Your Broken-Hearted Brave Hope

February 18, 2019 advanced heart failure, complex heart defect, end stage cardiac disease, February 2019 Feature - Heart, Heart System 0 Comments

Dear Heart Warrior Mamas, Before we adopted our daughter, who was born with congenital heart disease (CHD), I didn’t know so many things. But you and my daughter have taught me.. I didn’t know what it meant to advocate for your own child. I have watched you learn medical terminology. I have witnessed your brave …Read More

From Organ Donation To Graduation

February 13, 2019 2019 Features, advanced heart failure, complex heart defect, February 2019 Feature - Heart, Heart System, heterotaxy, large families, malnourishment, pulmonary stenosis, single ventricle heart disease, terminal diagnosis 0 Comments

Have you ever received news that was so hard to hear you actually felt like you were having an out of body experience? The afternoon of Evelyn’s heart catheterization, the day that doctors and surgeons came into a small room to explain to my husband and I that our little girl was more critical than …Read More

For Ivy: Honoring our Hero

February 3, 2019 adoption community, advanced heart failure, complex heart defect, Family Stories, February 2019 Feature - Heart, Heart System 0 Comments

It is with great joy that I share that Madison Adoption Agency is offering an adoption grant in honor of our daughter, and forever hero, Ivy Joy. For those of you who are new to our story, our precious Ivy Joy went home to Jesus on March 20, 2017. Ivy had a complex heart defect …Read More

Happy Five Years To Our Shining Light

August 25, 2018 A Life Donated, advanced heart failure, Andrea O., complex heart defect, end stage cardiac disease, heart transplant 0 Comments

August 21st marked five years since Rini Ann Yongling became our daughter. We had spent the previous three days in the shadowlands while our agency’s staff, both stateside and in China, worked feverishly on our behalf. The “begging letter”, as I named it, which I had been given an hour to compose the night after …Read More

A Particularly Bad Day

May 17, 2018 adoption realities, attachment challenges, complex heart defect, food issues, hoarding, hypervigilance, Megan V., older child adoption, orphanage behaviors, trauma 1 Comments

There is a constant editing process that goes on when your adoption isn’t all rainbows and unicorns. It is a dance between saying enough and not saying too much. Between protecting his privacy and helping others by sharing our experiences. We’ve just celebrated Abe’s three year Family Day this week and it’s triggered stuff in …Read More

“Will Adoption Be Good For My Kids?”

April 15, 2018 complex heart defect, double outlet right ventricle, Heart System, heart transplant, hypertrophic cardiomyopathy, large families, Lifelong needs, Megan V., older child adoption, siblings 1 Comments

As I type, I’m sitting still in a sun puddle, watching my 12 year old take Abe’s blood pressure because we are at nearly 10,000 feet elevation on a ski vacation and his heart is faltering as it is, even without the elevation change putting undue stress on his valves. And this is a monitoring …Read More

Be Strong + Courageous

March 19, 2018 complex heart defect, double outlet right ventricle, heart defect, Heart System, heterotaxy, March 2018 Feature - Sunshine in the Grey, pulmonary stenosis, surgery 0 Comments

Mary Katherine is our walking miracle. She was born with heterotaxy syndrome and a rare, God-designed, complex heart that we like to say is “imperfectly perfect”. Every imperfection (and there are many) was created in such a way that her heart was perfectly balanced. For four years she defied odds and was full of life, …Read More

The Club I Never Wanted to Join

March 1, 2018 advanced heart failure, complex heart defect, Family Stories, February 2018 Feature - Heart, Heart System, terminal diagnosis 2 Comments

I’d been part of the adoption community for over 10 years and the heart moms always seemed so special to me. They were so brave and so strong, way stronger than I could ever be; moms who were willing to take this giant leap out onto the ledge of life and death for their children. …Read More

Doctor Friends

February 27, 2018 complex heart defect, endocardial cushion defect, February 2018 Feature - Heart, Heart System, heterotaxy, pulmonary hypertension, single atrium heart disease 0 Comments

When my husband and I first were matched with our son, Jet, we didn’t know a whole lot about the world of pediatric cardiology and congenital heart defects. Our son was born with heterotaxy (complete abdominal situs inversus) with left atrial isomerism, functional polysplenia, interrupted inferior vena cava, partial endocardial cushion defect, tricuspid and mitral …Read More

Dear Could-Be Heart Mama…

February 14, 2018 complex heart defect, February 2018 Feature - Heart, Heart System, heterotaxy, major aorto-pulmonary collateral arteries, medical needs checklist, Morning Star Foster Home, pulmonary hypertension, referral, single atrium heart disease, single ventricle heart disease 1 Comments

Dear Could-Be Heart Mama, thinking of bringing home your own little Broken-Hearted Brave, It’s the morning here, on this Celebration of Hearts, and I wake up to a house full of little hearts — brave and broken ones, that is. We like to call ourselves this “Little House of Brave” — like a warrior rally …Read More

Joy in Broken Hearts

February 13, 2018 cleft palate, complex heart defect, developmental delays, Family Stories, February 2018 Feature - Heart, feeding tube, Heart System, hospital stays, mitral valve regurgitation 0 Comments

I first saw my daughter’s face on my thirty-first birthday. There she was. Staring out at us from a computer screen. Her diagnosis was cleft palate, congenital heart disease, and delayed development. We sought out expert advice from an international adoption specialist and then took the leap of love and said Yes. But as I …Read More

The Checklist

January 19, 2018 aortic stenosis, complex heart defect, double outlet right ventricle, hypertrophic cardiomyopathy, Lifelong needs, medical needs checklist, Megan V., pulmonary stenosis, TGA 0 Comments

There is a checklist. It is several pages long and includes medical jargon I don’t know and hope I never have to understand. Every person who has adopted has been faced with this list. What are you willing to weather? I agonized over that list, checking and unchecking things depending how I felt in that …Read More

I Commit Myself to Thee

December 27, 2017 Andrea O., complex heart defect, complex medical, disruption, November 2017 Feature - Preparing for Adoption, prepping for China, terminal diagnosis, undiagnosed SN 23 Comments

I commit myself to thee. After the adoption of our youngest child and her immediate hospitalization from end-stage heart failure, I began to receive emails and messages via social media from some of the dozens of families who had reviewed her file. One of the families wrote something that shook my soul and has remained …Read More

A Life Donated: Part 17 and an Epilogue

November 13, 2017 A Life Donated, advanced heart failure, Andrea O., complex heart defect, end stage cardiac disease, Heart System, single ventricle heart disease, terminal diagnosis 4 Comments

Rini, our youngest of six children, was adopted in August of 2013 at end stage heart failure stemming from complex, single ventricle congenital heart disease. She was admitted to the hospital immediately upon arrival home and within two weeks it was determined that she was inoperable, her only hope would come through cardiac transplant. She …Read More

A Life Donated: Part 13

October 8, 2017 A Life Donated, advanced heart failure, Andrea O., complex heart defect, end stage cardiac disease, heart transplant, single ventricle heart disease, terminal diagnosis 0 Comments

Rini, our youngest of six children, was adopted in August of 2013 at end stage heart failure stemming from complex, single ventricle congenital heart disease. She was admitted to the hospital immediately upon arrival home and within two weeks it was determined that she was inoperable, her only hope would come through cardiac transplant. She …Read More

A Life Donated: Part 9

August 28, 2017 A Life Donated, advanced heart failure, Andrea O., complex heart defect, end stage cardiac disease, heart transplant, single ventricle heart disease, terminal diagnosis 0 Comments

Rini, our youngest of six children, was adopted in August of 2013 at end stage heart failure stemming from complex, single ventricle congenital heart disease. She was admitted to the hospital immediately upon arrival home and within two weeks it was determined that she was inoperable, her only hope would come through cardiac transplant. She …Read More

A Life Donated: Part 8

August 20, 2017 A Life Donated, advanced heart failure, Andrea O., complex heart defect, end stage cardiac disease, heart transplant, hospital stays, single ventricle heart disease, terminal diagnosis 0 Comments

Rini, our youngest of six children, was adopted in August of 2013 at end stage heart failure stemming from complex, single ventricle congenital heart disease. She was admitted to the hospital immediately upon arrival home and within two weeks it was determined that she was inoperable, her only hope would come through cardiac transplant. She …Read More

A Life Donated: Part 7

August 15, 2017 A Life Donated, advanced heart failure, Andrea O., complex heart defect, end stage cardiac disease, heart transplant, single ventricle heart disease, terminal diagnosis 0 Comments

Rini, our youngest of six children, was adopted in August of 2013 at end stage heart failure stemming from complex, single ventricle congenital heart disease. She was admitted to the hospital immediately upon arrival home and within two weeks it was determined that she was inoperable, her only hope would come through cardiac transplant. She …Read More

A Life Donated: Part 6

August 3, 2017 A Life Donated, Andrea O., complex heart defect, end stage cardiac disease, heart transplant, single ventricle heart disease, terminal diagnosis 0 Comments

Rini, our youngest of six children, was adopted in August of 2013 at end stage heart failure stemming from complex, single ventricle congenital heart disease. She was admitted to the hospital immediately upon arrival home and within two weeks it was determined that she was inoperable, her only hope would come through cardiac transplant. She …Read More

A Life Donated: Part 5

July 27, 2017 A Life Donated, Andrea O., complex heart defect, end stage cardiac disease, heart transplant, single ventricle heart disease, terminal diagnosis 0 Comments

Rini, our youngest of six children, was adopted in August of 2013 at end stage heart failure stemming from complex, single ventricle congenital heart disease. She was admitted to the hospital immediately upon arrival home and within two weeks it was determined that she was inoperable, her only hope would come through cardiac transplant. She …Read More

A Life Donated: Part 3

June 27, 2017 A Life Donated, Andrea O., complex heart defect, end stage cardiac disease, heart transplant, single ventricle heart disease, terminal diagnosis 0 Comments

Rini, our youngest of six children, was adopted in August of 2013 at end stage heart failure stemming from complex, single ventricle congenital heart disease. She was admitted to the hospital immediately upon arrival home and within two weeks it was determined that she was inoperable, her only hope would come through cardiac transplant. She …Read More

A Life Donated: Part 2

June 8, 2017 A Life Donated, Andrea O., complex heart defect, end stage cardiac disease, heart transplant, single ventricle heart disease, terminal diagnosis 2 Comments

Rini, our youngest of six children, was adopted in August of 2013 at end stage heart failure stemming from complex, single ventricle congenital heart disease. She was admitted to the hospital immediately upon arrival home and within two weeks it was determined that she was inoperable, her only hope would come through cardiac transplant. She …Read More

Trusting God To Number Our Days

May 12, 2017 complex heart defect, Family Stories, pulmonary stenosis, TGA, VSD 4 Comments

I remember looking at pictures of children and wondering if they were mine. I knew God wanted us to adopt a child. I knew He had a specific child for us. Every time I would look at a picture of a waiting child, I would ask myself, “Are you mine?” God, how will I know …Read More

Feeding Challenges: “I’ve Got This” and Other Things I Once Believed

March 26, 2017 complex heart defect, developmental delays, early intervention, failure to thrive, feeding tube, feeding/swallowing therapy, malnourishment, March 2017 Feature - Feeding Challenges, Nutrition, oral aversion, paralyzed vocal chords, refusing food, surgery 4 Comments

Major cardiac defects? That’s a little more intimidating than we initially signed up for but nothing a good surgeon can’t fix. Plus I’m a nurse, I can handle the hard. God prepared me for this. Poor oxygenation? That’ll correct itself once her heart is repaired. Severe developmental delays? Of course she’s delayed, but look at …Read More

Seriously Blessed

March 4, 2017 adopting again, adopting later in life, adopting out of birth order, adopting two at once, complex heart defect, complex medical, large families, medical needs checklist, November 2016 Feature - Then and Now, older child adoption, should we adopt? 9 Comments

In 2011, our family looked like this. We were considered a large family by our friends and family. Dan and I had been married for 27 years at this point. We had been through a great deal during those 27 years. Our twin boys were born prematurely, three months before their due date. Our son …Read More

Wisdom for Enduring Extended Hospital Stays

February 27, 2017 advanced heart failure, Andrea O., complex heart defect, February 2017 Feature - Preparing Your Child for Medical Interventions, heart transplant, hospital stays, Little Hearts Medical, Medical Momma, surgery 0 Comments

When we arrived home with our youngest daughter and fourth CHD child, Rini, in August of 2013, my definition of a long hospital stay was three weeks. When my husband dropped us off at the entrance of the children’s hospital’s Emergency Department straight from the airport, little did I know that my definition of an …Read More

Strength for the Journey: Adopting a Child with Complex Heart Defects

February 26, 2017 atrioventricular canal defect, complex heart defect, Family Stories, February 2017 Feature - Heart, Heart System, heterotaxy, hospital stays, pulmonary atresia, single ventricle heart disease, VSD 0 Comments

I was just able to sit down with a cup of hot tea on a cold and lazy Saturday afternoon, relishing in the quiet and calm. Also know as, daddy is home so he is dodging toddlers and taking care of farm animals while I hide in his office to write this article. With six …Read More

Choosing Happiness Daily: Adopting a Child with an Unfixable Heart

February 19, 2017 adopting a boy, complex heart defect, double inlet left ventricle, Eisenmenger’s Syndrome, Family Stories, February 2017 Feature - Heart, heart defect, Heart System, older child adoption, pulmonary hypertension, terminal diagnosis, TGV 4 Comments

One evening less than two months after bringing home our second son from China, I told my husband that I wished we could adopt an older child someday too. In both of our travel groups, there were older children who were adopted. These had made such an impact on my heart! They understood the idea …Read More

After the Honeymoon: Adopting a Child with Complex CHD

February 14, 2017 adopting a boy, adopting as first time parents, complex heart defect, Family Stories, February 2017 Feature - Heart, first year home, Heart System, heterotaxy, medical needs checklist, Morning Star Foster Home, pulmonary atresia, should we adopt?, surgery, waiting for referral 0 Comments

Prologue: In our son’s room, we have a picture that reads: “Be strong and courageous. Do not be frightened, and do not be dismayed, for the LORD your God is with you wherever you go.” (Joshua 1:9) We chose this verse for him, but in reality it applies more to us. My husband, Derek, and …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

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

The Road To Compassion

January 27, 2017 Andrea O., complex heart defect, should we adopt?, siblings 0 Comments

When contemplating the adoption of a child with complex medical needs, particularly those needs that may very well result in a shortened lifespan, families are often confronted by well-meaning friends and relatives with a variation of this question: “How will this adoption affect this children already in your home? How will this affect your marriage?” …Read More

Saying Yes to a Child with a Terminal Diagnosis

November 28, 2016 complex heart defect, Heart System, terminal diagnosis, TGA 10 Comments

When we felt God’s pull on our hearts to adopt, it was the year 2012 and we had three biological children, ages 11, 8 and 6. We had never thought we would adopt, but God had created a yearning so strong in our hearts that we couldn’t say no. Adoption in and of itself was …Read More

The Ledge

November 27, 2016 advanced heart failure, Andrea O., complex heart defect, complex heart defects, Heart System, heart transplant 3 Comments

On November 11, 2013, our 24 month old daughter was in the Cardiac ICU, on the national transplant waiting list, and on ECMO life support due to end stage heart failure. The following day, we would learn that she would receive the gift of life through cardiac transplant. During that tumultuous time, I had many …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

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

We’re Not Special

January 5, 2016 complex heart defect, Family Stories, Heart System, HLHS, older child adoption, orphan hosting, single atrium heart disease, single ventricle heart disease, TGA 3 Comments

My husband, Bobby, and I are not special. We keep being told that we are. Ever since starting the adoption process, people keep telling us we are “special”. I don’t always know how to respond. I feel embarrassed and totally unworthy. We don’t belong on that pedestal. Have they seen our very un-special home and …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

Cardiac Transplant: part two

February 16, 2015 advanced heart failure, complex heart defect, end stage cardiac disease, Family Stories, February 2015 Feature, February 2015 Feature - Heart, heart defect, heart transplant, single ventricle heart disease 0 Comments

This is the second half of a two-part post written by two mamas who have walked a similar – and yet very different – path. Both of their daughters, adopted from China with complex heart defects, required what most parents would consider a worst case scenario: a cardiac transplant. Each shares their experience below. Andrea, …Read More

Cardiac Transplant: Two Little Girls, Two New Lives

February 9, 2015 advanced heart failure, complex heart defect, end stage cardiac disease, Family Stories, February 2015 Feature, February 2015 Feature - Heart, heart defect, heart transplant, single ventricle heart disease 0 Comments

February is Congenital Heart Defect Awareness Month, so this month we will be featuring several 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 with a CHD. This …Read More

Little Girl Red

February 6, 2015 complex heart defect, Family Stories, February 2015 Feature, February 2015 Feature - Heart, heart defect, PDA, VSD 0 Comments

Sometimes I put my head to her chest and listen. Lub, dub. Lub, dub. Oh the beauty of that sound. It sounds like life and hope, sadness and struggle. I think about her heart in the first months of her life. Her first breath in the world, a whoosh of air into her (most likely …Read More

Willow: adopting a child with complex heart defects

December 5, 2014 ASD, complex heart defect, Family Stories, TGA, VSD 4 Comments

We are all transformed. Every day that goes by, I know that more clearly in my heart and mind than the day before. We have only been home with Willow for five months. My husband and I married right out of college, and we waited a while before deciding we wanted to have children. He’s …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

CHD: Single Ventricle Heart (Probably more than you wanted to know!)

January 22, 2012 complex heart defect, heart defect, Wife of the Prez 18 Comments

I had a reader* (on my family blog) ask a question the other day that I figured some others may be wondering. I also think answering it could potentially help educate others about single ventricle heart disease, and education is POWER and could mean another child going from orphan to a son or daughter. So …Read More

Who Are You Waiting For?

December 6, 2011 complex heart defect, complex heart defects, older child adoption, Wife of the Prez 0 Comments

Are you waiting for a referral? Are you waiting in the Waiting Child (SN) program or the traditional (NSN) program? Are you waiting for what seems like years? Or perhaps you have been waiting for years?Do you know who you are waiting for? A daughter younger than two years old perhaps? Or maybe she could …Read More

Matters of the Heart

February 27, 2010 complex heart defect, complex heart defects, Wife of the Prez 7 Comments

It is no secret that I advocate for children waiting in China, for children waiting who have unrepaired and complex congenital heart defects. I do not advocate to ever pressure anyone into considering the adoption of a child out of guilt. I advocate for the child. Period. I have recently had my heart broken nearly …Read More

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