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 - 2/27 7pm

Dear all,

Eliza had a 40-minute EEG today, the preliminary results of which are the same as last week: no seizures, but no normal brain activity either. The neonatologist doesn't seem too concerned about this; she says that it is not unlikely that Eliza could take several weeks to recover. As Eliza seems to be acting more like a normal baby these days, we'll just wait to see how she continues to progress. The gradual weaning from the respirator continues. During the day, Eliza does all the breathing on her own with pressure support only and very few set breaths; at night, she's given breaths in addition to the pressure support to allow her to rest. This is apparently the best way, if a slow one, for her to build up her lung strength.

Sam's on the mend, too, by the way!

"He will have no fear of bad news; his heart is steadfast, trusting in the LORD." Psalm 112:7.
Please pray for our family's heart to be united in this attitude.

Love,
us

New to our blog? The story starts here.

Slideshow of Eliza's first year

Online photo album

Blog Archive

Fall 2007

Photo by Paul Wingler

Photoshows of our family

Check out Eliza's new ride: a Bundleboo!

Monday, March 13, 2006

Eliza Update - 2/27 7pm