My Warrior

February 11, 2015 by nohandsbutours Amy, heart defect, Tetrology of Fallot, tracheoesophagel fistula 0 Comments

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“She is a fighter. It’s what kept her alive. We love it when our heart babies are fighters. Her body has adapted wonderfully for as long as she has lived without this surgery.” ~ Pediatric Cardiologist I knew Grace was a warrior before we even laid eyes on each other in person. I knew enough …Read More

More than I could bear

June 7, 2014 by Amy Amy, esophageal stenosis, scoliosis, Tetrology of Fallot, tracheo-malacia, tracheoesophagel fistula, VACTERL 5 Comments

Sometimes I forget that we have a child who is a “heart baby”, a lifelong cardiac patient, a survivor. I see her scars everyday. Scars from a surgery I wasn’t present for, scars from one I was; and, I have come to love what they represent. They are a daily reminder of healing, a unique …Read More

Surviving Gotcha Day

May 7, 2014 by Amy Amy, esophageal stenosis, scoliosis, Tetrology of Fallot, tracheo-malacia, tracheoesophagel fistula, VACTERL 4 Comments

A year ago today we had spent only one day with our daughter. After arriving in China, we spent 3 days in Beijing, visited the place she called Home for almost a year and met the women she called “mama”. Then we traveled to XinJiang, her province, tried to sleep on Gotcha Day Eve, and …Read More

“but it said repaired”

April 7, 2014 by Amy Amy, esophageal stenosis, scoliosis, Tetrology of Fallot, tracheo-malacia, tracheoesophagel fistula, VACTERL 0 Comments

I vividly remember reading our referral paperwork. I remember first reading the descriptions of her developmental milestones and evaluated her development through mom and teacher goggles… “she follows objects… she is tracking… she is grasping things… she is babbling and forming simple sounds… she turns her head when there is a noise… she can hear …Read More

TEF, TOF, and VACTERL, oh my

March 7, 2014 by nohandsbutours Amy, esophageal stenosis, scoliosis, Tetrology of Fallot, tracheo-malacia, tracheoesophagel fistula, VACTERL 4 Comments

Don’t you love those acronyms? I have come to really appreciate the time they save, the space they save, and that I can safely dodge oodles of mispronunciation. For example, until 2012 those letter sequences meant nothing to me. If someone would have told me years ago how much I would come to know about …Read More

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