HOPE'S STORY, PART 2: "IT BEGINS..."

The five weeks we had Hope with us, I only wrote in my journal a few times.
I felt it was important that I write while Hope was with us, while I was feeling all the things I did.  But it was also hard because I didn't ever want to let her go.
I have a total of three entries, written while my sweet Mom held Hope right next to me.
Because I didn't write that much, I am grateful that my mom kept a running 'journal'--actually a group on Facebook that she would update almost every day.
The next few posts will be from the chain of updates from my mom, mixed with excerpts from my journal, and pictures of Hope.
There are parts of this story that are hard, but I hope that what you leave with is an assurance
that there is still light when all seems dark, that very hard times can be some of the most empowering times in life, and that any two people can overcome anything, if one of them is the Lord.

Before you read what is written below, you need to know something.  The doctors had told us Hope's condition was "not conducive to life."  But what that would ultimately look like, we didn't know:  would she not be able to breathe once she came into this world?  Would she not be able to swallow?  Not have a gag reflex?  What would be the actual cause of death?  As it turned out, Hope had no desire to eat.  It was almost as if she was just enjoying the time she had here, and knew she had to go.  She ate almost normally for the first week of her life, then gradually refused, no matter how long or hard I tried or what methods were used.  This is why you will read frequent references as to whether Hope ate or not.
Love, C

Mom's Update on Facebook:
September 30, 2011 (exactly one week old-Hope was born 23 September)

Yesterday the pediatrician and the neurosurgeon told Caeli and Tyler that Hope's encephalocele was definitely inoperable and that her infrequent eating and sleepy state was a sign of her decline. To cheer up Caeli, Tyler took us to the Thanksgiving Point gardens and Hope opened her eyes and smiled and then when we returned back home she opened her eyes a lot more and then ate a big meal.  Today Hope is one week old and hospice called to make arrangements to come tomorrow to see if they could bandage the encephalocele to protect it from bumps and give Caeli and Tyler some morphine for her if she should start to feel any pain. Tyler took us to Snowbird where we took a tram up to the highest peak and Cedar took lots of fun photos of Hope in her car seat in the mountains. She slept peacefully with her cute little ladybug hat. Caeli and Tyler planned a date night at home tonight with Hope... Hope has not eaten yet today the last we heard (about 7 PM). Hael (Caeli's brother) will fly in to Salt Lake City tomorrow at noon. We plan to all be together to listen to General Conference on the grass in Temple Square tomorrow afternoon.

On the Snowbird Tram

Snowbird Summit