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.

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.

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  

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.

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.  

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.

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.