3.20.2014

Learning

We're learning a lot these days.  The biggest learning lately seems to be happening on the baseball field, although Derrick isn't the only one learning from this whole experience.

Tonight at the end of practice the coach had them run the bases.  The first two times Derrick crossed home plate (well, he didn't actually cross...we're working on that concept) he had a huge smile on his face.  The third time he was struggling some.  By the fourth trip of non-stop running around the bases my boy had slowed down a good bit.  He was the only kid out there still making his way around.  The rest of his team had finished and he was rounding the corner of first base, but he kept trucking along.  Those little legs were moving and his arms were pumping.  I could see the determination on his face...eyes straight ahead, tongue poking out...that's D's determined face.  He was going to make it around just like every other one of his teammates. 

And he did.

And I was in tears as he did it.

It took every ounce of control I had not call him back as he started that fourth lap.  As soon as his team did their little huddle I ran out on the field and asked him if he was ok.  He was opening his drink and said, "I'm tired!"  Nothing about being out of breath, nothing really at all.  I think more than anything his legs were probably pooped because he's never run that much in his life.

I am so proud of how much effort he's putting into baseball.  He really loves it.  He listens to his coaches, he tries hard and he does everything the other kids do, even though he's always the last one finished.  He's learning the concepts of the game and what it means to be on a team, and I'm learning how to step back and trust him a little bit.  I'm learning to trust him to listen to his own body instead of rushing in and limiting him.  It's hard though.  I want to see him succeed more than any person in this world, and I don't want to hold him back or embarrass him because I'm afraid he can't do it.  Because as he proved to me tonight, he can.  He's not the fastest but by golly he's the most determined.  And I think that may be even better.

They had their Opening Day game Saturday (which was hilarious, by the way!).  I took my big camera, pulled it out at the beginning of the game and realized I had no camera card.  Ugh!  Crappy phone pics it had to be...


And speaking of learning...this priss has now decided she should be in charge of her outfits and insisted on this ensemble this morning.  She's such a mess. 
I'm trying to learn to let go a little there too, but we have some color coordinating lessons to go over.  :) 

Happy first day of spring!  Bring on the sunshine!!

3.19.2014

A New Normal?!

Yesterday was Derrick's three month cardiologist check up.  He woke up in kind of a serious mood.  

His sats were 92 at first, then popped up to a whopping 96!  We're still thinking his fenestration has closed on it's own, so that's great news!

He had an EKG which also came back very good!  Can't you see the good news all over his face?

Derrick gained a whole 1.4 pounds over the past three months, which puts him at 31.4 pounds now!  He's also just over 39 inches tall, which meets a mega goal we've had for a long time.  We have a trip to DollyWood coming up soon that he's been "eating" for, and he officially met the mark!  Now he thinks he doesn't have to eat anymore.  :)

Since we left Jenny Kate at home with Papaw, we took D to Frankie's to cash in on a gift card to ride go-karts.  He finally got a little excited.  A smile!

Sadly, the go-karts didn't start until noon, but he was completely content to spend his money (and then some) in the arcade.  We spent a lot of time at "Sink It."  It's pretty much a family friendly version of Beer Pong, but they're pretty generous with the tickets for this game and it was fun for all three of us so it was a win-win. Justin and I are way more into winning tickets than the kids are!  Ha!

This little simulator was a big hit.  We let him ride it to see how he liked it since we're heading to DollyWood soon.  He LOVED it!  I think he's ready for some roller coasters! 

Long gone are the days when we could plop him on a game like this and him have fun without us having to pay.  Ha!  The kid can no longer be fooled! 

With the last bit of his money he wanted to win Jen a stuffed animal.  He is seriously so sweet to his sister when he wants to be!  That sweetness even convinced Justin to load a few more dollars on his card to try a few more times....and fail.  But it's the thought, right?!

We had a fun morning with our boy, especially since we got a good report from the doc.  We actually got a see you in SIX months this time!  In the past 5 and a half years a cardiologist has looked at Derrick's heart at least every three months...and now....SIX!!  Holy cow!  I have mixed feelings about going that distance.  I'm so super happy that he's well enough to go that long between visits, but there's that part of me that feels some comfort when his wild little heart is at least listened to more often. 

While we've finally made it to this new "normal" phase of life, we still have some things to watch for and decisions to make.   The Fontan is by no means a final destination.  Yes, it's been our goal for a loooong time, but he's not "finished" yet.  He never will be.  The series of surgeries Derrick has now completed are palliative, which means they relieve symptoms and allow him to have a more normal life, but they are not a cure.  The Fontan has been known to cause liver damage, PLE, plastic bronchitis, and a host of other complications. 

Our goal right now is to stay ahead of the game and do our best to make sure Derrick's quality of life stays as wonderful as it has thus far.  As his parents, it's our responsibility to make sure he's proactively monitored and not wait until a problem presents itself, which often times is a little late in the game.  I know Derrick is held tightly in the hands of our Great Physician, but He has given us great resources here and we want the best for our boy.  Over the next little while we'll be researching and questioning, trying to figure out exactly where we need to go from here.  This is something Justin and I have been discussing for the past year or so, and now feels like the time to figure it all out.  We sure would appreciate your prayers to continue for Derrick and for our next steps for him. 

Gosh, we sure do love this boy to pieces!!



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3.13.2014

Be Still, My Heart


Today is a big day.  

The first practice. 

We have a super excited boy who has been marking the days off the calendar counting down to baseball for two whole months. 

This is it! 


Knock it out of the park, big guy!!  



I promise I'll try not to cry.



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2.01.2014

February...Not Just a Month Anymore

It's February!

In a normal life it's another month, no biggie.  It's trying to remember to write a '2' instead of a '1' when you write the date.  It's beginning the countdown to spring...and spring break!  It's thinking about romantic plans with candle light, chocolate, wine and roses (do people still do that?! :).  It's February.  It's Valentine's Day.  It's just another month.

But once you've entered into this exclusive club that no one wants an invitation to, the month of hearts takes on a whole new meaning.  The "Heart Family" club changes all of that.  

February is no longer about chocolate, fine wine and fancy restaurants.  Now, February = AWARENESS time!

February is CHD Awareness Month, and in case you didn't know:  

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 leading cause of all infant deaths in the United States.

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. 

Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood. (Facts via CHF)

Until I became a "heart mom" I had no idea how everywhere CHDs are and how many birthdays they steal.  Other than following the journey of sweet Emily Mae when I was in college, I had no idea babies even had heart surgery.  I guess there was some foreshadowing there.  Emily Mae didn't even make it to her first surgery, much less her first birthday.  At least I had heard of heart defects before we were told "There's something wrong with your baby's heart," but many people who hear those words have no idea that babies are born with heart problems.  Those are for old people!  

If you're reading this obviously you're aware that Derrick was born with multiple heart defects.  What you may not know is how many kids there are walking around with long silver scars hidden under their shirts.  As you know, they don't look sick.  They look like normal kids, not sick at all.  They may be on the smaller side, or sometimes if you look closely you may see a tinge of blue around their lips or under their fingernails.  But if you didn't see that scar you would have no idea of the complexity that beats in their chest.   

Our kids looking normal is a blessing and a curse.  If they looked sicker then more people would know about them.  They would know about their struggles to simply walk up a flight of stairs without having to stop to catch their breath.  They would know that getting them to grow is what feels like an impossible struggle because their hearts work so hard to keep their bodies alive that they're too tired to eat.  They would know that nights before yearly, monthly, sometimes weekly visits to the cardiologist are sleepless and filled with "what ifs".  And the paranoia of the child getting sick....unexplainable.  I literally cringe when I hear people causally chatting about their child recently being ill yet playing with or near my child.  A simple illness could land Derrick in the hospital and it could be awful before we even had a clue what hit us.   I know it's not that people don't care, it's that people don't know.  And that needs to change NOW

I will never forget sitting in the parking lot before going in to meet the pediatric cardiologist for the very first time.  We had been told the day before that there was something wrong with our precious unborn son's heart.  As we sat there, both of us terrified to get out of the car, we prayed.  We prayed...begged...that there be something that could done so we could bring our baby home and watch him grow up. 

If I had control of the world no babies would ever be born with broken hearts.  The words "congenital heart defect" would come up with nothing in all of the search engines.   Sadly, yet thankfully, I do not have all control.  I do know The One who does though.  From the time Derrick was diagnosed at 24 weeks gestation we have always prayed that he doesn't suffer in vain, but that his fragile little heart and life be used for God's purpose and to bring Him glory.  

The way we feel we've been led to do that is through Hope for BraveHEARTS.  We, along with several other families, started HBH to raise awareness and money for CHDs.  To date we've donated over $49,000 to MUSC's pediatric cardiology research department.  Of course that's a drop in the bucket of billions of dollars needed, but it's something.   CHD prognosis has come a long way over the last thirty or so years.  There are very few adults who have hearts like Derrick's.  It's very likely that had he been born 30 years ago he would have been sent home to die.  Instead, we were filled with hopeful options when we found out about his heart.  

Someday they'll figure out a cause and a cure for CHDs, but until then, we have to do our part.  Please, tell someone about congenital heart defects.  You can share the facts, you can share Derrick's story, you can tell a pregnant mama to make sure she doesn't leave the hospital with her new baby before they do a pulse ox check on him.  You can get involved with Hope for BraveHEARTS and help us raise money for CHD research (and BraveHEART Baskets!!).  

It just so happens that Saturday, February 8th is our annual pancake breakfast!  It's a super easy way to help us raise money.  If you're local, grab your friends and family and come eat pancakes for a great cause.  
 (And meet X-Factor's Carlos Guevara!!)


If you're not local but want to donate, you can visit www.hopeforbravehearts.org and donate through paypal or mail a check to HBH PO Box 2924, Irmo, SC 29063.  If you want to do a fundraiser somewhere else, or collect items for the baskets or help us with the next fundraiser....WE WANT YOUR HELP!  We'll beg for it.  Email me!

It still makes me weak in the knees to think about my baby like this:

and this:

and this:

CHDs stink.  They stink for everyone involved.  Jenny Kate just saw these pictures and said, "Is dat Bubba?  I don't like my Bubba like dat.  Get dat off him."  They affect everyone, even the little people who you think don't have a clue. 

A minute (or a meal :)  is all it takes to share a story, to raise awareness.  It could save a life.  I can bet you anything you don't have to look far to find someone with a special heart.  And if you can't find anyone right now give it some time...because you will.  These sweet heart babies are everywhere and they need your voice.  We all do!!  

Happy heart month!

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