The Day-to-Day Life of a Child with Tetrology of Fallot

June 7, 2015 by nohandsbutours complex heart defect, Family Stories, heart defect, Heart System, Tetrology of Fallot 2 Comments

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When I saw my son’s picture for the very first time, before I knew he was my son, before we had decided to make him ours, the overwhelming emotion I felt was fear. His diagnosis was just. plain. scary. to a regular old mom like me: Tetralogy of Fallot (ToF), cyanotic, not corrected till 16 …Read More

What We Know…

February 28, 2015 by nohandsbutours complex heart defect, double outlet right ventricle, February 2015 Feature, pulmonary atresia, pulmonary stenosis, single atrium heart disease, single ventricle heart disease, Tetrology of Fallot, TGV 0 Comments

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We know that adoption is beautiful, don’t we? We know that it is a wonderful way to build a family. We also know that it can be painful, and scary, and even though it can most definitely be a dream come true, it can also hold many frightening unknowns… We have three dreams come true, …Read More

“Normal” Ain’t Got Nothin On This

February 23, 2015 by nohandsbutours double outlet right ventricle, February 2015 Feature, pulmonary atresia, Sonia, Tetrology of Fallot 5 Comments

As we continue through February, the month of Congenital Heart Defect Awareness, we continue to share posts from moms parenting children with heart defects. Our goal is to inform and equip those considering or home with children with this special need by sharing the real-life experiences of those already parenting a child (or children) with …Read More

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

Surprise

November 24, 2014 by nohandsbutours Amy, Featured, kyphosis, scoliosis, tethered cord, Tetrology of Fallot 7 Comments

I knew to be prepared for undiagnosed needs when we set out to adopt. We prepared for the reality that a heart condition would be worse than we originally anticipated it would be. While we went through the list of needs that we would consider or not consider we had to imagine that what we would believe would …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

the greatest special need of all

February 7, 2014 by nohandsbutours Amy, Attachment, scoliosis, Tetrology of Fallot 8 Comments

Welcome to Amy, mom to Grace adopted from China 8 months ago, and our newest contributor at No Hands But Ours. Amy blogs at Stops Along the Journey. Special needs. We hear those words so often in so many places; schools, adoption agencies, the work place, fast food restaurants, and facebook. Adoptive parents who choose …Read More

Eyes on us

April 1, 2012 by nohandsbutours Kam, Tetrology of Fallot 3 Comments

I distinctly remember countless details about November 14th last year. It was a Monday and I was at our school where I work in 2nd grade. {We private school there two days a week and home school the other three days.} The sweet ladies at the front desk asked about our little boy in China …Read More

The Terminal Child

March 6, 2012 by nohandsbutours heart defect, Sonia, Tetrology of Fallot 11 Comments

I still don’t really know how we got here. I still don’t understand why that label Terminal. Didn’t make me turn away from him. Somehow. Someway. I knew. He.Was.Ours. And the fact that he hadn’t been given much time left on this earth somehow didn’t frighten me. It made me sad, certainly. For him, for …Read More

Kaylin Mei Lian

April 10, 2009 by nohandsbutours Family Stories, heart defect, Tetrology of Fallot 0 Comments

by Anita, momma to Kaylin Mei Lian from China with Tetralogy of Fallot (CHD) As we began the adoption of our daughter, Kaylin, we went into it like many families requesting a non-special needs child as young as possible from China. We had already been blessed with three older, biological children who were healthy, and …Read More

Josie

November 24, 2008 by nohandsbutours Family Stories, heart defect, Tetrology of Fallot 0 Comments

By Kim Kenward, mother to Josie from a China with a Congenital Heart Defect ~ Tetralogy of Fallot Our Journey to Josephine Xue Kenward When we first started out in the adoption process, we didn’t start out pursuing a special needs adoption. On July 31, 2007, we found our daughter on a waiting child list …Read More

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