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

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

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

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

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

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

November 5, 2017 A Life Donated, advanced heart failure, Andrea O., 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

October 27, 2017 A Life Donated, advanced heart failure, Andrea O., end stage cardiac disease, heart transplant, single ventricle heart disease 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

October 15, 2017 A Life Donated, advanced heart failure, Andrea O., 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

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

September 16, 2017 A Life Donated, advanced heart failure, Andrea O., 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

September 5, 2017 A Life Donated, advanced heart failure, Andrea O., end stage cardiac disease, heart transplant, single ventricle heart disease, terminal diagnosis 3 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

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

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

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

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

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

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

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

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

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