Home Is Where The Heart Is

Literally.

Her very own "Big Red Heart"

We came home to this on our garage door...the happiest homecoming...thank you to my sweet sister for the final idea, as well as dear family to aid in the execution of this, a hallway full of balloons, and a full-fledged, stuffed animal "Welcome Home, Camdyn" party in her bedroom.  

And, boy, did it feel great to be home.  Moments later, our little man arrived and enjoyed the balloons plenty.  Lunch was followed by a very long, much-needed afternoon nap by all.  Tomorrow, we resume unpacking, do some grocery shopping, and enjoy being home, all four of us.

Thank you for all your prayers and support.  You'll never know how immensely touched we've been by all of it.  The road doesn't end here for our little CHD (Congenital Heart Disease) Warrior.  Please continue to pray for her steadied rhythm and a chest clear of any fluids.  Follow-up appointments begin Monday!  For now, we'll enjoy the three days we have off together.

God is so good.

Zippers

That's what they call scars from open-heart surgery.  Zippers.  It's a common scar shared by each of those who've bravely gone under the knife for open-heart repair or replacement.  They should be worn with pride...and be a badge of courage. Today, my little love was embarrassed by it, self-conscious about it... and that saddens me.

Our little "Hall-of-Famer"

We headed to the main lobby area of the hospital to see what was left of the fun music time that was going on.  She wore an adorable new dress.  It was the first article of clothing that showed more of her scar and bandage than any other so far.  And she was self-conscious. 

I tried to explain that it showed how brave she was, that it proved how strong she was, and how hard she has fought for her precious life.  I told her how beautiful and amazing she was, inside and out.  I assured her that God created her just this way, for special reasons only He knows.  But it didn't matter.  She was still embarrassed.  Tears welled up in my eyes.  I gently hugged her.  I knew this was something we would be facing until her scar faded to a shade lighter than her own skin over time.  A pit sank in my stomach as I thought about how many more of these conversations we would need to have...especially when the school year begins again.  And I wished yet again that I could take it all away from her.

Tomorrow, the pacer wires come out.  Aside from a tiny hiccup this morning, she has solidly been in sinus rhythm since yesterday (hallelujah!!!).  All the extra/unnecessary tape will also come off, while she still has a decent dose of "happy juice" in her system.  If all goes smoothly, we could foreseeably be home sometime on Thursday (woot woot!).  All four of us home together again.  Man, are we looking forward to it.

We will be returning a couple times a week for a while, for follow-up lab work, echos, EKGs, and X-rays.  But then we get to go right back home!  

Please pray for her nerves to be calm, her rhythm to be steadily sinus, and her spirits to be lifted and without self-consciousness.  Please pray that there would be no fluid collection in her chest and that her at-home recovery would be smooth and easy peasy.  Please pray for our continued wisdom and decision-making.  And please pray that Thursday would be our lucky day.  Thanks, friends!

A Few Happy Farewells

We've reeeeaally tried hard to be positive throughout this whole process.  We've had WONDERFUL teams of doctors and nurses and hospital staff all caring for our sweetie and doing their best to make our stay as pleasant as possible.  Even so, there's several things that we really won't think twice about missing...so we're happily saying "farewell" to a few things.  

Farewell to...

- 3am daily X-rays for more than 10 days straight

- alarm sounds of ALL types, all the time

- the journey to get to the bathroom down the hall (and the only one inside the PICU

- the parent shower room (it's just not our own, ya know?)

- the 15 minutes it would take to get all of her attachments in order before going for a walk

- the "super-comfy" pullout chair beds (ok, we ARE thankful we could sleep bedside, but I'm being real, here, as are the kinks in our necks and backs)

- the constant practice of calming her down about being messed with for a number of reasons

- the constant practice of calming her down about someone entering her room

At the risk of sounding too selfish, I've withheld a few complaints.  However, all that being said, our stay has been quite pleasant, given the circumstances.  The doctors and nurses have gone way beyond the usual informative talk and have taken the time to actually teach us about some things.  They've laughed with us, made us feel welcome and comfortable, given Camdyn something to look forward to or pass her time...they've even encouraged the use of her squirt gun syringes.  They've tolerated her moaning and groaning, as well as her grumpy faces (probably more than we have).  Even though we'll be glad to be home, I'm pretty sure we'll all miss some of the fun and camaraderie we were a part of for those weeks.  But, man, will it be good to be home.

Waiting

Today marks day 12 of our Big Red Heart Days.  She has shown such improvement this past week.  Her lungs and diaphragm are normal or near normal again.  She's eating like usual (which is not much, but also normal).  Her heart has found it's (very important) sinus rhythm...but inconsistently.  We walked a total of 24 laps around the PICU yesterday.  And even after all those laps, we were pretty stir crazy.  We've had nurses and doctors and RTs popping in and out of our room...just to say "hi."  But today?  The "stir craziness" continues.  As does the irregularity of her heart's rhythm.

Sinus rhythm...a great thing!

Talk of an implanted pacemaker returned today.  Her heartbeat has fluctuated too much between sinus and junctional.  If she were to remain junctional, it could cause her issues even earlier than "HLHS early."  But here's the gray area:  she's showing NO SIGNS of being affected by it right now.  She's tolerating it well.  The only way we can tell she's having rhythm issues is to look at the line on the screen.  Her blood pressure is good.  Her coloring and respiratory rate are good.  So what to do?  That's what the doctors will discuss during case conference on Monday.  And if they decide on the pacemaker, they then have to decide when.  Next week?  Next month?  Discharge her and readmit her later?  Theres so many questions, so many variables.  Please pray that whatever happens, God's complete will would be done, and that our reliance on Him would be nothing but full and clear.

Always waiting.

So, it appears we're taking involuntary lessons in patience.  And waiting.  And patiently waiting.  None of which we are very good at.  Practiced?  Yes.  Skilled?  No.  I am convicted by Psalm 62:5:

⁵ "For God alone, O my soul, wait in silence, for my hope is from Him."

So we wait.  We wait for answers.  We wait for directions.  We wait for guidance.  We wait for Him.  Through all this, we wait for Him.

On The Tenth Big Red Heart Day

We are SO PROUD of you, Sweet Pea.  You've worked so hard.  You've pushed yourself to do a little more each day.  You're trying to be silly and playful...and you're (mostly) making the most of everything.  We've always known you've had it in you, even before you were born (remember the story we tell about how you punched or kicked me from the inside??).  This situation is just proving it.

Difficult circumstances show us what we're made of, and though you're a loving, tender-hearted little girl, you're one tough cookie, too.  You have this feisty fight within you that only God knew would serve you so well in your life.  While we're still learning how to channel that in a positive way sometimes, you've kicked it into high gear to work in your favor through all of this.  We are the proudest any parents could possibly be.  And your ability to make friends so quickly?  These nurses won't forget you, Love.  They see what a special girl you are...what a gift and blessing you are...and what a clown you can be when you want to have fun!

Keep pushing through it, Love.  Your heart worked hard and found its sinus rhythm today...praise God!  And your lungs and diaphragm are still even more improved!  His mercies are new every morning.  Every morning.  Answers to prayer.

Rest tonight, Lovey.  You've earned a good night's sleep more than anyone.  We have more work to do tomorrow...now let's keep that rhythm and get your heart rate up a bit!  Sweet dreams, my special girl.  I love you.  And I love you always one more than that, too.

Sweet Dreams, Little Darling

Some Kids...

...have been here in the hospital longer than 9 days (lots, actually).

...haven't been outside in months.

...haven't been outside ever (like the babies).

...are under a lot more sedation.

...have multiple issues making their care quite complex.

...have no idea they're even here.

...haven't the ability to try walking.

...have been here more times than they could count.

...have a long road of recovery and/or treatments in front of them.

And some kids?  Some kids have empty bedsides.  For one reason or another, they don't have a mommy or daddy with them, easing their fears, being an advocate for their care, keeping their spirits up, and passing the time with them.  The alarming number of empty bedsides is saddening.  No child should have to do the "day in and day outs" of hospital life without that support by their side 24/7, no matter the age or awareness they have.  My heart hurts for them.  I know there may be legitimate reasons for some of it, but the sadness remains, all the same.  Please, pray for them.  They need hope.  Healing.  Support.

My little fighter sleeps peacefully in her bed after a day of "needy" emotions.  Sometimes, they just need to know you're there.  Thirteen laps around the PICU before bed brings today's total to 15.  Her lung and diaphragm are healing. Her heart rate is working hard to retain its sinus rhythm without the pacemaker.  We're further than we were yesterday.  Progress.  Progress of any kind is worthy of celebration.  We're incredibly proud of our girl.  Day 9 of our Big Red Heart Day is closing on a positive note.  We're praising God for that, and praying it continues.

The Face of Determination

She's the poster child for determination. Spunk. Bravery. Perseverance. Honesty. Sincerity of heart.  She was all of those things today, wrapped up in hospital clothes and floppy socks, with pigtails on top.  Not one single thing could make this child of mine any better.  Not one.  God blessed us with each of our children more than we could ever deserve.

13 laps around the PICU today!

Our kiddos challenge us, humor us, teach us, stretch us, and show us that the depth of love we thought we felt before we had them was tiny compared to the love they've shown us we truly have.  Love that makes your heart explode with their joys, fears, pains, and victories.

Max.  He's proven that some things are just innate...in their blood...part of who they are.  We couldn't make this up if we tried.  He adores his big sister, looks up to her, gets silly around her, says her name excitedly.  He's easy to read, just like she is.  And he certainly knows how to have fun.

Gremlin face for Camdyn!

These faces?  Such siblings.  Same expression, same day, different babes, different locations.  I can't wait for these two "little gremlins" to be together again. Soon, little loves, soon.

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.

"Daddas"

Happy Father's Day to the best dad my children could ask for.

Summer 2012

You've taught them the importance of quality family time.

Idaho Vacation 2012

You've shown them how to "monkey around."

Idaho Vacation 2012

You've taught them how to explore and enjoy their surroundings.

Summer 2011

You've shown them how to put on their shoes (or yours).

Spring 2013

You're teaching them how to ride their bikes.

Bike Practice, Spring 2013 

You've shown them the importance of being affectionate.

Fall 2012

You've taught them to delight and take joy in the little things (like turkey feathers).

Camp Taylor Family Camp, Fall 2012

You've provided heart-to-hearts when they've needed them the most.

Summer 2012

You have shown them how to laugh at their own mistakes...

Homework Time, Spring 2013

....and how to make silly faces.

Max's 1st Birthday, Fall 2012

You've demonstrated the importance of table manners...

Idaho Vacation 2012

...and appropriate use of water guns.

Summer 2012

You're taking each of their hands and leading them down the straight and narrow path.

The Morning Trek To School, Fall 2012

You've provided your lap for comfort and cuddles...

Daddy Cuddles, Spring 2012

.

..and led them to try something that terrifies them.

Idaho Vacation 2012

You've taught them how to walk...and held their hands while they gave it all they had...on more than one occasion.

Today's Second Lap In The PICU

You've shown them what a godly daddy is, and how their mommy should be treated.  You've proved your unconditional love for them, just as they are, and blessed them abundantly, which blesses me in return.  Thank you for the daddy and husband that you are.  Happy Father's Day, honey!

Tiny (Gigantic) Victories

Celebrating them keeps our focus positive.  It would be all too easy to allow the things that aren't wonderful about this time to overshadow those things that are.  We ride the rollercoaster that travels between anxiety and peace nearly every time the numbers on the monitor aren't what they should be.  We held our breaths when discussing removal of the LA/common atrial line this morning as it might've required a blood transfusion, or even a trip back into the OR.  Our lives are at a complete standstill, while life resumes for others.  I'm pretty sure I've gotten a collective total of 8 hours of sleep since Tuesday.

And we miss our little boy terribly, even though we've brought him in to visit Camdyn twice. 

But the tiny (gigantic) victories?  They're part of what keep us going.  Add them to all the prayers, love, support, encouragement, (and not to mention the fabulous meals), from all of you, and round it out with the faith, trust, and stillness of knowing God's plan is perfect...that He is sovereign...and that, my friends, is one "cup that overfloweth."

I try to remind myself that our circumstances are completely orchestrated by Him (like, there's a reason we didn't have a space at the Ronald McDonald House...we didn't need it!).  I am reminded of this by Oswald Chambers in "My Utmost For His Highest."

Oswald Chambers

God has called us to "¹⁶ Rejoice always, ¹⁷ pray without ceasing, ¹⁸ give thanks in all circumstances; for this is the will of God in Christ Jesus for you." (1 Thess. 5).  Our attitudes should not be dependent upon our circumstances.  We are not only to rejoice when things are going our way, but even when it seems like nothing is.  Why?  Because He is sovereign, gracious, merciful, steadfast.  Because He sent His son to die for each of us, wretched sinners that we are. Because our puzzle was designed by Him, and He is putting it together in a far better way than we could ever imagine. 

Today's victories have been exponential:

1. Her blood pressure has stabilized since being weaned off of the dopamine yesterday.

2. She's talking a lot more.

3. She's acting silly and feisty at times.

4. Her LA/common atrial line was removed without a stitch of complication.

5. She's drinking juice.

6. Her bubble blowing is massively improved over yesterday (shows lung strength).

7. She walked down and around one section of the PICU.

8. She sat in her chair for about an hour.

9. The drainage from her chest is still slowing, even though she's been up and around.

Please pray for these victories we've yet to overcome:

1. Her heart rate to return to a non-junctional rhythm, so the pacemaker does not have to be used anymore.  

2. Her left lung to regain its full strength and recover from being partially collapsed.

3. Her spirits to be lifted continually (it's working!!!)

4. For us to have wisdom, strength, and energy to aid in her care.

This has been a growing process, a practice in trust and right attitudes.  We knew this would be the most difficult of the three surgeries, for emotional reasons, simply because of her age.  But, we have five Big Red Heart Days under our belts, and we're thrilled to be on this side of the surgery date, and moving forward with her recovery process.  And we can't wait to get home and spend all that quality family time we've been looking forward to so so much.

Taking It All In Stride

Today was the first day she walked.

All the necessary equipment.

Her oxygen tube was exchanged for a smaller, less bothersome one.  Her dopamine (which keeps her blood pressure up) has been weaned from 14 to 0, in hopes that the dopamine has been the cause of her junctional heart rhythm.  So far, so good.  Now we wait and watch the monitor...the monitor we can't take our eyes off of.  And you know what's scary to watch?  When the doctors come in and start changing up the settings on her pacemaker (as you watch said monitor, of course), and the numbers go crazy..  That's enough to make me need my own.

The cutest loop-de-doos ever.

She spent a good portion of the morning painting some cute figurines that they brought her...and eventually decided it was fun to paint my hand...twice.  There's also been a few instances of the classic Camdyn Stinker Face.  I'm so happy to see the stinker face.  She's teased a few of the doctors and nurses a few times today, too.  Our girl is slowly becoming more herself again.

Some art time for my little artist!

Thank you for your continued prayers!  Please pray for her foot cramps to completely stop, her heart to pace itself with a normal rhythm, and her blood pressure to stabilize.  Please also pray for her spirits to keep lifting and continued determination.  Thank you, friends!!

Perseverance

She's a fighter by nature, brave, and has high standards for herself.  Today was a big day for her already by noon.  After a good night of getting some rest and trying to fine tune the balance between her meds and her heart rate and blood pressure, she was excited to be able to at least sit in a chair today.  After 30 minutes or more of getting her various tubes and attachments situated, she sat in the chair for more than an hour.  It eased the pain she was having from being in bed for so long.  She really wanted to get up and try to walk.  We got so far as to have her stand for a few seconds, leaning on Phillip's leg, then sitting on the knees of Phillip and her nurse.

This girl is full of determination and perseverance, both of which have served her well, especially when it comes to her health.  She has remained mostly calm throughout it all.  When given a bottle of bubbles to practice blowing (in order to begin strengthening her lungs) yesterday, she blew for half an hour!  She wanted to keep going.  It was because she knew that it would help her get one step closer to going home.

She has come off of many of the meds that interfere with regular heart rates and blood pressures.  She is still using the pacemaker, but her heart rate is overriding it much of the time, which is good.  Her chest drainage is looking great and slowing down, and getting her upright and walking (and eventually eating), will increase the output from the three drainage tubes.  Her pain is being managed just fine and she's had her Foley (urinary catheter) out.  They won't remove the LA line that goes directly into her heart through her neck until her heart rate is stable on its own.

Please pray for continued drainage away from her chest to look good, for stabilization of her heart rate (on her own without pacemaker) and blood pressure. Please also pray she continues to increase strength in her lungs and her muscles for standing and walking, and that she can be comfortable enough to also get some rest.

We have been so blessed to be able to sleep in her room with her.  We couldn't have imagined that it would happen to work out this way, and we are thankful that His plans are perfect, that He gave us the grace to handle everything one step at a time, and to have this wonderful news at the end of a very long day Tuesday.

Thank you for all the prayers, messages, and pictures of your love and support!  Please keep them coming so each hurdle can be defeated successfully.

Heart to Heart

Our little heart warrior persevered today with bravery that I've yet to see as strong anywhere else.  She was blessed with peaceful sleep last night and positivity through everything the last couple of days.  The "peace that passes understanding" washed over her and clothed her in preparation for the road to recovery.  The anesthesia worked well (making her "goofy goofy goofy"), and she laughed during her pseudo "Mr. Toad's Wild Ride" into the OR.  Such great nurses.

Have you ever held your breath for 11 hours?  I have...and I'm still having to remind my body to breathe normally again.  The first 6 hours in the OR were spent prepping for the Fontan.  After 5 years, there's plenty of scar tissue that's built up, as well as a tangle veins that have decided to weasel their way through things.  The Fontan itself (disconnecting the main artery from the bottom of her heart, attaching a plastic tube, then reattaching it at the top of her heart) took about 2 hours.  The final 3 hours were spent controlling the bleeding (she didn't need a blood transfusion...yay!), closing her up, and (thanking God especially for this) extubating her successfully.

After a chat with her surgeon in the hallway, we got to see our sugar plum for a couple of minutes in transit to the PICU.  "You can kiss her if you want," the anesthesiologist said.  YES, PLEASE!!!!  We told her how wonderfully she did, how proud we were, and how much we love her.  She fluttered her eyes at us and tried to speak.  I'm pretty darn positive she was trying to say, "love you."

After a few more minutes, they told us we could come back and be with her.  I've never been more excited.  With the exception of a couple of very reluctant bathroom breaks, I haven't left her side in almost 6 hours.

Her pain is being managed well, she appears to be draining fluids well, and she hasn't lost a SPECK of the fighter within her ("I want my bed up higher...right now!!!").  She knows we're here.  When she opens her swollen eyelids and looks at us, she closes them again peacefully...sleeping.

Please pray that she continues to drain well and that her blood pressure can be managed and steadied.  Thank God for His unexpected blessings...today and tomorrow, she is under the care of the same nurse who cared for her so wonderfully five years ago (twice!).

My heart has been in my throat all day...all week, even...so much so that it was practically cutting off my air supply, making it impossible for me to speak at times (ok, maybe not quite like that, but you get the idea).  Today was a day where the Holy Spirit intervened for me, with "groanings too deep for words," (Romans 8:26).  As much as I didn't want to picture my baby on the operating table, its hard to avoid. Once I got to hear she was doing well and see her, relief washed over me. 

The flood of "Big Red Heart Day" pictures and messages, as well as a steady arsenal of prayer warriors with us physically and "at heart" kept us going...from 5:00 am this morning (hmm, now yesterday), until now...almost 1:00 am the next day.  I desperately need some rest, but don't want to let go of this tiny hand I'm holding that's grown so much in 5 1/2 years, conquered so much, matured too quickly, and blessed us ALL.  My little trooper.  My little heart warrior.  Our beloved treasure.

I'm still wearing my Big Red Heart...it will probably have to be removed from me at some point.  We definitely aren't out of the woods yet, but the first big hurdle is behind us.  What a difference a day makes.

Songs and Sleeves

My Big Red Heart, for my sweet little girl

Today, I'm wearing my heart on my sleeve...sort of.  It's our long-awaited, thoroughly planned, overly-educated, and primarily uncertain Big Red Heart Day.  I'm proudly sporting a big red heart in honor of my little heart warrior who is big on personality.  And love.  I'm so touched that so many of you are doing the same.

As we wait, in the company of some of our dear friends and family, there is one song that's been on my heart since last week.  

1. I need Thee every hour, most gracious Lord;
   No tender voice like Thine can peace afford.
   • Refrain:
     I need Thee, oh, I need Thee;
     Every hour I need Thee;
     Oh, bless me now, my Savior,
     I come to Thee.
2. I need Thee every hour, stay Thou nearby;
   Temptations lose their pow’r when Thou art nigh.
3. I need Thee every hour, in joy or pain;
   Come quickly and abide, or life is vain.
4. I need Thee every hour; teach me Thy will;
   And Thy rich promises in me fulfill.
5. I need Thee every hour, most Holy One;
   Oh, make me Thine indeed, Thou blessed Son.
   
   
   (By Annie S. Hawks)
   
   
   I am also reminded today of the idea of living with "gracious uncertainty," from Oswald Chambers' "My Utmost For His Highest."  He says:
   
   "Our natural inclination is to be so precise - trying always to forecast accurately what will happen next - that we look upon uncertainty as a bad thing...Certainty is the mark of the commonsense life - gracious uncertainty is the mark of the spiritual life.  To be certain of God means that we are uncertain in all our ways, not knowing what tomorrow may bring.  This is generally expressed with a sight of sadness, but it should be an expression of breathless expectation.  We are uncertain of the next step, but we are certain of God,  As soon as we abandon ourselves to God and do the task He has placed closest to us, He begins to fill our lives with surprises."
   
   He goes on to say:
   
   "Leave everything to Him and it will be gloriously and graciously uncertain how He will come in - but you can be certain that He will come.  Remain faithful to Him."
   
   We are to be living lives of gracious uncertainty, certain of Him, but really of nothing else.  He uses this to shape us and draw us nearer to Him.  This is something I am reminded of when we aren't even exactly sure where we'll be sleeping tonight.  Come, Lord, and lead us...today, especially. 
   
   
   This morning, we are thankful for anesthesia that appears to be working way better than it did last time (resulting in a happily goofy Camdyn).  Please keep Camdyn in your prayers today, for the extubation to happen in the OR, and for a smooth wakeup afterwards...and keep showing us those big red hearts!  It's an incredible blessing to us!

Love, Daddy

To my little hero,

"I love the Lord, because He hears My voice and my supplications. Because He has inclined His ear to me, Therefore I shall call upon Him as long as I live. The cords of death encompassed me And the terrors of Sheol came upon me; I found distress and sorrow. Then I called upon the name of the Lord : "O Lord, I beseech You, save my life!" Gracious is the Lord, and righteous; Yes, our God is compassionate. The Lord preserves the simple; I was brought low, and He saved me. Return to your rest, O my soul, For the Lord has dealt bountifully with you. For You have rescued my soul from death, My eyes from tears, My feet from stumbling. I shall walk before the Lord In the land of the living." (Psalms 116:1-9 NASB)

Where does your strength come from, my little hero?  At 5 years old, 32 pounds, and all of 4 feet tall, you are the strongest of all, my little hero.  Ah, but I know your secret.  I know who molded and shaped you.  I know who put the fire in your soul and light in your eyes, little hero.  He is the same who blessed me, a simple man, with you.  Be strong and hold fast to Him, my little hero. As you lay next to me strong, brave, courageous, and sleeping blissfully, I lay next to you praying over you...trembling at the work of His hands, knowing that you, little hero, are fearfully and wonderfully made, but fearful of the unknown.  The Lord bless you my daughter, my love, my little hero...

Daddy

A Little Coastal Calm Before The Storm

Cayucos...this girl loves to walk in the sand.  

It was necessary.  And fun.  And the air was cool.  And while Max was in a "temper tantrum every time I don't get what I want" mood for much of the day, Camdyn was having a blast.  Except for the noisy sheep who bleated at the poor girl to scare her enough to climb my legs like a tree and bury her face.

I'd be scared, too, if this creature yelled at me...

She didn't think it was funny...but the rest of us?  So SO funny.

We stopped at one of our favorite places ever...the Avila Valley Barn (or, "Allia" Valley Barn, as she calls it).  Lunch was easily gobbled down by this girl, and picked at by a certain little man.  It was a day of role reversals for these two, apparently.

Climbing the hay bales...a always favorite!

Finally some time in the sand and Max was a happy kid.

He found the seaweed fascinating.

Those two love the beach.  And ice cream.  But ice cream AT the beach???  A dream come true!  A walk on the pier, dinner in the ocean air at one of our favorite restaurants (followed by more ice cream), and then another walk on the trail, and these two were tuckered out.  But I think the kids could've kept right on going.

Except for Max...who thought it was hilarious to walk like an old, crippled man, all hunched over.

Their favorite time...exploring.

Once the silliness was out, there was silence in the car with our little loves sleeping away peacefully...the sign of a really great day.

Walking trail on Moonstone Drive

Back to reality today.  It's 100+ degrees outside, laundry, packing, cleaning...and tying up loose strings.  Ever since the date moved up by two days, I'm two days behind on everything.

Now, it's crunch time.

Dear Camdyn

2013

You aren't bearing this big burden alone, sweetheart.  I so wish I could take all of it from you.  Watching you be scared is hard, but its nothing compared to what you are facing.

2013

I wish you could just enjoy being a regular, healthy kid.  It breaks my heart to see you struggle...but be brave, my baby, be brave.  You have more courage at five years old than many grown-ups ever will in their lives.  You can do this again...but, I'm sorry you have to.  

2011

You don't remember, of course, but you've done this twice before, with flying colors.  You recovered in half the time and got so angry at one point that even Dr. Petrossian said your blood pressure was "impressive for a single ventricle."  Let's not do THAT again, but hang in there, sweetheart.  Soon, we'll be on the other side of this.

2010

I want to stay awake around the clock to make time stop, just to spend it with you.  But I also long to fast forward through all these rough and challenging bits...and bring you home and finally stop talking about your surgery.  I know it bothers you for us to talk about it, little love, but once we're beyond it, we'll be able to share your victory with those who love you...those who care. 

2010

I'm so proud of you, Honey.  I am one blessed mommy...you unknowingly bless all those around you.  You are such a gift.  God is doing something really wonderful with your life through all of this.

2007

Remember to trust in Him with all your heart...we'll do the same, love.  And we'll be right here, waiting for you to wake up.

2010

We love you like crazy, sweet girl.  XOXO

Mommy

Abundant and Overwhelming

My Tiny Ballerina

Blessings, that is.  You know how sometimes someone's actions and thoughts are such a blessing to you that your heart overflows with so much gratitude that it leaves you speechless?That you wonder why you were selected to receive such an enormously wonderful blessing? That it makes your heart ache (in a good way)?  That was yesterday for me.

My Little Love was going to miss her very first dance recital because of her surgery date.  She's worked towards this all school year long, and all the while, we were hoping she would be able to attend, knowing what lies ahead.  I was heartbroken to tell her that she wouldn't be able to do it because she would be in the hospital.  That's a big thing for a little girl.  Until a very dear friend had a brilliant and special idea...to give her her very own recital with her dance friends at her dance school.  She and Camdyn's teacher made it all happen...and went WAY above the "make it happen" stage to that place where you just know that not a single thing could have made it any more wonderful.  Not. A. Thing.  She felt like the prima ballerina.  Thank you to all who came to show her your love.

I think my heart will explode.  Thank you, deeply, Lisa and Annakaren...words cannot express the level of gratitude I feel for the way you blessed my little love yesterday...and the rest of us as a result.

Big Red Heart Day

That's what we call it.  Any visit to Children's Hospital is called a "Big Red Heart Day."  Ever since an enormous, red heart was put up at the hospital, it's become a special thing for Camdyn.  We drive over the overpass just off the exit in Madera and she waits for it...that moment when she can spot the giant, red heart across the field.  We promise to drive by it on our way out if her behavior during appointment time is positive, obedient, kind.  A time or two, we've taken her picture in front of it.  It may be nominal, but somehow it's this special thing she looks forward to.  Kind of a lot.

Camdyn after her last routine cardiology visit on March 25th.

This girl has a tender heart that's so big towards her loved ones that it puts that giant red one to shame.  She loves fiercely and has more compassion in a day than I could probably give in a lifetime.  She is so in touch with people's feelings for a 5-yr-old that it blows my mind.  She's intuitive, intelligent, and thinks things through logically.  Not with 5-yr-old logic (well, maybe sometimes), but with surprisingly adult logic.  

"I'm this tall compared to the heart!"

She asked me to tell her the details of surgery day (again).  We've been discussing it already for months.  Months.  She had questions like how long she'd be in the hospital, what the doctors and nurses would do, and if, when they open up her chest again, they'll need to use a knife (her words verbatim).  It's so hard to give her straight answers (we're kind of big on that), but not scare her at the same time. Sometimes the "not knowing enough" can freak a person out.  (Deep breath)..."They'll do whatever they have to do to make your heart healthy, honey," I remember saying.  

Yes, they'll reopen her chest where her scar has marked each of us with the reminder of His goodness and grace.  That part takes 4 or 5 hours before the Fontan procedure can even begin.  Four or five hours.  Her surgeon has to make sure he goes in very carefully not to disturb or injure the veins and arteries that are behind all of that scar tissue that's built up after 5 years.  The actual procedure itself is only an hour or two process, and then with all the activity of stopping the bleeding and closing everything up, it's about 8-10 hours, start to finish.  The day will begin with a 5:30am arrival time, and by about 7:30 or 8, she'll be headed to the OR, after receiving anesthesia (that will prayerfully be much more effective than when she had her cardiac catheterization).  The Fontan should begin around noon or 1pm, and she could be out of the OR anywhere from 4pm - 9pm.  Such a wide window.  We will get a recap with her surgeon once it is finished and a glimpse of her in the hallway before she heads to her room in ICU to get settled before we can be with her.  

That is one long day.  Only two other times have we ever had a day that long...both other surgeries.

Did you know that some surgeons train their bodies to eat only one meal per day?  Naturally, since, you know, they can't just scoot out for a quick lunch break during surgery.  I'm overwhlemingly thankful for her surgeon and the hospital team that takes such wonderful care of my sweet pea.

There's a few big things that we'll be praying about:

1) That her lungs will be strong enough for them to extubate her before leaving the OR.

2) That the fluids will drain from her chest well and not collect.

3) That the anesthesia works really well and her superhuman-fairy strength (aka adrenaline) does not break through at the last minute when I hand her to her nurse.

4) That she not freak out but stays calm upon waking up from surgery (because of everything that will be attached to her).

Big red heart pins, all ready to be worn!

Surgery day (and thereafter), I will be wearing a big red heart over my own heart in her honor (thank you for those, Chelsea!!!).  Will you join us in wearing red and/or hearts for Camdyn on the 11th, and sharing her battle with others for prayer?  If you do, please share your picture on FaceBook and Instagram and tag me.  I'd love to be able to show her how many people love and support her.