Eliza: Eliza update 3/12 8pm

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 3/12 8pm

Praise God--Eliza is six weeks old today! There certainly were days there when we wondered if she'd reach this day, and we're so grateful to God for sustaining her (and us) for so long.

It's been a slow-news weekend, which is generally good news. Eliza continues to do well as she is slowly weaned from the respirator, and she is steadily gaining weight, hopefully building up strength for an extubation attempt late next week.

Meanwhile, the mama in me decided to reclaim my baby: she's now enjoying a mobile above her crib (which she watches wide-eyed), a white noise machine while she's sleeping (to drown out all the bells and whistles going off around her all the time--who can rest and build up strength with all that noise?), and a bouncy seat for a little semi-upright playtime. She seems to really enjoy all three. I also helped give her a real tub bath yesterday; she didn't like that quite as much! I managed to enjoy it a little more than she did, although I look forward to doing it without the breathing tube getting in the way and stressing me out!

Thanks for your continued prayers and words of encouragement.

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 3/12 8pm