Stars Aligned

I can't write much now but wanted to get some photos up to show you what we've been up to the last couple of days...starting with Mother's Day

That's Simon with his Mamaw and piece of Bacon (and Cinnamon toast remnants on his face)

That's a piece of Steak

A Snap Pea

Double Fisted with Yogurt Pretzels

A single Chocolate covered pretzel

Working on a pickle

Drinking some water

Some peanut butter

A flower and some beef jerky

Some Vietnamese Soup

And topping it all off with some of PopPop's birthday cake

Thank you and Good night.

Craptastic!

Right out of CSI: Oakland. Simon has a rough night on Wednesday, not handling his overnight feed, retching and barfing every hour and a half. We bring him into bed with us 'round midnight so as to be able to comfort him. Even through my sinus medication haze, I am still painfully aware of how crappy my little man is feeling.


I have no idea how crappy though until I wake up. Jaime has just lef to go to the gym, and it's barely 6am when once again, the little man starts sqauking and waking uncomfortably up. I turn over to discover that he is swimming in his own crap. Liquid poop all over the bed, all over Simon, all over me.

A blow out like I have not seen before. The bed resembles some awful tv show crime scene only now I can truly understand why they're alwasy wearing masks and gloves. Simon, to my dismay, has not yet grasped the defcon 1 situation and goes to rub his eyes and hair with his poop covered arm.

Never before have you seen two people stripped and in the shower so quick.

Poor guy. He's still trying to wake up and I have him soaped up and sputtering before he can even say "diyeeeee" (meaning 'done').

After the latex gloves are firmly on, the bed stripped, and three loads of laundry lined up, we are ready to start our morning.

After arriving late to our audiology appointment (to finish ruling out possible hearing loss), we are promptly sent back to the scheduling desk as they can't test someone that has fluid in his ears. Another ear infection?

Crap.


Riiiight. Simon has had a cold. I forgot to mention the snot given all of the other body fuids that I was dealing with this morning.

So we arrive early to our early intervention program a little worse for wear but I figure/hope that the singing and familiar play of PIP will settle the boy down.

We're not five minutes into getting settled there that I hear a low rumble come from Simon's stomach and then the tell tale flow and following stench.

I know why they call it the 'runs'. That's what we do to the bathroom where once again I am an ironic imitation of a scene from a movie where the baby has pooped and the Micheal Keaton (Mr Mom) or Eddie Murphy (Daddy Daycare) character is overwhelmed with the clean-up.

This is however, real life and while this technology may be in the near future, smell and touch are never a part of watching said scenes. Sight and sound maybe but even then you can't quite capture the very distinct odor that comes from a rotten baby gut or the special glint that flourescent lights can give off of a slippery poop covered tush.

After cleaning Simon, myself, and the bathroom floor and walls, we are ready to go back to the main play room and see if Simon can hang for some morning singing.

He cannot.

It's not even 10:00 are on our way home again. For sleep, for some Pedialyte and rest.

Five such poops and not really being able to keep down much food bring us to 4:00 and the pediatricians office. I ask her point blank Ass or ears? Which would she like to hear about first.

Turns out there is fluid in his ears but they don't look infected. He does likely have the stomach virus that's been going around.

Pedialyte for the next 24 hours it is.

Pedialyte, plus a rough night, plus a 6 hour nap today, plus no peeing made for a very worried mommy.

It's hard to feel the regualr concerns (is he dehydrated? getting enough fluids? sporting a fever?) and then worrying about the exrtas (will it be ok giving meds with just pedialyte? Is he retaining fluids? How will this interact with his diuretic meds? Do we need IV fluids? what's this one going to do to his heart? I really don't want the present of being in the hospital for my birthday.)

It doesn't help that in the last couple of days there has been all this talk on our Children's Cadiomyopathy listserve about kids that have needed heart transplants after not really showing any symptoms and that it's been children across the board of Cardiomyopathy and not jsut those cases of Hypertrophic Cardiomyopathy (where transplant occurs in greater numbers) versus Dilated Cardiomyopathy like Simon has.

Doesn't help at all.

Not one bit.

I don't ever want to go down that road again. That early September weekend was too hard. I don't know how I would do it again.

It's now 5:27pm on this Firday eve and Simon is singing the "Lulu the Clown' song. We will try for a rousing sing along of 'Shabbat Shalom', 4 ounces of Pediasure (not Pedialyte) and see how he does.

Here's to the good night that we all need.

 

And, it's all about perspective. 

It's not like anything stupendous happened today. 

No big check in the mail. No drastic change in our lives. 

But...we had a cardiology visit today. It was coming after a semi-rough weekend. Solo mom-ing it with Jaime away, two rough nights, and the beginnings of a cold for Simon. And we had a cardiology visit coming up. That means all those ‘maybes’ running around my head. From the mundane (maybe we'll get a parking spot close to the hospital this time), to the middle ground (maybe he'll be less combative during his echo and blood draw), to the grandiose (maybe this is the time when we'll hear about some drastic improvement in function).

It's just a little more exhausting than usual.

We check in and within 5 minutes are called for our EKG. Nice. Waiting sucks, even with Go Diego Go on the tv in the waiting room, not having to wait is always better than waiting.

Simon did so much better with the EKG than last time and it turned out that even with a size 2 tantrum (on a scale of 10) going on, his heart rate was the lowest that we've seen since we've been looking at heart rates. Pretty sweet.

He then greeted the Echo Tech by name (I really think he said ‘Sara’ as she walked in the door) and only worked a size 4 tantrum into his Echo with some nice quiet time in there as well. All in all the actual testing part of the appointment seemed to breeze by.

Again, no waiting back in the waiting room and after Simon stood on the scale like a big boy (instead of needing to lie down or sit on those baby scales) Rosenfeld was in our room within 10 minutes giving us the results.

So, his heart function isn't any different from last time but while the size of it hasn't changed, Simon has. He's clearly growing and his heart is not.

Take a minute and remember that Simon's heart got to be about 5 times the size it should have been when he was most symptomatic.

He's growing into his heart!! 

Yay!

While I was hoping to hear about some increase in his ejection or shortening fraction what HunkyPants said next was more than enough.

First, we had no blood draw.  I believe Rosenfeld's exact words were “BNP, ShmeeNP, look at him.”

and then...

"He's got the best energy of any of my patients with Cardiomyopathy. Why don't you come back in 4 months for your next appointment? He just looks so great."

 Remember it was only at the last visit that he said we should stretch our visits out from two months apart to three months. Now we're at 4 months?!! 

It's a nutty nutty mostly great but a little scary world. In my head “what do you mean you don't want to see my son who is in heart failure for 4 months?! What do they teach you at Harvard Med School?! This is where I feel the insanity that is cardiomyopathy. In the same breath he also said (to his med student) "there are kids with his exact heart function that are up on the floor (the ICU) dependent on the IV drug Milrinone." Aaah Milrinone. I remember you well. Thank you and may we never meet again.

Insane for sure, but it also keeps me present. Where Simon is at, with his heart, with his eating, with his gross motor, fine motor, speech, etc, etc...it's all where he's supposed to be in that given moment. There are things to be done, steps to be taken, things to be learned, challenges to be laid before him certainly, and...where we are, where I am as his mother/caretaker is right here. Each step is deliberate and I'm feeling more and more at peace with the pace.

There are times it's good to be a Taurus and the year of the Ox combined. 

And Simon is such a love. He still greets most strangers that pass him with an infectious "Hi!" and is able to move from his EKG and Echo with a lovely 'thank you' signed to each of his techs.  

I am just as excited about my son growing into the type of individual that can thank the person that just put him through an unpleasant but necessary procedure as I am about having my son grow into his enlarged and poorly beating-but-getting-stronger- heart. 

I am more often than not awed by him. I am more often than not awed by my family, immediate and extended. 

I'm feeling quite blessed right now. I took my son who is in heart failure for an EKG, Echo-cardiogram, and meeting with his Cardiac specialist and I feel blessed.

Check out the beginnings of one awesome breakdancer.  

http://www.youtube.com/watch?v=lPmLobkvINQ 

A Mix

 
(Jaime here)
Today I'm feeling the incredible bounty we have.  And the guilt I have about it.

This weekend was a mix.  In some ways it was so lovely- Saturday was a baby shower for a friend who is having twins and then Sunday we had brunch with friends and dinner with 3 other families.

AND Laura and I kept bumping heads this weekend, trying to figure out how to manage our time, get everything done, feel connected, meet Simon's increasing need to be active and take care of ourselves.  It's really, really hard to be a parent sometimes.  I feel guilty about saying that b/c we have it so good compared to so many other parents...and it's still hard.

I realized a few months ago that I have some messed up Puritan message in my head that because we have a child with special needs, I expect our lives to be very, very hard all the time and if things don't feel hard, I must have it too easy. When it's not hard, when we have support, when I feel "normal", I sometimes feel guilty.  I feel guilty that we have a date night every week and most of our friends who have kids are lucky if they get one every quarter.  I feel guilty that I get to go to a job I love and Laura has to stay home.  I feel guilty when I go do things for myself because it means Laura has to pick up the slack. I feel guilty that even though we are bringing in so much less money, I'm not feeling it as much as I think I should because we are getting help from our parents.   I totally recognize that guilt is a basically useless emotion. I don't feel shame.  I don't feel remorse.  I feel guilt.  I feel like I'm getting some privilege I shouldn't have because everyone doesn't get to have it. Ah, the perils of being a WASP.
I'm working on realizing that these advantages and resources we have help me and us be contributing members of society. I know it wouldn't serve anyone to have me be so completely overwhelmed by the challenges we're facing that I fall apart. I know this. And yet somehow it feels like I'm cheating by getting help.
Just a little nugget from the dark recesses of my mind :-)

On the bright side, Simon has now completed two full sentences. "Hi Mama" and "Bye Mama". He's mimicking almost every new word he hears, either by trying just the end of it or whispering or mouthing the beginning. It's really cute. "Umbrella" is "La". "Elmo" is "Mo". "Please" is a very cute flip of the tongue that sounds like "Pluh".

He and Laura went to the California Pacific Medical Center for an intake appointment at a Feeding Program there. They were very excited about him because he evidently is a perfect candidate. We're going to try some new things with him to lay down the neural pathways to connect mouth activity with getting full and go back in 3 weeks. This would be such a MAJOR step if we could get the boy eating, even just 10% of his total calories a day. It's hard to imagine the day that he would eat everything by mouth, but evidently anything is possible because we're where we are today.

Simon has been looking particularly dapper these days as you can see:

Birthday celebrations

Too tired to write. So much celebrating.

Heeey, welcome to my birthday party

Cake!

Getting ready to wear my new suit- Tom Cruise ain't got nothing on me

I like the disheveled look

But I'm more of a classic guy

Aaaw yeah

This is my real 'suit' though- Super Simon!!!

I got loads of birthday love for my Auntie Dre

And I have loads of love for you...just for you

I call that one my Hippie Magnum look.

Beginning

Today was the beginning. Today was the beginning of my time as a mother................. This is not the birthday blog entry that I want to write. But here I am, sobbing my frickin eyes out because today was the beginning that never got finished.


Hindsight blah blah, probably born with it, blah blah blah, whatever.

Today I gave birth to Simon Lev and he was my baby boy.  Born without complications, born at home, breastfeeding well, sleeping right next to me, my little healthy baby boy.

Today was the beginning of a three month, 21 day, odyssey that ended abruptly. I sound so fucking fatalistic right now but I gotta tell you, the tears running and uncontrollable sobbing tell me that I am grieving something really big right now.

I wish that I could tell that two year younger me some things. I wish that I could tell her/me that things are amazing right now but you have no idea what's coming. I thought I had some range in thinking about all the things I didn't/couldn't know as a new mom.

Yeah right.

I miss that two year younger me though. The one that thought I'd have gone back to work part time. The one that imagined picking up Simon from the special-just-right day care that we found for him. The one that was excited about teaching him to eat, not missing out on other kids birthdays for fear of germs, spending too much time looking on the internet for a 'cooling vest' so that we could make our way through a Bay Area summer without having to leave/ stay inside/ deal with temperature sensitivity. I miss that me.

Two years ago today was the beginning of that new mommy excitement. Granted I was totally exhausted, my body feeling just like and totally different from that time that I did get run over by a truck. Jaime and I were in shock. We'd done it. Two months of trying and 41 weeks later and here we were. A threesome.

So what that for the next three months 21 days were we dealing with what we thought was a kinda fussy baby?

He was smiling. He was laughing. He was our fussy baby.

Today is the beginning of that time when there were no syringes, no medications, no echo's, no blood draws, no hospital stays, no infections, no feeding tube, no PT, OT, early intervention program, no barfing, no shortening or ejection fractions, no waiting to see if you were going to live or not Simon Lev.

I was just your mom. I miss that. I miss just being your mom. I miss that me. She's gone and I don't think that she ever gets to come back.

It's not that I would trade a single moment of my time with you over the last two years. Any of it. All of it. Those first 3 weeks 21 days and then the next 20 months and 7 days.
All of it makes me the mom that I am today and I really like this person I've become (mostly. I think I could take better care of myself sometimes). And I really really like the person that you've become Simon. You are exceptional. The way that you greet your world.
"Hi! Hi! Hi!"

The way that you are so clearly in your body and in touch with the world around you. You are present for each moment. You may not eat or drink just yet but you certainly drink in life.

So why am I still crying? How ironic to be feeling such a profound feeling of loss on a day two years ago when I was given such an incredible gift. You are such an incredible gift to me Simon Lev and so much not the gift that I thought I was getting.

So I'm sending lots and lots of love to that Jaime and Laura of two years ago (just starting contractions right about now).

The space time continuum is really thin and I feel the discord between what that me was feeling, with what's real right now. It's a Grand Canyon scale chasm. It's filled with a million and one experiences that those new parents of two years ago can't even imagine. They can't even imagine the range of experiences that are coming their way, let alone the experiences themselves.

Each one an incredible patch of road. Some rough ones, some smooth, some clouded, some with incredible vistas.

Here we are at two. The me of two years younger is so excited to share ice cream cake with Shimmy La tonight. The me of today is feeling so blessed to be here at all.

Happy Birthday Simon Lev

Gooood Morning Birthday Boy

Family Bed

Post Birthday Strawberry

Omission

I can't believe that I forgot to include last weekend's kick-off activity. This was at Shabbat dinner at our dear dear friends Justyn, Kim, and Amira's house Friday evening.

http://www.youtube.com/watch?v=rT7H87AdF30

Please note the Pinafore AND board short combo. It's a look, riiight?

Our Weekend in Pictures

We begin with an early drive down to Oakland's Chinatown for some Dim Sum (w/ Anne, Eric & Jonah)

Later on in the park Simon and Manav decided to play 'train'. Manav is not so sure about Simon driving.

Later on there was Dinner with Moses D and...

After dinner Simon was feeling like it was time for....

some beads and a little invoking of....

some good ole' time religion. "say Halleluja will you!!?"

Spreadin' the love

"Yes, I thought that was a service worthy of opening my shirt button,

I really spread the word with that one."

And finally, after at least 2 weeks of not napping....Blessed be.

Mystery Solved

Bilateral ear infections. That has been the culprit plaguing our sweet boy for the last few weeks. Such a simple, simple thing that has caused quite a few moments of terror. Laura took Simon to the pediatrician today (I keep wanting to say the Vet!) who took one look in his ears and decreed, "Yup, that one's infected. Yup, that one too". Oh, and he had nasty, nasty slime coming out of both eyes. It was quite lovely, really.
This may not be all of what has been making him sick, but it's likely what was causing the cough, runny nose, sore throat and fever. So, let's raise a glass to Amoxicillin, shall we and cross our fingers?

Interestingly, he showed no indication of any discomfort in his ears. I theorize that his reference point for pain is so off the charts that he doesn't even really register such a "minor" thing. I mean, when you've had a tube pulled out of your chest with just a little Versed, what's a little earache? Who knows, but that's my latest pop psychology.
Laura and her Mom reminisced about the chronic earaches/infections she had growing up (as did I). She hopes she's passing on some other things to him besides this nugget. Actually, two docs from the hospital saw Laura and Simon out together today and one of them said "I'm kind of freaked out right now about how much you guys look alike". So, he gets his good looks and his infection prone ears from her. Everyone's got to compromise, right?

All said, though, how typically toddler is it to get an ear infection? I'm a little shocked it's his first one. AND, it just reminds me that our margin is so thin. I think we almost had to take him to the ER because of an ear infection a few weeks ago. That's insane to me.

Laura just told me that the pediatrician today affirmed her for what we're doing with him. She said that we're doing an amazing job, both with the typical care and the non-typical care. She appreciated the ways we provide him with everything we can- from making sure that he gets as normal an experience as possible to keeping him as safe and healthy as we can. She remarked, "He's just thriving because of what you're doing".

I got tears in my eyes when Laura told me that. I often take it for granted- I can't imagine doing anything less for him. I was just telling Laura last night how totally in love with him I am. It's taken a while to get there (I likened having a newborn to an arranged marriage. "Um, nice to meet you...so, we're going to be together...forever?") but I love that boy more than I thought possible. And I think we're just getting started.

I'm so glad that Laura got seen for all that she does. And, yes, yes, Laura reminded me, for all that "we" do. I just feel like I do such a small fraction of what is needed to care for him. I know, I go to work every day and bring home a paycheck, but it feels easy by comparison in some ways.

I have hard days at work (I worked until 11 pm last night) but I get to flex my time and things are predictable for the most part. Laura has days when she gets NO breaks, when Simon doesn't nap, when I'm working late and he's puking and crying and she doesn't get to see another soul for a whole day. I can always go to the bathroom at work and take an extra 5 minutes and play a game of solitare on my iPod. She doesn't always have that option.

Yes, we're equals AND she's my hero. We are keeping him alive and thriving together, but she's the ox pulling the heavy load most of the time. I do love my little Taurus...

A little bleary eyed and still chipper. Miracle boy

Spoke too soon

That part of the last post when I talked about how well Simon is moving through his colds, this last one in particular...


Just kidding.


We're back to watching closely and calling Dr's.


He's got another fever and spent most of the day going back and forth between riding a medication high (mostly homeopathy which is great) and scraping the bottom of the barrel with sweats and pukes and truly pathetic break-your-heart moaning.


We are three weeks into solid illness and while each bug is clearly different from the rest, we seem to be getting more and more into scarier symptoms. Mostly I'm just talking about fevers.


Now for most folk, young and old, a fever can be a great sign that the body is doing what it needs to for recovery. We learned today that every degree over normal body temp requires the heart to work 10% harder. Well, for someone who's heart is functioning at at-least a third less than yours or mine...when he has a fever of 101.7....that math is beyond me since I haven't taken math since my sophomore year in high school- but it's not good. It does not fill me with assurance that he will be fine. It makes me hold my breath sometimes during the night so that I can hear whether he's grunting in his sleep signaling that the fever is back.


This sucks. He's holding his own for sure but that line feels gossamer thin and I hate feeling that way again, regularly.


Guess what else I hate....the change in schedule. Or more clearly the loss of schedule. I know Simon is managing for the most part with our hanging at home (bless the Teletubbies, bless them big) but for me it's a little bit of a snowball effect where one missed 'school' day is ok, but to go three weeks without my parent support group, hurts. No swimming, no 'school', makes Laura a dull girl. Actually the opposite really. I feel really sharp, kind of on edge. A little crispy round the edges. Like when bacon has been cooked too long and it's that kind of sharp that cuts the top of your mouth when you eat it.


Sigh.


At least the sun is out. I am so ready for cold and flu season to be over. So ready.

Another week sequestered in the house was threatening to turn me into a babbling idiot.


Speaking of babbling, Simon's fave new activity is trolling for hi-partners. While walking or strolling down the street he will choose a target (usually the person walking towards or along side of us) and being to chant "hi, hi, hi" until they make eye contact and return the greeting. His intention is so obvious it's hilarious. If he doesn't get a response he will take 10 seconds to stare ("why are you not focused on me?") and move on to find another more willing target. It's quite amusing.


So there it is, a bacon analogy and a funny story about Simon. What else could you ask for in a blog post.

Walk down that road

We are two weeks into continuous colds but I'm hoping that we're going to get a break as Simon seems to be kicking this last one pretty fast. It's been a couple of weeks of rain and isolation and no napping so....please let there be some light (daylight savings pun intended) at the end of the tunnel.

The scare last week of Simon spiking a fever and just lying around groaning was a painful reminder of that fear that I've mostly put away. That worry of "is this the cold that might send us back to the hospital?" Yeah that one. After at least a half dozen colds that Simon sailed right through, certainly with some choppy waters but no capsizing, I had neatly tucked that terror away in a drawer and covered it with sweaters that I almost never wear.

Then, he was looking like he just felt terrible. Normally he compensates beautifully even though we can hear the congestion and/or coughing. All of a sudden he wasn't compensating AND he was coughing and snuffling. Then he spiked a fever. He spiked a fever of 101.2 while he was on a combination of Tylenol and Motrin and was wheezing again.

And so the calling began. Within 40 minutes we had talked to the pediatrician on call at his regular Dr's practice, the cardiologist on call at the hospital, his regular pediatrician (who just called to check in after the on-call Dr had called her), and Jaime and I conferencing about whether or not to just bring him in.

Amazingly, in that time his fever broke and his breathing slowed some. It was all too familiar.

Once again though, Simon manages to pull it out in the final minutes before the bell rings.

We've still been battling congestion and some wicked coughing but his heart rate and energy are more than holding their own.....working with so much less that you or me!!

Oh yeah, and some where between that and the current moment he started walking and hasn't really stopped. Life is alternately picked up it's pace and slowed itself down exponentially.

While it took us over 20 minutes to walk the block and a half to the Farmer's Market this morning (Simon has not yet mastered the 'shortest distance between two points' thing) it also means that I pick up my pace a million times a day making sure that he's not walking into the street, on to our neighbor's porch, into that open car door, in the opposite direction that we're trying to go, picking up cigarette butts from the sidewalk, and in general putting himself into mortal danger.

I'm a little tired.

That's all I got for now. Well, that and some stinkin' cute pictures.

Enjoy.

Heeeeeyy, how you doin'!

Aaaargh matey!

Check out my Cher impersonation

I just put my swim trunks on my head while Mom was in the other room. She doesn't quite know what to say about this.

I can just use my eyes as flashlights if there's ever a blackout.

Soooo bright you'd never know I'm on day 12 of numerous colds

Check it

I have so much to write about the last week and a half. Hard times, fevers, hospitals, no hospitals, no sleep, no naps, rain, steroids, blah blah blah.

And yet, I can't think of a damn thing to say.

Life as we know it is over.

http://www.youtube.com/watch?v=NSUOyChSOFM