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

In addition

I need to add a few things to our weekend update. Valentines day was pretty sweet with Simon sleeping until 8am. Jaime actually woke up before him! (not me- dead to the world)
We decided to go out for an early brunch to a place that we've never been but clearly should go on such a day. Venus in Berkeley. It was here that Simon showed us that he is clearly a Fitch-Jenett by going right for the good stuff. The little man was let loose with a pat of butter and probably ate at least 1/3 of it. That's a lot of butter for such a little man, especially one that doesn't really eat things by mouth. Of course we left the camera at home so you'll just have to take my word for it. Jaime and I figure that if he needs to eat high calorie foods why mess with the compound foods. We're just going right for the FAT.
Once the little man was down for the evening Jaime and I whipped up a most traditional Valentine's day dinner. Jaime splurged with our Whole Foods gift certificate and got 4 spectacular cheeses, some strawberries which later met their end in melted chocolate, and of course the quintessential Valentine's day Hor's Deuvre Fish sticks with Ketchup. Aaaah yes, laugh if you will but to our sleep deprived, still stressed out selves it was the best meal ever.
On Monday we'd had a great day planned with some friends from our birth class but alas cold and flu season is having it's way with their little one so with great sadness we scrapped our plans (another blog entry about that another time) and went for an early morning dog walk wondering what the day had in store.
Like a bolt of lightning it came to us. Palo Alto. We hadn't seen Mamaw D in days and it had been a lot longer since we'd seen the Aunties (Kris and Judy). With one phone call and a fast pack of some edibles we headed south.
What a lovely visit. Simon was simply thrilled to see every body and shared his love equally spending some great lap time with everybody. He was so frikkin' happy.
I know that the little man will have his fair share of man-time. Jaime and I are committed to it. AND he sure does love spending time with that triumvirate of wise and wonderful women. (yeah I used the word triumvirate).
Even the puppy Barron was feeling the love. It was a delightful visit. Simon was also absolutely entranced with the rain as we drove home, the sound of it against the roof of the car, the dripping down the window, the wind blowing things around....he's into all of it.

Love to all

LF

Weekend Update

Had a really nice 3 day weekend. We have now experienced what happens when the G-tube button gets pulled out. Less scary than expected. On Sunday Laura was getting Simon out of the car seat and the tube caught on the car seat. Simon let out a yelp, Laura yelled "Oh shit" and I tried to keep everyone calm. Simon was actually fine, Laura was a bit rattled and I ran to wash my hands to help. Really, Laura just pushed it back in. It was really quite simple. And gross. EW!

Simon has been crazy happy this weekend. We went out to eat a few times and Simon was THRIILLED. We need an Occupational Therapy fund to take Simon out to eat :-) Still no real eating but definitely playing with food.

He's been sleeping so much better. Like, from 7:30 pm to 7:30 am with *maybe* a squawk in the middle. Sometimes not even that. LOVING IT.

I (Jaime) had a hard couple of days over the weekend emotionally. Not sure what it's all about but some of it was just feeling old feelings I never got around to and some of it was feeling isolated socially.

I think now that the dust has settled, we both have a little more room for the hard feelings. I think I definitely stuffed some things while we had those crazy few weeks of Laura having her surgery and then Simon having his surgery. I was playing it uber cool, like "this is all no big deal and I'm not scared and it's really not that insane, so please, don't YOU freak out" when really I was terrified something horrible was going to happen to Laura. Also to Simon, but more so to Laura- going through her having to go into surgery, stressing about taking work off and taking care of Simon all just felt a little too much like when she had her head injury and I didn't have her there to help me through something really scary and hard. It sucked.

The "fake it 'till you make it" tactic is pretty effective for some things, but it's an old coping mechanism of that doesn't work very well. Not with things of this magnitude and not at this phase in my life. So...now trying to feel all the feelings I couldn't make room for in those few weeks. A word of advice- it's a lot harder to feel them later, so if you ever have to pick, just get it over with.

In really, really great and amazing news- friends of ours who have been trying to have a baby for over 5 years and who recently got approved as foster-adopt parents GOT A BABY! A very special newborn baby named Deshaun Moses now has a very, very loving home with two incredible Moms. YEA!!!!

Here's our little man being super cute with Auntie Alicia.

'Bout Time

I was due for it.

Yesterday I was planning on getting out between rain showers and taking both Simon and Roxie out for a much needed jaunt.

Before we heard back from a couple of folks that may or may not have been able to join us, Shimmy and I decided that a quick trip down around Lakeshore was in order. Simon had another good night, ergo Jaime did as well. LF here...not so much. The waking up for Simon's meds AND his few wake ups was taking it's toll and the moment the rain stopped and clouds broke I figured now was our chance and a short stroll was much needed.

Simon had a great 2 hour nap and was in high spirits, bib on, blanket for snuggly warmth, straps locked, and we're off. We make it down Rand, and halfway down Lakeshore when I realize that it's 12:02 and I'm going to be late starting Simon's pump feed. Not super late mind you, maybe 15 minutes tops. But, that's all it took. I lost it. I'm crying past the Starbucks, the Hallmark store, crossing the street, even past the Philly Cheese Steak restaurant. Good full body sobs shaking me. All I can think is, I want a healthy baby. No more syringes, no more pumps, no more medications or blood draws or being ruled by timing of those things. I want a healthy baby. I want Simon to be a healthy baby. I don't need this all erased but I want Simon to be all done. All done (I'm doing the sign language that goes along with saying that Simon knows so well.)

Of course all this came as Simon is hitting a new stride. His BNP is down. He's sleeping better. He's smiling and laughing more during the day.

AND it's still such a mind fuck that his heart is still in failure, that he takes several very potent medications throughout the day (and night). That as chubby and luscious his cheeks and thighs are, it's not because he's eating and enjoying new foods like most other 10 month olds.

Dammit. Just dammit.

15 minutes later we are home and hooking up to the pump. Simon's smile is melting my heart and we are laughing through our "Baby Can Read" video. I'm fine. back to the present moment as sweet as it is.

It's not very often that I get to be in touch with the larger picture. Hard but good.

As for today, we had a good visit with our pediatrician and the little man handled his shots pretty well along with the lancing of his two infected (but doing so much better) stitch sites around his G-tube. Trooper that boy is. 19.47 pounds at his last weigh in.

I love him.

laura

Simon and avocado reconnect

It just keeps getting better

Not quite on the same scale but still frikkin' awesome.................

Shimmy slept 7 hours straight last night!!!!

That meant that Jaime did too!

Mommy on duty had to get up at midnight and 4am to deliver meds but I'll take it!

It's a good day, a good day.

We're off to meet Jaime at her place of work when the little man wakes up from his morning nap. Got to show the little miracle man off.

Please please please let this be a long climb on this crazy roller coaster with no big dips in sight. AND thank you thank you thank you for all the sweetness as of late.

Two months till he's one year old!! That's crazy. We're thinking just a big old gathering in a park with some grills going and lots and lots of love. Stay tuned- an open invitation will most likely be posted here.

XOXOXOX LF

Think Titanic

I'm the King of the World!!

BNP history and results

So Simon's BNP results came back (via voicemail from HunkyPants).

Remember the BNP is the blood test that lets us know how dilated and distressed the heart is.

Simon's highest BNP recorded was 3600.

100 and lower is a healthy heart.

About 6 weeks ago Simon's BNP was 1100.

Since then he's had surgery and has had a rough road of recovery.

We went to our regular cardio appt this last Wednesday and had our regular work up.

He's just gotten back to sleeping well in the last three nights.

A BNP below 1000 is considered a good thing and a sign of recovery.

Shimmy's BNP..............................................
366!!!
Granted, HunkyPants did say that he "hoped it was real." We'll see next visit but HOT DAMN!!! I know it's real.

Celebrating. We are doing something right.

Simon knows there's something to celebrate too as he's been smiley and talking up a storm since we listened to the voicemail.

Feeling light in my heart. (again with heart analogies)

Love and light to all

LF

Some Photos

Here's some more recent photos of Mr Shimmy La

"I'm Bringing the Pompadour back!"

Simon meet millet. Millet meet Simon

"I hear it's also good for the complexion."


Hello Mr Expressive. Those eyes just melt you don't they?

"It's just soooooo good to be home!"

Simon's evening meds. (we're even missing one in the photo but we make up for it this week with the Anti-biotics on the far left).

????!!!!!

Another week further away from his surgery and Simon is getting back to his "old" self. We've had two nights in a row of relatively good sleep (of course now that I've put that out there we're more than likely gonna get screwed tonight).

He was a little napping F**ker today though with only one nap coming in at 3:30 pm instead of his regular three. We did have a sweet sweet time this morning though with a 5:30am "family" bed time with Shimmy and Roxie joining Jaime and I in the queen. We all dozed until 7:30!! It was lovely, except that it probably threw Simon off. Whatever. It was worth it.

We'll see if I feel that way tomorrow.

That's all for now.

XOLaura