Saturday, February 28, 2009

Simon Has Almost Made It To One!!!

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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

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 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.


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!

Thursday, February 26, 2009


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.

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.


From this morning's photo shoot with Mamaw D

Wednesday, February 25, 2009

A Penny More

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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


Monday, February 23, 2009

Working It Out

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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