Simon is Home!

We got discharged this morning at about 9:30 a.m . They wanted to get us the heck out of there and we were not about to argue.

We had a little drama last night with Simon and Carol saved the day. We left at about 7ish when he fell asleep and at about 9 pm Carol called us b/c Simon had been awake for about an hour, crying and was freaking out so much that his oxygen saturation was starting to get low. They gave him Morphine and he was still a crazy beast. By the time we got there he had finally fallen asleep, fortunately.

Carol said later that when respiratory therapist came by she begged them not to put a nasal cannula on him because Cardiology would be unlikely to discharge him the next day if they did. We just did some oxygen from a face mask placed next to him and he was great. I can't say enough for the nurses. They do so much for families and for kids. Carol knew how important it was for us all to get out of the hospital and fought for him to have appropriate medical care that would also protect our options for discharge the next day. We love Carol!!!

Before:

After:

You can see his new G-Tube (we call it the Button) in the middle of his belly. Crazy, right? They also fixed his herniated belly button while they were in there. We're bargain shoppers, what can we say?

Dance Party in the Annex

After a rough first half of the day (Simon was pissed and in pain after his local anesthetic wore off), we enjoyed a long nap from Simon, a walk around the hospital and then, after Laura left, a Salsa dance party at the bed next door.

There is an amazing 13 year old girl next to us who survived what should have been a fatal car accident. She's got her front teeth knocked out and a monster scar across her head and her face, a tracheotomy, the list goes on. Nurses say from the moment she woke up, she's been a fire cracker. Evidently even when she couldn't even open her eyes b/c her face was so swollen, she was cracking jokes and chatting with everyone and has a great attitude.

She's originally from El Salvador and still learning English but she and Laura had a great talk today about their accidents. Laura talked to her for a long time about it being okay to cry about the accident, now is the time to really feel all the feelings and that she's really safe here- everyone here understands the magnitude of what happened. I think it was great for our new friend to talk to someone else who has survived that kind of trauma.

Then, tonight Carol, our primary PM nurse, decided that it was time for a little physical therapy for her, in the form of a dancing. We used our iPod and speakers and me, our neighbor and 4 nurses danced our little hearts out right here in the Annex for 4 songs. It was AWESOME.

Simon slept through the whole thing which was also awesome.

I'm staying over in case Simon has a rough night. My mom stayed over last night (god bless her) and they both slept pretty much the whole night. I'm hopeful but who knows.

Until tomorrow...

Simon is out of surgery and looking good!

Pissed and sounds like a baby pteradactyl and has a funny looking button in his belly, but came through the anesthesia with flying colors.

Laura just said to Simon, "I know it hurts. I actually really do know it hurts!" Ahhhhh the Mother-Son bonding of abdominal surgery 1 week apart. How sweet.

Phew. Huge relief to have this done. He's going to be very grumpy for a few days, but hopefully we can start him eating soon.

Okay, a weekend in the hospital and then hopefully home Monday.

We also got a gorgeous quilt from the recovery room nurse- volunteers make blankets for long term kids. I think Simon definitely qualifies!

Much love
More later

Just a quickie

Too much to write about since Wednesday when we were admitted to the ICU.
Surgery is tomorrow (Fri) at 8:30am. There is risk involved but we're hoping and expecting smooth sailing.
Please send your love light to Mr Shimmy. Imagining him bathed in all your good thoughts helps us to rest tonight. Thank you.
More tomorrow after we're through it.

Love to all

Home at Last!

Laura just got home. Will write more later, including her hilarious adventures last night. It just got worse after I left...

Yea for family reunited! Boo for 2 hospitals in one week!

Out of the Frying Pan...

into the fire?

Laura is doing really well. She had a bunch of visitors today and Simon got some good social time with my mom in the morning and friends who watched him this afternoon so I could go see her.

Somehow Laura ended up in the stroke unit and her room had 3 ladies, not one a day under 85, who had all had strokes. Two were very quiet. One, not so much.

The first night, a nurse tried to draw blood and Laura heard the lady slap the nurse across the face. Last night, she was up all night, calling out for different people.

This is a BIG problem. For those of you who knew Laura when she was in the hospital for her motorcycle accident, think Violet. For those of you who did not know Laura then, or who do not know the story...here goes.

In 1996, Laura almost died in a motorcycle accident when she was cut off by a truck towing a small trailer. She was run over by the trailer and then a Kia Sephia stopped *on top* of her. In a moment rarely seen outside movies, nearby drivers got out of their cars and lifted the small SUV off of her. By that point, an ambulance was there, which was really, really important because her femoral artery was severed and the car was actually holding enough pressure that she didn't bleed out right there. She was rushed to SF General where a visiting surgeon from Amsterdam used an experimental technique he was perfecting that involved something like shooting foam into the vessel to temporarily stop the bleeding so it could be fixed. Yea! Femoral artery repaired. No bleeding out on 101!

But, um, she also had a crushed pelvis, torn aorta, punctured lung, multiple rib fractures, one broken clavicle and one dislocated one. No head injuries though, miraculously. (That came about 10 years later.)

They weren't even expecting her to leave the hospital for at least 6 weeks, but Tough-As-Nails-Fitch defied expectations (sense a theme in this bloodline?) and was only in the hospital for 3 weeks and rehab for 3 weeks. However, in those 3 weeks, she made a very special friend.

Violet.

Violet was her totally demented roommate in the hospital. The first night, Laura's Dad, being the very chummy fellow that he is, introduced himself and his daughter, "Laura", explaining that they would be roommates. Violet didn't seem to hear him and everyone settled down.

Until that night.

The *only* name Violet could remember in her entire life now, was "Laura".

And Violet was thirsty.

VERY thirsty.

All night long this is is what my poor wife heard (think Southern drawl):

"Laaauuuuuurrrrrraaaa! Can I get a drink a' waaaaaauuutah?"
"Laaaaauuuuurrrrraaaa! I'm so very thirsty"
"Well, theeen can I get a swizzle stick, ?"

(Laura did a little research later, wondering what the hell a swizzle was and how it would help thirst. Evidently it's a rod of ice frozen like a stick and used to stir drinks).

After a few nights of this, Laura finally gets moved. She ends up in an empty semi-private room, and is so excited to finally be getting some sleep. Her curtain is drawn, she's just drifting off when they wheel in her roommate. She's nervous after her last experience, but the new person is quiet.

Then, just as she is falling asleep, she hears "Laaaaaaaaaaaaauuuuuuuuuuuuurrrrrrrrrrrrrrrraaaaaaaaaaaaaaaa".

Yup. Violet is her roommate. Again.

Which leads me to this evening. The charge nurse asks if Laura wants to move, with a subtle nod and grimace at our noisy neighbor. She gives us the option of checking out the new potential roommate. We're warned that she's on her phone a lot, but evidently sleeps at night. Laura goes to introduce herself and see if they can agree on a quiet night. Sounds like all systems are go. We schlep her stuff and get her settled in and then...it starts.

The lady is completely off her rocker. She is cursing and muttering and saying "I never get a goddamn night to myself" and goes on like this for almost the entire next hour. She comes around the corner and starts ranting about how she can't get anything here, the food is terrible, etc, etc and is so completely off that when I start talking to Laura, obviously trying to tune her out, she just keeps going. She finally stops, goes back to her bed and Laura and I look at each other in horror. I just say one word to her.

Violet.

I think it's gonna be a looooong night for my dear wife. You know it's bad when you get better sleep at home with a 9 month old baby.

p.s. We think she's getting to come home tomorrow!

She's Back!

Laura got back to her bed about an hour ago and looks good. She has a drain and an IV but totally looks like herself and her pain seems pretty well under control. I feel such a sense of relief that the scariest part is over (I hope!). I hope to sleep better tonight, for sure, although I feel terrible for leaving her alone at night :-(

Laura's sister, Jen, had the best analogy yesterday. She said, "if this were a movie, this is part where people would just get up and walk out because the plot is so absurd". I'd have to agree. Can I get my money back?

Great Analogy

This is a great analogy someone from our Cardiomyopathy listserv just posted. It really sums up our feelings about what is happening with Simon (and to some extent these days, Laura!).

Welcome To Holland
copyright 1987, by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Out of Surgery

I just got a call from the surgeon about 20 minutes ago saying that they were done with the surgery. She said the surgery was a bit difficult because her gall bladder was so inflamed and that she was going to have a drain which means she will be here for an extra night or 2 (so probably going home Sunday.

I made sure to ask if they were still able to do it laparoscopically and she said yes. I would have hugged her if we were in person, because the recovery for non-laparoscopic gall bladder removal is 4-6 weeks instead of 10 days. Uh...big, big difference.

I'm waiting for Laura to get moved from the recovery room to her regular room so I can see her. My Mom is with Simon and is staying over again tonight to take care of him. It's awesome- she's been trained on all his meds, she can work the pump like a pro and she even bought him his first pair of big boy shoes today :-)

Laura and I were talking earlier about how freaking blessed we are. Sometimes it's mindboggling, even with all this crappy medical stuff. We have 6 parents that support us in so many different ways, we have incredible friends and extended family who keep stepping up to the plate, we have had really good experiences with our various hospital and medical teams and we have a beautiful, clever, sweet baby that charms the pants off of everyone he meets.

It could definitely be worse. Okay, so it could definitely be better, but it could sure be worse.

Getting a late start

Our friend Sonya was at the hospital do to a visit shift and just called and told me that Laura is evidently JUST going into surgery. I left at 1 pm when they took her for pre-op and have been on pins and needles and freaking out that something happened since the nurse said "she's still in surgery" when I called 20 minutes ago.

More soon!

Update on Laura

Laura is scheduled for surgery for 1 pm today. Yea! She's looking good- very stony on Morphine, but good.

This morning (Shimmy had another great night, thank god) I will go to the hospital to visit Laura, go to a work meeting, go to Children's where my Mom will meet me with Simon and have a consult with the anaesthesiologist for Simon's surgery next week and then go to Alta Bates to be with Laura before HER surgery.

Whose life is this???

More later...

The Good, The Bad and the Ugly

Okay...let's start with the bad because the good is kinda funny after that. At 3 am last night, Laura's gall bladder pain got so bad we called our friend Dre to take her to the ER. They admitted her, gave her all sorts of good drugs and will be talking to her today about when we might take the damn thing out. She sounds good- mellow for sure (thank you Morphine!) and mostly just wants to get the frickin thing over with.

The good.

Simon slept through the WHOLE NIGHT. That's right. From 7:45 pm to 7:45 am with only a whimper at 5 am b/c of a poopy diaper and he slept through the diaper change. Did we get to enjoy this momentous event? No. I was awake from 2:30- 5:30 am. Damn it.

The ugly...there's no ugly. It just made for a good title :-)

Actually, here are cute pictures from our Calistoga trip to make up for scaring you about ugly:

Simon, swimming with his Muti Skeeter

Feelin' nice and full after a burger, fries and a shake at Taylor's Refresher (kidding!) I'm taking today off and my Mom will be covering for Simon tomorrow so I'll be back at work. My Mom is going to have fun getting the baby and all his gear out the door and in the car as has an anesthesiologist appt tomorrow to talk about HIS surgery.

I seriously couldn't make this crap up.

Delightful Birthday Weekend

We had a very sweet Saturday in the mineral pools at the Calistoga spa for my birthday. I had about 15 friends come up to celebrate with a very mellow day lounging in warm water, eating fancy bread and cheese and then going to Taylor's Refresher on the way home for yummy burgers, fries and shakes.

Simon loved being in the water. He did not love staying in a hotel so much. He has had 3 crappy nights sleep with last night taking the prize. He woke up every hour from 8-11 and then about every 15 minutes from 11- 4 am and finally let us sleep a chunk until 5ish.

Not sure if he's teething, growing or just torturing us. We ended up putting him in the bed so we wouldn't have to keep getting up. He wakes up with a screechy cry and is flailing all over the place. His right leg we have named "Devil leg". If he is lying down, awake, it swings in circles, wagging around, thumping anything in its path (which last night included me so at one point I ended up with my head at the end of the bed). His left leg he kept wanting to pull up to his ear, as it was in utero. Cute, annoying little baby. Oh yeah, and Laura's gall bladder started acting up again, so we were managing the fussy baby with her blitzed out on pain meds. We started laughing about the whole thing at about 4 am.

Hope we get some sleep tonight!

Update for ShimmyLa

So we're 24 hours into not feeding Simon and he's not eaten anything by mouth. I can't say that I'm not surprised although I can say that I'm terribly disappointed. I didn't even know how much I was holding on to the idea of him getting hungry like he did with his last bacterial infection and drinking like a rock star. He is for sure still my little rock star and I am also clearly not nearly as close to being Buddha as I thought. I so wanted Simon to clear this last hurdle of looking and acting completely healthy.

I can handle that his Echo still shows him to be a very sick boy. I get that. I'm not forgetting it. I just love getting to live in the present with him when it's so lovely moment to moment. He is hysterical with his tongue, affectionate with his hugs and the laying down of the head on my chest, his new sounds crack me up, and his wiggly body is just yum yum yummy. That is where I live.

So this was the last hurdle in getting to live in the moment with him and it probably made it worse that I now have lots of images of friends babies (a month younger or older than Simon) taking to solids and sippy cups so beautifully)

Breathing in, breathing out. Breathing in, breathing out.

Yeah, doesn't help. I just wanted him to eat by mouth, continue to gain weight, cancel the G-Tube surgery, and have his sweet face back. Yesterday.

I'm ok. It's not happening today. It's probably not happening tomorrow and most likely we are moving forward with surgery scheduled for January 23rd.

In fact we are moving forward with a more conservative surgery approach than previously expected but one that I think is in Shimmy's best interests.

So HunkyPants called me this morning and let me know that he had conferred with Dr Rosenthal down at Stanford as well as Dr Su who would be performing the surgery and they think this is the best plan:

Have Simon be admitted on the Wednesday before his surgery, stop taking his Cumiden (blood thinner) and Carvedilol (heart med) and start him on Milrinone and Heparin again. Have the Surgery on Friday and then wean off those two drugs again for two days and be out by Monday. So....6 days back in the ICU. No deep line just a simple IV and all the nurses (and Dr Patel who apparently asks Rosenfeld about Simon a fair amount) can get their fix.

I can't deny that I'm having some reaction to going back in for that long but exactly what it is, is not simple. Terrified that we will once again be around very sick germs that love to make my son bacterimic, frustrated that I don't get to control his basic environment again, happy to get to see all of our lovely folk and have them see Simon, and just freaked out that we're going back to the Hospital.

AND how the fuck is it all going to work?! We have a routine at home now. We have wiggle room- literally.

Should be interesting. So...that's the plan right now.

Simon had a great day though. He was happy and active. There was some fussiness in there but he never really got to the "I'm frikkin' hungry mom and I don't know what to do about it" state. We even pushed his bedtime a little with an exceptional dinner at A Cote to celebrate Jaime's birthday, my mom's birthday, and Ed's birthday. Also yum yum yummy (special shout out to Lainie the manager there who baked us a special dessert for celebrating). Holy Chocolate Cake. We took most of it home so come on over if you want a chocolate experience like no other.

What should we order Mama?

Sweet right?

As for me, Gallbladder infection under control. Still not feeling 100% but 75% is better than last week. We're putting off surgery until the infection is long gone, at least a month, and then bye bye Gallbladder. I asked my surgeon if I could at least keep the stone to make a rattle for Simon. Negative. Pooper.

I think that's all for now. I'm a little hopped up on Chocolate and need to watch Top Chef to come down. Simon was so tired that we just put him to sleep in his dinner outfit- apologies to Jaime in regards to the late night diaper change.

Love to all

Laura

Uncommon Baby

Sorry to leave everyone hanging- we have Laura's family in town and it was my birthday yesterday (it was great!) and we just didn't get a chance to blog.

Laura has a consult tomorrow with the surgeon re: removing her gall bladder. Her infection seems to be getting better because she's less uncomfortable so we probably have some time until she needs to get it out.

Simon had a cardiology appointment today and Laura managed to get a consult with the surgeon who would do his G-tube. The surgeon had a little come to Jesus with Laura about the seriousness of the surgery. Here's Laura:

Hi all

Sorry to be lax on the blogging as of late but it's not my fault. Talk to my Gallbladder.

Shimmy and I arrived at CHO at 9:50 ready for our appointment. While waiting for our first activity (the Echo) Simon was pretty happy and excited with his tongue sticking out in all kinds of directions. He also got to watch a full 10 minutes of animated dinosaurs on the fancy plasma TV in the waiting room and was loving it. He was amazingly relaxed through is echo and Sarah the tech let me know that really there was no obvious difference. (However, Dr Casey, who popped his head in to say Hi said "looks like there might be more of a wiggle there eh?")

We then headed back to cardiology and were almost immediately put in a room to wait for Howie (Aka HunkyPants/ Rosenfeld). We had to wait almost 20 minutes (what? Like he has other patients??) and Simon got weighed (18 pounds 3.5 ounces my friends!!) and then proceeded to go crazy with excitement at getting to play with those eye and ear checker thinger magigggers. He was cackling up a storm, rolling his tushy off, smacking his lips with a kissy sound, and generally having more fun than any cardiac patient ever should at an appointment. Luckily Howie got to witness the last little bit of it (he found it terribly endearing that Simon was blowing him kisses and I didn't have the heart to tell him that it wasn't really a kiss specific to him) before we went for the 'Oww' part of our visit.

But before I get to that, let me tell you the most exciting part of our time with HunkyPants. He said that Simon was looking so good and that his weight was firmly in line with his height so.....we could start playing with his feeds and see if we could get the little man hungry!!! Yay!!

So tonight we are just giving him pedialyte and seeing if he'll wake up hungry enough to suck down some formula, nibble some avocado, or slurp some cereal. I'm a little nervous about it. Isn't that crazy?! I give my son several different medications that could potentially harm him if not given correctly and I'm worried about trying to give him food. Well, it has been months (except those weird days after his last bacterial infection) since he's taken anything by mouth AND it feels like the last frontier in terms of getting Simon deeper into "normal baby" life. I get why I'm feeling like it's so charged and it seems weird to me.

On to Lab draws. They suck and I hate holding him while the very skilled nurses try and try to get blood from my small veined son. This time only took two tries and the most amazing happened during the actual blood draw.

Shimmy was screaming his head off, tears falling down his sweet little face landing on my hand that is holding his small body still, while Trudy filled the numerous vials for his numerous tests. At one point, with the needle still in, Simon's attention was caught by the movement of the 2nd nurse changing the blood filled vials for empty ones. For a solid 4-5 seconds Simon stopped crying and simply watched her move the deep wine colored vials around. It was incredible.

I told him "yeah, it's ok to be distracted and really once the needle is in, it doesn't really hurt, it's the going in that hurts." At that point Trudy had to move the rubber band around his arm and the wailing and tears started up again, with good reason I think. But, it was an incredible moment of Simon being aware of what he was actually feeling and not just riding the wave of what had transpired. Very cool in my mind. Again, his bounceback was almost immediate once we were done and he almost smiled at the nurses as we waved goodbye and thanked them for the most unpleasant job that they do really well.

We then headed across the street to outpatient services to meet with Dr Su who will most likely perform Shimmy's G-tube placement surgery. While we were waiting to meet with her (it was an impromptu consult that she agreed to over the phone- she was on call and not in her office) Simon fell asleep and I covered him up in the stroller with a blanket. She came in and we started starting quietly as to keep the little man asleep. It was already 1pm and he was completely off his rocker with exhaustion.

Dr Su started in right away with some very clear concerns. She said that she'd talked to Dr Gleghorn and Dr Rosenfeld and while she heard from them that they thought Simon was a fine candidate for such a surgery she "really didn't want to do it."

She went on saying that she'd seen his Echo and remembered him from the ICU (she was the surgeon to take out his Broviac line when it was infected) and was very worried about how sick his heart was. She went on to say that any surgery right now given that was a serious risk and that the worst case scenario was that being put under anesthesia could kill him.

Words like that make my heart freeze and feel leaden in my chest. It wasn't anything that I didn't know or that Jaime and I have talked about but she was no joke and shooting straight from the hip. She went on to say "Dr Gleghorn and Rosenfeld told me that they don't think it such a big risk and that really I needed to see him and meet with you but I have to tell you what I think." On she went, "They both told me that I shouldn't put so much on the Echo since nobody thought Simon would be around this long especially after you both opted to not go the transplant route but here he his and not only here he is but he's doing so well...."

(This came up more than once in our conversation- I don't know if I hate hearing that or love it).

At this point Simon started to wake up and start fussing. I removed the blanket covering him and picked him up from the stroller into my arms. "Oh my, he looks good!" were the first things out of her mouth when she actually saw him. "He's gotten so much bigger and his cheeks are so big and full of color." She went on and on cooing in his general direction (you gotta remember the last time she saw him he was bacterimic and almost buying that farm that he's been toying with purchasing for over 5 months). She said that given how he looks and acts, we could move forward with meeting with a cardiac anesthesiologist and scheduling the surgery but with a couple of weeks of seeing if we could get Shimmy eating by mouth that hopefully we might not even need to put in a G-tube.

The little man works his magic again!!

Later in the evening Dr Gleghorn called to check in on the progress of scheduling the surgery and when I mentioned the whole 'maybe not needing it if we can get him eating' thing she said, "that would be uncommon for a patient to be able to get back to eating." I said, "well, he is an uncommon baby" to which she replied, "well, yes, given his history, he certainly is".

Like I said before, it's both wonderful and hard to hear that. Especially coming from medical folks that really know what they're talking about. Simon is so alive right now, in his body, in his energy output, in his wiggly tongue AND he is not that far from being just the opposite. His heart, held so carefully in his beautiful strong little body is still very, very sick. It's hard to reconcile his amazingly strong legs and arms, head and neck, great grasping hands and curling toes with the idea of a stretched, weak, inconsistent but so very essential heart muscle.

He is an amazing being that keeps everybody around him so viscerally holding the notion of balance. In every moment there is light and dark, sweet and sour, joyful and sorrowful. I love him so fiercely for that and so many other things.

Today's highlight was the teething biscuit. Check it out:

Love to all

laura

Photos from the last few days

Lovin' the family visits

Yes, I'm doing yet another dental exam on PopPop

Ooops, sorry mom. I didn't mean to throw up on your chin. But hey, that's better than in your mouth right? Count your blessings woman!

I love me some cousins

Oh for cryin' out loud, are we back to this hair style?!

Dim Sum is Grrrreat!

Oooooh Scallion Pancake

Hey this chopstick isn't bad either


I'm french and I stick out my tongue at you


Hey is our table ready yet?

Simon seems to be thriving. Cardiologist appointment on Tuesday. We'll update you of course.

Love to all

Laura sure has a lot of gall...

in her gall bladder that's infected and hanging with a gall stone. Seriously. Today Laura was diagnosed with an infected gallbladder and gallstone and has a surgery consult on Monday. Uh huh. That's right. Laura probably needs surgery. Next week.

For cryin' out loud.

I started laughing hysterically tonight when the doctor called back after getting the ultrasound results. Here's what Laura's end of the conversation sounded like:

"You want me to go to the ER tonight and be ADMITTED?"

*Pause*

"Uh huh"

*Pause*

"You're worried about it rupturing?"

*Pause*

"Okay but I'd really rather not"

A long pause while she listened

"Okay, then I'll do the surgery consult Monday and if I'm in severe pain, we'll go right to the ER".

We then filled her prescription for 2 antibiotics and pain meds. The vicodin she had taken a few days ago didn't touch it so they gave her something stronger.

Laura is not writing because we don't want to offend your delicate eyes with the expletives that might come out.

Simon, by the way, is awesome and is now over 18 pounds and can barely see his feet over his huge gut.

After his G-tube surgery, he and Laura can have matching scars on their bellies.

How sweet.

Good 1st Day of 2009

I got to be the parent I planned to be today. It was awesome. Laura went to go visit her sister who is visiting and Simon and I were on our own. He woke up and I make the snap decision to walk about a mile to our friend's house to go to their brunch. I grabbed him, the stroller, the pump and food and we were off. It was brilliant. We're settling into a new normal, in a lot of ways.

On another front, Laura has been having really intense stomach cramping, only at night, that sometimes lasts ALL NIGHT, meaning she gets no sleep. This is a problem. She's going to the doctor on Friday to rule out something physiological and then we're going to figure out how to tackle the stress that is most likely causing it.

Tonight I was saying that I wonder if now that things have settled down and we're not in constant crisis mode if her body is trying to re-create the cortisol/adrenaline experience. That's often what happens to me- I'm awesome in the middle of whatever hell is breaking loose but when it's over, I'm a mess. Seems like so far I'm doing okay, but I also bear so much less of the brunt of all this. It's been very sweet to have lots of time with Simon while Laura is out of commission, but it is definitely a lot of work. I can only imagine how much more so if he's symptomatic and/or there are places to go and things to do.

Simon is so much fun right now. He really hardly ever cries- when waking up and sometimes if something is uncomfortable and other than that, hardly ever. What a change from the inconsolable 4 month old who went into the hospital. He's got personality but we don't have to chase him or worry about baby proofing yet. Soon. That's coming soon. He's starting to look like he's going to crawl and he's getting really wiggly and wants to stand a lot. I think he's going to be a mover.

This is so much harder and so much more fun than I thought it would be. Ultimate parenting cliche, right? It's true though. I just keep saying to Laura, "I really LIKE Simon." He's a very cool little guy with a ton of personality...

Laura is trying to sleep through some stomach cramps and I'm back to obessively trolling Facebook for people I know. I've created a monster by getting on Facebook. Seriously.

Life on the Coast

We are having such a sweet time in Gualala. Simon is loving it up here and our easy schedule of beach walks, food, movies and lots of laying around. And it's really scary to be far from the hospital. Simon has been a little more symptomatic the past couple of days and I'm terrified and furious. He's been panting a little and today started to break a little sweat. I paged Cardiology and the doc on call basically said it's normal for him to pant while he's active because his body is trying to compensate for his dimished cardiac output. If he's panting all the time, then that's a different story i.e. not so good. For right now it seems to be just with activity. We're planning to stay until Monday but I'm really steeling myself to pack up in a hurry and get the hell out of Dodge.


We've DVR'd all the Harry Potter movies and have been watching them lately, in chunks. I had a funny thought this morning that Simon is like Harry Potter. He survived an attempt on his life in early August and now the evil spirits keep trying to get him but he keeps battling them off. It feels like Dementors are always swirling around like the the Turkey Vultures we see up here on the coast, though. I hate it. I hate the spector of death always at his neck.


One of my mom's friends, a Yoruba Priestess, essentially said the information she's getting about him is that he's going to make it for now but that every 7 years he's going to have to decide whether or not to stay here. I so wish I could just wholeheartedly believe her and chill for 7 years. I could put up with so much hell cheerfully if I knew he wasn't going to die from his symptoms for at least 7 years. I could battle for his life again if I knew to steel myself but what feels like the daily assault is sometimes so exhausting.


(3 days later)

It looks like Simon is having a little growth spurt! He's been very active, very cute, liking tummy time and in fact fell asleep on his belly the other day. Laura heard a "gallop" in his heartbeat a few days ago and we both freaked out a little. She called Cardiology and they said that actually it might be a sign that his heart muscle is thickening, which we want, and not to be worried to much and just keep a close eye on him. We would really, really love that...

Shimmy in his fancy Xmas outfit

Look what we got for Xmas!

Sweet shot of the kids

Shimmy's first Christmas tree

Holiday...celebrate

Simon seems to be enjoying the holidays so far. He has now had his first Solstice, his first First Night of Hanukkah (he LOVED it) and his first early Xmas with my Dad and Stepmom. On Saturday, my Dad and Nola came over for a pre-Christmas/Hanukkah get together. We had lunch and opened presents and Simon was so happy and content and playing for the 2 or so hours. He got some very cute things :-)

Sunday we went to a Latke Party with about 20 people. He was a little fussy and seemed a little overwhelmed but when it was time to light the menorah and sing, Simon stood stock still in my lap, eyes wide as saucers and watched everyone. Then the men started doing the hora right in front of us and he watched with big eyes as I bounced him in my lap to the music. As soon as the festivities were over and things returned to regular party hubbub, he was done.

We stopped by the hospital today to drop off cookies for the staff there and had a really nice reunion. The annex was closed due to low admissions, so we got to visit bed 22. I didn't feel even the slightest twinge of icky feelings there. As Laura said, "that's where he started to heal". Bed 4 in the regular ICU is a whole other story. Ugh.

We had another sweet evening tonight with some family as you can see:

Here's my latest dream life that Laura cooked up for me...I work 4 days a week at my awesome new day job, bake up a storm on Fridays and sell my goodies at the Farmer's Market around the street on Saturdays. I've been baking lately and I forgot how much I missed it. Someday I'll find a way to do more of it...in the meantime I'll enjoy the holidays as an excuse to fatten everyone up :-)

We're off to Gualala tomorrow (up the Mendocino coast) to hang with my Mom and Stepdad in their cabin. We're looking forward to 4-5 days of eating, watching movies, hot tubbing, beach and general chillness. Ahhhhh.....

Medical Update and more

Got a call from HunkyPants this morning. All of Simon's tests came back normal with his BNP going lower.

Yay!!

We went from 1457 from two weeks ago down to 1149 this past week. I'm loving it. Shimmy's BNP can go as slowly as it wants so long as it keeps going down. Very very very pleased about that. We are also moving forward with a Gtube placement sometime early in the new year. I need to double check but I'm pretty sure that it's an in-patient procedure and means at least an overnight in the hospital, most likely the ICU annex- won't they all be thrilled.

I won't pretend that I'm not having a reaction about that, going back there. At least it's for something that we are choosing and will ultimately and hopefully be a step forward in healing. It's still a surgery though and those always come with risks. The cardiologist and the GI specialist have both said that he's in good condition for the procedure AND that doesn't mean that there aren't any risks. He's going to be "under" for almost an hour and that's hard on his little body and systems.

The other bit of good news is that it also looks like we could do it in one surgery instead of two short ones spread out over 3 months and go right to the button. The first picture is the button itself (the little balloon at the bottom is what lies underneath the skin and keeps it in place). The second picture is what it looks like once it's placed. Not too bad right? Supposedly after it's had some time to heal and settle it shouldn't preclude Shimmy from doing anything including bath and tummy time. Sweet.

I am still a little freaked out about him 'going under'.

In other news...

We are figuring this home thing out slowly. I'm getting some good cries in. Shimmy is getting some social time in. We are getting out. We are staying warm. It's all coming together.

And it's frikkin' hard. I am Simon's ICU, his monitor, his nurse. It feels like a lot when I think about it all, or sometimes just around 4pm when I can look back at most of the day and see everything that I've done to keep him alive, gaining weight, comfortable, not to mention learning and growing like a regular baby should be. But the moment to moment isn't really hard at all (tiring, frustrating maybe, but I wouldn't say hard). So I clean up vomit a bit more than most moms, big deal. Watching Simon learn how to self soothe himself to sleep and really respond to a regular schedule is a delightful thing. And, I cannot wait to get his sweet face sans noodle back.

...

Just got off the phone with Children's Hospital and the initial word is that there is no surgical opening until Feb 2nd. I'm hoping that's not really the case but simply what the receptionist was saying given that she hadn't even gotten the referral yet. 6 more frikkin' weeks?!! Blech.

We had a lovely date with Baby Julian and his Big Daddy Tanner. And last night Shimmy got more facial hair time with two other big Daddies, Robert and Reid. That boy does love him some facial hair.

Here are Julian and Simon playing at holding handsNear.......FarHere is Simon realizing that Julian is still fresh faced where as Poppa Tanner has a Goatee

And then there's Robert's full on Beard

Which is even longer than Reid's. Simon, "Gee you remind me a little of my PopPop Bernie." Jaime's home now so it's family time. It's family time for 2.5 weeks!! Yeehaw.

Happy Happy to everyone.

Laura