Its been a long time since we’ve had anything but positive reinforcement from Doctors that our little girl is improving and growing as she should. It doesnt matter that Evie has had twenty ECHO’s. I still get nervous every time and yesterday, that familiar twinge of fear began to settle in and make a home in my heart.

We traveled to Charleston for her 6 month evaluations with a couple of her specialists.

We spent over an hour-and-a-half in ECHO. The sonographer had trouble getting the pictures needed and called in a second opinion. After collaborating and reviewing with the Doctor, he was not satisfied and asked them to try again. All this with Evie fighting the sedation and never actually sleeping. It made for a loooong afternoon!

The doctor came in to review the results with us. It appears our girl has a dilating root of her aorta. This is likely because of the fact that since transposing her main arteries to repair her original defect, the pulmonary valve is now required to take over the much more strenuous responsibility of the aortic valve which delivers blood to the body. This puts pressure on a valve that was never designed to handle this kind of blood flow and is causing it to stretch and dilate.

Evie’s cardiologists want to keep a closer eye on her and do more frequent ECHO’s to see if this progresses. While it is not eminent, a future surgery could be required to repair this.

The arterial switch she received back in January ’08 is a relatively new procedure, so the survivors are only in their 20s and its hard to say what the long term prognosis is. It would be easy to feel swallowed up in deep waters. The thought of another surgery could easily overwhelm me. Her first 18 months of life were full of such uncertainty. It has only been in the past few months that we’ve stopped treating her like a piece of fine china that could break. I believed we had finally weeded out anxiety and could relish our days with our sweetheart without fear looming and threatening to steal our joy.

But I go back to her name and realize God has not finished teaching us through this little girl.

Peace.

Peace in the storm.

Im not guaranteed tomorrow. Not for her. Or for any of her “healthy” siblings.

Each day is a gift and an exercise in trusting the Lord through uncertainty. Finding our joy in Him when the answers are unseen.

I take great comfort in the fact that He has so clarly had His hand of protection on her life thus far and that none of this takes Him by surprise.

What a lesson as I watch my daughter so full of beautiful life that He has granted. Im learning to let my hair fly in the breeze. Raise my hands. And trust that He is behind the wheel ~ through both valleys and mountains!

and praying for our sweetheart!

Evie got another Synagis shot this week. Because she is a heart baby, immuno compromised and has pulmonary issues, her wonderful doctors ensured she receive another year of protection against the very dangerous RSV virus.

Anyone want to guess what the price tag is on these little suckers….???

I thought Id heard wrong when the nurse told me the first time.

And that’s monthly folks! Liquid gold! Can I just say how grateful I am for insurance!

During the RSV season, children that qualify receive this injection every 25 days from September through March. Multiply that by her third winter now and…….

Yes, we’re talking boo-koo bucks!

The wheels in my head have started turning…lets see now…

A Life Flight in a Chopper

+2 weeks in ICU

+2 weeks in the Step-down Unit

+Open Heart Surgery

+Life Support

+5 Vent Insertions

+3 Blood Transfusions

+18 ECHO’s

+13 EKG’s

+1 CT Scan

+Regular appointments with 6 Specialists

+Genetic Testing

+7 Catheterizations

+3 More Surgical Proceedures

+16 X-rays

+100 plus Blood Draws

+760 days (and counting) on multiple medications

Worth every penny is:

+Pinching her thighs and hearing her belly laugh

+Seeing her listen while Tristan reads to her

+Clipping bows in her hair

+Hearing her say Ma-Ma

+Jamming with her while she boogies to “Dancing Queen”

+Painting her itty-bitty toenails

+Watching her pucker up and kiss her Daddy

+Scrunching curls after a bath

+Sharing my lipstick

+Kissing her as she sleeps

+Holding her when she doesnt

+Smelling her sweet Evie-ness

+Stealing her nappy blanket to wash it

+Looking into these big blue eyes

+every moment…..