Eliza: Eliza Update

New to our blog? The story starts here.

Eliza Crowley Jackson was born on January 29, 2006. Before her birth, we had no reason whatsoever to believe she would be anything but a healthy baby girl. But as soon as she was born, it was clear that all was not well. Eliza had lesions (holes) in her brain, seizures which could not be controlled by medication, a shunt to control hydrocephalus, and many digestive health issues, among other things. She had no voluntary movement, was fed special formula by a pump through a tube in her abdomen, had no muscle control or development of any kind. She was all but in a vegetative state, and despite having received some of the best medical care in the world, was not expected to survive her first year. In fact, on April 9, 2006, when Eliza was ten weeks old, she was discharged from the NICU to come home to die. But even as Eliza defied diagnosis or a cure, she also defied predictions. For a terminally ill child, she lived a remarkable almost-three years, passing away peacefully at home on December 12, 2008.

This blog is a collection of emails we have sent to family and friends over the course of Eliza’s life. The content ranges from medical updates to theological reflections to family photos. The entries appear here in reverse chronological order, so go to the oldest entries in the archives first if you want to read her story from the beginning. We have updated the blog irregularly, mostly whenever there was medical news, a new lesson we were learning, or a photo worth sharing.

We pray that you will be blessed to learn of our family’s hope. “But in your hearts acknowledge Christ as the holy Lord. Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have” (1Peter 3:15).

Want to contact us? Send us an email at shdbjackson@yahoo.com.
Want to keep up with what Daniele has been writing recently? Check out http://abitmoreofme.blogspot.com.

Monday, March 13, 2006

Eliza Update - 3/5 7pm

Dear family and friends,

This evening, having been told that our baby was doing better thanks to God's provision, the elderly cashier at the parking garage said, simply, "But you asked." What a difference asking makes. We too often prefer to cower in our shelters of self-importance, nursing self-centered ambition. Praise God for His mercy in Jesus Christ to call us and draw us out. "Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you." (Jesus in Matthew 7:7)

This morning brought a slight setback: apparent reflux due to the weakness of the esophogal sphincter. Since the respirator holds Eliza's epiglottis open, any milk coming back up could easily enter the windpipe. Instead of giving drugs, the nurse practitioner decided to start continual feeds. Eliza's stomach might tolerate the same total daily amount of milk if we spread it out over the whole day instead of giving it every three hours. This was partially successful, but, as of 1pm, Eliza still showed signs of reflux. At this point, dad got to hold Eliza up on his shoulder. For those four hours (!), Eliza rested peacefully on dad. In the face of a discouraging sense of uselessness as parents, this was a wonderful and encouraging answer to prayer.

All efforts remain concentrated on getting Eliza off the breathing tube. The current schedule should lead to an extubation attempt by week's end.

Attached are some more recent photos of Eliza. The first is of Grandma 'Cinda's visit (Sam's mom) during the week of February 13. The second is of Nana's visit (Daniele's mom) around February 23. The third and fourth were taken during the past week. What a long way we've come in such a short time! Praise God!

Love,
Dixie Jax