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
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
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
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
The Cost: Adopting a Child with Complex Heart Defects
February 10, 2018
double inlet left ventricle, single ventricle heart disease, Uncategorized
On my daughter’s third birthday I reflected on her life. I reflected on the first moment I saw her picture on a waiting child list. I remember the words of a well respected cardiologist, “Do not adopt her, she will be a financial hardship to your family. She will not survive.” These words are engrained …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
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 16
November 5, 2017
A Life Donated, advanced heart failure, Andrea O., end stage cardiac disease, heart transplant, single ventricle heart disease, terminal diagnosis
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 15
October 27, 2017
A Life Donated, advanced heart failure, Andrea O., end stage cardiac disease, heart transplant, single ventricle heart disease
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 14
October 15, 2017
A Life Donated, advanced heart failure, Andrea O., end stage cardiac disease, heart transplant, single ventricle heart disease, terminal diagnosis
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
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 12
September 27, 2017
A Life Donated, Andrea O., end stage cardiac disease, heart transplant, single ventricle heart disease, terminal diagnosis
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 11
September 16, 2017
A Life Donated, advanced heart failure, Andrea O., end stage cardiac disease, heart transplant, single ventricle heart disease, terminal diagnosis
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 10
September 5, 2017
A Life Donated, advanced heart failure, Andrea O., end stage cardiac disease, heart transplant, single ventricle heart disease, terminal diagnosis
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
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
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
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
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
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 4
July 11, 2017
A Life Donated, Andrea O., complex heart defects, end stage cardiac disease, heart transplant, single ventricle heart disease, terminal diagnosis
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
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
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 1
May 27, 2017
A Life Donated, Andrea O., end stage cardiac disease, heart transplant, single ventricle heart disease, terminal diagnosis
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
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
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
He Is A Gift
February 9, 2017
adopting a boy, Family Stories, February 2017 Feature - Heart, Heart System, HLHS, older child adoption, pulmonary stenosis, single atrium heart disease, single ventricle heart disease, TGA
Our son, Matthew, is eight years old. He came home last year in May 2016. Throughout the adoption process and shortly after arriving home, God reminded us that Matthew is a gift. My husband and I would hear “He is a gift” over and over again. God had to remind us. He had to because …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
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
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
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
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
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
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
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