Wednesday, August 30, 2006

Still Stable

Hi Everyone,

Sorry I was out of touch yesterday, just trying to maximize my time with the baby. Well I'm happy to report that I did well on "Night Watch" on Tues. night staying awake until 2:30am. When I woke Ian for shift change, Grace woke up and insisted on watching T.T. (what she calls T.V.) downstairs. Ian and I were thrilled, jumped out of bed and headed for the family room. She sat in my arms and watched 1 episode of Dora. She then asked to sleep on the couch. We made a bed for her on the love seat, pushed the couch across the room so that the seats of the love seat and couch were touching and then Ian and I slept beside her on the couch. I woke up at 6am wedged in the crack between the love seat and couch as they slowly slipped apart since going to bed at 4am. Grace was peaceful and we truly enjoyed our couch "camp out". In the morning Grace vomited... seems everything we fed her in the last 48 hours so the doc has really cut back on her feeds, now just 20mls of electrolyte fluid 3 times a day. Its hard to watch her loose so much weight. We can see her little ribs quite well now. I asked the doctor if anything could be done, she said it was part of the process and some mothers find it helpful if someone else changes their child's diaper and sponge baths them so that the mom does not have to witness the deterioration. Mentally maybe this would provide me with stability but at the same time it would rip my heart out not to care for her in her final days so I (with Nana being a huge help of course) will continue to care for Grace. Yesterday she stayed downstairs all day... mostly in her Thomas bed but in the evening my dad and Ian set up a double box spring and mattress in her play area of our family room. This was sad because to fit the bed her little table and stools had to be moved to the basement. I had a little cry to mourn the fact that I will miss seeing her sit at her table to colour... telling everyone joining her at the table what colour crayon they are allowed to use and what picture she would like for them to colour. I'll also never forget last Mother's Day when we were home on a pass from the hospital. Ian insisted I stay in bed while he and the baby make me breakfast. When they called me down, they had breakfast set up at her table and stools in her play room and she was beaming, full of pride that she was "hosting" breakfast. All this being said, I must admit that I slept much better on this new bed set up then I did in the couch crack. Ian stayed up the night so I could have a good sleep (medicated of course) and he and the baby sleep now. Earlier today, we had molds done of Grace's hands and feet. I was nervous that this would upset her but I knew it would be something that I would be happy to have in the future. A girl I used to go to high school with (Kim Scott) came to the house to do it (does this for a side business). Most importantly it was nice to see a friendly face, secondly she was absolutely wonderful with Grace and the entire process was completed without even a fuss and finally it was another reminder to Ian and I that we are going to get through this nightmare, how could we not when we are surrounded by so many wonderful people??

Hope you are all keeping well.
Love,
Les

1 Comments:

Blogger Elvira said...

Dear Les,
I was so hopeful for you when I last saw you at Sick Kids, when my best friend's son had just been diagnosed with Leukemia...You were just beyond graceful, positive and completely inspiring to me...
It's been a few months since then, and I can not comprehend Grace's condition now...I have been reading your Blog and I feel the need to share with you how you have touched me...I sense that although Grace may have only graced us with her presence for a short while, very few families can say even at the end of a long life together that they will have felt the enormous intensity of love that you and Ian and your extended family are feeling for your precious angel...This completely inspires me and brings me a sense of peace, since I find the circumstances you have been faced with are so wrong & unfair...Your family will always personify the epitomy of love and grace...Please know that my thoughts and prayers are fiercely with you. God bless you all, Elvira

7:28 p.m.  

Post a Comment

<< Home