The Little Heart That Could

Camdyn's six-week post-op follow-up appointment was on Thursday.  We went into it hopeful, wondering if it would be the long-awaited day that she we all would regain a little more freedom, but not so hopeful that we could be terribly disappointed.  We barely muttered those words of hope to each other, and definitely not within earshot of our little loves (why get her hopes up to have them shot down?).  But, hey, it was her six-week post-op follow-up.

Waiting at the lab and taking X-rays like a pro! 

We followed the same drill as before:  pack breakfast, fill up our coffee mugs, leave the house no later than 8am, hit the Lab for blood work, swing by Imaging for X-rays, then head to the Cardiology Clinic.  While there, they did her EKG and sent us to the Testing Dept. for her echo before returning.  All in all, it was a pretty smooth transition between everything, given the combination of crazy energy levels of our littles (a little boy, in particular) and the wait times in between.  

Sitting in our room at the Cardiology Clinic and a trip to the Big Red Heart!

After reviewing everything, her cardiologist determined that she looks great...that it is the best case scenario all around.  The BEST CASE scenario.  Praise God!!!  No fluid build-up, clear sinus rhythm, good blood pressure and muscular movement, normal diaphragm and BUN (blood work).  Her sats were registering at 98!  Her incision and other scars/scabs are healing nicely.  Next, we discussed the near-future plan for her recovery.  At her request, we can now offer her up to one liter of fluids per day (which is another very tall glass, or a bowl of frozen yogurt).  We have a plan for decreasing her lasix over the next 3 weeks (so now she will be off of them right before school starts).  We no longer need to hold her back from full-fledged playing (unless she begins acting/responding abnormally).  And the best part?  We can ease her back into being in public again.  This means that we can return to church (which we VERY HAPPILY did yesterday!), go out as a family (somewhere other than the hospital), and she can see her little friends...just as long as we are careful to do our best with keeping her healthy and not have her around anyone who is sick (a cough or cold could still cause fluid buildup and a return trip to the hospital).

We can return to "normal life" as a family.  She's the "Little Heart That Could," completely and solely by the solid grace of God.

Her diet is still restricted, and will be for some time, but she is now almost back up to her pre-surgery weight, and she never complains about missing out on food...and all the while, eating like a champ!  If you know our Camdyn, you know what a wonderful surprise of a treasure that is!

What was the very first thing she wanted to do with her our newfound freedom?  Select new paint chips at Lowe's, of course!  Some days, I think she'd rather do that than go to a candy store.  (Can you say "mommy's girl?").  She flitted around like a butterfly picking out her colors...I think I made her stop at 10.

So many colors, so little time!

We've often discussed the fact that those six weeks and two days of surgery recovery were the longest weeks ever...and at the same time, it flew by.  SO.  MUCH.  HAPPENED.  It really did drag on many most days, but we blinked and it was gone.  That's so crazy when we think about it (do I sound crazy?), but it really is true.  All the talk for so many months, several years, really, and it's behind us.  It's already behind us.  And we're planning our next trip to the coast for later this week!

God knew all along how everything would turn out, what it would all look like on the other side of this. He designed it.  He ordered it. He got us all through it.  What an amazing, awesome, divinely-inspired JOY it is to be looking back on it already, and in this way.  He was our bread, our air, our hope, and our strength through it all.  He used others to bless us tremendously (and He continues to do so).  We sought Him each step of the way and we were never given a single day without the reminder of His sovereignty in some way.  Jeremiah 28:13 says, "You will seek Me and find Me when you search for Me with all your heart."  It's true, friends.  Search for Him.  He may not answer when or how you expect, but rest assured that He will answer.  We are so grateful that His will included a steady, solid recovery for Camdyn.  SO GRATEFUL.  He never left us or forsook us.  Great is His faithfulness.

The challenge now is to remember those blessings and acts of grace each day going forward as we did so vividly then.  I don't want to take anything for granted.  I don't want to think in a few months how I've become desensitized just because it is far behind us.  I want to embrace each day as it is, blessings and difficulties.  I want to end each day thanking God for all of it...for the blessings He allows us to enjoy, and the difficulties He uses to make us grow.

Embrace today...and search for Him with all your heart.

"Grace-ful" Parenting

The title of this post started out as "Disciplining a Heart Kid" and quickly evolved as I typed the words.  So often as I write, my heart's thoughts become clear to me...and this post was no exception.

Disciplining a heart kid (or ANY child with a serious medical condition, for that matter).  It's pretty similar to disciplining a non-heart kid.  Similar, but with a twist.  We still want her to have manners, to learn selflessness, to choose obedience, and to have a positive attitude.  We want her to be a kind friend and share Jesus with others.  We want her to learn from her mistakes, to learn how to apologize and forgive, and to grant grace to others.

The difference can be seen or felt when she makes the wrong choices...when she chooses to disobey, to be selfish, or to behave unkindly.  We've always tried to discipline her like we envisioned we would with any other child of ours.  We've tried to withhold "special treatment" because of her heart condition during disciplinary moments.  Because her health has always been so good, that's been pretty easy to do.  We forget that she even has a heart condition at times...and sometimes, to a default.  There's been times when we have been too hard on her, too strict, and have expected too much.  

And then it creeps in.  The parental guilt. 

But it's not just the parental guilt of knowing our actions or words were too harsh.  It's the guilt of a heart parent who knows what an incredible gift their child is but has overlooked that in the moment of discipline.  We are so blessed that she is even here with us, that she is so healthy...that she's been through so much and come through it all so well.  It's the guilt of knowing how often we've sat with her in the hospital, begging God to just heal our little girl.  

We've always joked that she's incredibly strong-willed (man, is she ever) and that we just have to try funneling that character trait towards something positive...that it will serve her well in the future.  While all this is true, it can frustrate us to no end, at times. Sometimes, my frustration gets the best of me, and unfortunately, it shows.  Naturally, terrible guilt and remorse immediately follow.  I need to apologize to her...why was I so hard on her?

Any parent can relate to the parental guilt...and I certainly don't write this searching for sympathy.  This job of raising our "littles" is difficult...really really difficult.  But it has provided many opportunities for her to learn, receive, and practice grace.  She is so quick to grant grace...to move on and readily forgive the very same kind of behavior we discipline.  It's helped her see that nobody is perfect (not even her mommy and daddy), that we all sin, and we all need forgiveness...ultimately, that we all need Jesus.

There's no exception to that rule.  We all need grace.  But it's a question of whether or not we will receive that free gift.

Grace, grace, God's grace, grace that is greater than all our sin.

Grace.  The act of giving someone something they absolutely do not deserve.  Grace is always a gift.

Photo courtesy of Laura Tavarez Photography

More than many other things, I want my children to learn how to grant grace to others...even if one of the ways they learn the art of graciousness is through my mistakes.  I'm human, of course, so I know they'll certainly get lots of practice. Thank God for silver linings.

The Great Indoors

With being home so much this summer with two semi-squirrelly little rascals (one moreso than the other...who may or may not be named Maxwell), we have to use a little creativity to break up the mundane of the day in, day out, all day, every day at home.  And yesterday, that's exactly what we did.  A little "trip to the wilderness," if you will...for some "camping" in the "Great Out Indoors."

Just a tiny addition to our living room

That's a 4-person tent...in our living room.  A couple furniture pieces pushed aside, and our campground was already well underway (cue the "Staples" voice..."Well, THAT was easy").  We eagerly put our littles down for their naps, killed time while they fell asleep, then got right to work.  Once the tent was up, we hung the "night sky" around the room (AKA "twinkle lights"), and built our campfire (of twinkle lights and driftwood).  BAM.  Done.  But why stop there?!?!  With the addition of a tiny "Camp Kopper 2013" sign, an evergreen-scented candle, and some "Forest Ambiance" playing in the background on the computer (complete with chirping birds and a running stream), our campground was complete...with the usual modern conveniences of not leaving home, of course.

Camp Kopper 2013 - The Tent and Twinkle

Camp Kopper 2013 is complete with scent, sight, AND sound!

Once the kiddos awoke, I held them hostage in my bedroom until we were ready for the "reveal."  Max was SO EXCITED when he saw it. Camdyn didn't know where to look.  It was fantastic.  It didn't take long before they cozied up in the tent with the campfire in view.

Reading by the campfire

We BBQ'd chicken for burgers and ate dinner at our "camp table" (the dining table, of course - note: convenience), then played and watched a movie by the campfire (there were no walks to take, no lake to see, no energy-busting activity, so this was the next best thing...again - note:  convenience).

Max, picking at his dinner, Camdyn enjoying her dinner, and first s'mores of the summer.

We took intermission from the movie with some "toaster oven s'mores" before settling back in.  This was Max's first experience with s'mores...and it was funny.  He enjoyed his, but not without saying "eeeeeeeewwwwww" every time he got messy hands, face, shirt, table.  He's not a fan of food messes.  Hmmmmm.

Our version of "fat-free s'mores" for little miss

Gooey marshmallows make messy Max fingers

When it was lights out at Camp Kopper, Max found himself sleeping away in his crib.  The crazy kid would not settle down until we put him there.  Chalk it up to all the excitement.  The rest of us enjoyed a night of rest in the tent...by the light of the campfire.  

Morning brought us an early breakfast of pancakes and Eggo waffles for the kids and (our favorite) breakfast burritos for the two of us.  And coffee.  And then some more coffee.  Even camping at home brings a way-early wake up call.  The only remnant left of our campout by now, besides the pictures and memories, is the campfire, which we all agreed was just too darn cool to take down just yet.  Besides, I adore twinkle lights.

These three...<sigh>

And the best part of camping in the living room?  You don't have to clean up the tent before putting it away again.  And you can use your bathroom.  And your kitchen.  And there's no bugs to contend with or bites to try to ignore.  Win-win!!!  

A "Happily-Camping" Mama and her loves.

How about you?  Do you have any favorite indoor summer activities?  Or, have you ever had an indoor campout?

Pacing Ourselves

Since being home, that's what we've been doing.  Pacing ourselves.  We've been spending lots of cuddle time with our kiddos, eating breakfast at 8 or 9, staying in our pajamas until noon (on some days)...and we've been doing lots of just "hanging out."  In between a few house projects we've been "chiseling away" at (maybe we'll share soon?), and some periodic, friendly-faced visitors, we've been taking it easy.  The hardest to keep from becoming antsy is Mr. Max.  What can we say?  He's not even two.

Spending lots of time with books and blocks, and enjoying some science experiments!

Every time Phil goes out to the mail box, the vegetable garden, or the garage, Max volunteers as his shadow.  The kid LOVES to be outside.  Camdyn would be fairly content to be artsy and play dress-ups much of the day.  She practically LIVES in her pink dance costume with the fluffiest tutu you'll ever see.  EVER.  And yes, that's a promise.

Almost always happy to play together.

We've tried to break up some days by doing little activities here and there...a tiny garden of crystals ("just add water!") and a kit of slime (it was bright green) made for a bit of excitement and some giggles.  We celebrated our indoor 4th of July with some delicious food, fun decorations, and a Dollar Tree bag's worth of glow sticks.  It was a hit.  (Thanks for spending it with us, Lex!!!). The kids were up until 10.  And we still have a couple of surprise activities for them up our sleeves.  

Making homemade fro-yo, a little painting project, and a bit of reading and building.

Sneaking outside for a little muddy, chalky, watery fun!

We attended Camdyn's second follow-up cardiology visit this past week...she passed with flying colors.  Praise God!!!  All of her "numbers" look fantastic.  For now, we keep "doing what we're doing" and follow up with her cardiologist in another week and a half from now.  No lab work for two weeks?!?!  That was music to her ears.  And who am I kidding?  It was music to our ears, too...even Max, who isn't exactly a huge fan of spending 3 1/2 hours at the hospital for testing and appointments.  But who can blame him?

We can't even begin to express how thankful and relieved we are that we're on "this side" of her Fontan.  It's the one we've been dreading more than any other for almost six years.  SIX YEARS.  That provides a lot of time for growing anxious over something...which provides a lot of time for God to give a peace like nothing and no one else can.  It's also a lot of time to learn to rest in His sovereignty and promises.  How quickly life can change, at the drop of a hat.  That's what it was like when we found out she had HLHS.  That may be a story for another day that we'll share, but it's sure taught us a lot.

More than anything, we recognize how blessed we all are that everything has gone so relatively smoothly this far.  And I feel like I keep repeating myself about that, but it's the honest truth.  We attended Camp Taylor (for "heart kids" and their families) for the first time last summer, and we learned just how blessed we are (in addition to having a wonderful time).  So many of these kids have multiple defects, or other health hurdles in conjunction with a heart defect that they couldn't be counted on one hand.  That also means they're on multiple medications that they're taking around the clock.  The only heart-related medication that Camdyn is taking is a baby Aspirin every day (she will eventually be off of her lasix).  You're soooo lucky, we heard.  No way....really?? Wow, we were told.  I think that's when we realized the shallow waters we waded through, compared to the depth of water for so many others.  With her doing so well, it can be easy to forget that she's a heart warrior.  It's something we're definitely trying hard not to take for granted.  It could change so easily, so quickly.  But for some reason, God has blessed us with a smoother road than many others for the last six years.  We hope and pray that this track record continues.

We have at least four more weeks of being home bound...six more at most.  School begins soon.  Maybe we'll be able to squeeze in a quick trip to the coast before then, maybe not.  But we're thrilled to be enjoying the "relaxing" half of summer...and so thankful that we can.  

Don't take the little things for granted, friends.  They add up to one big blessing that you might overlook, otherwise.  Count your blessings...each one, great and small.

Healing and Heartache

Camdyn is on the mend.  Her torso shows more skin than bandages and attachments, now...a reverse of what it was exactly three weeks ago.  She's bouncing around and being goofy 95% of the time.  If you didn't know her and couldn't see her fresh scar, you'd actually be unable to tell she had open heart surgery three week ago.  Last nnight after her first regular bath in weeks, I dried her off in her hooded, pink, bunny towel and she hugged me...she hugged me tight.  She's always been an affectionate girl.  But we've been very careful not to be too rough physically.  It was a really good hug.  A perfect hug.  One that I longed to give her since three weeks ago.  And it felt wonderful to embrace her and be embraced by her in return.

And then I remember.  I remember the other rooms in the PICU filled with children.  Children who came in after we did, and children who had been there before we ever arrived.  And my heart aches.  It aches for the children whose families don't visit.  It aches for the parents who stay at their child's bedside.  It aches for the babes who have only ever been able to call the hospital "home."

And I am reminded of my own words.  Words that sting when I call them to memory.  Words about our lives being at a standstill, from this post.  And they sting because we are now on the other side.  Our life has resumed (mostly - at least we're home!)...and many of the others?  Their lives are still at the awful standstill.  They're still waiting. They're still hopeful, prayerful, discouraged, exhausted, uncertain.  They're still searching, even.  And I feel their pain.  Then I feel torn.  Torn between complete joy that my little heart warrior is doing so well, and deep sadness that many others aren't.  And then there are those that have lost the opportunity to fight.  They've lost their precious lives. 

And I am burdened by what their families must be feeling, though I don't know them directly.  Then, I wish that we did.  That we could bear their burdens with them (Galatians 6:2) and somehow help ease their pain, to be there to comfort them.  And in reality, there isn't much that we can do.

But, we can pray.  Boy, can we pray.  We've been on the receiving end of those prayers from those we've never met...many times.  Prayers from people who know the people that we know.  Prayers from people who know our "screen names" and little else.  

But we could feel their prayers.  

Our hearts were full and our prayers were answered, each step of the way.  There's safety in numbers, friends.  Pray.  Then pray some more.  Keep the prayers flowing as easily as the breath within you.  God wants us in constant communication with Him.  Let's do it.  Let's pour our prayers out to the Father who is asking us to do so.  Give Him whatever is on your heart and in your mind...even if the Holy Spirit has to do it for you.  

It's what we're called to do.

Pray for your family.  Pray for your friends.  Pray for your neighbors.  And pray for the people you've never met.  Chances are, at some point, a perfect stranger has said a prayer for you, too.

The House of Many Blessings

Today was Camdyn's first post-op follow-up visit at the hospital.  She knew a "poke" would be coming, that the sutures would be removed, and the steri strips taken off.  She was hesitant, but in generally good spirits.  Our first stop was at the lab for some bloodwork so they could check her BUN (blood urea nitrogen) levels to make sure her kidneys are functioning well on the Lasix she's taking.  After some waiting, then a few short whimpers, the poke was done, with no real crying.

HALLELUJAH!  

Then we were off to imaging for her chest X-rays (she walked around like she owned the place!).  A bit more waiting and a couple quick pictures (plus 3 rolls of princess and puppy stickers) later, we were able to see a perfect lung AND diaphragm.  

HALLELUJAH times two!!

During her appointment, she also had an EKG (it showed sinus rhythm!!!  Can I get another HALLELUJAH!?!?).  Her sats (oxygen saturation level) were at 99!  (Any normal person sats at 100, but before her Fontan, her sats were really good at 86).  Once the PA came in, she told us everything looked beautiful.  From the BUN level to the X-ray to the EKG, it looked beautiful.

Music to our ears.

She removed the three stitches that had been put in once the drainage tubes were removed (remember the tubes that were as big around as my pinkie finger?), and then each of the steri strips covering her 6-ish-inch incision site.  Dr. Petrossian has done it again...the incision looks beautiful.  Neat, tidy, and healing well.  So many joys with today's appointment.

Our usual "world-exploration"

I do realize that I never provided a final "hospital update" before our discharge (chalk it up to the excitement of going home!).  She had been in a solid sinus rhythm for a day and a half!  We discussed her future care with the PA that was following up with us before discharge.  He said it was still possible that she could need a pacemaker in the future, but only time would tell.  At some point in the near future, she will probably wear a Holter Monitor to record her heart over a 24-hour or more period for an accurate idea of what it does.  The only thing that could potentially be medically-attributed to her rhythm issues would be that one of her chest tubes was putting a bit of pressure on her heart, and once they were all removed, it took some time for her heart to remember what it needed to do.  I'll go with that.

When we got to the hospital, it felt like we had never left...it'd only been 3 1/2 days since discharge.  But while we were waiting in between offices, I realized that on this exact day, three weeks ago, my heart was semi-permanently in my throat.  My lungs were forgetting how to breathe.  We had spent 6 hours going through all the pre-op procedures to get her ready for the OR in the morning.  It seems like an eternity ago already, in some ways, but then, just like it was yesterday.  We are SO GLAD to be on this side of her Fontan, and incredibly blessed that she's doing so well.

We'll continue weekly appointments for the rest of the month just like today, barring any outstanding issues.  She will remain on the low-fat diet and fluid restriction for the foreseeable future.  And we will continue spending quiet time at home together (along with moments of "Camdyn, honey, settle down, please.  You're getting too wild and crazy...take it easy, turbo!).

We've seen so many blessings throughout this whole process...more than we ever could have anticipated.  Our sweet pea has been blessed by those around us exponentially (which then, of course, blesses us!).  And the blessings haven't just come from friends and family, but they've also come from friends and family OF our friends and family, as well as new cyber-friends!  The encouraging power of a kind, uplifting word seems so simple, but it can make a huge impact, and that's exactly what it's done.   We've been privileged to connect (online) with more people who have been in our shoes in some way.  The blessings have poured on us, showered on us, and drowned us in complete gratitude for the people that God has put in our lives...in one way or another.  Thank you, friends.  You've blessed us tremendously throughout this whole process.  And while the surgery is done and recovery is underway, it isn't the end of the road.  We aren't out of the woods yet (I don't think we'll really ever be).  We don't know what the future will hold for us as a family, or for our little girl and her heart.  But we are so proud of our little CHD Warrior.

And we'll take it one step at a time.