 2012

HANDS AND FEET

When Patrick Jr. was born, Dr. Oliver exlaimed, "look at the size of his hands and feet!"  Looking back, I know that Charlotte was definitely ours because although she was tiny in the weight department, her hands and feet weren't.  I've mentioned it before, but her fingers and toes were long, just like her little feetsies.  After she passed away, molds were taken of her hand and foot for us to keep, but as I look at them now, they look...so...small.  And those fingers and toes, not so long.  But that's to be put in perspective as she wasn't even 6 lbs and had had 2 major heart surgeries amongst countless others.  Quite an incredible spirit.  I'm glad that we have these molds because I can run my fingers over them and know that is her.  She left her mark for us, in more ways than one.  Remember that saying "lead by example?"  Well, I think she did.  I'm trying to follow in her mighty footsteps, one baby step at a time.  


Tuesday, June 19, 2012

HEART HERO

Take a look at this photo I found.  Another feel-good something.  When I saw it, I just stared.  Pink and grey...dotted with a heart.  I can only imagine that our little Heart Hero would have had pink painted nails some day.  And maybe one painted with a heart.  

Nails!!(:

Monday, June 18, 2012

"CHARLOTTE"

My favorite story recently is one which a close friend shared with me.  On the day she was being discharged from the hospital to take home her first born, she was asked the name of her baby girl by the birth certificate office.  She answered "Dylan Charlotte.'  Her husband quickly looked over and reminded her of their chosen middle name, but as she was telling me through tears, I nodded while my own crept into my eyes.  I looked down and saw her beautiful baby girl, Dylan Penelope, in my arms and knew.  Charlotte's memory will live forever in the hearts of those who love her.  She will never be forgotten.  Maybe it was the fact that my friend was in the same room, in the same hospital as I was when I had Charlotte.  Maybe it was the fact that her nurse happened to be named Charlotte.  But maybe it was just because Charlotte lives in my friend's heart as well as yours.  So to all of you, thank you for keeping our family - and SWEET CHARLOTTE - on your hearts.  Thank you for honoring my baby girl.

Sunday, June 17, 2012

NUMBERED


I'm usually caught off guard when I'm out and hear, "is he your only one?"  It's a stranger in a store who's pointed to Little Patrick while asking the question.  I then spit out "yes," completely unaware but usually clue in as quickly as the words fall out...and then I'm left stumbling.  I want to shout, "I have another baby!  Her name is Charlotte."  As I stumble through the next few minutes, I kick myself for not being quick enough to answer the way I want to.  My friend explained that over time, I'll figure it out.  My reality will be so real that my brain will comprehend the question right away.  I can then answer, "no, I also have a little girl named Charlotte.  She would be 4.5 months old."  I know that as I'm living this new reality, I'm not alone.  Charlotte's memory fills up my brain, our house and our hearts.  And as we carry through the days to come, we will continue to carry her with us as we wait to be reunited with her in Heaven.

Thank you for your continued prayers for me, and my family.  We feel your love, and even on the days when I feel despair creep inside my heart, I'm reminded of God's graciousness.  He will continue to carry me as I draw Him near.  And I remember that I am THANKFUL for the opportunity to have mothered such an incredible baby girl.  She has blessed our lives immeasurably. 

Friday, June 15, 2012

SMALL THINGS



This is what I saw when I picked up my photo order, which happened to be of my Sweet Charlotte.  Dotted with a heart.  Makes me happy.

Thursday, June 14, 2012

HELLO, MY NAME IS...MOM


Last night Patrick, little P and I busted out in dance at dinner.  Thankfully we were safely in our kitchen  but it was strange because as happy and as much fun as we were having, I immediately remembered that Charlotte was missing.  And yet, no matter what we do, she will always be missing - not in our hearts of course - but in our daily lives.  I wish that she were in the thick of things, alongside of us as she claimed her space in our family of four.  

Now that we've been on our own for awhile, (despite a little Mimi visit not long ago!) I am getting into the swing of being a full-time mom again.  When you actually stop and think, I haven't answered to my usual calls of mom and wife fully since I went on bed rest after Christmas.  Jokingly, I say that our Christmas company never left.  It's true - we've been blessed beyond measure to have had our moms and even a dad help take care of us throughout.  So although natural, having the full ownership of "mom" recently is bittersweet.  It's nice to be back, but I can't help and think about her as I'm pushing Patrick's swing at the park.  Most days they're "daydream" thoughts of her which make me feel warm and fuzzy and are a gift from Him.  He knows my heart and He continues to comfort me, lifting me up with tender mercy.

Wednesday, June 13, 2012

BLESSING RING

I started a blessing ring when Patrick was born.  It holds all the cards from the first year he was born.  Everything from his arrival to his baptism to his birthday.  It hangs on his door and has been swatted by dog tails and little boy hands as he's grown over the past 2 years.  So it's expected that I would want the same for Charlotte.  Hers was a gift from my best friend and it holds all that is precious to me.  I had just threaded all of her cards shortly before she died.  I thought it would be so touching for her to later read the words of encouragement, love and support of so many who loved her.  I thought we'd have to get another one because they were so many of you who supported her that with two more surgeries and many special occasions ahead, we were going to quickly run out of room.

We now have a huge, black leather box from SH that holds cards with signatures or hand-written notes of sympathy.  Someday, I'm sure that I will string those too.  They deserve to get swatted by a dog tail and slapped occasionally by big brother's growing hands.  After all, just as Charlotte is, they're a part of our family.


Because of the Lord's great love we are not consumed, for His compassions never fail.  They are new every morning; great is Your faithfulness.

Lamentations 3:22 - 23  



Thursday, June 7, 2012

HEAVY

Sometimes life seems heavy, to use a word that Patrick Jr. says all the time.  He's usually holding a toy truck in his hands while saying, "mommy, heavy.  heavy, mommy."  

In the most minor of events of my life, sadness has a way of making itself known.  It's like I've been served a full glass of it and I'm not supposed to spill, but yet I'm asked to run and jump and play like I used to.  How can I do that if my glass is full?  Much like the way of grief, I have to learn to balance the glass.  I have to incorporate the sadness into my life.  But every once in awhile, it spills and I'm left to clean it up.  How I do that is different every time because sometimes, I'm in the grocery store while others I'm comfortably in the privacy of my own home.  And while I recognize that my cup of sadness will always be full, I also recognize that I have a full glass of happy too.  It keeps me afloat through the harder times.  I know that when I'm overwhelmed with anxiety, sadness, desperation for her, that my God lifts me up.  He gives me just enough hope and strength to make it through.  He always has, just as He gave to my sweet and wonderful CHARLOTTE.  

I was reading about another little one who just went through her third surgery for HLHS and with each word I read, I felt like shouting out, "I know!" or "Me too!" or "I wish that Charlotte were here."  The hardest trial of my life was walking alongside of my baby and watching her endure all that she did.  Time and time and time again, she endured...as did I.  It was - as it still is - up to me to trust and to be patient.  I trusted my precious baby girl's life in His hands and I know that, now, He is holding me as I trust in His perfect plan. 

Part of me finds comfort in what was hospital life.  It's like running into someone from your home town.  You're like, "hey! i know you."  So if I happen across someone who knows what Milrinone does or what an arterial line is, it feels like home.  Just like when a hometown friend texted me the day that Charlotte died.  She said, "would you believe me if I told you that once you're home you'll actually miss the NICU?"  I read the text aloud to my kindred spirit who was "our" nurse the last few days of CRM's life...and I agreed, even before I lost her.  So it's natural that I would find comfort in the place that was Charlotte's home.  Would it be so bad if I showed up and asked to work a shift? :)  

My peace is knowing that Char Char, my sweet and wonderful Char Char, is with her Maker.  He gave her wings and He has made her whole.  She is my hero.  The first thing that I'll do when I arrive in heaven is to whisper in her ears that she is my girl.  I will await that day so I can tell her how amazing she is.  How beautifully perfect and wonderful she is.  I will hear her little girl laugh and smell her hair and feel her skin as I hold her and am finally...AT PEACE.







Saturday, May 26, 2012

THIS LITTLE PIGGY

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

ANSWERED

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

PRETTY BABY

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 Gtube...in 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 spmckittrick@gmail.com 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

CHARLOTTE THE GREAT

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.

Jay-Z


Monday, May 14, 2012

WON'T YOU COME MY WAY

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

WEDNESDAY

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

HEART HERO

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 www.hope4tinyhearts.com.  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

CREAM FOR YOUR SUGAR


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

XOXO

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

HOW DOES YOUR GARDEN GROW?

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.  



Monday, April 30, 2012

Here is my heart.  Her name is Charlotte.



Saturday, April 28, 2012

SHE IS SOMETHING

There are so many blessings that Patrick and I find in the day when CHARLOTTE left this earth.  For starters, we were together for the first time in almost a month.  You see, we'd perfected 'crossing in the night' as I called it.  Daddy was either working or with Charlotte or Patrick while I was always with the other baby.  It wasn't until that fateful Wednesday which we were actually together with Charlotte at the hospital.  Blessing number one.  Number 2, was that our Sweet Charlotte drew her last breath with us by her side.  And as much of a rug-pulled-out-from-under-you type of situation that her exit was, we are comforted knowing that she was healthy.  She was ready to go home.  We weren't busy chasing her life down like we had on so many other days.  Rather, she was perfectly poised, coiffed and ready to leave, with her "healthy" heart.  It's just a different homecoming than we had imagined.  This third reason gives us peace most of all - the fact that her heart just stopped after having given no warning.  In reviewing her vitals from the day, it showed not one single stitch of anything amiss.  Nada.  Zilch.  Zero.  It was as if God simply declared it as being "time."  And that's just what He did.  No warning but just about 4 to 5 seconds from when her heart was beating to when it stopped. 

It was only a couple of days later that I realized that she had drawn her last breath with her Daddy and I by her side.  Granted, she left this earth hearing her Mommy "calling" for help but I think that only added to her peace, as she had grown accustomed to my "encouraging" over her short life.  

Naturally, the medical team afforded Charlotte with every opportunity as they hurriedly executed every. last. detail. of her life-saving efforts.  It was like an orchestra performing - hitting every note just perfectly - and yet, it was God's orchestration that they were following.  With every effort, though,  (medicines, chest compressions and the final attempt at saving Charlotte, ECMO) the door was always closed.  It was not in His plan.  So later when I asked what time did she leave this earth, it was answered "officially" at 7:03 pm, although we all knew she died an hour before.

I will never forget the compassion shown that night to my daughter...to me...to my husband.  We had never actually gotten to hold our sweet and precious baby without her being hooked up to some IV line, sensor, tube or cuff.  And as bittersweet as it was, we finally had the opportunity that night thanks to the heart of Dr. Mendeloff.  An effort not many would have gone as far to do.  He has always been at the top of our list for being Dr. Wonderful, so this only further solidifies his title.  Additionally, the team of individuals at Medical City who we'd grown to know and love, offered such support.  Through their presence to their words, hugs and tears of love for Charlotte to their unmatched talent.  Everyone should be as blessed with a group like this in their corner.

I'm sure that with time I will learn how to mesh my two worlds into one and learn to be my happy, naturally caffeinated self while still missing my Charlotte.  And I imagine that not a day will pass on this side of heaven when I won't think about her.  She has touched the lives of many, but mainly mine.  I'm not sure exactly how I'll honor her justly but I hope that she is proud because simply put, she is something AMAZING.

Friday, April 27, 2012

FOOTLOOSE

It goes without saying that we were all dancing on air when our sweet family of four finally got to meet not long ago.  Although brief, it was amazing.  Our family was together.  Little P was singing and dancing, Mommy and Daddy were being, well, Mommy and Daddy...and Sweet Charlotte was just being a perfect baby, soaking it all in.  Take a look at who was carefree and loving life, but who could blame him?  This moment is permanently stored in my bank of life's greatest moments, right behind marrying my husband and meeting my children when they were born.  Thank God for answered prayers.