Addison’s Story

Site created on June 7, 2018

On January 9th, 2018 my wife and I received news that would change our lives forever. During Emma's routine 20 week ultrasound we found out we would be blessed with a little baby girl, and a very special one at that. We were told after her ultrasound that things didn't look quite right with her heart and we were referred to a pediatric cardiologist that same day for further investigation. The echocardiogram results confirmed our fears. Our baby was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) as well as Heterotaxy. HLHS essentially means the left side of her heart, for whatever reason,  failed to develop properly. While heterotaxy is an abnormal arrangement of her internal organs. Our excitement about starting a family quickly turned into an overwhelming amount of fear for our baby girls future. It wasn't until we met with the team of doctors and surgeons at Riley Children's Hospital that we truly felt at ease about our baby girls future.  Addison was born on May 29th, 2018. It was a very exciting and emotional delivery knowing that once she got here, her tough road would begin. We have been blown away with the amount of support, love and prayers from our family and friends throughout all of this. And Addison is so excited to meet all of you one day!

Newest Update

Journal entry by Danny Graham

We’re now post op day 4 and since my last update on Tuesday we’ve seen a huge improvement in Addison’s recovery! Her vital signs have all remained stable, her pain is under control, she’s completely off oxygen, and she’s getting stronger every day. The only minor issue she’s had so far is that she has some fluid around one of her lungs. It’s fairly common for kids to develop mild plural effusions after these kinds of surgeries, so her doctors have been closely watching her X-rays and giving her medications to try and remove the fluid. Yesterday evening she was transferred from the ICU to the cardiac step down unit which means we’re that much closer to heading home. The next steps will be getting her chest tube and central line removed, we’re hoping tomorrow those will come out so maybe we can make it home by the end of the weekend! 
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