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Adilynn Jo Nelson was born on August 16th, 2013 at 5:34 a.m.  Despite what all the doctors said, she came out kicking and screaming and breathing on her own.  She was stable for around 14 hours before she started declining in the NICU.  At 4 days old she underwent a life-saving, open heart surgery.  The surgery went great and Mike and I thought that we were finally on the path to recovery.  Adilynn was a fighter and fought a very tough battle but on September 7th, 2013, she was able to tell me and Mike that she was tired and couldn't fight anymore.  At 4:16 p.m., on Saturday, September 7th, Adi Jo gained the most beautiful set of Angel wings.  

This is where our story began:

April 26th, we met with our Cardiologist so that they could perform an echo and find out exactly what was wrong with Adilynn. The echo (which is basically just an ultrasound on her heart) lasted for what seemed like an eternity. Two nurses looked at her and then finally called in the Cardiologist to take a look. It seemed as though they were also having a tough time getting the pictures they wanted. Adilynn was not being very cooperative and the longer they looked, the more worried I became. Finally the doctor said that he had all the pictures that he needed and he would meet us in the office next to the room where we were at for the sonogram. The cardiologist told us that there was something wrong with Adilynn's heart. When her heart formed, it didn't form properly and she had a congenital heart disease called Truncus Arteriosus. 

Truncus arteriosus (TRUNG-kus ahr-teer-e-O-sus) is a rare heart defect that's present at birth (congenital). If your baby has truncus arteriosus, it means that one large blood vessel leads out of the heart. Normally, there are two separate vessels coming out of the heart--Mayo Clinic Website Except for Adilynn's Truncus was just a bit different. She also had a bad valve at the end of that trunk that was causing the most concern. The doctor was very straight forward and told us that it didn't look good for Adilynn and more than likely we would lose her before she was born. Her heart would eventually go into Heart Failure. 


Adilynn's tribute video:  Adilynn Jo Nelson

Adilynn Jo Nelson

August 16, 2013 - September 7, 2013

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