Eliza: Eliza Crowley Jakson

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 Crowley Jakson - 2/2/06 11pm

Dear family and friends,

Thank you all for keeping us in your prayers, and thanks for all your phone calls, emails, and other well-wishes. We're sorry to have missed responding to so many calls and emails; we hope from now on to be able to keep everyone posted by email as often as we can, as it will remain a challenge to respond promptly to phone messages. Please forward this to anyone we may have missed or anyone else you can think of who might like to hear what's going on (e.g.: All Saints (David), DTCC (Laura), Soccer team (Yoder)).

Here's a summary: Eliza Crowley Jackson was born on Sunday, January 29 at 7:07 am. She weighed 6lbs 8ozs and was 19in long (almost exactly the same as her big brother!). She has a strawberry blonde mohawk, as you'll see from the attached pictures. Despite the coloring difference, she looks a lot like Luke did when he was born.

Since birth, Eliza has been suffering from seizures. She is now in the NICU at Duke Hospital, being monitored and evaluated by neonatologists and neurologists. So far, we do not know what is causing the seizures, although we do have some ideas of what is likely NOT causing them. It is probably not an infection, probably not bleeding in her brain, probably not a major brain malformation. The next things to look for are metabolic causes, biochemical problems, or minor brain malformations, as we understand it. Some of these tests should come back soon; others may take a week or two. She's also awaiting an MRI, which can't be conducted until she is more stable.

Eliza is currently heavily medicated and sedated to try to control and prevent the seizures. She will certainly be in the hospital another two weeks, perhaps longer, depending on when test results come back and what they show. You'll see from the pictures that we were able to hold her a little bit at first, before the seizures were diagnosed, but since her transfer we've only been able to touch her gently, and only while wearing gloves, which will hopefully come off today.

How are we doing? We're very grateful to have had Daniele's parents here this week to care for Luke, who has been delighted to teach them all his new tricks. He has asked to meet his baby sister (which he is not allowed to do at this point) but has been otherwise unfazed by the circumstances. Daniele's recovery from the labor and delivery has been speedy. She is currently pumping breastmilk in hopes of feeding Eliza before too long.

As for mom and dad, we have truly been blessed by God's Spirit and His Word through this time. We have experienced a fair share of emotional and physical exhaustion as the hypotheses have been formed and disproven. Sam has cried more in two days than in the last ten years. Nevertheless, we are trusting in God's provision. As Psalm 131 teaches us: Our eyes are not raised too high; we do not occupy ourselves with things too great and too marvelous for us. We have calmed and quieted our souls like a weaned child with its mother. We know that God is in control. We know that there is no unrighteousness in Him. We know that His steadfast love endures forever. We stand on His promises. Eliza means "consecrated to God." She belongs to Him. Hallelujah. May His name be glorified.

For pray-ers: We are planning to devote this Saturday to praying for Eliza's situation. We invite you to join us, wherever you are, in fasting and prayer. If you are local, our door will be open from 1-2 on Saturday afternoon for communal prayer. All who desire to offer prayer and thanksgiving to God the Father through Jesus the Son by the power of the Holy Spirit are welcome. This will not be a structured time, nor is it an information session. It will simply be Brothers and Sisters engaging in the great privilege we enjoy in the mighty name of our Messiah.

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