no date yet

ya ya ya i know you're all waiting to hear when his surgery will be - we are too, still. when Dr. Human said "maybe 10 days" he seemed instead to be predicting when they would confirm a date. he thought we'd have a date yesterday, and today said he would again try and get "surgery" to confirm. he thinks it will be next week... but maybe that's another "10 days".

you'll be the first to know once we do.

meanwhile, we did have a couple more outings. the first, as documented below, was to the great grandparents. for the second, Ford and i drove out to UBC to meet Nick and lounge about on the grass. for the third, we went to visit our friends Paige, Hart and Asha and lounge about on their living room floor. each outing was a great adventure. i learned on day 1 that i rely greatly on the monitor he is connected to here in his hospital room. when he is/we are awake, we turn off the monitor. but we're still always LOOKING right at him. in that first car ride, i felt the grip of panic in my chest with him in the back seat where i couldn't see him. he was quiet and i had no way to tell if he was still breathing, other than knowing he quite probably was still breathing. turns out he cries at every red light (the boy likes to be on the go!) so i had the reassurance at every stop that he was still alive. it is going to take me some time to be able to look away, sans monitor, and not feel afraid.

for our second outing, he just plain screamed for the duration of the drive to UBC. a stress of another kind! but in a strange way i actually enjoyed it. that is because it was having what i think is a normal stressful parenting experience. having the stress of a "heart baby" is not something most parents can relate to, but having the unhappy baby in the back seat is a wonderfully normal challenge, as far as i'm concerned - and there we were, at 4 months, getting to feel it for the first time. "so this is what it's like" i thought. of course when Ford screams his head off, it still is a bit unique as he was drenched with sweat from the exertion and his feeding tube had come out a bit from it. sigh.

on the third outing he resumed go=happy and stop=sad as a passenger. at Paige, Hart and Asha's, they had hung a "welcome Ford" banner and had fresh baked goods to go with it. Ford promptly fell asleep. it was a lovely time.

that was sunday and we haven't been out since. sunday night he was put back on 24 hour continuous feeds. to facilitate our leaving the hospital, his feeds were condensed to be given over 20 hours, so that for 4 hours he could be unplugged and mobile. but it was kind of making him barf all the time. we loved the taste of freedom, but not at the price of consta-puking-baby, so agreed to slow the feeds back down and stay put.

another way we could get out is if a portable pump were available. Dr. Sarah is trying to get us one. the hospital won't give us one since we're not technically outpatients, so the social worker (Daniel? Dennis? he looks like Gordon, in his younger years, from sesame street) is approaching variety club to pay for a rental. hopefully that can be arranged before the next surgery - having these small moments of a much more life-like life is like an oasis in a desert, and we've got to fill up our camel humps to get us through the next long haul.

on a different note, thank you to whoever left the anonymous gift in our mailbox wrapped in the "take thai home" coloured peice of paper! what a surprise and mystery - we had a great lunch with that, thank you!