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.


  1. Sarah, I rarely remember reading one of your blogs without shedding a tear, even the happy ones. I think the best thing you have done for yourself is to write these blogs. My husband worked the OKC bombing for
    several weeks and after each shift he would write down everything he had
    witnessed, what he had seen and felt at the time. Some of it was horrible and some things were very uplifting. At the time, he didn't think much about it and he doesn't know why he started writing, but a
    therapist later on told him it was the best thing he could have done.
    You are doing a great thing for all of us by writing your blog, but I
    think you are also helping yourself and your family more than you realize. I love your attitude, your sharing and I love you!

  2. Oh Sarah, you are so graceful...a true inspiration. While I didn't offically subscribe to your blog, I am one of the 5,000+ people that kept close tabs on you and your family. You and Charlotte became a regular part of my day...get up, get to work, get a coffee, sit down, open favorites, scroll to the bookmark named Prayers for Charlotte and click. What did Charlotte need today? Let the praying begin. At night, with my boys tucked into bed, I would crawl into my own and would think of Charlotte.

    And now, when I think of Charlotte, I think of the 'For Good' lyrics from Wicked...I have been changed for the better. I have been changed for good.

    I pray for peace as you take our Lord's hand and continue your journey.

    Big, big hugs,
    Sarah in WI

  3. Sarah- This made me cry. I am not sure what kind of tears they are though. I am so happy you had one perfect day with Charlotte. I am so happy all four of you were able to be together and to feel complete. In the same breath, I am heartbroken that every day you are unable to physically be with Charlotte. I am thankful for this blog because when I see my own babies, I squeeze them a little tighter and hold them just a bit longer because of you. Thank you for reminding me that one of your special gifts was taken to her heavenly reward much too soon and tomorrow is never a guarantee. You write beautifully about your Charlotte and I pray for peace in your heart. thank you for sharing her story and yours as well as your precious memories.

  4. Just beautiful. Brings tears to my eyes...

    Oh that things could have turned out differently. But His ways are not our ways. One day we will see, but for today we walk in faith that indeed His ways are best.

    Sarah, you are such a beautiful woman with a heart after the very heart of God. The strength of character and absolute faith that you have displayed as you have walked (and continue to walk) down one of the toughest of roads is amazing to me. I know without a shadow of a doubt that the Lord is pleased with you and proud of you. I continue to lift you and your sweet family up to Him and ask for an extra measure of His grace, His love, His mercy, His blessing, and His favor to be poured out on you. What a faithful witness you have been an continue to be for Him. You challenge me, inspire me, and bless me.

    While I passionately prayed that sweet Charlotte would be alive and well today, I know that indeed she is...just not the way that we anticipated. Truly, the life she lives is more real and full than we have yet to experience. And yet my heart still grieves as I know yours does. I pray for His tender mercy to envelope you as you miss your sweet girl. Thank you for sharing your beautiful memories with us!

    Much love to you, my sweet sister in Christ,

  5. Sarah and Patrick,
    You both are truly an inspiration to me as was Charlotte. I am so glad I got to know her through you. Patrick Jr. Is so lucky to have such amazing parents.