Aniston's Story
About Our Girl
Aniston Rae was born on July 7th, 2021 in Madison, WI with Hypoplastic Left Heart Syndrome (HLHS). She came into the world ready to rock. She had a head full of red hair and the biggest, piercing eyes. She was the spitting image of her big brother, and she was absolutely beautiful. Just 2 days after birth, she had her Hybrid Norwood procedure, then her Norwood open heart surgery, 9 days after that. HLHS is typically a series of 3 surgeries, but this varies with every baby. She spent the first 51 days of her life in the hospital and had already undergone 2 open heart surgeries before we were discharged home. We were so incredibly proud of her and were ready to be a family of 5, back home in Iowa.
Life With Aniston
Life at home with Aniston was challenging but incredible. Aniston had a G-tube and required extensive medical cares and a strict feeding schedule, along with medications that she would need daily. It was challenging, but she was perfect. She taught us so much about life and to enjoy each day. She loved her siblings and was the perfect addition to our family. She loved listening to her brother read books and watched her sister play barbies on the floor near her. She loved listening to music and dancing in the kitchen with Mom. She would spend time with Dad pulling on his beard, and she enjoyed going for walks, playing with her toys and she was the best little traveler you could ask for.
Changes Ahead
Shortly after her 3rd procedure (the Glenn) in January 2022, she began to struggle with her oxygen saturations and was in complete distress. She ended up being admitted at the end of February where we were eventually transferred to Children’s Wisconsin in Milwaukee where they had a heart transplant program. Things changed so drastically, and her plans changed by the day, but we remained optimistic that what she would get the help she needed. She was officially listed on the heart transplant list on St. Patrick’s day. She had many setbacks and on April 19th, she was placed on ECMO (heart and lung life support.) She was so medically fragile, but we held on so tight to our girl. On June 21st, we received the news that she would receive her second gift of life when a heart transplant was received. Her surgery was very long and stressful and she would go on to have more complications from this surgery. Aniston’s new heart struggled, and her body tried its best to accept it but she grew so tired. Our biggest fear became true and we were left to say goodbye to our girl on July 21st, on a Thursday evening, when the summer sky was pink and with all our family by our side. Aniston has made such an impact on all of us and she is one of our biggest blessings. We are so proud to be her mom and Dad and to share her story and all that she went through. She is our heart warrior and we’re so lucky to call her ours!