Wednesday, September 28, 2011

Section "C" Under the Tree...

Yesterday Matt got a phone call at work letting him know that Charlotte's headstone had been placed earlier in the day.  Again, one of those out of the blue events that can change the course of your whole day.  One phone call is all that it takes.

When I visited the cemetary this past weekend there was only a patch of fresh grass marking the place where we laid our little girl to rest.  No stone, no temporary marker...just a patch of grass and a bouquet of flowers that I brought along with me. 

This weekend when we go back it will all be different.  I'm not sure how I feel about that.

A headstone is an in-your-face reminder of our reality.  Our baby girl died...

A headstone is permanent.  She's not coming back...

A headstone hurts more than I had prepared for. 

 
 

Tuesday, September 27, 2011

A Change of Seasons

Last week felt like it was about three weeks long.

Monday was one of those days where I just wanted to hole up in my office and not have to talk to or make eye contact with anyone. The day started out okay, but about half way through the morning I hit a wall and could totally feel myself shutting down. I’m pretty sure that I cried for about 4 hours…

What was it about that day?

I know I don’t need an explanation—I have a pretty justifiable reason to have bad days, but I am always curious how a totally normal and routine day can all of a sudden turn into a boo-hoo, I want to go home kind of day.

It seems to be happening to me a lot lately…and the only explanation that I have is the change of seasons.

Cool, gloomy days = Fall
Fall = Halloween and Thanksgiving
Fall = One season closer to Winter
Winter = Christmas and New Years

Four big “celebration” days…two of which fall on the 31st of the month…nothing like a little salt in the wound.

So yeah, I’ve been a grump lately. I think that my brain is trying to ease me into the craptastic (Yes, I just said craptastic) few months that are looming ahead of me.

I miss our little girl every minute of every day—some days it’s a dull ache in my heart, others it stings like its brand new.

Last week was a stinger…

Thursday, September 22, 2011

It's Official!

Today is an AMAZING day for newborn babies around the country.
Thanks to the incredible advocacy and hard work of some equally incredible people, every newborn baby will now have the chance to be screened for critical congenital heart defects (CCHD).
Congenital heart defects occur in approximately 1 in every 100 live births making them the most common defect in newborns.  Twenty five percent of these defects are considered critical to the point where intervention is required.  While some children are identified prenatally (like our Charlotte), others can go days, weeks, even months without diagnosis.  Unfortunately there are also many other families that first hear the words “congenital heart defect” through a coroner’s report.

It crazy knowing that we do a heal pokes to screen for rare metabolic disorders and hearing tests before discharge from the hospital, but there is 
no screening for a disease that causes up to 3% of all infant deaths within the first year of life.
Until today that is!
I am THRILLED to tell you all today that the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) has voted to recommend that all newborns be screened for CCHD.  This recommendation acknowledges the use of pulse oximetry as a screening tool to help detect heart problems in newborns.  Early detection means less infants sent home undiagnosed.  Early detection means LIVES SAVED.
For those of you that are unfamiliar with pulse oximetry, that glowing red light is from a probe that can be wrapped around the hand or foot to detect the amount of oxygen in a person's blood.  In infants with CCHD, this level is often low (Charlotte's averaged 75-85% after surgery where a normal number is closer to 97-100%.)  The test is SIMPLE, PAINLESS, and VERY INEXPENSIVE.  
So, you might be asking what this means for all of you.  I need you to do me a HUGE favor.  If you are pregnant or know someone who is, PLEASE let them know about this recommendation and encourage them to request a pulse ox test on their newborn before leaving the hospital with them.  Some states will work on implementing this practice on a department of health level, but others will still require further legislation.  States are NOT required to implement screening at this time, despite the SACHDNC recommendation.  PLEASE PLEASE PLEASE help spread the word.
I remember how I felt the day that we learned about Charlotte's heart.  It was a terrible, terrible day, but looking back on it I can see that it was a blessing.  In the words of heart-advocate extraordinaire (and heart mom), Annamarie Saarinen, "The only thing worse than having a newborn diagnosed with heart disease is having a newborn go undiagnosed with heart disease."
Congratulations to everyone who worked so hard to get this to where it is today!

Monday, September 19, 2011

We Love the Zoo. How About You?

A few months back Matt and I got a very exciting piece of mail delivered to our house.  I opened the mailbox to see a medium sized envelope resting inside with our names carefully handwritten on the front.   I'm a total sucker for mail and could hardly wait to get inside and see what it was.  Once inside, I tore the envelope open and as I slid the enclosed papers out, a HUGE smile immediately came over my face. 


What was it you ask?


Finalized adoption papers for the 2nd cutest bear you ever did see!
(our Charley Bear, of course, being the front-runner in the cute race)

After Charlotte earned her wings some of my family had the AWESOME idea to make a donation to the bear family at the Henry Doorly Zoo in Omaha.  How great of an idea is that!?  A little family of brown Sun bears to help us remember our Charley Bear.  I love it!  The envelope that they sent us had an official certificate along with a picture of one of the members of the bear family.  The picture is packed away because of the move or I would share it with you all! I'm smiling just thinking about it.  Thank you Schmitz's, Albers and Demmans! Everyone should totally stop by and visit the bears next time you are at the zoo...better yet, snap a picture of your little ones in front of the bears and send it my direction!  One of my high school classmates actually did this, and I thought it was such a great reminder of how many people Charlotte's story has touched.  


And while you are at the zoo there is ANOTHER Charlotte memorial that you can stop by to see!  When we first found out about Charlotte's heart Matt and I both felt very scared and very alone.  I immediately started looking online for people who might have the slightest clue of what we were going through.  Lucky for me, I found an incredible woman named Jill (tears).  She was a total stranger, but we had so much in common...first and foremost the was the fact that her daughter was living with a very similar heart defect.


Whether she knows it or not, from the minute Jill answered my first email I knew that she was going to be one of my most important resources and friends through this whole journey.  It was such a blessing to find someone that could honestly say "I GET IT."  She quickly became someone that I could go to with questions, if I needed encouragement, to vent, or even just to share the the smallest of victories.  In the 20 months that we have known each other, we have only been face-to-face a handful of times, but we always keep in touch.  Some of my favorite text messages are pictures and updates on how her little heart warrior is doing!


So anyway, I got a little off topic there, but I wanted to give you a little background on my relationship with the family responsible for this...


There is a butterfly exhibit at the Omaha zoo and apparently you can make a donation and have a butterfly made!  My cousin sent me this picture of Miss Charlotte's butterfly --I love the way that the sun is shining on its wing.  For those of you who are in the area and want to check it out, I'm told that it is located in the garden below the main butterfly exhibit.  This might give you a better idea of what to look for...




Butterflies have become a big deal to me.  I see them everywhere I go.  Everywhere.  They make my heart smile even on the worst days and remind me that little Charlotte is always hovering near.  Thank you Jill, Brent and Talia...this was absolutely perfect.


I know that Charlotte would have loved to go to the zoo to see all of the animals.  We may not have gotten the opportunity to take her there, but that doesn't mean that it can't be a place full of memories!

Friday, September 16, 2011

All of Me

On the morning of May 31st, I sat down at this very computer and updated my Facebook profile with the following...

"Matt Hammitt, the lead singer of the Christian band Sanctus Real has a son that was born with HLHS. They recently launched a new nonprofit, the Whole Hearts Foundation to help children and families affected by congenital heart defects. Check it out....great song and a portion of the proceeds go to this organization!"

The song "All of Me" was the first track released from Matt's new album Every Falling Tear.  It came out that morning and immediately tugged at the heart strings of heart parents around the country.  To quote Matt, "Our natural reaction is to build walls between ourselves and the things that can cause us more pain.  But what if the thing that can cause you the most pain in your life is another person?  And what if that person is your own child?  You have to ask yourself...Am I willing to fully give my heart to someone knowing that I might lose a piece of it?"

Matt and I both knew that despite our greatest fears we would love Charlotte with every thing that we had...and thats exactly what we did.  Yes, we were scared, but amidst the fear we discovered a depth of love that we never knew existed.  

I posted that Facebook update on May 31st, about 20 minutes before we took Charlotte to the hospital for her lung scan.  Little did I know that my fears would become reality in just a few short hours and that our lives would be forever changed.  

As hard as it is, when I hear this song I have to comfort myself knowing that we gave ourselves 100% and loved without boundaries.

"All of Me"
Matt Hammit, Every Falling Tear

Afraid to love, something that could break,
Could I move on, if you were torn away?
I'm so close to what I can't control
I can't give you half my heart, and pray it makes you whole

You're gonna have all of me, you're gonna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gonna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start.

I won't let sadness steal you from my arms
I won't let pain keep you from my heart
Trade the fear of all that I could lose, for every moment I share with you

You're gonna have all of me, you're gonna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gonna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start.

Heaven broke into this moment, it's too wonderful to speak
You're worth all of me, you're worth all of me
So let me recklessly love you, even if I bleed
You're worth all of me, you're worth all of me

You're gonna have all of me, you're gonna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gonna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start

You're gonna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gonna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start


It's where I'll start 

The album Every Falling Tear was released in its entirety earlier this week with a portion of the proceeds going to the Whole Hearts Foundation.  Lucky me...I got it as a gift yesterday!!  I think that you should all go check it out!

Wednesday, September 14, 2011

Yummy in the Tummy

Charlotte LOVED to eat...


What!?!?!?!
That may have been one of the funniest things that has ever come out of my mouth!
In reality eating most often resembled this...
(OK, so maybe not that bad)
But this is pretty spot on.  
Bottle + YouTube = MIRACLE!
(I'm totally ashamed that I have admitted this AND have a picture to prove it!)
I thought that for the 14th of this month I would take the opportunity to tell you a little bit about what Charlotte liked to eat (and share some cute-as-pie pictures in the process).
Charlotte loved to smell cupcakes even before she knew they could be eaten.
Here she is dreaming of sweet cupcakes--Her Aunt Jessy and I bought them to celebrate the day that Charlotte hit TEN POUNDS!
She liked to eat Grandma Debbie's chocolate chip cookies...
and would give me crabby-pants looks when I took them away from her.
Speaking of cookies, Charlotte REALLY liked the Oreo that her Uncle Abe shared with her. 
 Chocolate cookies and chocolate filling!?  HELLO!  Whats not to like!
She liked Pez (or at least the Pez dispensers that she got the kids at daycare for Valentine's Day.)
She liked when PopPop would feed her whole slices of pizza.
Don't get me wrong, she liked "good for you" foods too...like strawberries,
and carrots,
 and birthday cake!
I cried the day that she ate mac and cheese, peas, carrots and watermelon.
Charlotte liked to eat books,
and barrettes,
and the string from our blinds.
She loved the taste of bows at Christmas time
and wrapping paper, too!
She loved to eat crayons
and sometimes snuck a taste of a {clean} wipe or two.
Her main source of protein was duck
but sometimes she would switch it up a little and try pork....
Get it?  Piggies?  Pork?  
Charlotte was known to go into food comas after a big meal.  
 Just look at that big belly!
 
So yes, Charlotte loved to eat...what she wanted....when she wanted!

I'm betting that today she's opting for birthday cake.

Happy 16th month little girl.  
Mommy and Daddy love you all the way up to Heaven and back.

Monday, September 12, 2011

This Was Our Normal {1}

I thought from time to time I would provide a little insight into some of the things that came along with being a heart parent/heart kiddo. It probably won’t be anything to riveting or overly deep, just a little something to give you a peek into our lives (and another way for me to document/remember all of the details of our crazy ride). I know that lots of people thought that Charlotte’s surgeries had “fixed” her heart.  She was doing really, really well (hence the incredible shock of May 31st), but we knew that even with surgeries, her heart would never function at the level of yours and mine. No matter how well she was doing, or how "normal" things seemed, there were bits and pieces of our daily routine that served as constant reminders of the craziness that was going on inside that little ticker of hers.

This Was Our Normal {1}

From the time she was two weeks old, our little Charlotte was on her way to becoming a human pin cushion. You see, Charlotte had a teeny tiny little shunt placed in her heart when she was only 1 week old. That teeny tiny little shunt was the ONLY way that her heart could get blood to her lungs…the only way that she had to get oxygen to the rest of her body.

To put it in the simplest of terms…

Any blockage in that teeny tiny little shunt (a clot) = No oxygen = Bad news

In order to prevent said disaster from occurring, Charlotte was started on blood thinners shortly after her first surgery. The medication was initially given to her through her IV, but was then switched to a subcutaneous shot (like insulin) that we could give to her at home. Yes, you heard me…we gave it at home. Ugh, I remember the very first time that I had to poke my little lady with that nasty needle…I’m pretty sure that I cried more than she did! You always hear stories about how AWFUL it is for a mommy to have to take her little baby to the pediatrician for vaccinations. Ha! Not only did I have to deal with the agony of my little girl’s tears, but I also had to swallow the fact that I was the one behind the big bad needle. Give me vaccinations ANY DAY!

The first shot was awful. I positioned myself looking away from her face (I didn’t want to see her tears or have her associate me with the impending poke) and as I tried to steady my shaking hand I just kept telling myself….”Kristen, you don’t have a choice. She gets the shot, or she might not live. You don’t have a choice.” It didn’t make it easier, but it totally took away the option of chickening out!

We would do these shots two times a day…every day…for 12 months.  Left leg in the morning, Right at night.


Charlotte was smart. Early on she would start to whimper as soon as we opened the alcohol swab that we used to clean her little leg. She knew that smell and what it meant. As months passed, however, the tears seemed to lessen. Let me tell you, Charlotte was TOUGH. Most times she would hardly flinch when she got her little poke. We could even sneak into her nursery, wiggle her little leg out of her jammies and give her the shot while she was sleeping! That’s a heart baby for you—TOUGH AS NAILS.


They are hard to see in these pictures, but see those little bruises on her thighs?  Those are from the shots. They actually look really good in these pictures.  


Alcohol wipes, syringes and sharps containers were our a part of our normal.  We hated them, but we accepted them because we had to.  


Anything for our Charlotte...anything.

Friday, September 9, 2011

Just Checking...

So...I learned today that the "subscribe" function on this blog hasn't been sending out emails to alert people of new posts.  When we moved last week our email address changed, and I'm wondering if that little change threw things off some how.  Anyway, I've been fiddling around a little bit (I fully admit that I have no clue what I'm doing...hence calling it "fiddling.")  I hope that its straightened out now and that emails start going out.  For those of you who only check in when you get an email, you have likely missed out on 2 or 3 posts over the past week.

Thanks Mama for pointing that out to me!

And since I can't have a totally boring "Chuck-less" post, here's a picture of the little lady.  Its one of my favorites ever.  LOOK AT THOSE EYES AND LASHES!!!

Thursday, September 8, 2011

Something for Bear...

I have a predisposition to being over-emotional (let’s blame it on genetics)…It has never really taken much to make me cry.

Heck, I cried one year watching a team celebrate after winning the College World Series. I hadn’t seen a single tournament game that year and I knew nothing about any of the teams involved, but they looked so incredibly excited as they were celebrating. How could that NOT bring me to tears!? Right?!

I cry happy tears.

I cry sad tears.

I cry gut-wrenching tears that make me feel dehydrated by the time they stop falling.

Lately the latter seem to be the ones I shed the most. Sad. Gut-wrenching. I guess that is what happens when you have a constant BLAH feeling that accompanies you 24 hours a day. Now don’t get me wrong…I don’t mope around every day. I’m at a point where I can smile, laugh, have normal conversations and such, but below the surface the sad is always there. I fully expect that it always will be.

While I seem to be functional these days, there is always the potential that something will come along and push those “sads” to the surface for all to see. I never know when that something will come along or what it will be, which makes it that much harder to be “normal.”

Today’s something was delivered courtesy of one of my favorite websites.

I love the website Etsy.com. For those of you who are unfamiliar with this site, Etsy is a self-described “hand-made marketplace" where you can find almost ANYTHING! For me, it was the perfect place to find all things adorable for my little girlie.

You might remember when my crazy beagle-dog Maybe modeled this headband before Charlotte was born….I got it from Etsy.


Here is my little Chuck at 2 and 1/2 months all girl’d-out in the same headband.


Then there was this AWESOME zipper heart shirt. The woman who makes these has a little girl that was born with a congenital heart defect. The minute I saw them I HAD to get one for little miss. Another Etsy score!


Another example? Here’s a look at the stickers that were DONATED by a wonderful Etsy vendor to help us with “Books for Charley.” As if I needed any more proof that Etsy and the vendors who sell there are awesome!



Today I logged on to Etsy and this cute little coat immediately caught my eye….

Toddler Teddy Bear Coat in Pink

Upon closer inspection I saw the following…

Toddler Teddy Bear Coat in Pink


Sigh…a pink and brown bear coat…

I guarantee you that despite its too-expensive-for-a-toddler price tag, Charlotte would have owned this coat. My little Bear in a bear coat? Can you picture anything more perfectly adorable?

Case in point…Bear in her original bear coat!


Again…Sigh…

So yes, today that tear-inducing something was a coat. A silly, silly, silly coat. I can’t stop looking at it and picturing my baby girl’s face peeking out from under that oversized hood with the button eyes.  I can see the big goofy grin on her face and her own sparkling eyes (which were about as big as the bear's button eyes!)  I can see it so clearly and I want so badly to scoop up that little bear and squeeze her with big bear hugs.  Tears, tears and more tears, all from a silly little coat...

I love you, Charley Bear. 

And speaking of that crazy little Bear, here she is with her Daddy cheering on the Packers in last years Super Bowl!  Even her little hat has ears!  Never did I think that a Packer's game to open up the NFL season would push me to tears...




Friday, September 2, 2011

Officially a Sioux Falls "West-sider"

Well it’s official….the papers have been signed, the keys have been exchanged, all of our belongings have been moved across town. We have temporarily left the world of home-ownership and are officially renters again. Weird.

Yesterday was a hard one. I woke up with a sinking feeling and for a majority of the morning I functioned on the verge of tears. Our new landlords seemed so excited to have us in their property, and I think they expected us to be excited as well. They don’t know our story...maybe then they would get that this isn’t our ideal, but rather a step in a “better” direction.

After lots of trips back and forth yesterday we finally got everything moved to the new place. I cannot believe how much STUFF we have accumulated in 4 years. Here’s what it took to move…

-One U-Haul to storage at Matt’s aunt and uncle’s house
-My mom’s full car back to Omaha
-2 U-Haul trips across Sioux Falls
-A full POD sitting in our driveway begging to be unpacked
-Matt’s Escape packed to capacity
-2 full loads in my truck (I hardly had room for the dogs on the last trip!)

As our items were slowly packed, there was one item that remained a constant in our house until the minute I walked out the door for the last time. A picture of Charlotte. It was the literally the very last thing out of the house, and I intend for it to be the first thing that goes up in the new place.


And speaking of that little angel, I did leave something of her's behind at the house.  The new buyers won't mind...I'm guessing that they won't even notice.  For the past three months I have delighted in seeing Charlotte's perfect little fingerprints on our sliding door to the deck.  I had to have been holding her when she made them because they are right at my eye level.  Most mommys are on a constant mission to clean up the sticky handprints that are an inevitable part of having kids, but in the days after we came home after Charlotte's funeral, it was things like that which I found myself clinging to.  I wash doggy slobber off of that glass constantly, but was never able to bring myself to wipe those prints away. 

Charlotte opened our eyes to what is truly important in this life…Family, friends, faith…and while “possessions” doesn’t fall anywhere near the top of that list of important things, it was still tough to leave that house behind. It was a great house and I will miss it. I can only hope that the buyers love it as much as we did and pray that they have endless happy memories there.

Thank you all for praying extra hard for us yesterday.  I hope that you all have a WONDERFUL Labor Day weekend.  Ours will be filled with lots of unpacking and of course a little Nebraska football!