Love the Weekends

Jaime and Simon are snoozing on the chaise lounge right now and I happened to glance up at the monitor where Simon's heart rate has hit an all time low of 91. Yeah, 91. That's so much closer to a normal deep sleeping heart rate than we've ever seen. Something is working right now and the little man is getting the rest that he needs for his heart to have the chance to heal and grow strong. What's just as amazing is that these days when he's awake his heart rate is in the 120's and 130's as well. Unless of course we're changing his NG tube or giving him a shot (we're needing to start his 6 month vaccinations and make sure that he's got a flu shot for the upcoming season). But even then he's recovering quicker.
I believe that we are on the right road.
Shimmy and I spent a good amount of time on our walks these days talking about the Jewish High Holy Days and what a wonderful opportunity this time is for deep healing, fresh starts, and taking in the sacred as it's thick in the air right now. I've been singing to him songs in hebrew and talking about all the wonderful food that comes at the end of Yom Kippur during Liz's traditional Break Fast gathering. He's not so sure about creamed herring but I've told him that we rarely see it anymore since we've stopped going to the Raliegh Hotel where PopPop used to sing for the High Holidays.
We also talk about how even though we're not moving far geographically speaking from Bed #22 at Children's Hospital that there is so much to look and wonder at. From the cars and people that go by the window, to the new scrubs that different nurses have on, to the changing leaves and flowers that we can notice on our daily but same route walk everyday.
More than anything though I have to say that these weekend days are sweet with the three of us spending such wonderful time together. Even though we are not out and about, we are together and it feels just delightful.
So...Nu? We are raising a beautiful baby boy. We are raising him in the ICU yes...But we are raising him with love and support and spirit and joy and books and baths and exciting new outfits to fit his growing body, and so many opportunities for positive connections with his world and the amazing people in it.
I feel joyous today.
Riding the wave for as long as I can.
Laura

Sweeeet!

Today was filled with sweetness.

1. Simon had a great night last night sleeping most of the night AND gaining weight.
2. His BNP came back 1500 points lower!! I know it's not about the number itself but a trend but that's still makes me want to fly to the moon and back.
3. Jaime and I got the most amazing email from the general manager at A Cote
   Dear Laura and Jaime -
   I truly hope you will forgive the intrusion. It's not everyday that we get a comment card with such a sweet and handsome picture attached to it.
   It was with great interest that I read the comment card and with even greater interest that I went to the blog represented on the button.
   Through lots of tears I read about your sweet son, Simon, and his valiant struggle with cardiomyopathy. I am so happy to see that he is doing well and hope he continues to improve by leaps and bounds.
   I have placed the button on the bulletin board by my desk and will be checking in on the blog to see his steady progress. I will be keeping him (and you) in my thoughts and prayers. . .I can't wait for the day that all three of you can return for a visit. . .please let us know so I can make something special for the occasion. . .I so look forward to it.
   Sincerely,
   
   Lainie
   Elaine Osuna
   Business Manager/Pastry Chef
   A Cote Restaurant
4. Simon and I took two great walks during the day.
5. Sonya brought Roxie to the Hospital (not upstairs) and stayed with Simon while the Pup and I got to the beach for a walk with our friends Wowlven and her daughter Elka Rose.
6. Jaime got to come back to the hospital for a couple of hours during the day instead of working 12 hours straight.
7. Shimmy started on his higher calorie formula (that's hopefully going to be easier on his stomach)
8. We got a delicious homemade dinner (and lunch tomorrow) delivered to the hospital.
9. Our most amazing Osteopathic Dr (Patricia Rochette) did a house/hospital call and worked on Simon right at his bedside. {This was so amazing to watch as Simon fell into deep relaxation sleep minutes after she started working on him and was the most relaxed I have ever seen him both with his body (allowing it to be gently manipulated) as well as in his heart rate and breathing- Rock On Osteopathy}
10. Rambod, our new Fellow, couldn't help himself and at the end of rounds said "I love you" to Simon in parting. I think he was a little embarrassed about it but it just showed once again what a love generator the little man is. You can't help yourself.

A giant hug from Shimmy (and me) to you all.

Laura

Keep on keepin' on

Another day here in the Annex and Shimmy's doing everything he needs to do. He's napping like a champ. Not hurling as much. Keeping his heart rate nice and low and having quick recovery after we do something that pisses him off (like changing his NG tube after it got nice and clogged today). So no big changes.

We're getting ready to go up on our calories again tomorrow morning and hoping to do it nice and slow over a couple of days so he'll have a chance to acclimate to the richer formula. He needs more calories but while he hasn't been gaining as much weight as we'd like, he's not losing any and that means that we can be gentle with the approach even as we're going to be aggressive with the plan. We'll hear about his BNP tomorrow and we've skipped an Echo so far this week.

Really, we're in for the long haul now and what Dr Patel said today rings very true. We're not looking at any big changes in his plan at this point so it's the little changes that are important now. Things like making sure he's getting enough calories, watching to see how he'll handle his first cold (which I think he is coming down with as I type), things like that.

We met a wonderful circle of women today in the waiting room. I was out eating a little lunch before taking Simon for a walk with Dianne. There were several women visiting a new patient and his Mom and we got to talking (one of them thought I looked familiar from around Oakland). We immediately had a great rapore and I said that I would bring Simon through on our way to the courtyard. 10 minutes later Shimmy was making eyes at all of them and they were blessing him and making sure that I knew that he was "going to be all right, that boy is gonna be just fine."

I think so too. Almost completely. Almost. We have a long road ahead of us but I think we are at least on it. There may be some detours. Rough spots. Pot holes. Construction ahead. Other byway metaphors...bring 'em.

It's been three, count 'em, three days in a row that I have gotten out for a good break in the afternoon thanks to the "get Laura out" team. Roxie and I even went to the beach yesterday and we were both overjoyed about it. My back is too.

The sad news is that I officially resigned from my job at Creative Arts Charter School and while I can't imagine going back to work even part time after Shimmy is out of the hospital (for at least a year) I do love working there and miss those folks and students something fierce.

We are privileged in that I can get on Jaime's health benefits and so don't have the added cost of Cobra right now. So far so good.

Thank you all again for taking the trip with our family through these peaks and valleys. It's been just amazing to have folks from near and far, recent and distant past, let us know that you're thinking of us.

-Laura

Baby Sitting in the ICU

So Auntie Dre and Auntie Joan told Jaime and I that they would babysit for Simon and that we should go out for dinner. Two things happened.


ONE: Jaime and I decided to go out to A Cote in Oakland. It's one of our favorite restaurants and we've gone there for many a celebration. It's also the last place that we went out to with Shimmy. We took G'Pa Bruce there for his birthday in the early part of the summer and Simon had a blast! He was the belle of the ball, making googly eyes with our servers, the hostess, and every table within 6 ft of ours. We chose A Cote tonight because it held such sweet memories for us. While we were there I asked for a comment card and decided to to relay the above story and essentially thank them for the wonderful service, the wonderful food, and holding such a wonderful memory for us during this difficult time. Our server Lydia (who I also think was a manager) was fabulous but a little busy and at the end of the meal we were feeling a little rushed to get back to the hospital before baby-sitting/visiting hours were over. Jaime walked up to Lydia with our credit card explaining that we needed to get back to the hospital. Lydia said that she understood but didn't need the credit card. Yeah, she comped us the entire meal.



I couldn't quite tell what was happening only that Jaime was hugging our server and coming back to the table crying. After hearing that. I too had a good cry and unfortunately for A Cote, we both walked out of the restaurant bawling our eyes out.



If you live in the Bay Area, please patronize this most amazing establishment. Culinarily speaking you will not be sorry.



I won't write about how I had a completely irrational response to this most amazing gift as we were crying at our table. I was looking an amazing gift horse in the mouth thinking "I don't want any more gifts!! I would give all this incredible generosity, all the food deliveries, all the dog walks, all of it back just to have Shimmy at home and healthy." It lasted just a powerful second and then I was back in the moment of feeling grateful but it was there. I had it.



I still love Lydia and A Cote.



AND TWO: Jaime and I returned to Bed #22 to find Simon sleeping peacefully in Auntie Dre's arms. But there was this...captured on film.

Yes, that's lipstick Dre is putting on Simon...

Wow...blackmail material. Lipstick from Auntie Dre and a little treat from Folsom Street fair from Nurse Jordan.

All tuckered out

Nuff said.



Other than that it's been another simple and stable day at CHO. After more puking yesterday and early this morning we reduced Simon's formula from 27Kcal formula back down to 24. I think the 27 was just too rich for him and already he's mellowed some with the gagging and puking. Mamaw D was here for almost the entire day and I got to go home and walk Roxie in the late afternoon. Shimmy's heart rate is beautifully low when he's sleeping and well within normal ranges when he's awake. Granted he's on some powerful heart medications but still...he's at least getting the chance to grow in to it and not have it be stressed or dilated even more.





On a last note, it's the Jewish New Year and aside from it being a wonderful time to think about fresh starts, it's also a time to eat Challah and Auntie Joan made the most delicious one I think I've ever tasted.


Sweetness to everyone.

Peekaboo!

Sunday nights are really hard sometimes. I've felt pretty wiped out this weekend- a lot of big stuff coming up for me right now in various realms and the intensity of the Simon experience has really tapped my buffer. Sundays are hard b/c going from 2 solid days of really getting to see how Simon is and being with Laura to working my butt off at work and being 100% present while I'm there is hard, but I just keep doing the best I can.

Cody, Simon's bard, came by tonight and played us an instrumental section of his song that he recorded, on his phone (!). Turns out he's in a band and has a bunch of recording equipment at home and also records at a professional studio. Hearing the instrumental sounding so professional was sort of mindblowing. I can't wait to hear the whole thing together.

Simon looked like a total badass today in his "bones" leg warmers although he just horked and puked and retched all day which wasn't so badass unless you pretended like he was a mini rockstar who had partied too hard.

Simon and I postbath, making googly eyes

I also discovered the power of "Peekaboo". This is stupid cute:

http://www.youtube.com/v/UU-ElZo5_1Y

p.s. I'm posting this at 5:50 am on Monday b/c the hospital just called us to say Simon has been awake and puking and crying for at least an hour, so Laura just left to go be there. Waking up to a call from the hospital is so not fun. I'm not a coffee drinker so adrenaline at 5:30 am is not my idea of a good time. I'm sure he's fine and just has an upset tummy b/c of the high calorie formula but it's still scary to wake up to a phone call.