A Big 14th

February 14th is a lot of things...

Valentine's Day

The last day of CHD Awareness Week

The 21 month anniversary of the best day of my life

So how do I tie those things together into the perfect post?  Good question!

The 14th is always a hard day for me.  It should be a day where we are celebrating another month with Charlotte, yet here we find ourselves, 21 months after her grand entrance into this world...with empty arms.  I'm sad.  Its a day full of LOVE yet I have this giant empty space in my heart that is hard to ignore.  I've been thinking about this post for awhile and none of my ideas really felt like they were "good enough" to convey the range of emotions that I'm feeling...

Then I checked the mail yesterday and found this...

Those perfect little hands in the center of the heart belong to Charlotte's heart friend, Claire.  I mean, really...how SWEET is that?  There was a note included, and I don't think Claire's mommy would mind me sharing a little bit from it.

"Claire and my mom were doing some arts and crafts the other day.  When I went to pick Claire up, my mom showed me what they had made.  I immediately thought of Charlotte because it looked like Claire's hands were angel wings on the heart!  Here is an early Valentine's Day present from Claire to you in memory of her heart friend."

Tear.  Thank you Rebecca and Claire.

Remember my first post for CHD Awareness Week?  You know, the one where I spilled my guts about my confusion over how I "fit in"?  Well, that little Valentine says it all.  Once a heart mom, always a heart mom...and there is no way that my heart family will let me forget that!

I hope that you all have a very happy Valentine's Day filled with crazy amounts of love.  

And as for you Miss Charlotte...

While a part of my heart wants to be sad today, my mind keeps going back to how much LOVE and HAPPINESS you brought into our lives.  And that love just continues to grow.  I didn't know it was possible, but I continue to love you more and more each day even though it has been months since I have felt your weight in my arms.  After all, it was YOU who really taught me how to love with every ounce of my heart.  Happy "Valentine-Birth-aversary" baby girl.  Mommy and Daddy LOVE YOU like crazy!!

Valentine's Day 2011 (9 months old)

Her Daddy was her FAVORITE Valentine!

 All smiles!

 She thought she would try out a more exciting chair pose!  Such a silly girl.

 

**Check out Claire's blog right HERE!  She is truly a little hero and has overcome prematurity and some significant liver cysts on top of her CHD.  We think she's pretty awesome!**

HOPE

My CHD Awareness Week posts were definitely lacking this weekend (SORRY!).  The good news is that there are still TWO more days for me to share some information with you!


Let me just say that I love today's post. 


I want to share a video with you that I saw a few weeks back.  My intention right from the start was to share it with all of you here in honor of CHD Awareness, but as the weeks passed my memory let me down (dang baby brain!) and I totally forgot about it until I saw the video pop up on another heart mom's blog last week (Thanks Jenny!)  


Sit back and be entertained by little Anna.  Smiles are guaranteed!

Anna is a perfect example of why there is so much HOPE in the CHD community.  Never would you look at her and guess that she has such a crazy little "robot heart."  =)  She looks healthy.  She acts healthy.  She is an inspiration and a model of what all heart parents pray for for their children--a "normal" life (or maybe its best to say a "well-adjusted" CHD life!)

My hopes for Charlotte were simple. 

1)  I wanted her to be happy.  Check!

2)  I wanted her to feel loved.  Check!

 

3)  I wanted her to be PROUD of who she was...battle scars and all.  Check!

4)  I wanted her to grow old and to be able to shout "TAKE THAT, CHD!"

I suppose I'll have to settle three out of four.

In the past week I heard of 2 more little angels that earned their wings after courageous fights with CHD.  While we have so much HOPE for the future of heart kiddos, we are constantly reminded that there is a lot of work to be done to help support this hope. 


I know that you are all busy people so I won't direct you to a million different CHD-related websites, but I will share one to get you started if you're interested!  Click HERE to be directed to The Children's Heart Foundation.  The website is full of great information, not to mention a video (~17 min) that covers lots of the basics.  And a special BONUS...the video also features our little heart buddy Logan!  His mom Stefani is the genius behind the blog event "Every Heart has a Story" and is also a part of the Pinterest project I mentioned last week.  I cry every single time I see her talk about Logan in this video.


We NEED increased awareness.

We NEED everyone on board with newborn screening.
We NEED more funding for research.
We NEED CHDs to be recognized for what they are...the leading cause of infant death in the United States.

We NEED HOPE.

Ultrasounds...More than a Boy/Girl Thing

Just a little over a year ago Matt and I saw our little Charlotte for the very first time at my 20 week ultrasound.  What were my expectations from that appointment?


1.  Get a good view of Baby Ritchie #1
2.  Catch a glimpse at what was going on between Baby Ritchie #1's legs.
3.  Have them tell me that everything looked "perfect" and send me on my way.


Yup.  That was pretty much it.  I mean, what else was there to be concerned about?  I was healthy and my pregnancy had been pretty "by the book" up to that point.


When her little figure popped up on the ultrasound screen I was covered in goosebumps and had a smile plastered to my face.  I remember looking at Matt like "are you seeing this!?"

She was beautiful...even in grainy black and white.

Being my first baby, I didn't know how long an ultrasound was supposed to take.  It never dawned on me that something could possibly be "wrong."  I didn't come prepared with any questions to ask.  I just assumed that everything was as it should be.

Then they told us that there was something wrong.

Something with her heart.

Our world was forever changed.

Next week Matt and I will walk back into that same ultrasound room and have the opportunity to "meet" Baby Ritchie #2.  We're excited.  We're nervous.  We're (or at least I am) slightly terrified.  We know more this time around.    What are my expectations now?

1.  To find out if our baby and its little heart are healthy.

2.  To see if there are any concerns about growth or development.

Yup.  That is pretty much it.

Funny how priorities change.

To continue my CHD Awareness Week posts, I want share a document with you that EVERY expecting mama should read before a 20 week ultrasound.  Share it with your pregnant friends.  Have them print it out and take it with them.   IT'S ALL ABOUT EDUCATING YOURSELF!

Click HERE for a list of questions to ask during a 20 week ultrasound.

On a separate note - I decided to make a quick trip to Charlotte's cardiologist's office this morning with some treats for CHD Awareness week.  Vanilla Oreo cupcakes with Oreo cream cheese frosting.  YUM.  And yes, I was up until midnight making those little heart toppers.  Sleepy, but worth it!

As hard as it is to walk through those doors without Charlotte, I'm always happy to see everyone who has been such a HUGE part of our life for 2 years.  As much as I hate that we had to meet under the circumstances that we did...I consider us blessed to have each and every one of them as a part of our family.  

Do You Pinterest?

Pinterest (Actual definition): A virtual pin board that lets you organize and share all of the beautiful things that you find on the web.


Pinterest (My definition):  Internet crack.


I will freely admit that I have a bit of an obsession with this site.  When I first came acrossed it I submitted probably 30 requests for an invite before I finally got frustrated, joined the Pinterest Facebook page and pestered people until they would share the love.  Now, almost a year later the Pinterest rage has totally caught on and I am still just as crazy about it.  I used the site to help me plan Charlotte's "Cute as a Button" birthday party, have taught myself how to sew a few things, made lots of yummy treats, and now am putting together ideas for Baby Ritchie #2's nursery.  What other websites have that much utility!?


Just when I thought that Pinterest couldn't get any better, along came an amazing idea of a fellow heart/angel mama.  She, along with a few other heart mom's from across the county are helping families like ours promote awareness for what else...

CONGENITAL HEART DEFECTS!

If you are already a Pinterest member, go check out the "Faces of CHD - Congenital Heart Awareness Week" board!  It is FILLED with inspirational stories of kiddos and adults who have been affected by congenital heart disease.  If you aren't a member, send me a message with your email and I'll try to help out with invitations (as much as I can anyway!)  The board is filled with smiling kiddos proudly showing off their battle wounds, children that you would never guess had such sick little hearts inside their chests, and also quite a few angels who had their hearts made whole early.  At last update there were almost 200 stories pinned!  YES 200!  I've been sucked into this board and have literally spent hours reading others stories...such amazing kids, adults and families.  I also have a personal "Faces of CHD" board that links up to lots of our personal heart friends as well as other angel families that I hope to learn more about. 

I was all over this idea from the start and got Charlotte's story submitted right away.  If you click on the link below you will have to scroll down toward the bottom to find her.  Just look for girl with a goofy grin and her favorite red Nebraska hoodie (like father like daughter!).

Check out Pinterest HERE or click HERE to go straight to the CHD Awareness board!  And feel free to re-pin our stories to help raise awareness!  I had never heard of CHDs before our 20 week ultrasound with Charlotte and when we learned of her broken heart we felt so scared and alone.  Each and every one of these pins shows that we were anything but alone...




****OOPS!  Almost forgot...If you have a heart story and would like to be included in the Faces of CHD Pinterest board, click HERE for the how-to!***

Once a Heart Mom...

After Charlotte earned her wings, I struggled (and still struggle) with lots of things...

Questioning my faith.

Jealousy.

Learning how to live again without my little girl.

Trying to laugh or smile without an accompanying feeling of guilt.

Learning how to...well...function!

But there is also a struggle that I've never really talked about here before (and one that has my eyes filled with tears just thinking about)...

I continually struggle to figure out how I fit in.

I'm a mother with no visible child.  A heart mom without a warrior to fight along side.  

A mommy to an angel.

For almost a year and a half I was 110% immersed in the heart world.   I dedicated myself to researching and learning all that I could about CHDs.  I reached out to other families who had been down the road before me, as well as to others who were just starting their journey.  There have been countless hours spent in hospital waiting rooms, the pediatric intensive care unit and doctor's offices.  I have seen my daughter sedated, paralyzed and intubated on more than one occasion.  I have literally seen her beating heart through her open chest.  A heart mom's normal is different than most... 


Then all of a sudden I woke up one day and my little girl was gone.  Her crib sat empty and I was left wondering....

"Now what?"

How could I possibly relate to other moms? 

Would heart families be scared off because our story has the ending that they live in fear of  

EVERY. SINGLE. DAY.?

Would all of the incredible people we met along the way--heart families, doctors, nurses--simply move on like we never existed?

Would the heart world just keep on spinning, leaving us behind?

I think that these thoughts will always be in my mind to some extent, but I'm slowly learning how I fit.  I'm discovering who I am and finding new ways to stay a part of the community that has been so very important to me.  My heart family is still intact and surrounds me with LOVE and SUPPORT like only they could.  I'm doing things to honor Charlotte, keeping her memory alive and trying to give back to those who gave so much to us. 

A part of my responsibility as a heart mom is to make sure that all of YOU are informed--keeping you up to date on issues like CHD screening in newborns and spreading general awareness for America's #1 birth defect.  You knew I would get to my point eventually, right?!

February 7-14 is Congenital Heart Defect Awareness Week and I thought that I would take the opportunity to share some CHD facts, as well as some amazing stories with you!

Get educated - have a voice - spread awareness!

(CHD facts provided from The Children's Heart Foundation)

Incidence, Morbidity & Mortality


•Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
•Congenital heart defects are the #1 cause of birth defect related deaths.
•Congenital heart defects are the leading cause of all infant deaths in the United States.
•Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.


Lifelong Disease


•Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
•There are an estimated 2,000,000 CHD survivors in the United States.
•For the first time, more than 50% of the CHD survivors are adults.
•10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.


Economic Factors


•91,000 life years are lost each year in this country due to congenital heart defects.
•The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.


General CHD FACTS


•More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
•There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
•In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.


Research Allocations & Impact


•Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
•Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
•Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
•The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.
•In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.