Wednesday, February 4, 2009
She seems to have a thing for tiny spaces. When the baby “goes missing” at our house, we investigate the dresser drawers or tupperware cabinet. Chances are, she’s pulled out all the inhabitants and drug her blanket inside and set up camp….often big sis is her accomplice! Here are just a few of the misdemeanors we’ve caught on camera:-)
So the plan from here is this… The GI specialist upped her reflux meds. If we dont see improvement in the next week, then we will be scheduling an endoscopy. From the biopsies they take, it will be possible to determine if there are allergy components that are making the reflux worse. Evie was put on Pedia-Sure to help with her poor weight gain. Where whole milk has 200 calories per cup, this stuff has 300 calories!! Even though its chocolate flavored (and her older siblings have been caught sampling her bottle) this little “granola” baby prefers her soy milk and breast milk, but we’re pushing the extra fat. Determined to grow a little butter-ball-baby!
Sunday, February 1, 2009
I’ve been without posting for a while. This week has taken an emotional toll as I replay the events last year that coincide with this week…the surgery date, weaning off the vent, having to go back on the vent, the tests and trials, the delicate balance of dozens of medications, the arrhythmia’s, the crisis moments, the endless hours sitting by her bedside, C-PAPs, CPT, X-rays, brain scans, wound care, sitting in the dimly lit “Nursing Mother’s Room” storing milk for my baby that I wondered if she’d ever receive. This week has revived many emotions. I feel validated as I follow other blogs and realize that every heart-mom does this. These days are inevitable. The days you look back and remember when time stood still!
Dont tell our Dr, but Evie and I “broke parole”:-) We stole away to Atlanta for 24 hours to celebrate my mother’s birthday by surprising her. (I figured limiting interaction to just my family couldn’t be any worse than exposure to germs for 24 hrs. in the hospital last week next door to a poor kid infected with RSV!) Last January was mother’s 60th and we had big plans which came to a screeching halt with Evie in the limelight. Mother was at our side in Charleston making sure we were fed, corresponding with our praying friends, serving and holding us together.
We wanted to celebrate this year! My sister’s and I threw her a little tea party complete with fine china and crystal and dainty tea sandwiches and petit fours. A sweet time of celebration and always, ALWAYS reflections on Gods goodness this year! A whirlwind trip, but great fun.
Oh, and I have the greatest brothers! Got to hang out with them the other night and I have to say that Uncle Nathan has the magic touch!
What a difference a year makes!
Birthday 2008 Birthday 2009
Monday, January 26, 2009
January 25th 2008
Its a date indelibly etched in my memory. All day I’ve had flashbacks to just a year ago. Subconsciously, I know today could represent a tragic anniversary.
The memories are vivid. Almost to the hour now, C and I were taking Evie to the hospital and our life was to begin an emotional roller coaster of sickening twists and turns. Today, the 25th of January I remember the day we almost lost her.
I remember shaking uncontrolably watching Dr’s and nurses franticly trying to revive my baby as she went into arrest from the shock. I remember the ambulance ride to a better hospital and the stack of papers being shoved at me to sign releasing them to treat her….I remember it feeling like an out of body experience….I remember wanting desperately to wake up from the nightmare
For the last year, we’ve lived with a reality that we aren’t guaranteed tomorrow. While I know this is true for each of my precious children, its a reality that stares me in the face every time I look in Evie’s stormy blue eyes.
“All the days ordained for me were written in your book before one of them came to be.
My frame was not hidden from you when I was made in the secret place,
when I was woven together in the depths of the earth,
Your eyes saw my unformed body” Psalm 129:15
We clung to these verses in the moments and days surrounding her diagnosis and surgery. Come what may, we knew her life would not be cut short. No condition or defect could steal even a minute. We knew the Lord was able to save her. We prayed that He would interveen. But we didnt know what the future would hold for our daughter.
I remember sitting in a holding room while a Cardiologist, an Intern and a Counselor filed one after the other into the room to tell C and I the grave news that our daughter had a heart defect and would need surgery if she stabilized enough to fly to Charleston….I remember the rough sketch on a paper napkin the Dr. drew to explain her heart condition….I remember them leaving the room and melting into tears….I remember a beautiful painting on the wall of a little girl playing at the sea side…and wondering if I would ever take my daughter to the beach.
I look back now with a tiny glimpse of the Lords perspective. He who formed her in the womb was not surprised by her porcelain heart. He knew about her damaged lungs. He fashioned her precious body. He toussled her hair and stamped her fingerprints. He orchestrated her melodious giggle. He knows her, inside and out.
I wouldn’t trade this year for anything. It has been full of heartache. I have battled fear. This child is responsible for graying hair and many sleepless nights. But the things she has taught me, have impacted me greatly. You can not walk through the valley of the shadow unchanged.
I remember the presence of the Lord in such a real way as I sat at my daughters bedside in a room with wires and monitors and sensed the comfort of my Fathers love for me and my baby…I remember those who came to us in our darkest moments to offer support and love and practical assistance….I remember the prayers of thousands and the flood of e-mails from around the globe as the Body of Christ united in prayer….I remember a Grace for impossible circumstances….
Today I remember. I remember the gift her life is. I remember all that the Lord has done. I praise Him for Evie’s imperfections. Those things that have cast me upon Him and taught me to trust Him more fully!
