Saturday, August 1, 2009

One year ago...

One year ago today, almost to the hour that I am writing this, Simon was admitted to hospital and diagnosed with Dilated Cardiomyopathy.

It was a day where I think I came close to understanding what "living hell" really might mean.
And, here we are today with a beautiful boy, an incredible community and family, and so much more love in our lives than I could ever imagine.

Simon is still in heart failure but he is also thriving and stable and living with a fire in his belly and a smile on his face.

We are so blessed.
All the grandparents, Auntie Jen, Uncle Frank, and cousin Maya, plus several of our closest friends joined us for a picnic in the park and we sat for a good 10 minutes, surrounding Simon and sang to him. It was a chance for him to see and feel, really physcially feel, the circle of people that have been 'holding him' for the last 365 day cycle around the sun.
For sure the circle would have been much wider (I'm thinking 'round the perimeter of the city of Oakland) had you all been there in person, but it was still incredibly sweet to watch him be engulfed and take in the love. We sang the "oh little Simon, little Simon Lev" song, making up versus as we went, and he just got all still and focused, taking it in.

He's incredible. Really a Superman. Here are some shots from the day.
Superman gets ready to take off with the help of PopPop

Soooo Happy

When the little man wakes up we're off to the ICU to deliver cookies. Here's the flyer that Jaime made up for the folks at CHO. I would say it's good for you too (sorry the cookies don't translate through so well)


One year ago today (August 1, 2008),
you came into our lives
when Simon was admitted to bed 4 in acute congestive heart failure.

August 3, 2008

As you may remember,

there were MANY ups and downs,

but your love, patience and excellent care brought us to today…

You are all working miracles every day.
Thank you for giving us this year with our son.
Jaime Jenett, Laura Fitch and Simon Lev Fitch-Jenett

Wednesday, July 29, 2009

What a Difference a Day Makes

Locations of visitors to this page
Well not really a day. More like five days, two conversations with different nurses, and a new medication but who's counting?

But let me back up.
It's been quite a few days.
Starting with Thursday Simon has had a real bit of trouble at night. Our days have been mostly the same but starting about five nights ago, it's been real rough on the little man and I would say even a tad rougher on the mommies.

For reasons unbeknownst to us Simon began to not tolerate his overnight feed. Friday morning he woke up barfing at 5am. Not such a big deal or that out of the ordinary as that's something that we've certainly seen before ( months ago but we're used to cycles coming around again right?). Saturday, and Sunday though it was more like a 2:30 wake up with the barfing not really stopping until we discontinued his overnight feed ( a slow but steady 2 ounces per hour). Then on Monday night it was a 1:30 wake up and Tuesday it was an 11:00pm wake up.
Not only did that suck for the sleep getting but it also was quite worrisome in the caloric intake arena.

Simon is now getting over half his caloric intake over a 10 hour period while he sleeps at night. It's been working for us for months and while there's still some significant volume loss (that's eloquent for 'puking') during the day, we haven't been worrying as much since he's getting good nutritional intake at night with minimal barfing. Until a few days ago that is. So now all of a sudden he's missing out on about half his total calories in a 24 hour period.
One night, ok, he's got some chub to spare. Two nights and it's not great but we're still within an acceptable range. Three nights and on and I'm starting to worry. He's a cardiac kid whose heart beats at a greater rate than most and keeping weight on is key to his continued compensating.
Crap shit.

After calling GI twice and not hearing back from our Doc I finally hit the "must talk to someone" place. After I learned that our GI doc was out on vacation this week I ending up leaving messages with the schedulers at the office to please have somebody call me back. I love them. Within an hour I had two conversations with the department nurses and finally came up with an idea of what might be going on and a two part plan to address it.

It was one of those sleuthing conversations that take more than the people involved to figure out what the heck is going on. After about 15 minutes of trying to figure out what was different we realized that Simon was teething again and while he was handling it beautifully during the day (and even at night when he wasn't puking he was fine) it did mean that he was more than likely producing a significant amount of saliva. Not a big deal for most young un's at night but when you're on an overnight feed AND swallowing more saliva not only does your stomach fill up faster but there a PH balance change with more stomach acid being produced increasing the already present proclivity for puking (nice alliteration right?).
So at this point we come up with two solutions:
1) Decrease his overnight feed or stretch it out more (which would more than likely increase the pukage during the waking hours)
2) Introduce a new and additional medication that would target the acid reflux

Hmm.. add another medication to his already loaded little system or more than likely increase his vomiting and decrease his caloric intake during the day.
Not really the 'win win' situations that I like to look for in my life.

Last night we opted for the new medication (not covered under our wonderful insurance!!) and lo and behold....we were blessed. The stars were aligned. Grace was lain over us like a warm blanket and the little man slept.

Straight through the night.

From 8pm until 8am.

Without a peep.

Sweet nectar of the gods.

It almost doesn't matter that it's 9:38pm right now and I can hear him babbling to himself, still awake after a 8pm put-down. I am recharged and renewed. I'm praying that he sleeps again tonight but I can at least handle it if he doesn't.
Isn't that kind of sick? That's all it takes after so many nights of crappy sleep that all it takes is one solid one and I'm just not that worried about him being awake at almost 10:00 at night.

Family is here and it's so nice.
As the anniversary of Simon's hospitalization gets closer I can feel it on a cellular level. It's that strange kind of full body memory that comes around for me each November as I approach the anniversary of my own near death experience.
That was a moment for me where every single cell in my body and that which can't be quantified by cells was called on. It was a moment for me where everything was held in balance and I could have gone either way. And every November I feel it. I feel it for a few weeks before my actual anniversary day. Something in my body tells me that we're coming around again.
And I'm feeling it now.
Makes sense. Simon is of my body. He was held in that delicate balance. My body is remembering.
Both Jaime and I have been noting as of the last few weeks that we're feeling it. Things just feel taut as we approach August 1st; our communication, our bodies, a pressure in the air, all of it.

What is a relief to think about though is my own experience with the actual day in regards to my anniversary.

I feel strong and full of life and joy on my anniversary. I feel how close I came to being finished with my time but here I am and isn't that wonderful. I feel abundance and thrilled to be here. I also remember how important it is to sometimes throw my hands up and let that which is larger than me carry me (not separate from me but definitely larger than me).

So, I'm believing that's what lies in store for me on August 1st and that's what I hope to offer Simon as each August 1st comes around for him, for us.

Whew, I feel better even just writing it. Thanks blogspot. Thanks Readers.