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

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

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

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

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

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