August 4, 2010 - September 3, 2010
|Lilly wearing a dress from one of Tabby's dolls|
Lilly turned one month old on August 4 and within days, we had cancelled hospice. Yay!
We also started the search for a heart surgeon to repair her VSD. (She had a large hole in her heart, and a 2nd smaller hole.) Even though we live near several excellent hospitals, she was denied heart repair surgery because of her Trisomy 18. (The team claimed it was "unethical" to repair her heart since she was going to die soon.) We were not surprised though, as we had been warned it could be hard to find help.
We did however, find an excellent cardiologist that was local. Dr. R was kind but seemed a bit hesitant in working with us at first. But as Lilly continued to survive month after month, Dr. R became one of her biggest supporters and always greeted her with a big smile. After examining her heart the first time, Dr. R prescribed Lasix for her. She remained on that drug until after her second heart surgery.
She was still tiny but alert. Tabby and I said she was like having a living baby doll and we loved dressing her. She wore preemie sizes for awhile, my only baby to ever do so.
Through our Now I Lay Me Down To Sleep photographer, we found out about Focus on the Family looking for pictures to use in a new booklet they were publishing called Gift of a Lifetime by Tammy Tate. (
"My help comes from the Lord, who made heaven and earth." - Psalm 121:2