Our Leilani was born on March 14th, 2023. She was 8 lb.s 2 oz. and was the most beautiful baby we had ever seen. She came home shortly after spending a few days in the NICU for breathing problems, but overall seemed to be in good health. I spent every minute loving and caring for Leilani until she became sick in Late May. We didn’t think much of it at first, but she started having a hard time breathing. So I immediately took her to the hospital, where they took X-Rays. They sent us home and told me that it was just a cold.
Then I got the call… the call that changed our lives forever. I had to take her back to the hospital. They found something in her heart. Her heart had become enlarged and the doctors didn’t know why. There were so many doctors with varying opinions, but nothing was changing to bring her heart back to normal size. With haste, she was taken via helicopter to Lucille Packard Children’s Hospital in Palo Alto, CA – 4 hours from home. Little did I know that the hospital would become our new home. After several tests, X-rays, and CT scans, doctors still could not find the cause to the enlarged heart. Leilani eventually had to be put on a breathing tube as her condition was deteriorating rapidly.
Still with no answers Leilani’s heart beat became irregular, her left ventricle was 3 times the regular size, so Dr’s had to take drastic measures to save her life. Dr’s recommended putting her heart on a Ventricular Assist Device (VAD). We had no other choice – it was a VAD or we had to say goodbye to Leilani. It took several hours to install the VAD, and I’m so glad we made that decision. Unfortunately, she cannot stay on the VAD forever. She will need a heart transplant, and we won’t be leaving the hospital until she recovers from transplant surgery. We have been in hospitals since June 1st, 2023 with no end in sight.
We live day by day and pray that God will help us through this new reality. We know that every day with Leilani is a gift, and we try not to take anything for granted. Our family has partnered with COTA to assist with transplant costs. We are so grateful for your giving, and hope that God bless you for your generosity.