This blog has evolved from its original intent of just keeping family and friends up-to-date on our Evie as she courageously battled her broken heart in the scary first months and years of her life.  It was an easy way to circulate prayer requests….and pray you did!

Evie Transposition of the Great Arteries

This is no longer simply a chronicle of tests and procedures and frightening diagnosis.  The blog today is peppered with more Pinterest projects and embarrassing mishaps in our life with 6 little monkeys than anything else.
Aside from a silver scar that peeks out above her dress, you would never know Evie was a “heart” kid.  Most days are care-free and our Evie lives a normal, rambunctious, energetic life of a four year old, reading Fancy Nancy, dressing up in tutus, applying princess band-aids to skinned knees, playing baby dolls and manicures with hot-pink polish.

Maggie Jane Double Inlet Left Ventricle, TGA & Interrupted Aortic Arch

 But never far from our mind is the road that brought her to where she is today.  Congenital Heart Awareness Week approaching February 7-12th, and I just had to share some of the faces that are my heroes.  Did you know that 1 in every 100 babies is affected by some kind of heart defect?  Its the #1 birth defect and is far more common than you would believe.  Less than 10% of defects are diagnosed before birth.  In America alone, 4,000 babies will not live to see their first birthday because of CHD’s.  CHD’s are responsible for 1/3 of all infant defect-related deaths.  There is a board that has started on Pinterest to raise awareness and share some of these amazing children (and adults) stories.  I was literally in tears looking at the dozens and dozens of faces….beautiful precious children, that have bravely battled broken hearts.
So sobering.

Megan 8 years old ASD, PDA & Bicuspid Aortic Valve

Caden 6 months Aortic Stenosis and Coarctation of the Aorta

Tylee Complete Heart Block

For you heart mommas, there are instructions on the board for how to post a picture of your own little warrior!

Pin their stories.
Share their courage.
And expectant mommas,  HAVE YOUR NEWBORN SCREENED….ask for a pulse-ox screening.  Its inexpensive, non-evasive and it saves lives!!

Here are a few of the little lives battling the beast known as CHD!
Pinterest Faces of CHD Board

January 25th.
Its always a black mark on the calendar.  With impending dread, the day approaches shrouded with a shadow of uneasiness….and gratitude all at once.
Its our “what if” day.


If you’ve followed this blog for any length of time, you’ve heard fragments of Evie’s heart journey.  But being honored with a request to write down her story to be included in the “When Life Hands You A Broken Heart” Heart Stories as part of the upcoming CHD Awareness week collection, Ive been prompted to consolidate the snippets Ive shared here on the blog.  Forgive the length…..experiences like these don’t come in short, concise packages.
This very night four years ago seems like a good place to start…..

January 25th 2008
Our 10 day old baby girl Evangeline (Evie) was thriving, or so we thought.  She was a whopping 9 lbs when she was born and aside from the brief moments after birth when she appeared “blue” and was given blow-by-oxygen, we had every indication that she was healthy and normal.

Her behavior began to vary slightly throughout the day.  When I would nurse her, I remember her feeling sweaty and clammy.  Odd, I thought.  And then I noticed some bruising on her arms.  I called the pediatrician who told me to watch it and bring her in if it changed or got worse.


It was a Friday night and we had dropped our other 4 children off at Grandmas house and gone to dinner with some new friends.  I slipped into a back bedroom to nurse Evie.  She refused to eat.  I wasn’t overly concerned.
Returning to the living room of our friends, we began to notice a strange breathing pattern in Evie.  There was a “catch” in her breath whenever she would exhale.
Id had 4 babies prior to her and was familiar with “varying” breathing in new babies.  They all breathe a little funny sometimes…..right?
“Is she ok?” my friend Wendy asked.
Looking back now, this was the first of many life-saving “red flags” that began to prompt something in C and I.


Leaving their house at close to 11:00pm, we decided perhaps it would be wise to swing by Urgent Care just to be on the safe side.
The lights were out and the parking lot was vacant.
Nuts.
They were closed.


Back at my mother-in-laws house, I tried to feed Evie again while C roused the kids to load them up in the car for our 45 minute trip back home.
Again I took her to breast.
Again she refused.
Again the catch in her breath left me feeling uneasy.


With a foolish sense that we were “over-reacting” C and I decided to leave the kids with Grandma and drive back into town and take Evie to the ER.  The whole way there we speculated that we’d be sent home….eyes rolling by annoyed nurses….at our making a mountain out of a molehill.


I carried my bundled baby snuggled warm and safe in her blue fleece and wrapped in a crocheted blanket and filled out forms at the desk.  We were kindly escorted back to triage where a routine examination began.  It was here that my own blanket of security began to rapidly unravel and our world came crashing in on us….

Evies weight check showed a dramatic drop in weight.  With a sense of alarm, the triage nurse called for help when she couldn’t get a pulse ox read on Evie (this measures oxygen in the blood.  Sats should be close to 100 for “normal” children…Evie’s were in the teens) We stripped her down to her diaper.  She was cold….very cold!  The thermometer taking her temperature registered at 70 degrees.  Evies body was shutting down and we didn’t even know it.


The nurse urgently swept Evie up in her arms and ran through the double metal doors.  “I need help NOW” she yelled.
(Looking back now, we realize that arriving at the hospital even a few minutes later would have been…..too late)


We found ourselves shoved in the corner of Evies room as doctors and techs from every corner of ER left their patients and came hustling to Evie’s side.
Dr. B was a commanding presence that took charge.
A sick, sinking feeling washed over me as I watched the medical personnel file in one after the other. 
This was not standard procedure. This was not “nothing”. 


Twelve individuals in scrubs circled her bed jockeying for position.

Returning to the hospital, a nurse met with us to “prepare” us for what Evie would look like post-surgery.  Our baby had been through unspeakable trauma, but our little fighter could not have been more beautiful to us.  

This began a long, slow and sometimes painful road to recovery.  It wasn’t smooth sailing, but with “two-steps-forward, one-step-back,” (and a lot of scares along the way), our Evie has come so far!  Her road to recovery took a few detours through multiple dangerous heart rhythm (tachycardia) issues that had to be controlled through medication.  Then 2 additional surgeries to investigate chronic lung disease.  She battled Congestive Heart Failure for the first year post-surgery.  She’s overcome GERD, Failure to Thrive, and auto immune disorders. She’s spent cumulative weeks in the hospital for recurring pneumonia of her weakened lungs.  SHe’s undergone over 20 chest X-rays, 4 urinary cath procedures, 4 blood transfusions, multiple CAT scans.  She’s been intubated 6 times and had 22 ECHO’s and 16 EKG’s.  Lets not even count the number of blood draws to date! 

Its rare, but sometimes, God gives us a glimpse of what we would have missed if we had had our way.
Occasionally, He gives us a peek at His eternal perspective…His grace…His gifts that He lavishes on us even through the storms of life that we’d rather have avoided.Here are two of those gifts in my life.

Bryna and Joy.
These two amazing women were Evies nurses in PCICU and on 7C (stepdown) when Evie had her heart surgery.
Three years later and the memories are SO vivid.

…Joy was our nurse the morning anesthesia came in to take Evie into surgery.  Joy patiently stalled him so we could have a few extra minutes holding our baby before handing her over.  She gave me a reassuring hug as I dissolved into tears when the heavy metal doors shut after they wheeled our baby out.

Heart Walk September ’08

…Day 2 post-surgery, we walked into the Unit to find Evangeline’s name beautifully scripted and decorated on bright purple cardstock hung over her bed….Joy’s handiwork.  I cant even tell you how this lifted our spirits.  In a world where your baby is hooked up to dozens of life-sustaining-devices, a little something pretty goes a long way!

…The day Evie had to be put back on the vent and we really thought she might not pull through, Joy gave us hope by telling us that one day, she would be coming back into the unit as a bouncy two-year-old to visit her nurses. (and she DID!)

Evie’s 2nd Birthday

…And sweet Bryna…when we graduated from PCICU and were terrified by the responsibilities that were now ours changing, bathing and feeding this fragile, sick little girl, Bryna patiently walked me through step-by-step and taught us not to be afraid of all the wires and leads.

…She would often drop into my room in the middle of those long lonely nights just to visit and check our her Evie-girl.

Brynas own sweet baby Graham

We have stayed close since and Im honored to call these two dear friends!  They were so precious to drive 2 hours yesterday on their day off from crazy nursing schedules to meet Gigi and spend the day with us.

“Graham & Gigi” has a nice ring, doncha think? There may or may not have been discussion of an arranged marriage:)

Gifts…..grace!