Hayden Faith was born 10 weeks premature in January of 2009. She weighed 3 pounds, 4 ounces. While her prematurity wasn't a surprise after 3 months of bedrest, her heart defect wasn't discovered until she was 9 days old. She was then transferred to Children's Hospital & Medical Center in Omaha where we learned that she had a Complex Congenital Heart Defect. It was terrifying, but the transport staff were very professional and considerate of our emotions while getting her ready for the move. The doctors who explained her condition to us were very thorough and patient through my tears while we tried to wrap our minds around all that was to come. Not only did our 3 pound baby girl need life-saving open heart surgery but she would face many more surgeries in her lifetime.
Hayden technically has 6 different defects. Basically, her aorta was not properly formed and she had several "holes" in her heart. Hayden's surgeon, Dr. Hammel, explained in detail what was going to be done and what we could expect for her recovery. Seeing her after that first surgery was heart wrenching and a relief at the same time. We were so thankful she had done well during surgery but knew she had a long road ahead of her. She was so vulnerable and even had to have her chest left open for a few days to allow room for the swelling.
The nurses at Children's were absolutely amazing. I had a desire to learn and understand as much as I could about Hayden's heart and her recovery. They never seemed to tire of teaching us about her heart and how everything worked together. They adored Hayden and it showed. They would keep her clean and comfortable and even put fancy bows in her hair. Hayden was scheduled to come home on my birthday. However, when I called around midnight that night to check in, I was told that she had taken a turn for the worse. She ended up having a second open heart surgery before finally coming home to us for the first time. She spent a total of 92 days in the hospital. On April 20th, when she was three months old, we finally got to bring our precious little girl home. Her big sister Payton and big brother Trey were delighted! Hayden didn't pack lightly when she moved home. She had a feeding tube, heart monitor, oxygen and several medications. But she was home and we adjusted to all her equipment and a lot fewer excursions away from the house.
Hayden then went in for another open heart surgery that fell over her first birthday. While it wasn't a great way to spend her special day, she left the hospital in great shape. Since then she has been able to get off of the oxygen, heart monitor, feeding tube, and a few months after was able to wean off of all her medications.
At some point during her first week of life, Hayden suffered a minor brain injury. This injury didn't appear to have any effects until she was about 10 months old and we noticed she was weaker on her left side. She went through about a year of physical and occupational therapy and still does speech therapy. Her progress has been amazing and she's gained a lot of strength in her left hand which was the area primarly affected. Hayden will continue to need heart surgeries in the future as she grows, so she visits her cardiologist for frequent check ups. Currently, things are looking good so she is focusing on being less of a patient and more of a kid! She has a love for life, a great sense of humor and is extremely affectionate. She lights up our days and we are thankful for every moment we get to share together.