Heavy Heart

Yesterday was long.  Emotionally taxing.  Bitter-sweet.

Evie wasn't due for another appt. with her cardiologist until September, but she's had some symptoms the past three weeks that have made us uneasy.  Our girl who is usually a bundle of energy has been very fatigued and just not quite....right.  A little droopy and "fragile".  Like curling up in the armchair mid morning asking if its nap time yet.  And going to her friend Zoe's house to play and just laying on the couch asking if we could leave and go home to bed.  She's been falling asleep in the car whenever we go anywhere.  VERY not like her!  

I emailed her cardiologist last week just asking if we should be concerned.  I was expecting him to assure me there was nothing to worry about.

Not so.

He arranged his schedule to fit her in and thought it would be prudent to do so sooner rather than later.  

Brave girl during her ECHO

I feel so very blessed and grateful to have a relationship with these busy doctors who genuinely care for our girl and sincerely take our concerns seriously and move mountains (or at least adjust schedules) to accommodate us.  

The ECHO results came back showing that her aortic root has dilated 2 more millimeters.  This is an issue they have been watching closely for the past year and a half, but this was more of a significant jump and concern this time.  It brought her "z-score" up 3 points.  Which basically means, this is dilating at a speed unproportional to her growth.  

Her doctor wants to move back to seeing her in 6 months (instead of 12) to keep a closer watch on things.  This "shortening of the reigns" is a hard pill to swallow!  She was sent up for labs to check her hematocrit and see if anemia or thyroid issues might be contributing to the fatigue.  And, she was suited up with a 24 hour Holter Monitor which is trying to rule out arrhythmia which could cause her to tire easily.

Our hard day was sweetened by lunch with two of our favorite nurses who have loved on Evie since she was born.  The most surreal thing was taking Evie briefly into the Pediatric Cardiac Intensive Care Unit.  I have been back since she was born, but Ive never taken her back in there.  There is just such a sweet-sober sense when walking through those metal doors and hearing again the throngs of beeping monitors.  Evie was wide-eyed when she saw a newborn all hooked up to leads and wires in the tiny cot.  I got to show her the special row that we remember as "Evies bed, Grayson's bed and Annabelle's bed".....families that have since become some of our dearest friends after our babies shared side-by-side cribs.

Im processing.  It could have been worse news.  There is nothing immediate that needs to happen.  Just closer observance and possible intervention in the foreseeable future.  I told C, it just feels like a dull ache creeping back up.  A reality check that this is never going to just disappear and go away.  We are forever going to be battling this giant.  Sometimes I can almost forget, but then these reminders weigh me down like lead!

As I wrestled with my emotions while driving back the well-known-road between Charleston and Columbia, this sweet girl started asking me to help her with the verses our kids are learning.  Looking in the rear-view-mirror listening to her recite the promises that I pray she will cling too, I couldn't help but be grateful.... 

Pause the playlist at the very bottom of the page before playing this video.

Grateful for the truths of His Word which are the same yesterday, today and tomorrow.  Relevant for every situation.  Come what may!

Grateful that her childlike faith can grasp profound truths and that she can hide them in her heart.

I just HAVE to share this too with my heart-momma friends.  A friend who's son also battles a serious illness shared this music from Sanctus Real yesterday (totally not even knowing what I was dealing with).  The lyrics are penned by a father as they awaited their child who was diagnosed with Hypoplastic Left Heart Syndrome in utero.  

And for that I am grateful too....for the painful reminder of this broken heart that prompts us to love with all our hearts!

You're gonna have all of me

You're gonna have all of me

Cause you're worth every falling tear

You're worth facing any fear

You're gonna know all my love

Even if it's not enough

Enough to mend our broken hearts

But giving you all of mine is where Ill start.