Friday, September 19, 2008
Delicious Sweetness Over the Last Day
Good lord it feels better to have a good day in the ICU than a bad one. There's not much like a bad day in the ICU. No puking last night on the 24 hour feed and he slept through the whole night! Looking much better today, more chill breathing, etc. I think part of it is that they switched his NG tube to the other side
The sweetness..let's see...
Starting with tonight- friends brought us Shabbat Dinner complete with Chicken Pot Pie, challah, grape juice and candles.
Another friend brought a 2 pound tub of red vines, not even knowing that those are Laura's FAVORITES plus trashy magazines and new pacifiers.
Another friend brought his teddy bear, Boo, that was his special stuffed animal when he was a kid for Simon to have while he's here and his girlfriend brought the squares people made at our shower, now sewed into a prayer flag type rig that we can hang up in our space here.
His Great Cousin Sol from Canada sent a Canadian Mounty Beaver Doll.
Carol, our regular evening nurse, brought in a bag for us to have a "date night" that had all sorts of sassy things including chocolate sauce, a tart, chocolate covered chili spiced mango and her very racy naughty boots to borrow. I think I'll do a little sashay through the Annex tomorrow night when she's back on.
Simon is really close to rolling over. Laura and her Mom and my Mom had him playing on a blanket on the floor and he just swung back and forth, side to side. Soon!
Laura also said that today he was really into looking out the window at the cars and people passing by. I guess he can see that far now!
He's been sleeping since I got here tonight, but I'll take that 100x over his being awake and in distress. God, that's horrible.
Much love to everyone. Tomorrow is another day and hopefully a good one!
9:42pm- The little man is awake after a long 5 hour nap that we hoped would just be an exceptionally long night's sleep. No such luck. His circadian rhythm is way off right now but I'd rather he sleep when he's tired than not. Jaime's reading him "Good Night Moon" and I'm hoping that will give Shimmy some good ideas. Alas he looks just pleased as punch to be gnawing on the pages instead of taking the message to heart (hah).
It almost feels normal and just typical baby sleep stuff right now. He had such a solid night last night, I'm still really holding on to that for tonight as well. If he can manage to hang in there GI wise for another 24 hours (till tomorrow night) then the plan will be to start mixing the breastmilk with formula so we can really up his caloric intake. Aside from the heart medication stabilization, weight gain is something that are going to get more aggressive about. It's been an incredible journey to this point and I have to say that I'm feeling really at peace with moving away from the breastmilk/nursing attachment and more toward the "lets get some meat on those bones and around that heart" place.
Turns out that the fabulous weight gain that we thought we had over the last three days was actually some mistaken weights what with his new paraphernalia (eg his halter was on when they weighed him yesterday- derr). I'm still pumping and working on keeping my milk supply up holding on to that connection even without nursing and while it's hard I think I'm going to keep going as long as I can squeeze out even a teaspoon to add to his rice cereal. Yesterday I was almost ready to give up. Pumping is hard. Pumping sucks.
Simon still getting my breastmilk is worth it right now.
Visitor 100 and 101 were here today. Jasmine and Nathan- Congratulations!!! And visitors 1-99, thank you too.
Here's to a good weekend and coming week.