When Fear Turns To Joy

October 23, 2018 22qdeletion syndrome, adopting a boy, adopting again, cognitive delay, developmental delays, Developmental System, Family Stories, hearing aids, hearing loss, IEP, older child adoption, speech delay, Tetralogy of Fallot 1 Comments

I remember sitting there staring. Staring at the notes that I had just scribbled down. My mind was racing and yet it was paralyzed. I had just gotten off the phone with the cardiologist who reviewed the file of a girl that my husband, Dan, and I had requested him to review. I was expecting …Read More

Joy! Faith! Hope!

February 11, 2017 adopting again, atrioventricular canal defect, complex heart defect, double outlet right ventricle, February 2017 Feature - Heart, heart defect, Heart System, pulmonary atresia, Tetralogy of Fallot 1 Comments

These three little words. God planted a seed of love in our hearts, and this is the fruit that grew through the adoption of three little girls. Our story began in 2011 when our biological children were 14, 12, and 10. Our heavenly Father was teaching my husband, David, and I and our family so …Read More

February Special Needs Focus (and Favorite Family Stories): The Month of Hearts

February 6, 2017 advanced heart failure, ASD, complex heart defect, double outlet right ventricle, Favorite Family Stories, February 2017 Feature - Heart, heart defect, Heart System, HLHS, PDA, single atrium heart disease, Tetralogy of Fallot, TGA, TGV, VSD 0 Comments

The term special needs can sound scary. But it doesn’t have to stay that way. Our goal at NHBO is to equip and inform parents – replacing fear with knowledge – as they navigate the beginning stages of special needs adoption. And then encourage and support those home with their special needs kiddos. We do …Read More

Fighting for Her Heart

February 5, 2017 Family Stories, February 2017 Feature - Heart, heart defect, Heart System, hospital stays, surgery, Tetralogy of Fallot 15 Comments

Just over four years ago, I was waiting in a cold government office in Zhengzhou, China to meet my second daughter. I had hesitantly said yes to adopting a child with a heart condition. In saying yes, I had armed myself with knowledge and facts and learned everything I could about my daughter’s medical diagnosis. …Read More

Straight into the Fire: Our Road to Rosie

February 1, 2017 complex heart defect, complex medical, Family Stories, February 2017 Feature - Heart, Heart System, medical expedite, Tetralogy of Fallot 3 Comments

February is the month of hearts. And here at NHBO, we are all about hearts this month, too. This February, we will be sharing stories of children with congenital heart defects – from minor to complex – and how their families found them. pursued them, and brought them home. ……… After adopting our first daughter …Read More

Knit Together

October 13, 2016 Amy, complex heart defect, Heart System, kyphosis, scoliosis, surgery, Tetralogy of Fallot, tracheo-malacia, tracheoesophagel fistula 5 Comments

“I am fearfully and wonderfully made. Your eyes saw my unformed body when I was knit together in my mother’s womb.” – Psalm 139 I can count on two hands the physical diagnoses our little Chinese warrior princess has in her medical history: tetralogy of Fallot (repaired) tracheoesophageal fistula (repaired) stricture of esophagus tracheomalacia chronic …Read More

A Voice for Jade

February 27, 2016 February 2016 Feature - Heart, major aorto-pulmonary collateral arteries, pulmonary atresia, Tetralogy of Fallot 2 Comments

A year ago we were still in the hospital with Jadey Cate and she was fighting hard. She had just endured a marathon heart repair on January 14, 2015 to repair her very broken heart. Jadey Cate was born with a form of TOF with pulmonary atresia and MAPCAs (Major Aorto-Pulmonary Collateral Arteries). She had …Read More

Love for Leeya

February 12, 2016 cerebral palsy, complex heart defect, Family Stories, February 2016 Feature - Heart, Tetralogy of Fallot 4 Comments

February is Heart Month and we continue to share stories from parents as they navigate life with their heart babies. Each story, each post, each child is special. And for today’s post, this is especially true. Andrea was in the process of writing this post when her daughter Leeya suddenly and unexpectedly passed away. Andrea …Read More

Two. Together.

July 17, 2015 adopting as first time parents, adopting two at once, cl/cp, Family Stories, heart defect, Tetralogy of Fallot, virtual twinning 0 Comments

Two together. Twinning. First time parents. In the beginning, these were not words or phrases that I would have put together in any combination in regards to adoption and expect success. And yet, my husband and I did them all. (And you’re reading this on an adoption advocacy site, so you know know I am …Read More

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

June 7, 2015 complex heart defect, Family Stories, heart defect, Heart System, Tetralogy of Fallot 4 Comments

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 complex heart defect, double outlet right ventricle, February 2015 Feature, February 2015 Feature - Heart, pulmonary atresia, pulmonary stenosis, single atrium heart disease, single ventricle heart disease, Tetralogy of Fallot, TGV 0 Comments

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 double outlet right ventricle, February 2015 Feature, February 2015 Feature - Heart, pulmonary atresia, Sonia, Tetralogy 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 Amy, heart defect, Tetralogy of Fallot, tracheoesophagel fistula 0 Comments

“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 Amy, kyphosis, scoliosis, tethered cord, Tetralogy 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 Amy, esophageal stenosis, scoliosis, Tetralogy of Fallot, tracheo-malacia, tracheoesophagel fistula, VACTERL 6 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

adopting a child with congenital heart disease

May 25, 2014 advanced heart failure, Andrea O., ASD, complex heart defect, double outlet right ventricle, end stage cardiac disease, Family Stories, heart defect, Heart System, single ventricle heart disease, Tetralogy of Fallot, TGA, VSD 1 Comments

Four years ago, I could not describe the structure or mechanism of the human heart. Now, that magical and miraculous pump that provides the essence of life is something I think about every day. What an amazing odyssey it has been! This post is not enough to do justice to the complexity of the topic …Read More

Surviving Gotcha Day

May 7, 2014 Amy, esophageal stenosis, scoliosis, Tetralogy 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 Amy, esophageal stenosis, scoliosis, Tetralogy 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 Amy, esophageal stenosis, scoliosis, Tetralogy 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 Amy, Attachment, scoliosis, Tetralogy 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 Kam, Tetralogy 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 heart defect, Sonia, Tetralogy 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 Family Stories, heart defect, Tetralogy 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 Family Stories, heart defect, Tetralogy 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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