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

Simon Has Almost Made It To One!!!

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.

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 - Stockton
Stay on I-580 E toward Hayward - Stockton
Take the exit toward Lakeshore Ave/Grand Ave
Turn right at Grand Ave
Turn 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 Ave
Turn 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!

Hi!

It's been confirmed now by two separate parties (besides his mommies) that Simon is now saying "Hi".

Yup, the little man has said his first word.

Hi

A good first word.

He also responds to certain other communication like "up?" where he will lift his arms up to be lifted.

Or, "one two three..." for almost anything about to happen.

He will also now help get his clothes on. It's awesome.

Today he also rolled himself from his back on to his stomach and THEN got himself on to all fours.

A few hours later while we were visiting with a friend and her baby (a few months older than Simon) he got from all fours into a sitting position, twice!

He wasn't particularly happy about it while he was working it out but once he was done figuring out how to make it happen, he was happy as a clam.

He's truly amazing our little mover and shaker. He may be in heart failure but he's a moving and shaking baby in heart failure.

It's all incredibly exciting and I gotta say more than a little crazy making.

Simon is not your typical baby. I am not turning out to be the mom I imagined 10.5 months ago (even pre-Aug 1st really). I know, I know that nobody realistically turn out to be the parent they think they might be before their kid arrives. Still, I think our situation is just a little different from most.

I always thought I would be the mom that lets their kid get really frustrated while they try to roll over, crawl, stand up, etc. I'd be present and not let it go on for too long but really believe that it's a part of getting to those milestones. I struggle with wanting that for Simon but also seeing in my mind's eye that heart monitor from the hospital and knowing how that number that measures his heart rate would climb significantly when he would be crying and/or upset. That's not good for someone in heart failure. So I work it out as best I can. Simon will walk someday, it's ok if he breathes hard, just not for too long. What's too long? Beats me. Depends how I feel. That's a bit of the crazy making part right there- to put my son's heart health in the hands of how I feel in a given moment. I guess it's that parenting thing plus a little extra. Trust your instincts Laura and/but keep it in mind that Simon has a little something extra going on.

He's amazing. I love him so much.

I am so amazed at how much he teaches me every moment I am with him and certainly those I am not.

Speaking of, I got to go to Creative Arts Charter School (where I used to work) twice in the last two weeks to try and keep a scholarship program going. I used to work for an Outward Bound Scholarship program and have been able to get two slots for students at CACS ever since I started working there in 2006. It's been great to connect with those kids again and hopefully get a few of them on courses this summer. We'll see. It's hard because I'm not there everyday to encourage them to finish their applications but it's been so great to reconnect with that part of my identity and especially great to stay connected to those young people. I got lots of hugs today from students that said they were missing me. Shucks.

Simon is starting to squawk.

Peas.

Laura

From this morning's photo shoot with Mamaw D

A Penny More

Yesterday was our regular every three week Cardiology visit. Simon was messing with me by not going down for his usual 2 hour nap until 12:30 (usually starting at 11 or 11:30). Our appointment was for 2 and I gotta say waking a sleeping baby (already a no-no) to take him to the Dr's for an Echo Cardiogram and a blood test, is not fun.

Luckily the little man woke himself up at 1:40- perfect timing- and off we went.

For the 2nd time in a row his Echo was not fun for him. Normally he lies back and relaxes either focusing on the TV that they keep on all the time (spongebob anyone?) or the nice spinning light toys that they have on hand.

Simon was having none of it. No spongebob, no spinning light distraction, he was just pissed off and letting anyone with earshot (dog hearing earshot) know that he was unhappy.

Lately he just hates lying on his back, unless he's naked and rolling around the bed in the wee hours of the morning with the mommies and doggie.

He spent the entire time pushing at the hands of the very nice but new Echo Tech Michael. This resulted in the little man also getting a great gob of ECHO gel all over his face and hair. At first I was excited thinking that maybe the gel would be a nice pomade type substance for Mr. LongHairs but alas it was not. We did get a nice faux hawk for a few minutes but then it was was just slimy and wet. Next time we'll try it with reclining gently in my lap. That's what used to work best when we were in the hospital.

After that we were back to the waiting room to stare at the giant fish tank for a little while longer before stripping down for our weigh in and chat with HunkyPants.

Simon weighed a whopping 8.93 kilos so they just rounded up to 9 Kilos!!! This just reaffirms what the GI doc said which is that we're doing great and can even slow our roll some with pushing the calories into him. No one wants a baby with a cardiac issue to be obese- that's not ideal.

Rosenfeld also said two things that just made my day. One: since Simon is doing so well why don't we push our visits back to just once a month AND let's not do lab work this visit either. Yay!! No poking! I know, I know, most of you out there are saying "but what about his BNP #? How can I go another month without knowing the new number?" Well, just imagine holding Simon down while they look over and over for a vein and then remember 366 (our last BNP) and be very very satisfied to wait for another 4 weeks. I am.

We then took our regular trip upstairs to the PICU and said hi to all our peeps. Everyone was so excited to see Simon. It seemed like folks were just as excited to not recognize him, notice me, and then realize that the fat happy smiling boy in my arms was in fact Mr. Shimmy. It was a joyous reunion all around. Even Dr Patel made a point of coming and sitting (really, he sat down and chilled for a while) when Simon was chatting with Dr Rosenfeld. (Simon was really chatting up a storm so I don't use that term lightly).

For the first time I got to witness Simon doing some hard core flirting. Dr. Patel came in and sat across from Simon and I diagonally. Simon would put his face into my neck and then lift it up and look directly at Dr Patel with a huge grin. He did this no less than five times. It was unmistakable and terribly cute.

Other than that, the day was simply lovely, as today has been. Simon smiles and laughs his way through most of the day and is now at one hour on for feeding with three hours off. We will be down to a 25-30 minute feed in a few more days and then we can really work with hunger and hopefully see a reduction in the upchucking. Since we contract every other day we can get some sort of sense of his vomiting baseline on those days when we don't contract and it's really not that bad.

Today however it was that bad. Not terrible but we had three projectile moments; one right into a towel which was great, one right onto Mommy and Simon resulting in a fabulous shower session (think Three Men & a Baby shower scene...anyone? Anyone?), and one last one with Mama on the back porch where I was nervous that Roxie would get a splinter in her tongue from how vigorously she was cleaning up for us. Tomorrow is a non-contracting day so let's hope for less clean up.

What follows are a series of photos from Simon's time with his Auntie Dre this evening. As of late Simon is really enjoying his time in front of the mirror. Let's just say that his Auntie Dre took it to another level.

Self love is important right?

It begins with a simple expression of love

An introduction

An example of how you greet someone that you love

Simon recognizing something good when he sees it

"Hey, you're not bad lookin', do you come here often?"

Simon getting a little fresh with himself

Simon not wanting to stop. (It's a little embarrasing how long he kept that up)

And that's all for tonight.

Love to all

laura

Working It Out

Life has been good and mellow. I (Jaime) had a pretty good work conference in Napa and was quite fortunate to win a raffle and got a free facial at the Spa! Guess it pays to work in Tobacco Control. Sort of :-)

Speaking of, the bills are starting to roll in after all the charges have been processed from Simon's extended spa visit in the ICU. Ouchie. There are a few we're going to contest, but it looks like we have over $1000 we now owe. Fun, with a 40% pay cut, insurance premium that is 4- 5 times what it was and one income. And...we're working it out (mostly thanks to the help of all our parents).

Simon has been a dreamboat lately. Super smiley, sleeping well, charming the pants off of just about everyone who crosses his path. We're really having a good time with him. Oh, and we have to slow our roll a little with pumping him full of oily formula because he's now 10th percentile in height and 25th percentile in weight! The GI doc said if we keep going on this trajectory soon he'll be 90th percentile weight which isn't ideal for a cardiac baby :-)

Laura and I have been having an interesting time lately processing conflicts that have come up around Simon's care. Mostly that I keep screwing up his meds and feeds and it's really, really frustrating for Laura. For those of you who know us know that we really pretty much NEVER fight. We're both very easy going and most things we consider "small stuff" and let it go. This whole critically ill kid with meds and feeds and monitored weight gain is completely new territory.

We've sort of done a personality switch on some stuff. I used to be a total control freak, things had to be just so, etc and Laura was the really laid back one who just rolled with whatever was happening. As Laura has become almost solely responsible for Simon's care, she's become more like the old me, really out of necessity. The meds do have to be "just so". The timing of his feeds really is important so he can get breaks and not puke his little guts out as much.

And my response to the seriousness of all this is to go in the opposite direction and minimize things. It's like if I'm sort of loose and freewheeling with his care I can pretend like he's a normal baby. "So his meds are off by 0.2 mL. Whatever! It's not really that big a deal. Okay, so his pump gets turned on 30 minutes later. Babies don't eat on a schedule set by a clock." But he's not a normal baby and those things do matter. When Laura gets annoyed with me, I do something uncharactaristic and get defensive. It's all so weird to suddenly start having fights almost 7 years into a very smooth relationship.

And...despite all this, we're talking it all out and still doing well. I have to remember that for us it feels like a lot of conflict but really, we're freakishly peaceful :-)

Also, so bizarre that the babies from our birth class are all having their first birthdays! It can't believe it's been a year. Holy crap. We're still working on the party...

Here are some cute pics from the last few days:

Hello cuteness

Simon, looking like a big lug in his big boy clothes

Chilling with his Auntie Winter visiting from NYC