Big Day tomorrow!

Tomorrow is the big day! I think there will actually be many more big days to come (Simon coming home from the hospital, Simon getting off his feeding pump, etc) but getting legally married is pretty big :-) For those of you who want to come, it will be at 4 pm in the Courtyard- check in at security to get a Floor 1-2 pass, go to the 2nd floor and follow signs to the Courtyard. And please, don't touch the bears. I mean, Simon.

We'll post some pretty, pretty pictures after the ceremony. In the meantime, enjoy these cute pics of Simon with is cousin Maya, Mama and Mommy.

I got one word for you. Trouble.

PopPop and the weekend are here!

Gosh I love weekends. This weekend a little more so since my Dad's visit started this afternoon. Shimmy was so glad to see his PopPop and was giving smiles all over the place. That and being a little fussy going to sleep but whatever...
Simon put on 3+ ounces since his last weight and that's awesome. He's still upchucking some but I'm ok with it, except for when it's first thing in the morning and I've forgotten to put the towel over my shoulder before picking him up. That's makes for a great smelling Laura for the rest of the day.
As much as I am so grateful for Simon's movement right now I do have to say that there is some crazy in the air these days. Things have been a little intense at CHO right now with neighbors and our friends on staff here. My heart is going out to lots of folks right now. I feel like I have empathy coming out of my ears with setbacks for folks close to us in the Annex and just a whole lot of love for Esther, our dear friend at the security desk who had a loved one recently diagnosed with cancer. There have been a number of babies in the ICU recently coming from abusive family situations and more than a few older patients that seem ok when they come in but get disturbing news once they're here.
It's tough, when our curtain is drawn it feels a lot like we have our own little pleasant space with a nice window view of the Oakland hills. Then there's the reality that a curtain is in no way a sound barrier and no matter what I do to try and not listen to what's going on, I can't help but hear certain things and of course sounds of distress and/or pain.
I try and talk with Shimmy about it, letting him know that he's doing ok and it's also ok to send other people love and light when they're not feeling so good. That and we like to bring in Arizmendi bakery treats for our friends that are on regular diets. Love, Light, and Sweet Sallys.
Thanks and Love to all in this exciting time

Officially Official

Today as I walked into the ICU even before I went to see Shimmy, I saw Brian, our new resident. I asked if Simon's BNP was back since it was Thursday. He hadn't checked yet but would let me know.
As I went to check in on Simon he followed right behind me checking over his papers. He said "oh I'm sorry, it's right here."
It was then, as non chalant as can be, he said "it's 798." I thought I hadn't heard right. 7 and 9 and 8. Down from the 1700's last week.
We're below a thousand folks!!
It wasn't until later that morning that I got the official word from Dr Newkhumet. She came by on her cardiac rounds and seemed just pleased as punch. She said it's not very often that they get to deliver the happy news and once a cardiac patient's BNP drops below a thousand it's official that he's in recovery.
FUCKING AWESOME!!! and a little terrifying but really...we're doing it. Simon's heart is getting stronger, he's growing, and we're on our way to some kind of recovery. We're not in stable land anymore, we're in recovery.
I don't quite know what to think or feel. In some weird way it's the surrealness that I felt when we first came to the hospital. Just a big WHAT?!?! Only this one feels that much lighter and full of Joy.
It's still hard to feel grounded in it and believe that it's not going to go away any second but dang it, it feels good.
PopPop Bernie comes in tomorrow and I can't wait to see his reaction to Simon. It's been almost two months since he's seen him and I think he's a completely different being from who he was back in late August.
10$ says he'll cry, any takers?
So much love and gratitude to all that have read, thought of, sent love, food and healing vibes to the little man. So glad to have you with us.

Going Down

We're at .6 on the Milrinone today folks. Tomorrow .5 where we'll sit for a while and just make sure that Shimmy's doing ok. I really hope that he can handle the wean. For most of today he seemed to be doing beautifully. Tonight as he was going to sleep his heart rate seemed a little higher than usual but he was also almost asleep when he was stimulated out of his sleepiness. I don't know. It's too easy to get really worried as things have been going so smoothly. It seems like it's been weeks without any drama.


Simon was doing beautifully today though. He was so happy when awake and went to sleep so easily for his naps. His breathing is so much more relaxed and his output is right in line with his input. Today he got to have some wonderful Grandma time with Mamaw D and Grandma Nola. Very sweet.

Our nurse David did Simon's hair tonight. Instead of the comb forward he got radical and went for the comb back. New look for Shimmy? You decide.

Send Simon strong healing thoughts please as we move forward with trying to get home.

Love to all.

And we're off...

Shimmy began his wean from Milrinone today. we've gone from the .8 that we've been at for weeks down to .7 and tomorrow .6

Last night we also moved up on his Coreg and from IV lasix to Oral. We're closer to going home. Who knows how close but closer than we were before.

It's seemed to be going super duper today with the little man having some great time with Blarry before they headed home tonight.

He napped well, had a nice poop, and aside from being a fuss bucket while getting an Osteopathy treatment, had another stellar day.

I actually had my first real sob session that was rooted in joy and not fear or sorrow. I was in the rocking chair with Simon for his 2nd nap and just watched him fall asleep so peacefully and was overcome with this feeling of 'we're making it through this, we're really making it through this'. It was like slipping into a warm bath after coming in from the cold. That simple feeling of comfort that's a full body experience. It was a moment and I was glad for it.

How cute is he??

Sunday, Sunday

We've been having so much fun with the Great Uncles and Great Aunts and I got to spend a good chunk of alone time with Mr. Shimmy. My Aunt and Uncle (Dad's brother) came to visit yesterday and Laura's Uncle and his partner are visiting from NYC.

I'm *really* exhausted these days but so glad for the weekends and bits of morning and evening with Simon and Laura. They're going up on his Coreg tonight and will start the Milrinone wean tomorrow. We could have the wean done in a week and a week of observation and then....? I won't even say it so I won't jinx it. But it's good :-)

Sometimes we posed for the camera with our lovely visitors

Shimmy with Great Uncles Barry and Larry

Sometimes we got into a little bit of a mess:

Sometimes we did a little cross dressing:

The Trader Joes fairy visited again today, god bless her. She brought a signed poster from my dance troupe. It's crazy cute. We're going to need our own museum to hold all the memorabilia from this time. I'm almost starting to think of all of this in the past tense, like "remember when all hell broke loose and everything fell apart and it was the most beautiful, horrible thing we could have ever imagined? Ha ha, doesn't that all seem like a dream?". I can't wait to get to the day when this all seems like a really strange, distant dream that happened to someone else...