Simon can have his cake and eat it too!!

We had a most excellent birthday dinner for Simon with 3/4's of his California Grandparents (we missed you Ed).
Grandma Nola made a most delicious Angel food cake for our little Angel and Simon was way too excited to sample his first Peep, chocolate icing, and freshly made whipped cream.
It was a sweet sweet night as you can see.

Simon's new hat from Mamaw

What?! What are you looking at? I'm cake-boy

Mommies and cake-boy

Mamaw D, Grandma Nola, G'Pa Bruce and Cake-boy

Grandparent Love

Mmmm I like this peep thing

Happy One Year Old

Before the assault

One Year Today!!!

Birthday Royalty!!

Today is Simon (and Alicia's) Birthday.

Amazing.

One year ago Simon decided, with the help of some prostaglandins, that today was the day and we didn't have to wait any longer.

For those of you that don't know, Simon's original due date was April 1st (no foolin') and by April 9th our Midwife suggested that we try a mostly non-invasive procedure to get things started. I say mostly because the procedure does involve having some one's (an OB) finger separate the placenta from the uterine wall to release the prostaglandin hormone and there's a little something invasive about that ;-)

Within minutes I was having full on active labor contractions and 7 hours later....there he was.

And here we are one full year, 12 lunar cycles, 52 weeks, a whole set of holidays, a new american idol season, and of course all that other stuff that fills up a calendar year... later.

Oh right and then there is all that other stuff that has filled this year. One terrible terrible day that started off so many terrible, wonderful, scary, horrific, forgetting to breathe, connecting with new and old community, being in the moment, getting ready to say goodbye to my son, crying on the floor, holding on to Jaime, intubation, blood tests, echo cardiograms, spinal taps, lines going in, infected lines coming out, breast feeding, bottle feeding, bolus feeding, pump feeding, hospital cafeteria feeding (the grown ups), trips cancelled, visitors from the east coast, new friends, old friends, food drop offs, hospital baths with Carol, tubes, tubes and more tubes, finally less tubes, medications, and moment after moment of enjoying Simon....days.

His smile, his skin, his gaze, his laugh, his hands reaching, his body growing (and growing and growing), his spirit.

Simon, one year old today and so much more.

I want to cry and laugh and shake all at once, all day long.

Thank you
Thank you
Thank you.

Birthday Party Info Again

Simon's first birthday is coming up April 9th.

In the absence of a big pile of money from a celebrity to have an outrageous party, we'll be having a good old fashioned lesbian potluck (non-lesbians very welcome to attend!) to celebrate Simon beating the odds and making it to a chubby, smiley, happy, first birthday.

Saturday April 11th

2 pm - 5 pm

Lakeside Park Oakland

There is a BIG playground nearby, a large Picnic table, a huge expanse of grass (bring blanket to sit on or folding chair if you want to) and bathrooms nearby. We plan to just have a mellow, rolling-in-the-grass, face -stuffing, celebrating-miracles time of it.

Bring your kids, bring your parents, bring anyone who has ever heard of our dear son and wants to meet him in the flesh. Bring a guitar. Bring a drum/ tuba. Bring a song to teach and/or share. There will be speeches and singing and merriment galore.

We want this to be an opportunity for anyone and everyone who has been tracking his progress and sending him love to come and show your face so we can thank you in person. This means *you*!

We'll provide sandwiches, you bring a side and/or drinks.
We got plates and cups and such.

Please email lafitch@gmail.com if you think you'll be coming and roughly how many people you'll be dragging along with you, just so we can plan the sandwiches.

Directions:From San Francisco:
Bay Bridge and take the exit onto I-580 E toward State Hwy 24/Hayward - StocktonStay on I-580 E toward Hayward - StocktonTake the exit toward Lakeshore Ave/Grand AveTurn right at Grand AveTurn left at Perkins Ave (there is a Gas Station on the corner- go left on Perkins here)Turn left on Bellevue Ave (It's one way) to find parking


From Peninsula:
Cross Dumbarton or San Mateo Bridge and get on 880 North
Take the Oak St exit toward Lakeside Dr
Turn right at Oak St
Continue on Lakeside Dr
Slight left at Harrison St
Turn right at Grand Ave
Turn right at Perkins Ave (there is a Gas Station on the lefthand corner- go Right on Perkins here)
Turn left on Bellevue Ave (it's one way) to find parking


From Berkeley:
Take 580 East
Take the exit toward Lakeshore Ave/Grand Ave
Turn right at Grand AveTurn left at Perkins Ave (there is a Gas Station on the corner- go left on Perkins here)
Turn left on Bellevue Ave (It's one way) to find parking


From BART (about a mile walking)
Go to the 19th Street Station
Head northeast on Broadway toward 20th St/Thomas L Berkley Way
Turn right at Grand Ave
Slight right to stay on Grand Ave
Turn right at Perkins Ave
Turn left at Bellevue Avenue
Find street parking anywhere
We will be under the trees right where Perkins Avenue forms a T with Bellevue.

Can't wait to see you!

Nude but tasteful

Here are some Photos of our 'sick' son

Bath time April 3rd 2009

Showing his true Ewok heritage

Mama and Simon



That gaze...that tongue...just for you

He's using his powers here to make you fall in love with him.

Working yet?

Somebody loves him some bath time

It comes within centimeters of being obscene

So frikkin' cute

Aaaawww Yeah

He just loves it



If you look hard you can still see remnants of peas on his face.

Joining the E.R. Club

Jaime here:
I got my own personal E.R. visit this morning. The end result is that I'm fine, but the last few days have SUCKED.

I've been feeling periodic dizziness and shortness of breath since last year, a few months before Simon was born. I have been chalking it up to anxiety, since I have a history of panic attacks and sometimes just generalized anxiety. I went to see a doctor about it then b/c I wanted to rule out anything scary. Got a clean bill of health and just worked on managing the symptoms. Then, a few months ago a started to feel some pressure in my upper chest that would spread up to the top of my neck. A little concerning, but probably anxiety. Then this past Sunday I started to feel heart palpitations. Not like 1 or 2 fleeting ones, but like 20 throughout the day. Then I would have a combination of shortness of breath, dizziness and/or shortness of breath. Not fun and definitely more intense than usual.

I went to see my primary care doctor (love her!) on Monday and she took my complaints seriously given my symptoms and terrible family history re: heart disease. She began a cardiac workup including an EKG and bloodwork. The EKG in the office showed a variable heart rate but nothing super clear, so she decided to have me wear a 24 hour Holter monitor (device that tracks all heart activity for 24 hours). I planned to pick it up the next morning.

That night I felt a bunch of palpitations and since we have handy dandy stethoscopes all over the house, had Laura listen. She could definitely hear the hiccup. I called my Dr. and she said that basically unless I was having severe symptoms (extreme breathlessness/passing out), there wasn't much to do. If I went to the ER. they would just send me home and tell me to see her the next day. That made me feel a little better that she wasn't super concerned but I still felt like crap and pretty symptomatic.

Tuesday morning I picked up the Holter and the diary to record symptoms. I was supposed to write down every time I had a symptom and the time and they would check it against the monitor printout. I hadn't realized it until I had to write it down, but I was having some type of symptom averaging every 10 minutes. Sometimes it was every 3 minutes, sometimes I'd only have 3-4 in an hour. It sort of freaked me out to realize how frequent they were.

I turned in the Holter yesterday morning and then learned that they wouldn't have any results for 3-7 days. I called for blood work results- totally normal, so it wasn't my thyroid. However my symptoms just kept increasing to the point that last night, at my Mom and Stepdad's 20th wedding anniversary dinner, I really couldn't eat and felt breathless and horrible most of the time.

I had a rough night's sleep last night and then called the on-call doctor at my primary care office at 6 am this morning. I told him what had been going on and that my symptoms were getting worse and asked if I should go to the E.R. or just hang tight. He suggested I go to the ER to see if they could pick up something that they Holter might miss and because we'd get results sooner. I felt so relieved. The idea of waiting 7 days to find out what the hell was going on, when I felt so badly, made me just want to pass out.

Laura and I tried to figure out if we could get someone to watch Simon, but realized it just wasn't really possible at 7 am so I went by myself. They got me in right away and took a preliminary pulse, bp and blood oxygenation. Everything looked good. They put me in a room and started hooking me up to a heart monitor and a pulse oximeter (measures oxygen saturation in the blood). Heart looked pretty good but my pulse ox was 88. It should normally be 97 or higher. They thought maybe it was because my hands were cold, but they put me on a nasal cannula and it picked right up. That's usually a sign that something is up. If the Oxygen brings it up, then it's not the sensor, it's the person. The monitor above me kept dinging and the 2 nurses kept looking at it, a little worried. I was starting to feel a little nervous that there actually might be something kind of big wrong.

The doctor came in (the same one who saw Laura when we had to go to the ER for her back pain when Simon was still in the hospital) and he asked me a bunch of questions and then felt behind my knees and in my calfs. I realized he was checking for a blood clot in my leg, called Deep Vein Thrombosis. They're dangerous b/c little pieces can break off and go to your lungs. My old boss had this happen (called a Pulmonary Embolism) a few years ago and it took her out of work for months.

He ordered a blood draw that included atest that would check to see if I had a Pulmonary Embolism and a chest x-ray. Depending on what that showed, I could expect a chest CT scan to find the clots if they were there. The doctor left and I asked the nurses if they could tell me anything. They said it didn't look like it was a cardiac issue but that the doctor thought I might have a pulmonary embolism given the shortness of breath and poor oxygenation. I felt a really weird sense of relief. Pulmonary felt a lot less scary than heart. Call me crazy for preferring a blood clot in my lungs to a cardia arrythmia, but I felt a little better.

They started an IV, drew blood and then I was taken to have a chest x-ray. They said it would take 45 minutes to get the results of the bloodwork to confirm if there was an embolism, so I called Laura in the interim. Poor thing. She was not as comforted by the news of a possible Pulmonary Embolism. I joked that Simon and I could take Coumidin (blood thinning medication) together. Again, she did not think that was very funny. I can kinda understand...

About 20 minutes later, the doctor popped in. "We're sending you home", he said with a smile. "You are the picture of health. Whatever you are doing it, keep doing it. Do follow up with your primary care and get the results of your Holter, but you look great. By the way, did anyone ever tell you that you look like Frances McDormand? In a good way. She's more blond and you're more redheaded but you totally look like her". And he was gone.

HUH?

So, evidently, I can climb Mt. Everest AND I need to get crackin on getting my anxiety under control. Guess that will be my new project.

Operation CHILL.

We're ok

Simon's doesn't have a gut bug. We may not have to pay$600 a month (unclear) and he's still putting on weight in a more than acceptable way.

Plus he looks like this.

No pictures please...talk to my agent

Ok, ok, just one

We're doing ok over here in Oakland. The sun is shining, Simon's gotten an 'ok' from his Doctors, and I'm not letting the pukey morning bother me.

This time last year I was wondering when the heck the little man was going to come out! Today? Today? On his actual due date?

April Fools!! Not for 8 more days.

He was interested in teaching us lessons even then.

Most of the time there is nothing to do but be in the moment.

My lovely little stinker son.

Canada Please

I hate our health care system. If I could guarantee that 30+ of my family and friends would come with...I would so be moving North right now. I hear Vancouver is a spectacular city.
Our insurance is ridiculous and we're just finding out now (4 months later) because that's how long they take to get up to date on the billing.
$600 dollars a month is our copay- COPAY- on our feeding set up. That's a 20% copay that we have to pay in addition to our $1000 a month premium. Not to mention the copays on his medications, doctor visits, and vaccinations. I won't even mention things like dental or vision.

I hate this. For so many reasons I hate this. Hate it.

All those years of putting savings away, thinking that I was being so smart thinking about my later years. Never ever working a job that had any kind of pension plan (who has that now?!!), I always put at least 15% right into a retirement account. Always looking for an additional $50 dollars here, $100 dollars here to just sock away and pretend doesn't exist. I thought I was being so smart.

Who cares?! What kind of difference does it make when the cost of being sick can wipe that out in one fell swoop.

I don't think it will and we're working all of our system knowledge at this point but.........for crying out loud!!

I never saw Sicko by Michael Moore because I thought it would make me too mad. Now I'm living it (not nearly as bad as most folks, for sure but still) and I can't believe how asinine our system is.
That, and I would have to completely deplete all of my savings before Simon would qualify for SSI and Medical at which point I would then need to go on GA (general assistance/ Welfare) instead of being able to parse out my savings and not cost the gov't even more $$.

Asinine.

Vancouver anyone?

Gastrolittlebugitis

So Shimmy's got some kind of stomach bug and while it doesn't seem to be dangerous at this point, it's making for some pretty uncomfortable moments for the little man.
He's got diaper rash for the first time in his life (a result of some unhappy pooping) and a little more throwing up than we've seen in the last couple of weeks. Add to that an inability to put himself to sleep easily (or at all) and we're pretty thankful that we already had an appointment with our GI specialist scheduled for Tuesday.
Jaime is with the little man right now (9:15pm) trying to get him to sleep.
Other than that it was a really nice day complete with brunch out with G'Pa Bruce and Grandma Nola, and great windy dog walk and a sweet bath and naked time on the bed with his Mama's. Hopefully Tuesday will bring a simple diagnosis and solution.
Think calming cooling thoughts for the little man's tumm and rump.

BNP- Big Nothing Probably

So, Simon's BNP is up. Not much but it's up. Last month we were at 366 and this month 547. Still significantly below 1000 but still up. HunkyPants not worried, in fact he was surprised that it wasn't up more (to which I replied "what the hell does that mean?!"- not out loud, just in my head).

Otherwise, we're just keeping our eyes on some watery stools and keepin' on, keeping on. Simon was a little stinker last night and since his mommies were out on a date stayed up way past his bedtime with his Mamaw (bedtime= 9:30!!) but isn't that what kids pull with the babysitter or grandparents? Staying up late and doing all sorts of things that they wouldn't normally do with the parents around?

Still, he did sleep till 7:30-ish and most exciting.....not a peep all night!! Not a wake up, not a throw up, not even a spit up.

He's been doing that with his feeding too. We're seeing a real decrease in vomiting so maybe that's why there's the increase in pooping. Gotta come out somewhere right? It's the just watery consistency as of late that's needing some attention. He's just a little off and for the first time in his life has some diaper rash. Add that to the hot weather (we're seeing some sweating- might be heat or heart associated) and some fussiness and Jaime and I are just keeping our eyes peeled a little more than usual. It's exhausting.

I don't want to go back to the hospital. Say that 3x times with your eyes closed and you pretty much have a good idea of how my late afternoon went.

After we had some great visitors earlier this afternoon, Simon was just a little out of sorts, with a little projectile vomit, more than a little fussiness, and exhaustion resulting in 5 minutes naps alternating with 5 minute crying jags.

Tonight he seemed mostly fine but just a little off.

Something's up but we're not sure what. We go from moment to moment.

Yay for the weekend and having two of us.

A huge shout out to Mamaw D for being around this morning and afternoon... Shimmy and I love you big time.

Famblee Photo

Simon and Joan's son Sommers practicing their breakdancing routine...I'm not kidding

Check them out.

http://www.youtube.com/watch?v=EJFqOK7Acac

Rough day

Jaime didn't have to go into work until 1pm today so for the first time since November she got to come with us to our regular Cardiac appointment. Aside from waiting for an hour for it to begin, Simon did fairly well during his ECHO (we kept him reclined only slightly in Jaime's lap). Howard let us know that not much looked different (same Ejection Fraction and Shortening Fraction 36% and 18%) but then he mentioned almost in passing that Simon's left ventricle seemed to be just a little bit more dilated. It was "marginal" but we would need to keep an eye on it.

Fuck me. Marginal my ass.

Of course, now Jaime and I are trying to not to worry and simply get back to that place of taking each moment for what it is, but what (new) parent can really do that when there's something that might be wrong with your child? What new parent of a child with a heart condition can do that? What new parent of a child with a heart condition that also seems to be changing every five minutes because he's just about to turn 1 and is hitting growth spurts and milestones that we've never seen before can do that?

I could probably go on but Mrs. Rosner my 5th grade teacher didn't like run on sentences.

I'm trying to sit with the 'Simon's hitting milestones and growing' thought rather than the 'Simon's heart might be getting worse' thought.

It doesn't help that our sweet amazing sleeper is changing into a tantrum before bed kinda guy.

Tonight he went psychotic on me for a little over an hour, completely inconsolable and tired as all get out.

I was just about ready to call the hospital when the Tylenol that I gave him 30 minutes before finally kicked in and he fell into a heavy sleep in my arms. Before that happened though I was about to lose my shit.

Any baby (or adult) having a tantrum for an hour is hard to deal with. Nothing to be done to soothe, the arching back, the wails that seem to cut right through you, it's not a good time for anyone. Simon having a tantrum like that feels just that much harder. In my mind all I can see is his enlarged angry red heart working itself much harder than is good for it, growing larger and weaker with every passing minute, wail, arched back spasm.

Really, I was about to lose it. It wasn't even one of those "I want to toss the baby out the window" moments. It was an, "I have to figure out how to stop this or else Simon's heart will damage itself even more than it already is."

No pressure there.

And, what I do know is that Simon's heart is a lot more resilient that I think it is, especially in those moments. Why? Because when I checked his heart rate 15 minutes later it was 120, and when I checked it 15 minutes after that it was 90.

Deep Breath

It's not great but he can have moments like that.

The following morning (it's now Wednesday evening) it became clear what's going on.

Simon is deep in the throes of his 1 year growth spurt. He pooped three times today before 3:30 (he's usually a once a day, if that kind of guy) and has completely changed his nap schedule.

Growth

Spurt

Totally normal for a baby approaching one year.

Thing is, he's not a normal baby. Even if I were just a new mom of a typical healthy 1 year old, this would be off centering enough. I've heard other new moms talk about how hard the changes can be, in that once you finally feel like you have some kind of routine down....they go and change it on you and you don't know what hit you.

With Simon, it's that I catch myself noticing his changes and wondering what the hell is going on? Only my "what the hell is going on?" is also about wondering if he's decompensating in regards to his heart failure.

Heart failure. Simon is still in heart failure. His heart is sick, very sick.

...................

I just wrote this whole paragraph apologizing for bringing that up over and over again but I just erased it. I'm not apologizing for it. You're here reading so....

Yes, I feel somewhat alone in managing that.

{No one is around him as much as I am and even Jaime doesn't get to see the medications going in, the vomit coming out, the doctors visits, and trying to manage his germ contact with other babies and friends, on the same scale that I do. And even when Simon and I do socialize it's not around feeding or medication time- how can it be? That would be so boring and/or messy. So it's lonely. I don't think there's anything to do about it. I don't feel it all the time. I just am now. I feel lonely. - wish I could have the power ballad "All By Myself" playing for you right now)

but I also know that there is so much love and so many people standing with and behind us.

It's hard right now. With the large looming left ventricle question, the growth spurt, and the upcoming 1 year marker, things feel just a little more intense than usual.

I'm hoping that the coming Passover holiday brings an additional kind of celebrating the "exodus". I'd like to think that we're heading out from the tough times.

However, a little less than 40 years in the desert would be nice.

Ok?

Ok.

Update Continued

Continued....
Last Wednesday we had a fabulous dinner with one of our midwives, Amrit. It was so wonderful to see her, especially as we come to the one year marker of that incredible night. Jaime and I went over the birth story the night before we met Amrit and then got to rehash it some more over dinner.
I think working with a home birth midwife gives you a relationship for life. It starts the same moment that your relationship with your child starts. When does that ever end? In sharing that moment with Jaime and I, I will love Amrit and Lior in a way that I can't imagine ever leaving me.
It was such a sweet time to reconnect and catch up.

On Thursday Simon was in rare form and several dog walkers visiting the Point Isabel Dog park that day can confirm that. It's our second day working with a new baby carrier. Simon, chunker that he's become, makes long walks with the ergo not so much fun for the sensitive back of Laura M. Fitch. And while the stroller is wonderful, when there's been any sort of rain, walking on the muddy grass with it, el doggo, and bebe is not so much fun.

A while ago, my cousin Leah, gave us an external frame pack carrier that's been around the block (it's carried Sophie, Talia, and even Maya on several occasions). Now it's Simon's turn. So far we've practiced with a walk around the neighborhood, and a longer trip to the Zoo. He seems to enjoy it enough so we're experimenting with a longer dog walk today.

Once at Pt Isabel (the largest off-leash dog park west of the Mississippi), Simon goes in the frame pack, Roxie gets to chase her ball, and we're off. It's a beautiful day. The sun is shining. It's neither too warm or cold and there's delightful wind coming off the Bay.

No less than two minutes into our walk I hear a giggle from behind me. Something is making Shimmy laugh. Another three steps....another laugh. This continues long enough that I have to call Jaime on the phone and just let her hear him. He's just laughing for the joy of it.

And then it starts....he begins to babble. A "bah bah bah" here. A grunt and giggle there. His voice rises and falls with intonations I've never heard put together before. There's even a "fwaa fwaaa" happening.

Loudly.

Not yelling but full voice. And it just continues.

For a solid hour.

Simon is just talking away, calling out to people that we're passing by, bringing on some very interesting stares and smiles.

For an hour.

Really.

Non-stop.

It was incredible. There was something about the wind and sun, being up higher in the backpack, and being out watching the waves and dogs and people that just set him on fire. It was awesome. I couldn't wipe the smile from my face.

Friday brought another kind of experience with our evaluation at the Regional Center of the East Bay to see if we qualified for services. We'd been told several times that it's a comprehensive evaluation and will last two hours and involve a lot of questions for me and a bunch of testing for Simon. Thankfully Dianne was able to come with us and after a large vomit session right as we were getting ready to leave the house, off we went.
Once again, just like his physical therapy evaluation Simon rocked it. And while I was the beaming proud Mommy of the very sick but you wouldn't know it baby, I was also worried that we wouldn't qualify for services that we do in fact need.

Pre Appointment conversation:
Leela our case worker- "So the evaluation will likely last up to 2 hours so don't forget to bring some snacks for Simon."

Pause

Me- "umm, he doesn't eat. That's why we're coming to see you. We're hoping for some OT for eating."

Leela- "what do you mean he doesn't eat?"

Me- "he's on an enteral feeding pump and takes all his nutrition through his G tube."
Leela- "Right, ok then. You should qualify then."

I think this conversation happened with at least one other person before we actually got to our appointment. So going into it I wasn't that worried about qualifying.

Then we arrived and started to talk with Leela and an OT evaluator. Simon rocked his fine motor skills assessment, turned pages, played peeckaboo, was pinching and grabbing and putting just about everything into his mouth. To every question they asked me "does he...?" "has he...yet?" my answer was pretty much yes. This was making me very nervous.
As we finished up I was still waiting for the baby food swallow part of the eval to happen and when it didn't I got even more nervous.

Jaime and I need some help. Simon doesn't eat. He has no interest in feeding himself, never displays signs of hunger, and gags and/or throws up every time we put something into his mouth to swallow. I love food. Jaime loves food. 'food is love' is a saying in our house (no need to psychoanalyze that, there are lots of other types of love too, don't worry).

So as the case manager seems to be wrapping up and collecting her papers I had to ask, "do we qualify?".
She says "of course you do. We can hook you up with a nutrition and eating specialist in the next two weeks and get the paperwork going for respite care as well."

Yeeehaw!

But they don't stop there. Both Leela and the OT person go on for minutes about how special Simon is and how they really don't often get to see babies so compartmentalized in terms of their development. As in, except for the not eating part, Simon is doing exceptionally well. There's another blog entry coming about how that's alternately such a wonderful thing and sometimes makes me feel completely alone in the world. But that's for another naptime blog entry.

(BTW Respite care ='s 10 hours a month which is not much but will be a welcome bit of support for me)

And I think, Simon is so amazing! He is so interested in living his life he has managed to drink it all in, save for what is too much for him. Eating and swallowing are too much for him. But, reading and grasping and moving and dancing and pinching (hard!) and hugging are not and he attacks those things with delicious gusto. What a lesson in loving your life and not being complacent. Not being complacent but also being gentle with yourself.

He'll eat. I know he will. It will just take us some time. Luckily that's what his heart is giving us right now. It is taking it's time to heal and get stronger, but the rest of him is doing such a stellar job at just being a baby... that lets us keep going on, slow and steady, going on. So, I try not to worry too much when he won't go down for his 2nd nap because he's too wired trying to roll over and stand up in his crib. That's his job as a baby. I do my best not to freak out when after 25 minutes of said activity he's panting hard. He may be panting hard but 20 seconds later he's not and that's 'normal'. It's just different that I'm counting the seconds to see when he stops panting. And just for fun I'll add in an extra counting his heart rate during the day. Just for fun.

Who talks like that?

Other than that it's been a lovely time of it. We had a wonderful brunch with G'Pa Bruce on Sunday and there's nothing better than watching Simon pull his G'pa's finger.

Today we got recognized at the Berkeley Bowl from our blog. Simon is like his redheaded Mama in that he loves to be recognized. He was just smiling and basking in the attention. Mommy is learning to appreciate it.

Tomorrow is a cardiology appointment complete with Echo Cardiogram, and blood draw. His BNP should be in on Friday and I'm wicked curious.

That's the general update. See you all at the birthday party right?

Here are some pictures of Simon in an outfit that his Great Uncle Barry sent him. Yup, it's Barry's outfit from when he was 2 years old (sometime in the 1840's- oops I mean 1940's sorry Uncle Barry). Check out those buttons. And yes, it came with that silver spoon. You can't see it but it says "Little Boy Blue" on the spoon.

Caught- Loving His Mama!!

Update

"Hi"

"Hi"

That's Simon saying "Hi" to you all. That 2nd one is whispered, which is his new favorite way of saying the word. Too cute. There seem to be at least 6 variations on the way that he says it now but the first morning, eyes just opened, slow sweet smile, "Hi" whispered ever so gently might be my favorite.

Although I will say that last night's "Hi" might take the cake.

So Jaime and I had our Thursday night date, a lovely excursion into the city for Papusas (thank you Alicia and Karen for a wonderful impromptu double date) and returned home to a little rascal still awake and chipper as all get out at 8:45 pm (way late for this little man).

After much cajoling, getting the overnight feed started, reading and signing again (third time's a charm), and meds administered, both Simon and his Mommies seem to settle in for the night. I say "seem" because after about another 30 minutes of Jaime and I lying in bed, quietly chatting, we hear some movement over in the little man's bed.

First we see the hand. It creeps up slowly to grasp the top edge of the brown and white checked crib bumper. Again, with a deliberate grasp, the second hand follows it.

We watch as both of them clench and pull, allowing the head to pull up over the edge of said bumper.

And there he is, awake as though the sun were high in the sky. Eyes wide open, smile playing across his sweet little punim (face).

For dramatic effect he pauses, his gaze fixed on his mommy (plural) target, and then lets out a quiet but clear "Hi".

He again pauses, and then slowly lowers himself back down with what I can only imagine is a double-wide shit-eating grin as his mothers fall on each other with uncontrollable (although for volume's sake we are trying) laughter.

It made me want to jump out of my skin for all the cuteness.

Besides that, we have had quite the busy week.

Last Friday we had our first of three evaluations through the Regional Center of the East Bay. We were referred there by the CHO folk when we were first discharged and have been hoping to get our Occupational Therapy (for eating) through them since it would be free of charge. They are an amazing organization that offers services that are not necessarily financially based but developmentally. So, as we hover right above that financial cap for qualifying for federal and/or statewide services, and I do mean right above, the Regional Center looks at the child and offers services based on the medical and developmental needs instead of financial.

Our first evaluation was for Physical Therapy. Last Friday a wonderful physical therapist came to our house (yes, I said "came to our house") and spent an hour going over how Simon is doing in regards to his gross motor skills. After checking him out and asking lots of questions she said "He's not like most of the cardiac babies that I see. Usually they just kind of lie there looking wan and listless." GO SIMON!!!

He's just a little behind (as an 11 month old, he's moving more like a 9-10 month old). Given that he's been in heart failure, spent four months in the ICU, and should be 'wan and listless', I was pretty psyched to hear all that. She also showed us just a few things that Jaime and I could be doing to move him along. We've been working with him for just a few days and already I can see a difference in how he's moving, getting himself ready to stand up and locomote more independently.

It was a pretty positive interaction.

Then this past Tuesday we had our home nursing visit with Sherri (every two weeks now) and we were both a little non-plussed when we dumped that little chunker on the scale and saw that he had gained just about a pound in 2 weeks!! Not so great for a baby with a cardiac problem to be gaining weight so fast but we realized that the two weeks before he'd only gained about 4 ounces so over a month it evened out to be just right. Who weighs their baby every two weeks anyway?!

More to tell but I'm getting pressure to get a post out.

Coming up: more about his development, dinner with Amrit, our midwife, and an external frame back pack and funny looks at the dog park.

He should wear hats like this more often no?

Enjoying Shabatt Dinner (complete with Yamulka)

Maude would be proud

I love the movie Harold and Maude. I first saw it in high school with my friend John Bowie (I'm pretty sure of this) and then went on to see it at least a dozen more times during college and probably a little less since then. I haven't seen it in a few years and so when I saw that it was playing on TMC I promptly set the dvr to record it. It only took me two days nap times to get all the way through it but this afternoon I got to watch the last 30 minutes while Shimmy was snoozing.

It's funny, I know that ending is so beautifully sad but I don't remember ever really crying at it. Part of that is I don't think of myself (pre-pregnancy) as a big cryer, although I certainly will tear up at the big jerkers. This afternoon, Harold & Maude hit home in way that it only could given the time and circumstances of my life.

If you've never seen the movie, please stop reading this weird blog about the Fitch-Jenett family immediately and go out to your nearest video store and rent the movie. I'm serious, do it now. Do it. Go.

If you've seen the movie but haven't in a while you should do the same.

If you've seen it in the last 6 months you're good. Read on.

So of course I love the quirkiness. I love the humor. I love the soundtrack. What's not to love? A 20 something with a death wish (and multiple staged suicide attempts), meets a 79 year old who steals cars, attends funerals dressed in white with a yellow umbrella, and transplants trees from the city to the forest. They fall in love.

Spoiler here.

That she chooses to end her time on this earth just as Harold is feeling love and connection for the first time in his life is so sweet and hard to watch. It always has been, but this afternoon it just hit home in a terrible and beautiful way.

Maude is a holocaust survivor but the only way we know that is from a story she tells in the first part of the movie placing her childhood in Austria and then a brief moment where Harold sees the number tattooed on her arm. There's no conversation, no obvious mention, no dialogue at all about it. In that moment though, it is clear where Maude's fire and love of life comes from. She takes such joy in living each moment, it's powerful like a tidal wave washing over Harold. It's so frikkin' sweet to watch him get swept away by her.

And so at the end of the movie when Maude decides that 80 years is just enough, you can see the devastation in Harold. It's an amazing shot of just his back, through a window no less, but you can see him crumple (even as he remains standing) from the loss.

It's how I feel with death standing just behind Simon ready to catch him should he or his heart decide that it's enough. That I could and would crumble like that if that time should come. He's doing so fabulous right now, laughing, smiling, and being so present for each moment in our days. I've said it before, he is such a bright light. He's just not tethered at strongly as the rest of us. If any one knows it's me, that just because you have a strong tether (you're in the best of health blah blah blah) there are horses and motorcycles that could cross your path. But to be walking through your days and already have the tether be gossamer thin...well that's another story. That's Simon's story right now.

So I sobbed. I sobbed for Maude who got to live with wild abandon. I sobbed for Harold who just learned what that means and now has to do it on his own. (I know they're characters in a movie but still....go see it.)

And

I sobbed for Simon who has so much joy and love to give.

Oh yeah, and I sobbed for me and Jaime for having to live with the fear that Simon may not get to share that love for very long and wanting him to get to do that because it's such a good thing.

I think how much greater the world I live in would be if he got to stick around. That's what turns the sobbing into a joyful laugh and smile.

That's what I ended on.

Now go see the movie.

Love to all

Laura

Avocado facial anyone? The carrot is extra.

It also works well as a pomade

Magic or hidden camera?

Simon and I were returning from a neighborhood walk to pass out flyers for his upcoming birthday celebration. He is a neighborhood boy and we wanted to make sure that all those folks from Arizmendi and Papyrus and Mezze, who we stop to say "Hi" to on our regular walk, are invited.

We are returning home, rounding the corner from Cheney on to Rand Ave when we notice a car making the turn from the other end of Cheney on to Rand. It's an old school white Cadillac with an older white gentleman driving the slow moving vehicle. I can't help but notice that the driver is also wearing a white sweatshirt and sweatpants and has a white mustache. It's a lot of white.

He slows down next to us and out his passenger side window says "that's a cute baby."

"Thank you," I reply.

"How old is he?" the gentleman asks.

"He's just 11 months yesterday" I offer.

"That is a strong baby," the man says.

I smile at him and he says again "yup, that is a strong boy" and continues driving.

I have to call Jaime right away. I wasn't quite sure what just happened but I liked it a lot.

I really didn't think that god was going to show up in such a stereotypical get up, what with the all-white and all... (although the Cadillac was a nice touch, the sweats threw me off).

Magic.

Simon is magic.

We Remember

For the last couple of months we have been attending the one year birthday parties of the boys from our birth group. At each and every one I become overwhelmed with feeling. Fahklempt, if you will. I am all at once filled with immense gratitude that I am still able to count myself among these families watching our boys meet their first year mark. I am terrified remembering with every cell in my body how close Jaime and I came to saying goodbye to Simon not too long ago (he is still longer in the hospital than he has been out). And I am brought to the realization once again that Simon's heart is not held to this world by much.


If love and community and well wishes could keep some one around, Simon would be like a mafia hit with his feet firmly in cement (I know sick right?). But that's not the case. I love my Grandma like that but she is gone. Simon's heart is not well. It's very sick and from all that we have learned about his condition we could be in for a very long haul of recovery. We could be in for a very long haul of a limited and difficult life. And, we could be in for a drastic change in a matter of moments and Simon could die.



Jaime and I held each other tonight as we remembered all this. We remembered all of this wrapped in the lavash of completely enjoying our son these days and wanting so badly to have it continue. I know it's not very Buddhist of us but we sure do feel attached to the little man.


The longer he is with us the more intense it feels AND I didn't think it could get any more intense than that first moment that I saw Jaime hold him April 9th 2008 at 11:17 pm. Here we are almost a year later and just about every moment with Simon has made me fall deeper in love with him, and Jaime, and our family. Ok, maybe not every moment in of itself (there was that "return policy" blog entry) but they all add up to loving this time with Simon and not wanting it to end.


I don't think there are many parents that have this playing around their heads and hearts so regularly. I know, I know, it's a fucking blessing. Great, I'm still talking about not wanting my son to die.

I don't know what to say anymore.


Here's Jaime:


I just had a good cry. It was the first time in a long time- overdue, I'd say. I felt it welling up since this morning at our first birthday party when I noticed he was a little sweaty. Granted, we were in the hot sun and he'd been pretty active. Total normal physiological response. But the fear that it strikes in both our hearts is intense because that was often one of the first symptoms when he was getting very ill each time in the hospital and the most obvious symptom before he went into the hospital.


Then, this afternoon at our second birthday party, Simon clung to me and snuggled and seemed more content in my lap than on the floor. It almost made my heart break with sweetness. He's starting to reciprocate. I really like him and I can tell that he likes me too. He tried to feed me a cracker today. It was disgusting and I didn't eat it but it was so sweet to have him try.


Then I went for a friend date this evening for a few hours and when I got back I just wanted to hold him close and kiss him and soak him in. Honestly, I think I missed him in those two hours I was gone.

Something is changing again for me. I'm falling in love with him on a new level. And with that comes fear, like it does anytime we fall in love with someone. The root of that all is usually fear of abandonment, right? For most people the fear manifests as, "they're going to fall in love with someone else. They're going to see me for who I really am and decide they don't like me. They're going to cheat on me. They're going to just up and leave some day." For some people the fear might be "they might die" but that's usually pretty unfounded. However, for us, it's right in our faces.


It's so hard to ignore that reality each time I feel myself fall deeper in love with him. I love that he's my son and I'm his Mama. He almost died a few times and it's well within the realm of possibilities that he'll get close again or actually do it. The fear of that pain is intense. It's good to touch it sometimes because it's real and it's there. And I can't stay there for very long.


So...onto some happy stuff. We had 2 great birthday parties today. Laura and I are feeling really connected and enjoying each other a lot. And, Simon is STUPID cute as you can see.

Gettin' Down With Saun-Toy

"I got a button and I'm proud!!"

Lovin' it up with Mama

"Howdy folks. Just getting ready for my Abercrombie and Fitch photo shoot"

Simon knows how to just give it up and surrender. We should all be smart like that.

Loved baby

We went to see Dr Su yesterday for a post surgery follow up. Dr Su was the surgeon that performed Simon's G tube placement as well as his Broviak removal when we were in the hospital back in November. She has seen him at his worst (Nov) and then again when he was doing really well (in January when she didn't initially think he was a candidate for surgery- then she saw him in person).

When we came in yesterday you could just tell how excited she was to see him. It was cute.

She said his Gtube placement is doing fabulous and even the red spots that are still there at the stitch sites might be nothing more than a stitch that hasn't dissolved yet and he's just having a slight reaction to it. I completely understand since I can still feel a stitch or two from my surgery. How many parents get to say that about their kids...that they know exactly what might be going on for them in regards to healing surgery sites. That's a little messed up my friends.

As we were getting ready to depart I asked Dr Su if this would be our last surgical follow up since we were also seeing Dr Gleghorn (GI specialist) regularly. Dr Su paused for a minute and then sheepishly replied "well, you could just see Dr Gleghorn and not me but I have to say, selfishly, I want to keep up with Simon and know how he's doing."

He is a loved baby. We gave her a flyer for his birthday party and she is going to do her best to come to his birthday party with her 14 month old baby girl. Too sweet.

Then we went up to Cardiology and the PICU to drop off birthday flyers and once again, folks were just gaga over Simon. He is truly a bright light. I feel like it's pretty important to keep sharing it. He is a beautiful reminder of life in all its fragility, and beauty and strength. He says "enjoy this life, enjoy this moment, it's a gem." It's almost like he's demanding it with each smile, each sparkly eyed gaze. It's so good for me to see, it's clearly good for folks at the hospital who always thank me for bringing him by, and it's good for the person on the street who goes to touch him- gets the "please don't, he's immuno compromised"- and can't believe this baby is so sick.

I don't have words really for how amazing it is. So, I just smile and go on being amazed and in awe of my sick, in heart failure, takes too many medications, eats through a tube in his stomach, incredible, shares his light/life force so easily and powerfully, baby boy.

Check him out.

Comb over anyone?

Even a little puke-age can't ruin this outfit

I love me some Mama!!

Don't you just feel your heart exploding with love