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 - 2/8 2pm

Dear all,

After sending our email update last night, we learned that in fact Eliza had begun seizing again as of 6pm. She has continued to do so since then. The next step, which is perhaps in progress already, is to use a different drug to induce another coma (an even deeper one, as we understand it) and to again hope for 48-72 hours seizure-free. The muscle biopsy has yet to happen; that, along with another MRI to look for signs of continuing brain damage, should be completed by the weekend.

The doctors continue to be baffled as negative test results trickle in, and despite their increasing hopelessness, we continue to pray for a miracle. Please join us in praying specifically that Eliza's little body will continue to endure these many powerful medications with few side effects, that the MRI and muscle biopsy will bear positive results, and that we will find rest and comfort as we trust in God's perfect will.

Although it took two people and a full five minutes to accomplish it, we were allowed to hold Eliza (and all her equipment!) for a few minutes today. Who knew a six-pound baby could be so difficult to move? We were grateful for the opportunity, as we haven't been allowed to hold her at all since her second day of life. I have attached some pictures, which our nurse, who fancies herself a professional photographer, was gracious enough to take for us, even doing her best to hide as many wires and machines as possible. I suppose these may be a bit shocking, as most of you have not seen a photo since those we sent out from a week ago, but we thought you might like to have an updated image of the little girl that so many of you are thinking about and praying for.

We are grateful today, as every day, for all your expressions of care for us.

Love,
Daniele (for Sam, Luke, and Eliza)