My Heart's Song

Do you ever wake up first thing in the morning with a particular song playing in your mind?  Even a particular Bible verse?  It happens to me all the time.  There would appear to be no rhyme or reason for it, other than the fact that our Heavenly Father placed it there for His own purpose...whether its one for us to dwell upon, one that convicts us, or one that should be shared with a particular person in our lives.

Camdyn reminded me of this when she was singing one of her favorite Christmas songs (O, Night Divine/Fall On Your Knees) before school, as she got ready in her bedroom.  When she came out of her room, she said that God had just put that song in her head this morning, so she had to sing it.  The girl does love to sing.  And her voice is beautiful.  But she sings because it's in her head (or heart), and she has to "get it out."  Not because she doesn't want it there, but because she can't help it.

During our consult with Camdyn's surgeon, God gave me one verse I needed to hear (and repeat) during those hours of uneasiness (and thereafter).  And for Camdyn's Big Red Heart Day, God had put a song in my heart that I kept singing to myself over and over. These helped me to stay focused on what was important...that Camdyn's health was completely in the palm of the hand of a sovereign, loving, and gracious God (and still is).

Regardless of how we sound when we sing, or who might hear us doing it, God puts these songs on our hearts for a reason.  It's always to glorify and worship Him, but sometimes He has other motives, too.  Oftentimes, these words are to be shared.  You really never know who needs to hear those words, so that's what I'm going to do...share with you the song that's been in my heart.  And I may do this from time to time...just a quick post with the song (or verse) that's playing within my soul.  Lately, it has been this song that we sing for worship at our church:

Turn your eyes upon Jesus

Look full in His wonderful face

And the things of earth will grow strangely dim

In the light of His glory and grace

Turn your mind upon Jesus

Think on the truth that is light

We will bow our hearts to the Lord of life

And find peace in His glory and might

Turn your heart upon Jesus

The power of our Lord is our peace

With a humble heart we will praise His name

We grow less that our Lord may increase

We grow less that our Lord may increase

Is there a certain song or verse that's always with you?  Do you find yourself singing His praise aloud without even realizing it?  Share it!  And sing on!  You never know who will be touched by those words.

Happy Friday and almost weekend, friends!

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.

Life...In The PICU

Today marks a full week since surgery day.  Seven days.  Seven days of being in the hospital.  Seven days of encouraging her.  Seven days of watching the monitors.  Seven days of talking her blood pressure down when she's upset.  Seven days of wandering between two places: pins and needles, and complete peace and hope.

Seven days.  And I'm feeling spent.  Discouraged.  Exhausted.  Frustrated.  Trying to be trusting and hopeful.  Trying to be positive.  Trying to take it a day at a time.  But it's difficult.  Really really difficult.  The pendulum swings to such extremes, it seems.  She's up, walking, talking, being silly and feisty.  Then she's crying, scared, wanting to go home, lungs and diaphragm in need of healing, heart in need of a good rhythm, pacemaker-free. I'd like to say my heart is full of faith and trust, but I'm not perfect.  I still have moments of doubt (plenty).  And there's been a lot of those today.  Lord, forgive my doubt.  I don't want to have to come to a place where I need to tell my baby girl that she needs another surgery to make her "remote control" permanent.  Please, pray against it fervently.

I've been encouraged by others many times today, including my leader of a husband.  Notes, cards, messages, voicemails, scriptures, even videos...all sent my way (or for Camdyn).  So for tonight, I dwell on the beginning of Psalm 143:

Hear my prayer, O Lord;

give ear to my pleas for mercy!

In your faithfulness answer me, in your righteousness!

Enter not into judgment with your servant, 

for no one living is righteous before you.

For the enemy has pursued my soul,

he has crushed my life to the ground;

he has made me sit in darkness like those long dead.

Therefore my spirit faints within me;

my heart within me is appalled.

I remember the days of old;

I meditate on all that you have done;

I ponder the work of your hands.

I stretch out my hands to you;

my soul thirsts for you like a parched land. Selah

Answer me quickly, O Lord!

My spirit fails!

Hide not your face from me,

lest I be like those who go down to the pit.

Let me hear in the morning of your steadfast love, 

for in you I trust.

Make me know the way I should go,

for to you I lift up my soul.

Today was a really good day for extra encouragement.  Thank you, friends.  

We don't at all hate being here.  It's a really positive atmosphere, thanks to the staff.  They don't only allow her to squirt staff members with a 60 ml syringe full of water, they encourage it (and then refill it).  If it gets her excited for a walk around the floor, they're happy, too.  Let's just say that since yesterday, all the PICU gentlemen have been really great sports when she makes them look like they didn't make it to the bathroom on time.  Then they stand there for more.  And it brings out this girl's real smile...nose crinkle, eye twinkle, and all.

Today, we had to move rooms, as they were expecting two more babes from the OR after heart surgery.  We have a tiny, sweet roommate.  Camdyn's been calling her "her butterfly."  My girl is so tender...and persevering.  She sleeps soundly with rarely an alarm going off tonight.  She's so tired from such hard work today.  And as much as I wish that this burden didn't belong to her, I am reminded that we aren't the ones who wrote the story (thanks to a daily dose of Oswald).  Our circumstances are what they are.  We don't know why.  But they shouldn't be our focus.  "If you are truly recognizing your Lord, you have no business being concerned about how and where He engineers your circumstances. The things surrounding you are real, but when you look at them you are immediately overwhelmed, and even unable to recognize Jesus."  I spent too much time today focused on the circumstances.  The wind has been boisterous today, and the waves have been high, but I didn't recognize that my Lord is in control of it all.  I didn't surrender it to Him.  No wonder I've felt overwhelmed today.  <Sigh>. I'll try again tomorrow.

Please continue lifting Camdyn up in prayer...that her own heart rate regulates itself, pacemaker-free before the end of the week, that her lungs and diaphragm heal, and that her spirits be lifted.  We all desperately want to return our family unit home and be together.  No alarms.  No interruptions.  No monitors to watch or IV's to flush.  No missing our little boy because we've barely seen him.  As much as we consider ourselves fairly strict parents...we decided its a pretty good summer to spoil them (a little).  And we're SO READY TO DO THAT.

Hi! We're new here...

We never really thought about blogging anything until recently.  Sure, there's some blogs that we like to follow, and we can be downright entertaining at times, but it all seemed a little daunting, to be honest.  That is, until we realized that we had a current and present reason for it.  With our little love's third open heart surgery on the near-horizon, we thought this would be the best and easiest way to update anyone who would be interested in her surgery and recovery process.  It's also a place for us to ask prayer for her (and for us), for specific things she'll need along the way.  I know there's a lot of prayer warriors out there...so if you know some, please share our blog.  Share, share, share.  

Why "Heart, Hope, and a Future" you ask?  It's simple.  It's because the whole inspiration for this blog began with my sweetie's physical heart, and in the process of writing posts about her surgery and recovery status, we'll be sharing our hearts (mostly me), to give you a glimpse of what this world looks like to anyone who doesn't know, and to maybe reach out to someone who knows this world already, so they know that there's hope in our Lord.

The "Hope and a Future" come straight from His word in Jeremiah 29:11 - "For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope"(ESV).  He knows His plan, even though we probably don't.  BUT, our hope is in Him, and He is the one who holds the future.  In an experience where it seems as though we are completely helpless, where our hands are "tied," our only peace comes from knowing that He is in control.

He is the rock.

He has complete sovereignty.

He holds her precious, partially-repaired, partially-functioning heart in His hands.  Come what may.

And for that, we are thankful.