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)

THANK YOU!

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

What a Difference a Day Makes

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)
or
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.

Laura

Michael J Fox has nothing on me

I have seen the future, or at least a possible one. It was incredible!!

Yesterday I was having a conversation with our outpatient nurse practitioner at CHO and out of the blue she starts telling me about another patient that has a similar story to Simon's.
There was a girl that was diagnosed with Dilated Cardiomyopathy at 2 years old with almost exactly the same severity, ejection fraction, and shortening fraction as Simon. She was in the ICU for a month and went home on almost exactly the same medications as Simon.
(Remember I said she was 2 years old when she got diagnosed?)

She's 19 now and in college and was back visiting from Florida with her mom. Sarah, our nurse was saying that while they were visiting for some reason she thought of us and asked if they wouldn't mind being in touch with another family (us).

She gave me Cynthia's cell phone # and said that Cynthia and Mo (Maureen the daughter) would more than love to hear from us.

Normally I might take the number and think about calling and maybe even get to it in a long while. I've got so much going on right now and I'm not one to reach out easily to strangers, although I will say that I'm getting so much better at it these last few months, but something in Sarah's voice and the way that she talked about Cynthia and Mo made me hang up with her and just dial the number right away.

I cannot adequately express how glad I am that I did that.

Cynthia answered right away and was immediately so welcoming and gracious and loving over the phone. She asked me to tell a little of Simon's story and about 3 minutes into it she exclaimed "I feel like you're telling my story with Mo".

I felt my heart start to beat fast (ironic no?) feeling a growing connection with this woman that I'd never met, with a daughter 18 years older than my child, who was living in a state that was the farthest away from where I live.

And it didn't stop. We talked for over an hour, sharing hospital stories, talking heart numbers, and all the time I'm seeing the parallel threads of our lives only she's 17 years further along on the roller coaster ride.

Cynthia said that they were just down the freeway a couple of exits and didn't really have plans for the next day and did we want to meet. She'd love to meet Simon and did I want to meet Mo and her in person?

I have to say at this point I'm nearly peeing my pants and trying hard not to jump up and down and gush my way through making plans, talking directions, and figuring out how to meet up. I feel like a little kid getting told that we're going to Rye Playland (it's like Disneyland for the outer suburbs of New York City) in the morning and every ride and concession is going to be open and waiting just for me, me, me.

This has been such an incredible journey for us with so many people showing up and taking care with all three of us as we travel down this road.

AND there hasn't been any one that I've felt like really understands. How can anyone that hasn't been through this. And when I say 'this' I mean having a child with Dilated Cardiomyopathy (versus the other two kinds) that is not in the process or has had a heart transplant, that is compensating beautifully but is still in critical condition, that doesn't look sick at all from an outside eye, that takes 6 medications three times a day, etc etc etc.
We haven't yet met anyone that's even come close to our specific story.

So when Cynthia and Mo walked into our apartment this morning and I got to see a 19 year old Mo sit down on our couch, I felt like family had come over and it was time to catch up.
She is incredible. So is her mom. Such a generosity of spirit pouring out of the two of them. So clearly born of years of learning to live with what life has plopped into your lap and pitchers and pitchers of lemonade made from sometimes scary enlarged dilated lemons.

It was such a brilliant time. I mean brilliant in the sense that there was a bright shinning brilliance in getting to see these two amazing beings that have travelled this road that Simon and Jaime and I are more than likely going to be heading down as well, living life with joyful times, challenging times and most importantly...regularity. Mo talked about how she just felt like her life was normal. She was who she was and lived the way she lived and it just was. It just was.

And that's how it can and most likely will be for Simon. It just will be what he's always known and if his personality and temperament these days is any indication of how his future days will be...well then I am thrilled for the life that my son will lead. One with laughter and connection and presence.
I'll take it.

So, thank you Cynthia. Thank you Mo. Thank you both for being open to meeting/talking to us, for reaching out, for sharing your experiences, for meeting Simon and "seeing" Simon. For seeing and knowing me. For showing me a more than likely future full of life and learning and humor and sassiness, and great stories.
Oh yeah, and thank you for understanding about our crazy dog Roxie.
Have I mentioned my thanks??
Thank you.

*and yes, i am a total ass and forgot to take pictures during their visit. I'll get some I promise.*

Sir Mix-A-Lot

Simon's been mixing it up these last few weeks. For sure he likes to keep us on our toes and like any parent of a toddler...just when you think you have a rhythm going it changes. Simon has three molars coming in, is wanting so badly to walk, talks up storm with new babble, tones, and clear desires, and has gone a couple of days in a row without napping at all. He's still mostly amazingly jovial about all of it, which I just can't believe. Really....can you imagine a 15 month old that barfs himself awake after a 10 minute nap and then is just fine for the remainder of the day?? Nutty nutty little man.



Mommy on the other hand is not having such an easy time of it as of late. I freely admit that I am struggling.


I'm ok and managing (just) but Fuck this is hard.


I mean really hard.


I don't know (of course I do) if it's combination of the times or what; we are approaching Simon's hospitalization anniversary, he's starting developmental milestone month (15 months is called that), we've had some wicked hot days which means that we are mostly home bound, extra blood draws don't help, and hitting that place of "we don't have a normal baby..should I be doing this?" over and over again-



{going to a music class at the library where there are 30 toddlers and their parents in a room. That's 60+ shoes that Simon wants to touch, 30+ people that I have to wonder about if they're sick or about to get sick or been around someone that's sick, 5 sippy cups that have been abandoned right around us that are in arms reach, 3 kids sitting in sneezing distance near us-thank god no sneezes-, and one runny nose that I got see wiped on the floor.}



All that and I just wanted to cry sitting in that room. Simon and I didn't look any different than any of those hipster east bay parents. There were tattooed mommies and stay at home daddies, mixed race kids, and toddlers that you couldn't tell what sex they were because of their long hair and or neutral colored clothing. Very hip.



And yet....I was the only one that walked in there with a diaper bag that included a feeding pump, tubing, and formula bag.



I was the only one that I could tell that was freaked out about all the germs.



I was the only one about to cry watching Simon be so enthralled with the singing, stuffed animals and toddlers around him that he couldn't touch or go near because of his immune deficiency.



I nearly lost it right there thinking about how Simon wasn't going to be able to have a normal childhood with outings and playdates.



I'm tired of it. I'm tired of my heart hurting for him. I'm tired of his heart not being strong enough for him and all that he wants to do.



Jaime and I had such a great and hard talk Saturday night. We are in such different places and there isn't anything to do about it.



Her days are filled with a job and learning curve that she's loving. I am thrilled for her. I mean it. I am unbelievably happy that she's come to this after all that her last job put her through. I want nothing else for her.



My days are filled with Simon, lovable being that he is, along with severe limitations on activity, vomit, medications, dr's appointments, and very little down time or different focus during the day.



Like I've said before, I can't imagine choosing something else AND it's hard. The only analogy I can think of is the Iron Man Triathlon held in Hawaii. From the very little I know about it, it's one of the most grueling races in the world in one of the most beautiful locales.



I didn't mean to sign up for it or have trained for it (although I will say that so many of my life experiences have gotten me as ready as possible) and now that it's started there isn't any stopping. I can pace myself and choose to focus on the beauty around me but mostly or at least right now, it's just ridiculously hard. And it hurts. Not physically most of the time (although with the little man being such a porker my lower back is feeling it) but it's that kind of all over "things are so hard" feeling.



Jaime is my running mate but she gets to hop in a helicopter for big chunks of the race. When she comes back she brings with her amazing resources including the $$ that we need to keep going, renewed energy, and the face that lights up Mr Shimmy more than anything right now. Sometime we get to run a rough patch together, sometimes a nice bit of trail.



Simon's in the jogging stroller and while there are certainly lots of moments that are bumpy and downright hazardous for him (and he will likely have to get out and run/toddle sometime soon) he is for the most part enjoying the scenery and giggling along.



I meet up occasionally with other folk. They have brought incredible gifts with them and I cant' imagine doing this without them. It's like Gatorade for the Soul :-)


We're on completely different paths though and while theirs might meet up with mine (for a swim class or park playtime) they diverge almost as quickly as they come together.


*Huge shout out to the regulars and drop-ins for joining*



Continuing the analogy...



Since we're in Hawaii, the beauty is right there. I do a damn good job of focusing on the beauty I will say. But sometimes (for longer than others) I am stuck feeling the burn and longevity (I hope) of this race.



Right now it's a rough bit and I'm feeling it. I'm hoping in the next leg there are some breaks, and getting back into a groove.



Analogy done.



PopPop and MM are coming for a visit this weekend. Mamaw is coming as always (bless you Mamaw, Bless you) and Simon's anniversary for his hospitalization is coming up. The latter not being something that I'm happy about but it is a marker and a testament to how strong we are together (all of us), how strong Simon is, how resilient we can be in the face of such things given all that.



Crying, breathing, laughing, cursing, etc
Laura

Simon's new favorite face

Still Mommy's favorite face
Dang, is he gorgeous or what?!!

Live Like You're Dying

Jaime here:

I had a good cry on my work today. No apparent reason. Just feeling a little melancholy, and really glad Simon is alive and just letting go of or saying hi to the fear that's still there. There's been a thread on our listserv about how a lot of us fall apart when things are calm and quiet and "good". It's a little unnerving sometimes but I also know it's good. The hard feelings are there whether or not I am aware of them, so I figure it's better for them to come to the surface than stay locked up in the "I'm fine, I'm okay, everything is under control" place I often live in.

One of my pet projects has been to put together a slideshow of pics of Simon from the last year with snippets from different songs (go Windows Moviemaker!). This is one that I definitely want to have in the piece. The lyrics pretty much sum up how I'm trying to live my life these days. It's what I see Simon doing and it's amazing to watch.

Live Like You're Dying
By Lenka

One of these days you'll be
under the covers you'll be
under the table and you'll realize
all of your days are numbered;
all of them one to one hundred.
All of them millions.
All of them trillions.
So what are you gonna do with them all?
You can not trade them in for more.
no no
Chorus 1:
Take every moment; you know that you own them.
It's all you can do, use what's been given to you.
Give me a reason
to fight the feeling
that there's nothing here for me.
Cause none of its easy,
I know it wasn't meant to be.
I know it's all up to me, I know it's all up to me,
So what am I gonna do with my time?
oh
Chorus 2:
Ill take every moment, I know that I own them.
It's all up to you to do whatever you choose.
Chorus 3:
Live like you're dying and never stop trying.
It's all you can do, use what's been given to you.
All of the moments you didn't notice;
gone in the blink of an eye.
All of the feelings you couldn't feel
no matter how you try.
oh oh
Chorus 1
Chorus 3 x2
oh oh

Simon has been really into a new game where I plug his ears with my fingers or cover them with my hands. He makes a funny little squeak and grabs my hands to pull them away and push them back in. It's very, very cute.

Here's a picture of Simon trying to tune into his home planet (those are blocks on his ears, for those of you who are wondering):

New Week

It's a new week.

We had a lovely weekend. Simon slept and napped like a champ (huge shocker there- read sarcasm here- see last post)

We went for lovely swim with Auntie Dre and while it wasn't the longest nap in the history of Shimmy- we both got a nice break this afternoon.

Simon is 15 months old! He hit that milestone month last Thursday and while I for sure wasn't in a place to appreciate it that day, today I am in awe that we have once again beat most odds and are still trucking along.

And, we're not just trucking. We are miracle-ing it along. Simon is one of those kids surviving cardiomyopathy in that miraculous manner where they don't show that they have this very serious life threatening disease. I've said it before that it's a blessing and a curse so I won't go into that again. What I will say however is that it's a huge, in your face, "you must live this lesson or I'll punch you in the face with it"- teaching that I am working hard at really learning.
What lesson you say? My Rebbes from Hebrew School are laughing their asses off right now because it comes from the bible. Deuteronomy chapter 28 verse 47. Live with joy in your heart and see the abundance in all things (or else all these terrible things will come to pass that we've just mentioned and are about to expand on).


Gettin' Biblical :
I'm working with my cousin on her Bat Mitzvah and her portion of the Torah is a doozie. It's a completely overbearing and dry like the Kalahari chapter with the give thanks to god stuff and "here's all the dastardly things that will happen to you if you don't" kind of chapter.

Both Sophie and I were having quite the time getting our biblical teeth into it (her's just getting cut and mine about to fall out for lack of use) when a bright light spotted on one particular verse nestled deep in the swamp muck of "here's how you will suffer" and if you blink, you miss it. (Thank you Rebbe Jhos 'bright light' Singer.)

There we were walking down the street talking about how easy/hard it really is to live with joy in your heart (coming to the conclusion that it is in fact really frikkin hard) when it hit me. Simon demands that of me each moment of each day. I know I am not aware of it all the time but I gotta, it's sure is more 'up' for me given the fact that I spend most of my time thinking and feeling, and interacting with a 15 month old wonderkin that:
a) Might not make it to his next birthday
b) Could end up living with severe impairment and disability
c) Might need to live his life in a wheelchair with O2 administered
d) Could require a heart transplant later in life
and/or
e) Drop dead of sudden cardiac arrest at any minute

{ All of these, and more, are possibilities for people living with Cardiomyopathy}

While these are less likely given his current state, they are by no means off the table yet with Mr. Shimmy and in fact are still close to his place setting at the table given he has yet to start walking and asking his heart to exert that kind of energy on a regular basis.

And what I have no control over (among the mondo laundry list of things) is savoring each smile, each new giggle, each sweet baby breath in my face, new sound, new frustration at not quite being able to master something yet, each grasp, each falling asleep heavy baby in my arms moment.

99% of my day I cannot help myself and I am overcome with Joy filling my heart and spilling over that I get this. I get to have this. Because almost a year ago, and for several months after, it was continually threatening to go away.

Yes, there's that one percent of the time when I am your typical new parent about to lose their shit when their kid skips napping two days in a row or maybe in a year or so when the tantrum in the supermarket threatens to topple the grapefruit display.

But really, I am not your typical parent. There are those of us out there, walking mostly invisibly among you, that are not typical parents.

We are the students of incredible teachers that demand of us to live out Chapter 28 verse 47 in heartbreaking (pun intended) ways.

It's the hardest thing I've ever done.

Thank you Simon Lev Fitch-Jenett
Thank you.

Just for me

Day two


It's like he saves it just for me. I don't understand it and it makes me just want to cry. We have another morning just like a typical morning. Not as bad as yesterday but still with puking and a change of clothes for both of us. We go to visit Jaime for lunch and he's a dream. Standing and smiling and playing shy but really flirting with folks. Then when we get into the car he falls asleep for the last five minutes of the drive.

And that's his nap.

No more sleeping.

That's it.

No Nap.

I'm really about to lose my shit. It's just the two of us though and nobody else gets to witness the "love". Add to that that there's still no obvious preference for his primary caretaker and I'm wondering if he's trying out new forms of torture for some covert gov't operation that we don't know about.

I know he's cutting three molars and hitting that huge development marker (they say 15months is often called the 'milestone' month). He's wanting so badly to have started walking yesterday. And, in general still the happiest jabbering-est baby on the block.

AND

It still feels like all the crap is just reserved for me.

He lights up when Jaime gets home.
He's done with all his feeding so there's very little chance to puke on her.
It seems to be his most active time of day with the most incredible babbling happening between 6pm and 7pm.
Weekends are also his time to be 'on' it seems with less puking, and great napping (no doubt from all the stimulation and activity that easier with two parents versus one).

Maybe he just loves Jaime more. Wishes she were the stay at home Mom

I know. You don't have to say all those rational things to me.
I'm not in a rational place right now.

I need a good weekend. I need a reset.

Stick a fork in me

Three poops
Six vomit sessions- Two projectile
Three outfit changes
One OT session
One shower
Six hard boiled eggs ruined
and no nap yet.
It's not even 2:00

I'm cooked.

It's been a time

I was born in 1973.

The phone we had in the 500 Kappock Street apartment throughout my childhood in the Bronx had a rotary dial. My mother did work for IBM though and by the time I was in High School we had a computer and were even among the first folk that got to experiment with this new thing called the internet...I can't even remember the name of the program but it doesn't exist now.

In college it was so exciting that there was this thing called electronic mail where you could send a message to another student at the school. You had to go to one specific computer lab but it was still way cool.

So when our internet went out last week you would think that having lived half my life without it, I should be fine.

I was just barely ok.

When our land-line went out too, our cell phones were running out of minutes, Roxie scratched her eye and was requiring more medical care than Simon, and Simon was having a couple of days with either a really short nap and/or it was non-existent, I almost lost my mind.

Really. I haven't been that close to the edge in a while. To have all that happening AND not be able to be in touch with folks the way that I am used to being in touch, sucked. I felt so isolated and for someone that's working hard at not being isolated anyway given everything else that we've been dealing with, well, let's just say that there was a straw and a camel and need for a chiropractor.

Then there was the getting ready and actual travel down to L.A. to see family for the 4th of July weekend. There was all the typical getting packed and stuff but add in all the calls to our Dr's here to get referrals for Dr's there, making actual contact with Dr's down there, the special medication needs (3 out of six are refrigerated AND we had just enough to get us through Monday and therefore needed to make a special refill trip to the CHO pharmacy), dropping the dog off at the Pet Hospital (way too reminiscent of Roxie's time at Animal Control - Jaime and I were both sobbing as we left her shivering in a cage) and then Jaime told you about the drive...once again I nearly lost my sh*t.

Every 20 minutes.

Every 20 minutes my entire body would go tense.

Every 20 minutes I would twist around from the front seat to wipe vomit and check for choking.

Every 20 minutes Simon would heave and hork and spit up and/or Vomit.

Every 20 minutes.

That sucked.

AND....then we got down there and he slept and partied like a champ. We swam, we played, we had family meals. We managed the heat ok. I got to hang with my sister who I love love love. Maya (my niece) and Simon were a delight to watch together and the little man blessed us with 11-12 hour nights of sleep. He clearly appreciates the seedy Motel. Even the drive home was relatively uneventful with just one wake up when we stopped for gas. Otherwise, sleeping like a baby.

I love being with my sister and Maya and Frank.

But Holy Cow, I love being home. And, it only took two days of wrangling with AT&T to get back online and have a phone again. And, those two days are over so it's all good.

Roxie may need to go to a Doggie Opthamologist for surgery and/or a doggie contact lens but that's a bridge that's a little ways away. Now that other things are back in order I can almost laugh at that. Then three out of the four of us will have required major medical intervention in the recent past. Ridiculous.

We had a rough blood draw on Monday to check Simon's clotting factor. Two weeks ago his INR was a little low (blood too thick) and they upped his dose of Coumadin (that's the medication that he takes that's also found in rat poison- gotta love it).

They wanted to check it in two weeks and now have found that it's too high (blood too thin). So we have another dosing regiment of switching doses every night to see if it will balance out. I'm ok with managing that new level of detail but what I hate is the having to go back for another blood draw in two weeks. Simon is a hard 'stick' and this last time it took almost 30 minutes of poking and restraining and blood curdling screaming for them to get a draw. Jaime did it this time and I don't know what was worse, having to hear the screams from the waiting room (I eventually left and walked down the hall- no good, he's got quite the set of lungs- Opera singer for sure like his PopPop) or being in there with him.

I'll tell you in another 2 weeks when we go back, dang it. I hate blood draws. I was so excited to have them spread out to once every four months. I hope that the next one says that we've struck a balance and can get back to that schedule.

Otherwise, so much to look forward to in the coming weeks. County Fairs, MM and PopPop coming for a visit, the Fitch-Dipanes coming up from L.A., walks around the lake, swimming time at the Y, Aunties everywhere, getting back to a groove, etc etc. I feel it already with a lovely morning meet up with our friends Wowlven and Elka Rose before swim time. An easy going down for a nap and some mellow time for Mommy- Yay!

I missed blogging. I'm glad to be back to it and sharing and not feeling so isolated. Plus there are fabulous pictures to be shared from Pride weekend and our LA trip.

Enjoy and thanks for coming along this nutty nutty ride.

Laura

Simon takes his Pride seriously.

Check out the thoughtful

"I'm working so hard at this flag waving I have to stick my tongue out"

Some one loves their Gay Mama-

A very rare mouth kiss from Shimmy

Simon and his 1st cousin Maya sharing the slinky. Such a wonderful toy...

"Dude, southern California is awesome.

You go and swim in the warm pool and then come back to central air in the apartment. Plus, I look Abercromie&Fitch-good in a scarf."

"My Mommy dunks me sometimes and I'm ok with that."

Travellin' Man

Jaime here (DSL is still down at home, so I thought I’d throw y’all a bone with a little update).

Well, Simon just survived his 2nd trip to L.A. since he was born (the first was when he was 2 months old). We drove down Thursday night and drove back up Sunday night. Holy hellaroni was it a crappy drive down! We didn't hit the road until 8 p.m. and didn't get into our hotel until almost 2 a.m. Simon was puking every 20 minutes for the last 2 hours which was really awful for everyone.

We had a decent night’s sleep in our hotel and then walked over to Jen and Frank’s house (Laura’s sister and brother in law) to hang out with them and our 3 1/2 yr old niece Maya. We had a great weekend overall- swimming, eating, walking through the really fancy malls that are near them and some good sleep, actually. Simon was a little trooper- he’s really the easiest baby (minus the heart failure). He was pretty much content wherever we went, except when he got hot. His poor heart function makes the heat really unpleasant for him. We got a spritz bottle with a fan that he liked a lot but we managed to break it day 2. We may consider getting him something called a cooling vest that a lot of folks on our listserv have. It doesn’t get that hot that often up here though, so maybe next summer.

We also had a revelation on Saturday. Simon had been off his game for a week or so which had us really worried- busting a sweat a few times, not napping, puking more, just generally being off. Well, it turns out that the little man was busting THREE molars through at the same time. That would make me throw up too!

He’s really, really close to walking and generally is Mr. Independent. He hardly wants to be held these days- he wants to be on the ground, exploring, crawling, opening, tearing, standing, etc. It’s really cool to see and also sad because I just want to squeeze and snuggle and generally eat him up and he’s not having it.

It’s coming up on the anniversary of Simon’s admission to the hospital (August 1st). It’s hard to believe it’s already been a year and that it’s only been a year. We’re planning a little quiet time to reflect that day, I think.

We’ll post pics of the little guy once we get DSL back up (hopefully Sat at the latest). He’s due for a haircut, I’m sad to say. I guess we could go with the celebrity trend of letting him grow his hair into a long and flowing mane, but really, who wants to wash barf out of his hair all the time? Not me and I know not Laura, so a little trim may be in order.

Hugs all around

Photos and more

I know it's been a while but we've been really busy.

Some of us have been cutting a new molar (among other teeth!), scaring mommies with some fevers, working out how to manage the heat, going to Gay Pride Weekend activities, swimming, making new sounds, pulling up to standing (unsupported twice!), and generally just working it out.

And that's just Jaime ;-)

Really though, Simon has had an incredible time as of late and has been working hard at being one of the most joyful babies. He's funny too!

Look.

Simon, looking very guilty after sucking the bubble wand dry

I couldn't quite capture the bubble beard in time.

Check out that hair (all natural, no product)

Simon meet Salsa

And she's back

It's been a lovely Saturday here complete with sweet family time on a blanket at the farmers market and Simon has just gone down for his afternoon nap.

Jaime was shopping at Trader Joe's and Simon was just at the beginning of his feed. He and I were nestled comfortably in the rocker and it seemed like he was just about to close his eyes. He was playing with my fingers, touching the pads of his to the pads of mine. Playing gently with the pressure of digging a nail in versus just finger pad to finger pad. So frikkin' sweet.

I leaned over to smell his head, which I often do, appreciating that smell, and there it was.
A visceral memory of another time. Another time when I was smelling Simon's head where I remember thinking this might be the last time that I get to do that.

That first night in the hospital when Jaime and I would take turns holding him as we waited to see/understand what was going on. Holding him in our arms while hour after hour, his little heart and body became more and more exhausted. Holding him in my arms smelling his head while they wheeled us from admitting to the ICU. Breathing him in.

There I was in our bedroom with him after a lovely happy morning, nothing that different, smelling that same sweet Simon head smell.

And there she was. She was back. Standing right across the room from me. Death was back.

Not in a scary way. She was just there. Of course she'd been around all morning...I remembered that I had woken up from dreams that were all about death. Not scary ones but just crazy dreams that included Jack Black and a friend from the not so long ago but distant past that had died, showing up and dying again but in this very matter of fact- you just gotta be with me while it happens- kind of way.

So there she was. Looking a lot like Georgia O'Keefe but with long flowing grey hair and a kind of dusty rose summer dress on. She was barefoot and looking so sweetly at us that I couldn't help but feel kind of comforted.
I know it's weird but Jaime, Simon and I have a very special relationship with her and I think it's fitting that she come around every once in a while.

I am so aware of being in that cycle with Simon. And I believe it is a cycle. From just before that moment that you come into being (and you sweet reader, you get to decide when that moment is) until just after that moment of your last breath. I don't know really if you go back to that same place but it feels like a cycle to me. From before you were 'being' to after you're done 'being', at least this being that you are right now.

None of us know where we are on the ride, only that at some point it's going to come to an end. With cardiomyopathy and with Simon it just feels like we are called to think about it a little more than I normally would.

Sure, it's fun to pontificate on death occasionally. Over a dinner with close friends on a random night when the conversation runs it's crazy course. We've all had too much of some inebriating substance and gone down those crazy conversation roads right?

Being Simon's Mommy, travelling his road with him, having a close and regular relationship with death, it's just different.

So, she's back.
Well, actually she's gone right now. Just a short visit today. Fine by me.

Jaime's making strawberry ice cream. Had she stayed we might have offered her some... but in a to-go cup if you know what I mean.

Frodo Fitch-Jenett

Straight from the Shire...

One ring...err baby, to rule us all.


Oh yeah I almost forgot. His BNP was 494. Still going down. Right on Little Man, right on.

Stepping up in the world

well, he's not really stepping yet but we are moving up.

We just had our monthly cardiology visit and as I suspected/feared/hoped for, Rosenfeld said that he's fine to see Simon every two months now.

Makes me a little nuts just thinking about it but I know we can call anytime and CHO is just 5 minutes away and all that. Still...

As for the visit itself, Simon is doing just fine. His Echo doesn't look that much different but the "that much" is actually his heart doing a little better.

During the last two visits HunkyPants had said that there was some concern with the left ventricle looking just a tad bigger and the shortening fraction had dropped just a hair. This visit showed that the left ventricle had gone down some and his SF was back to where it had been three visits ago and even a little stronger (from %18 to in the 18-20 range). Everything else looks good, but Simon looks "great, with great energy!"


We even got the go ahead to try out some homeopathy, Rosenfeld is going to look at some herbal recommendations and even try and get us a 2nd opinion phone consultation with the leading cardiomyopathy specialist in the world today (Dr Towbin). All in all I would say that it was a really good visit.

Yes, we had to do a blood draw (BNP on Friday if all goes according to plan) and it sucked but I have to say this little man has incredible bounceback. Simon has showing us over and over again that he has an uncanny ability to be present in the moment. He lets me (and the world) know when something really sucks for him and then when it's over, for the most part, so are his feelings about it. It will be interesting to include talking into that equation once the little man gets more verbal. I love the 'Fshhhh' sound we get in the waiting room as we stand by large fish tank.

I also love having a pediatric cardiologist that will 'ok' homeopathy where other doctors will poo poo it right off the bat. Rosenfeld also said that he would look into the four herbal remedies that were recommended to us to see if we can do more for the little man as he's so stable right now.

It's exciting to think about complementing his traditional medications that have a strong handle on keeping his symptoms in check with something that might even get to the underlying issue.

So, Simon's meds keep his blood pressure and heart rate in check but something homeopathic or herbal might touch on actually strengthening the heart muscle. What's nice is that we don't seem to have to actually give the former up to begin working with the latter.

I actually feel really hopeful about it. We have an appointment with a pediatric homeopath (a former MD no less) in late July. We had a great phone consultation today and I'm excited to work with him and have Rosenfeld talk with him as well.

Can I just say once again that I am so grateful to have a team (Rosenfeld, Gleghorn, Winokur) that are willing to try or at least support different modalities than the ones they were trained in. Thank you team.

Other than that we are chugging right along with the little man clearly understanding more and more, standing on his own for a few seconds here and there, two more new teeth (8 now total!), and crazy wonderful games and facial expressions throughout the day.
Enjoy...

"Ech..look at me...I'm an old man...no I'm a baby....Nu? Laugh already....this is some of my best work"

"Hey, whose that good lookin' baby over there?"

"A little privacy please...?"

You saw this one coming didn't you?

"What? What could you say to me that I haven't already heard?"

Hard, Ham, and Holy

It's been quite a week here at Team Shimmy headquarters. We've had one public speech display (Jaime), one of the busiest weekends I can remember (all three of us), a meet and greet roundabout (Shimmy), and some of the most awesome displays and timing of urination (again, Simon). But really what I want to talk about are three things.


Let's talk Ham first.

Simon is an incredible ham. It's truly amazing to watch. Sunday night we went to a family dinner at Karen & Alicia's where Simon seemed quite out of sorts. He'd woken just an hour and half into what is usually a two to three hour nap and was not happy about it. It was hot in the city and there were no smiles or peekaboo games to be had and this was around a number of his favorite peeps. Little man was just pissed.


With another social engagement to go we toyed with the thought of just going home and calling it a night. Instead we loaded up on Infant Tylenol, and hoped that Simon would sleep on the 45 minute drive down to Palo Alto.

No sleep but some serious dozing and when we arrived at the Mamaw's end of the semester potluck (full of people that have been following the blog, sending love and prayer, and supporting Dianne through all this), the little man not only woke up but he was the light and love of the party. He literally made his way (on his own) around a 50x50 room greeting, pulling up to standing on, and generally flirting with about 20 different women that are a part of the Women's Spirituality program that Dianne runs at the Institute of Transpersonal Psychology. He was amazing to watch 'work a room' barely glancing back to see if either of his mom's were around. He did but barely. Total Ham.


Here's the Hard.

We did a lot of socializing this past week with both people that we've never met, people that are one or even two circles out from the first tier, and of course lots of wonderful dear friends.

It's hard when folks from the first two types meet us and/or see Shimmy and go on and on about how healthy he looks. Or, ask us how he's doing and don't quite wait or even hear the very careful and thought out "he's stable" answer. Instead there's the "it's so amazing that he's better" and "it's so great he's so healthy."

It's hard. How do you explain that Simon's heart is still operating at 1/3 or less of what it's supposed to. How do you say "yes, but with Cardiomyopathy there's still the reality of sudden cardiac arrest at any second." Folks just don't seem to be able to hear that and/or neither Jaime or I can get it out in such a way that make folks understand. How do you explain compensatory heart failure to someone that really is just wanting to tell you that Simon looks so good but when they do it brings up all the "yes buts" that tear your heart just a little.

So why not just let it go and take statement for what it is? I don't know why but I can't. I want people to understand that as good as Simon looks and seem to be....he's not. I want people to get it. I want people to understand Cardiomyopathy the way that I've had to. It's not fair but I want them to.


I know people want so desperately to believe that what they see is what they get or (lovingly) that's what Laura and Jaime get. That's the harsh joke of Cardiomyopathy or at least Simon's version. Not to mention that there are so few that get to see the syringes, the Echos, the random sweats, the medication, the puking and the pump.

What's hard too is that every "it's so great he's better" is a sharp reminder to me at least that he's not. He's far from it. His looking good, amazing energy, and sweet sweet life's force are really paper thin. They're real but they're barely there.

It's hard to be reminded of that. And I would never ask people to stop saying the truth of what they see. Simon is a bright light.


The Holy.

Sometimes in life there are things that just happen that are so sweet and full of what feels 'right'. My life feels full of the sacred and silly. It's amazing even in that when something stands out.

Here's the back story:

At least a year ago I had an interaction with one the 'regular' folk in our neighborhood. He's a man that I'd seen several times around Lakeshore and because of his knit hat that he always wears, he was just one of those recognizable neighborhood folk.

Once, we were walking towards each other and I was on the outside of the sidewalk. As we neared I assumed that he would move over so that as we passed we wouldn't walk into each other. I couldn't move over since there was the edge. He didn't budge and we bumped shoulders. It was just one of those awkward moments that was just outside of our cultural comfort zone. "Normally" we don't touch people as we walk by them. I was just a little perturbed.

Several weeks later Roxie and I were out for a walk, again coming down Lakeshore heading home. Roxie tends to move over to the outside of the sidewalk so that she can sniff the various bushes and garbage cans that are spotted along the block.

Again, we're walking and I see our 'friend' walking towards us. Again on the outside of the sidewalk. Again, I assume that he'll move over a little bit to his left given that I would have to either step into the street or move all the way across the sidewalk quickly with Roxie to get out of his line of step.

Again...no such luck. We bumped shoulders.

I couldn't help myself "it would be nice if you moved over a little sometimes" I said.

What followed was a most unpleasant exchange. It was downright ugly and left me shaken.

More than anything I was confused and felt righteously wronged. What was even worse was that I knew we would continue to see each other as we both clearly lived nearby.

So there I was the next morning, walking Roxie, when of course I saw him from half a block away. I immediately went through all the things I wanted to say to him about our interaction and his wrongdoing.

As I got closer I felt my whole body tense up for yet another altercation. Less than five feet away from him something happened. I had a flash and knew exactly what I needed to do.

I walked right up to him and apologized. I said that I was sorry for our interaction the other day and that mostly I was concerned about Roxie not acting out. But mostly that I was just sorry.

He apologized right away as well and let me know that he's usually not that quick to anger but it had been a rough day. He went on to explain that he has a vision problem and that he's been trained to walk along the outside of the sidewalk following the line. He also apologized again for his reaction to me. We exchanged names and since then Stephan and I always greet each other warmly whenever we see each other (which is about every 3rd or 4th day). I always look for him in his regular spots (Noah's bagels or the Donut shop across the street) and he always asks how "the baby" is (knowing a little of Simon's story). It's been a very sweet relationship born out of a very sour moment.

Yesterday as Simon and I made our way around the Lakeshore strip, saying hi to all our folk, we passed the Donut shop spotting Stephan in the window, we stopped to wave hello. He motioned that he wanted us to wait and come to the door as he clearly wanted to say something to us.

"I've been looking for you for a couple of days."

We exchanged simple pleasantries and then Stephan asked if we wouldn't mind waiting a minute while he went out to his car to get something.

In a few minutes he returned with a not so small wrapped gift from Babies R' Us and handed it to Simon.

We ripped the paper together to find a really cute pink beanie baby tiger.

I couldn't believe it. He had actually gone out of his way to not only think of us but actually buy Simon a present.

My heart felt so full of love in that moment. That kind of Agape love that is just about as pure as you can get. Like a baby's first laugh or spontaneous hug.

Something so ugly turned into something so beautiful. That's Holy time right there.

We made a pact right there and then (after hugging a lot!) that Stephan would be Simon's Chess teacher. Neither Jaime or I know the game and it's one of Stephan's passions. (He plays for hours at the Donut Shop, reads books on it, and said that he has a child's board at home).

I love thinking about Simon learning chess from Stephan. Love it.


Ham is awesome. Hard is what it is. And Holy....well Holy is what changes your life and makes it full of delight and wonder.

"I'm training to be blues man"

Grrrrrr

I love me some (whatever this is on my hand)

Sorry So Long

I've heard now from several people "it's been a while,eh?" (and I don't just mean the Canadians).

Here we are one day into Simon's new diet and so far so good, on so many levels. At our last GI visit we got the go-ahead to switch Simon from his infant formula to something more age-appropriate and got a prescription for Pediasure. On Thursday we found out that it would in fact be covered by insurance (that's a little more $$ that we don't have to spend...so it can go towards a YMCA membership-yeeehaw!), and on Friday night we began the month long process of switching over. We change 25% a week so his little tumm can get used to it.

*warning- poop talk coming up*

And it's so amazing but Simon's poop is changing. This has been happening since about a week ago but the little man has started pooping turds rather than the usual diaper-fill-'em-up baby poops. I can't believe I'm going to say this but...it was so exciting to see his first turd!

*sniff* my baby's growing up. I had to make Jaime change his diaper today just so she could get a first hand (literally. Hah!) feeling for what I was talking about.

Poop talk done.

He really is growing and changing day by day. He crawls at a fairly rapid clip when he really wants to get somewhere. He pulls himself up on just about anything-including Roxie. He has clear likes and dislikes with books, stuffed animals, etc. He will instigate playing certain games, like 'Peekaboo" and fake-yawning or coughing. He's bringing more and more things to his mouth for tasting and playing. He is hugging and kissing inanimate objects on command and hugging and nuzzling his Mommy and Mama with delicious abandon.

It's been a sweet and exhausting time as of late. Jaime and I are hitting new and deeper levels of co-parenting (that's a cake walk right?). And there are some new and completely open ended questions that have come up in the medical department (that's another post coming soon).

So I'm sorry for the gap between posts and not sorry at all to have so many of you ask when the next one's coming. It just means that the Fitch-Jenett family is three strong but so so many more.

Love love love

Laura

Busted playing with a Cheese Puff

Mr. Longhair practicing walking with his little cart & baby doll

A boy and his dog

GI update

I don't consider myself a huge "worrier". I don't carry my stress over Simon for too long. I feel pretty good about how well I am handling all this.
And Doctor Gleghorn makes me feel like a worry wart.
I think that's awesome!
Simon got winning marks for his GI visit. Here are some highlights

• We are no where near talking about a Nissen for him. He would need to be vomiting up blood, in terrible pain while barfing, and/or failing to thrive. Simon has never spit up anything other than formula (occasionally a little neon green bile), he has around a three second bounce back after blowing chunks, and failing to thrive...? Please. Have you seen the little chunker lately. Dr Gleghorn actually put him a slightly lower calorie daily intake plan.

• We are switching over to an age appropriate formula that, by all accounts, should be covered by our insurance. We'll see if they go for it without a fight and a ton of red tape (that's just what I've heard from a couple of other families- thinking optimistically though)

• We are cleared for swimming!! I just finished writing what I think is a heck of an application for financial aid to the Downtown Berkeley YMCA. I included two pictures to really work their purse/heart strings. One from August 2nd and one from his birthday. I'm thinking they might actually pay us to come to the Y. Naaaah, but I'd take a nice scholarship so that we could go swimming a couple of times a week :-)

I feel light as a feather.

Simon's beautiful beating heart

It's hot today.
During the afternoon we (meaning Simon) stripped down to just a diaper and spent most of the post nap afternoon hanging out as such. At one point Simon is across from me playing with his singing cube. He's standing at it and I can only see him from his belly button up.

I see my son's chest. I see the small amoeba looking scar from his broviac line. I see his blue varicose veins from who knows what. I see his beautiful chunky little baby/man boobs.

And I see his heart.

No, I have not developed x-ray vision (that would not be my super power of choice anyway) and no, Simon is not breathing or working so hard that I can see his chest heaving or heart beating.

But I see it. I see it in my mommy/minds eye. It's big and red and beating faster than it should but it's there. I see it. It fills his chest cavity. I see it working for him. It's vibrant and shiny and it's his heart. I love that little but too big organ.

I love it with all my heart.

Oh yeah, and I'm so frikkin' tired of vomit.

We go to see the GI doctor tomorrow and will hopefully have some sort of 'next step' for Simon in regards to his throwing up. It's not about weight gain anymore. The little chunker has more than enough to lose.

It's about what all the throwing up is doing to his poor esophagus. He's clearly conquered any sort of oral aversion, even his swallowing is getting better and better. Even while simply playing with food, a gag/heave won't deter him from bringing whatever it was that he was just playing with back to his mouth.
So what will it be. More medication. Are we at the Nissen stage?
(a nissen is a surgical procedure where a part of the stomach known as the gastric fundus is wrapped around the lower esophagus. This prevents the flow of acids from the stomach into the esophagus, and strengthens the valve between the esophagus and stomach, which stops acid from backing up into the esophagus as easily.)
What!? I don't know. More surgery?!! Hard to think about.

Otherwise he's doing so well. He's put on more than enough weight. He's making great strides with food orally. He's pulling himself up on just about anything (including Roxie!) and he's starting to make new and exciting sounds (Fsshhhhh anyone?)
The other morning he actually pulled a book out and started turning pages on his own.

He is amazing. Doesn't let you forget it either.

Jaime here:
This weekend was so mixed for me. I was very grumpy for the first 2 days and then we had a great Monday with a BBQ with a bunch of friends. I was grumpy until I had an epiphany on Sunday evening.

This Memorial Day weekend was the 4th anniversary of Laura's traumatic brain injury.

The actual day is May 31st, but it was Memorial Day 4 years ago. Laura and I talked about my bad attitude Sunday night. I remembered that my predominant emotion about the accident, after the fear mostly subsided, was anger. I was so angry to have to be going through something so traumatic by myself.

It never occurred to me, prior to her accident, that her not being "present" was a possibility. I'd been so proud of myself for not picking another depressed substance abuser, as had often been my pattern. I had finally picked an incredibly present, caring, emotionally healthy woman, finally. And then, I had the most traumatic event of my life and she wasn't there for me.

Intellectually, obviously, I knew it wasn't her fault, but goddamn was I angry! Our friends were incredibly helpful, supportive and loving, but my root system was suddenly gone. My very best friend, the one I could tell anything, the one I could be vulnerable with, was M.I.A. And, not only was she not "present", she was helpless (for a while, anyway). She couldn't be left alone, she couldn't drive, she couldn't work and she had no affect. No anger or sadness, and also no interest in or excitement about anything. Oh yeah, and we were due to get married in 5 months. How romantic.

Laura slowly recovered, returning to work 9 months after the injury and was *mostly* back by a year post injury. Our wedding was amazing. Still, our first year of marriage, that was supposed to be this blissful, easy, fun year...in a word...sucked. I was traumatized, my wife was slightly depressed and frustrated and our power dynamic was all out of whack from me having to take care of her. It took me to the end of that year to realize how angry I was, about all of it.

I have mostly worked it out but evidently the emotions come back now and then to remind me how hard that year was. I often pretend that hard stuff is water off my ducky back, but really, some of it really sticks. As it should.

I say this all to say...on Sunday I realized why my experience with Simon's illness feels more bearable than I would have imagined. Because I have Laura at my side, 100% present and going through the same hell, in the same sort of way that I am. I felt SO alone when she had her head injury, but I don't think I've ever felt alone with Simon's illness. Part of it is our incredible network. (Thank you!!!)

But a very large part is that I have my roots back. We are two strong trees standing tall in the face of the absurd, roots touching beneath the ground, instead of one lonely, spindly, dazed sapling bent over looking at her life's love sticking out of the ground, parts going this way and that, in disarray.

Laura's love, support, listening ear, ability to express emotion and ability to be present has made the unbearable bearable. Unconditional love by a healthy person is seriously the best medicine. You should go out and get you some. Seriously.