written by Christina, Evelyn’s mother

We welcomed our precious daughter, Evelyn, into this world in November of 2014.  She was such a blessing, and we were overwhelmed with love for her.  We had no idea that anything was wrong with her until shortly before she turned four months old.  I had taken Evelyn into the doctor because she had a respiratory infection.  Her pediatrician suspected she had pneumonia, and he ordered a chest x-ray.  The following morning, we received a call informing us that her chest x-ray showed an enlarged heart and that we needed to take her to Children’s Hospital right away for an echocardiogram.  We were completely caught off guard with this news.  Later that day we received a call from her pediatrician informing us that Evelyn had a Ventricular Septal Defect (VSD).  He said that a lot of the times they closed on their own, however, we needed to be seen by a pediatric cardiologist.  I should have known it was worse than he let on when he suggested that we get in right away. 

Within the week, we were at an appointment with her pediatric cardiologist.  Again, we were dealt another blow.  He informed us that Evelyn was very sick and that she had multiple Ventricular and Atrial Septal Defects (ASD).  He told us that he was hoping to delay surgery a few months so that she could get a little bigger.  She was prescribed a diuretic to help with the extra fluid in her tiny little body. Evelyn was scheduled for open-heart surgery a month later.  Despite our best efforts to keep Evelyn protected against illness she was hospitalized with HMPV (Human Metapneumovirus) two days before her open-heart surgery was scheduled.  HMPV is a virus similar to RSV and because it is an infection of the respiratory tract Evelyn’s surgery was delayed for six weeks.  

On May 27, 2015, shortly before Evelyn turned seven months old, she underwent open-heart surgery at Children’s Hospital in Omaha.  She was such a little champ.  The only time she didn’t have a smile on her face was right after surgery when she was still recovering from the sedation.  We were discharged a few days after surgery.  Our time at home was short lived though.  The day after we were discharged we were back in the ER. Under her surgery incision, she had a pocket of air that filled with blood.  A few days later we were sent home again.

Evelyn received her Heart Hero Cape a few days after arriving home from the hospital.  She truly was our little superhero.  A few months after her open-heart surgery, Evelyn participated in the 2015 Superhero Heart Run and she loved it.  She loved being outside and it was a perfect day. 

In November of 2015, shortly after Evelyn turned one year old, her pediatric cardiologist had taken her off her Lasix.   Everyone was impressed by how well she was doing.  She was eating well and gaining weight. She had the best little personality and she loved her family and her puppy “Dute” (his name is Duke and he is a Siberian husky).  She carried a stuffed husky, her “Dute”, and a blanket everywhere she went. 

Evelyn was scheduled for a six month follow up appointment with cardiology in May of 2016.  She would not make it to that appointment, on April 11, 2016, our sweet little girl gained her angel wings.  Not one of us imagined that it would happen to our Evelyn. Unfortunately, that’s the reality of CHD. We continue to honor her each year at the Omaha Superhero Heart Run. 

Evelyn taught us so much about life and love. 

Not a day goes by that we don’t long to hold her, kiss her, and tell her how much we love her.  We know we will be with her again someday but until then a big piece of our hearts will live in Heaven.