Hitched!

Well, we did it! Laura and I got legally married today in front of about 30 new and old friends and family in a very sweet and very short (!) ceremony. We had cookies and juice with folks and then went back to our room for a bit. Then my (Jaime's) Dad, Stepmom, cousin, grandfather and his sweetheart came and we ate dinner in the cafeteria. It was a very sweet and exhausting day over all.

We will have more pics soon from lots of folks who were snapping away but here are some from our camera.

Also, here are the words to the song Cody wrote for Simon!

In His Eyes

speechless words with colorful expressions
countless verbs given every which direction
can you feel its so infectious
can you feel it now

a little boy with with love ahead to live for
so much joy with a mom and mom to care for
every bump and every bruise
there's so much he could hold on to

so he opens his eyes, to realize
hes not alone in this fight, we all stand together
hand in hand side by side
with just a single tear, and some happiness, in his eyes

can't defer, hitting those same old potholes
on a long dark road but its the only way to get home
when you're there, there'll be room to grow
building castles on the beach and wings in the snow

moving forward each and every day
with all this hope we'll never let escape
baby steps is a small price to pay
for a long life to lead that wont ever fade away

so he opens his eyes, to realize
hes not alone in this fight, we all stand together
hand in hand side by side
with just a single tear, and some happiness, in his eyes

Here are a few pics:


Lookin' Gooood

Us with our neighbor Jasmine, who couldn't come to the ceremony :-(
Simon with Reverend Doctor Auntie Clay and Auntie Joan

Simon's bed, decorated by our nurses while we were gone

Our TV, decorated

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...

Blarry Visits

Blarry (Uncles Barry and Larry) came in from NYC last night and had a lovely day with Mr Shimmy. Jaime's Aunt Molly and Uncle John dropped by as well so it was a great Aunt and Uncle visiting day all around. Simon was in rare form today only sleeping 30 minutes at a time....I think it's his 6 month growth spurt and we'll see a few days of irregularity and then we'll be back to normal, as normal as one can expect from a member of this family.

Last night Simon weighed in at exactly 14 pounds. That's a weight gain of 2 ounces in two days. Rock On!

Jaime's already talking about how she'll need to be cooking in two seperate modes once the little man comes home. Low fat for the mommies, high fat for PeeWee.

Here are some photos from today.

Gosh I love the weekends.

Simon Meeting Uncle Barry for the first time.

Out for a walk with UJ and Aunt Molly

Pretty Princess Flower

Don't you think it makes my eyes pop?

Rollin', Rollin', Rollin'

Another good day yesterday (Friday). Simon got to try sweet potatoes for the first time and his birth group buddies sent him gifts plus a few for the Mommies. Auntie Alicia brough dinner and Laura and Simon had a couple of other visitors. The love is awesome...

Simon, meet Sweet Potatoes. Sweet Potatoes, meet Simon
A poster from the boys in our birth class. Ouch, so cute!

Shimmy snuggling with his new doll.

6 Months Strong

Simon hit his 6 month birthday today. He's going strong. He didn't fast for Yom Kippur but maybe another year. We had a lovely celebration with Jasmine our neighbor in the PICU and treats that Mamaw D brought in (cupcakes, hats, noisemakers, etc) Simon's sleeping soundly right now (too many cupcakes).
My Uncles Barry and Larry are coming tomorrow and I can't wait for them to meet Mr Shimmy. No BNP # yet but maybe tomorrow. I'm not holding my breath (except secretly hoping that it's down).
We've gone up on the Coreg and word is that we'll try a Milrinone wean starting Sunday.
Love to all.
Laura

Here are some Pics

Mr Simon Lev and Mama

Jaime, Simon, and Jasmine celebrating their 6 month birthdays (Jasmine's birthday is April 8th- One day before Simon's)

Half Birthday Boy

Celebrate good times C'mon!!

Kol Nidre (Rebbe Shimmy getting ready for Yom Kippur- The Holy of Holies)

Shimmy puts on his first yarmulka

Checking out his mommies Talis

What a Mensch

Ready for Services

Yeshiva boy (complete with the lopsided Kipa)

Photo Opps

Shimmy and Dr Saaba With Casey...talking about when they can go get a Guiness togetherToo cool Simon Lev getting ready for Yom Kippur Eve

Simon learning about what a Talit is

All Night Long

So we called early this morning to check on Mr Shimmy before heading over to the hospital and talked to his night shift nurse. Seems like Simon had a night with no emesis at all. Not a spit up, not a puke, no ralphing, not a barf, no blowing chunks, nothing!!! He slept the whole night through from 7:30 pm until about 5:30am. That's my little man!!
By the time we got in he had thrown up a little bit but I ain't bovered.
He's been happy and active this morning with the most gentle "going down" for his first nap I've ever seen.
He's upstairs right now with his Mamaw most likely asleep again for nap A Deux. Can I say once again how amazing it is to have the support of Mamaw D. She comes to the hospital Monday Wednesday and Friday and is just an incredible constant for both Simon and me.
We haven't gotten the official report yet but word on the street is that Simon's Echo Cardiogram yesterday looked "a little better."
We still haven't learned exactly what that means yet but I'll take it. We're going up on the Coreg tonight and not really changing anything else at this point. I suspect that we won't start any kind of Milrinone wean for a few more days but again...I'm ok with taking it as slowly as we need to.
I will say that in the last two days, more than one doctor has mentioned wanting to get us home before Flu season really hits. I suspect that if all goes well with the upping the coreg and the milrinone wean, Shimmy may be home for Thanksgiving and maybe even my November 6th Anniversary.
If not we're already imagining the Thanksgiving in the cafeteria with a mile long table and a potluck to end all potlucks :-)
I know it's far away but it feels amazing to be having far away thoughts versus the three week ago thought processes.
We'll have been here 10 weeks on Friday. We're hitting another kind of stride and I'm feeling both exhausted and rested. It's weird. I'm getting out more for hikes with Roxie, my back is feeling better, Shimmy is feeling better AND it's been 10 weeks of 15 (or more) hour days in the ICU with out a day off.
One day, one moment, nap to nap.
Love to all.

More photos coming soon. Sorry I've been slacking.

Monday Monday

Another beginning to another week. So far so good. Simon's sleeping right now and as I look up at the monitor, his heart rate is 98. I'm thinking about how in a few years I will be helping him understand double versus single digit numbers as we're getting into basic math at school. I also think about how just a few minutes ago I drew up 5 different medications that I subsequently inserted into his feeding tube.
It still blows my mind that this is my experience with motherhood. Quite different from what I imagined and I wasn't even spending a lot of time imagining anything because I knew that there's nothing like it.
My sister once said that having Maya was like having your heart walk around outside of your body. Yeah, I feel like that a lot. I love this little person so much I don't quite understand it.
This morning there was a little bump/dip on the roller coaster ride with Simon not having his regular two naps and having a much harder time going to sleep when he was obviously tired. It was hard to suss out whether or not he was just going through a growth spurt moment of fussiness (and maybe not even needing three naps a day anymore) or was there something heart related going on. Not clear just yet, but he's wearing a heart monitor halter for 24 hours so we can monitor that and I'm not worrying too much since he had a great 2+ hour nap this afternoon and as noted before his heart rate is right where it needs to be right now.
It wasn't an easy morning but both Simon and I seem to be recovering quicker from the bumps and dips.
We had a lovely walk with Auntie Dre this evening and even got to wear the same outfit all day for lack of major spit-ups. Nice.
I still don't know what to wear to our Hospital Wedding. I might try on my tux to see if these child bearing hips will fit it but otherwise will need something to at least try and match Jaime in all her splendor.
Simon's tux onesie is too cute. We'll post photos for sure.
Security said that it wouldn't be a problem to have some folks come in as long as we were staying on the 2nd floor so we just need to run it by the Social Worker to get it ok'd. If we were to open it up we need folks to know that
A) We would need to be clear that it's just for the wedding and Shimmy couldn't hang out for very long after the ceremony
and
B) We would need to ask that if folks did come by that they not touch Simon (as frikkin' adorable as he might be) so as not to overload the little man with germs and/or stimulation.
We would start right at 4pm on Sunday the 19th. How many people would be interested in coming? Email me directly at lafitch@gmail.com so we know how many cookies to have on hand.
Crazy.
Love to all
LF

Chill Sunday

Today was a pretty mellow day. Laura slept in and I came to the hospital at 7:30 and had a really nice morning with Mr. Shimmy. He was very chipper and then had a great nap. Laura came in at about 9:30 am and then our friends Anne and Eric came by to sit with Simon while we had a reconvening of our Clearness Committee at our house that afternoon. Clearness Committees are a Quaker tradition where for a year before getting married, a couple meets with a group of people from their congregation to help the couple gain clarity about what they are committing to. Laura spent every summer from age 9 until 31 at a Quaker summer camp and maintains some of those traditions. Ours consisted a group of 4 close friends who met with us monthly for the year before our wedding to help us get clarity about the basics before we married. It was very helpful and one member decided that now would be a good time to reconvene and do a check in. It was great- nothing earthshattering came out but it was a good opportunity to get some support and get some perspective on where we've come from and how we're doing. I'd say we're doing pretty darn good, despite all this really hard stuff. I think they'd agree :-)

Simon puked a little today but not terribly although the nurses reported that he threw up a lot last night. We're taking him down from 27 calories with the addition of the MCT oil to 26 to see if that helps. His stats were good all day but tonight his heart rate looks just a smidge higher (high 120s and 130s while awake) and I'm trying not to be worried. We've also been trying to accurately track his weight but it's been hard b/c he's such a wiggler.

Laura and I have decided to get legally married before the November ballot initiative and will be doing a tiny little quick ceremony at the hospital on October 19th. We thought about having all sorts of folks come and realized it would be a security nightmare for the hospital so it will just be immediate family. My grandfather and his new sweetie, and Laura's dad will be in town that weekend and our new hospital friends won't be working that day, so we picked the 19th. We also figured we had the best big fabulous wedding we could imagine almost 3 years ago, so we'll just do it really simple this time. I'm guessing 10 minutes, tops :-) I am, of course, going to wear my dress again, because...I can. Carol, Simon's PM nurse bought him an ADORABLE tuxedo onesie for him to wear. Laura is not sure what she'll wear but I keep telling her to go for a tuxedo t-shirt.

I'm really tired this weekend. I've been giving all out in all realms and I feel it. This really is a marathon...