Thursday, October 30, 2008

Tomorrow and Tomorrow and Tomorrow

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Yesterday we went down to .1 and tomorrow, well, tomorrow we just turn the dang Milrinone pump off. Huuuuuge. It's also All Hallows Eve and the veil between the worlds is thin. Shimmy and I talked about how it's going to be a big day and all we have to do is breathe through it, welcome some ancestors or spirits that want to come and visit, and let them know that we're doing just fine, thank them for their support and we'll be staying right here in this world. His Mootie Skeeter made him the most wonderful leather heart outfit so we're going to do it up in style. We were originally thinking that Simon would be a big floppy and flabby heart but we're thinking positively these days so his costume is big but robust, and strong and vibrant. Jaime and I are thinking that one of us will dress all in blue and the other red and be his pulmonary vein and aorta respectively.
Shimmy's BNP was just a little higher this week with it going from 1121 to 1186. That's nothing. I'm not surprised that it's gone up given that we've mostly weaned him from Milrinone this past week. What I am thrilled about though is that it's only gone up 65 points. This from the little man who used to jump a thousand plus points in a week. 65 points....pshaaa.
I can't believe that tomorrow we're turning off his milrinone. It's only been 13 weeks! "only" riiight. He's looking good though and for the first time today an unofficial departure date was spoken out loud. A week from tomorrow, November 7th, they are thinking about sending us packing.
I don't know quite what to do with that. Faint from excitement? Wet my pants with terror? Not believe it and expect something to go wrong? Start bringing things home? All of the above? Not sure at all. All I know is that next Saturday we might be waking up, taking our time getting out of the house, and heading down to the neighborhood Farmer's market. All three of us. Simon will be seven months old next weekend (Sunday) and three months of that will have been spent in the hospital. Several weeks of those three months will have been spent wondering if he was going to live or not. And, several days of those weeks were filled with tears, collapse, disbelief and terror thinking that our time with our little man was about to end.
And here we are on the precipice of getting Shimmy truly ready to come home. Closer than we've ever been before. I know that we've been off the drug once before but not with Simon being so alive and strong and in his body. A body that keeps gaining weight. Last night's weigh in was 6.98 kilos!! Seeing him naked is a true joy each night for his bath. He's loving being au natural too since he's got some body fat going on and isn't freezing his little noogies off. He squeals with delight post-bath while Jaime is rubbing him down with coconut oil. But if course I do that too...just kidding, I don't really like baths :-D
Ok, little giddy tonight. I'll end with an email from our sweet friend Karen sharing a moment that she had on the 24 bus in San Francisco.
Love to all

Karen writes:
got on the crowded 24 divisadero bus this morning, fred and Zu are squeezing our way on. in the midst of the bus we hear a kid say "hey,that's laura's baby!"
and another kid "what? where?"
first kid "that baby on that button" and (to me) "do you know laura?? she's my school counselor!"
turns out a bunch of kids on the 24 were going to CACS (Creative Arts Charter School) in the morning. the most vocal of whom was a girl named Micah(sp?) and she wanted me to tell you hi.
such a small world, such big love for Shimmy.

Ain't that the truth.


Eleanor Chrom said...

Unbelievable! Dad called me this morning very early (before 8 am) to tell me the good news and sent a picture on my cell phone of Shimmy and himself. Only problem is that I don't know how to get to it .. on the cell. Oh well, I'll wait until I get there. Guess what, the outfit that I knitted is also red and blue. Everyone in the family is the beneficiary of a hand knit something
or other..
The stars are bursting in the heavens. Can't wait until we get to see you all.
Love,hugs and kisses, Ellie & Sol.

Eleanor Chrom said...

I think we'll have to celebrate a very special Thanksgiving when we're with you