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...