Our precious daughter Gracie was born by C-section on September 7, 2006. We found out on May 1, 2006 during our routine ultrasound that Gracie would be born with HLHS. We researched our options from when we were told of the defect — it was a devastating time. We ultimately chose the 3-stage surgeries — we felt she had a strong chance of doing well. Gracie came through her Norwood and Glenn surgeries fairly well. She had persistent pleural effusions and we spent a month in hospital following her Glenn. She did recover from the effusions following a thoracic duct ligation in March, 2007 and did very well heart-wise for about 18 months. Her Fontan was planned for Spring 2009. In December 2008, an echo showed her tricuspid valve had significant leakage. I did not understand the severity of this situation and our doctors hoped that the Fontan would improve her valve function. The plan was to surgically repair her tricuspid valve post-Fontan if things did not improve.

Initially, Gracie's Fontan seemed successful and we were released from hospital after only 10 days post-surgery. We were battling persistent effusions once again, but were released with chest tube drains that I handled at home, with frequent hospital clinic appointments. We were in and out of the hospital during June and July 2009, with several surgical interventions to try to stop Gracie's effusions. It became clear that in August, 2009 that our precious girl was in heart failure. She had surgery to repair her tricuspid valve, but it proved to be unsuccessful. Gracie was listed for a new heart, but in a horrible twist of fate, it was found Gracie was not a suitable transplant candidate. She had extremely high PRA antibody levels in both antibody classes - 99% and 100%. The protocol was started to attempt to reduce Gracie's antibody levels. Again, we did not have success. Gracie was also fighting a serious systemic fungal infection as well, which greatly weakened her.

We were in the CICU for Gracie's last 2 months, August and September 2009. We made the decision to bring her home with the help of pediatric hospice on September 29, 2009, when it became clear that our dream of a new heart was not going to happen for our dear girl.

We had 36 hours of peace and tranquility at our home before Gracie passed away just after midnight on October 1, 2009. She was very happy to finally be at home. Gracie was an amazing person - we couldn't get over how happy and content this child was throughout her life. She found joy in everyday things we did together, and didn't ever exhibit typical toddler behavior such as tantrums. She loved her church nursery time, her parent's day out "school", and playing with her brother and his friends. She charmed people wherever we went with her sweetness. I felt I lost a soul mate when Gracie passed away, my only daughter. We had a connection I feel very honored to have shared with her. We were fortunate to have never left Gracie's side during her hospital stays, and I genuinely felt gratitude and appreciation for every day of her life. I thought about this each day, whether during good times or bad.

We are trying to move through our grief in an active, positive way. I want to always honor Gracie by living in a way that would make her proud - she always made us extremely proud. We love her and miss her every minute of every day.