Ava’s story begins on November 20, 2013 when we found out we were pregnant with baby #2. We were so excited to have her enter into our lives and bring joy to our family. We began to build our lives around the growth of our new family including moving our family from the City back to the suburbs. We had great visions of our new family life in the burbs with great dreams for our girls.
At our 20 week ultrasound, February 26th, 2014, we were told that Ava had a rare congenital heart defect called Hypoplastic Left Heart Syndrome.
Further testing throughout our pregnancy would reveal that she had other congenital heart defects called coarctation of the aorta, ventricular septal defects, and Shone’s syndrome. We were educated about our options, those being to terminate our pregnancy or accept the risks associated with bringing Ava into this world.
This decision required no thought as we vowed to do whatever it takes to fight for her life. We cried ourselves to sleep each night and woke up to tears each morning for the first 2 weeks. We were devastated. Our lives had instantly turned upside down.
At week three we gained the strength to accept this life challenge and to embrace it. We changed our life’s focus to doing whatever was needed to support Ava and her cause. We postponed our move back to the suburbs and rented a tiny one bedroom apartment 2 blocks from the hospital. We were all in with this decision to stand by Ava and do whatever was necessary to support her.
Ava was born on July 16th 2014, it was such a joyful moment to meet this little girl that we had been so worried about and so anxious to meet. She was beautiful!!!! Ava was immediately transported to Ann and Robert H. Lurie Children’s Hospital where she would begin her journey. At 7 days old, July 23rd, 2014, Ava had her first open heart surgery to repair her aorta and place a band around her pulmonary artery (PA) to help restrict flow into her lungs from the right side of her heart. She had what is called a coarctation of her aorta, which means a narrowing or pinching off of the aorta. She recovered in a week, and we were home by the time she was two weeks old on July 30th, 2014. We were so excited and hopeful. At home now, Ava had an NG tube to help her eat for two weeks and we were able to remove it because she was thriving. We were so happy!!!
At 7 months old, Ava was back in the hospital for her second open heart surgery. The MRI imaging taken in December of 2014 showed that her left ventricle was on the border line of being able to provide enough support for thriving and life so the team made the decision to go with a two ventricle repair of her hypo plastic condition. So the decision was made to close her ventricular septal defects and take down the PA band that was placed back in July. This was a much more difficult surgery and recovery, she spent 6 weeks in the hospital recovering. Ava came home to us again and this time recovery provided a much greater struggle for our little girl. While Ava was trying so hard to be a normal little girl she was prevented that opportunity due to her condition. We spent the next 3 1/2 months needing countless amounts of medication, her constant sickness including vomiting every half hour and the constant worry of whether or not she would make it through each night. This was by far the most difficult challenge we had ever faced and at times we questioned whether or not we could make it through it all.
Ava started to progress, her health began to thrive even through there were still many struggles. In April 2015 we fulfilled our dream of moving our family back to the suburbs to start our new life. We were very hopeful of Ava’s recovery and the doctor’s ability to save her little heart. Ava thrived at times and had many setbacks over the next couple of months. She was still a very sick little girl. On August 18th Ava’s little heart could not take anymore and it started to go into heart failure. She was rushed to the hospital where she declined quickly over the next 12 hours requiring intubation. It was at this time that we were told that there was nothing more they could do to try to save her heart. Once again we were devastated!
We had some much hope that our little girl’s heart was going to be repaired only to have to start all over again with so many uncertainties. On August 25th, 2015 Ava was placed on the heart transplant list status 1A. She is our little fighter and proves to us everyday that she’s still in this. She’s been in the hospital now over 100 days…paraflu, central line infection, and now pneumonia…she just keeps fighting…waiting for her gift of life from an angel. We know she will get her chance, but for now we just support her in any and every way we can. We’re so thankful for another day, and HOPE to have a tomorrow.