'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

G-tubes, Grace & Generosity

G-Tubes

Two steps forward, One step back.

It's been a week and a half now since Simon's G-tube surgery and we're slowly getting back to a familiar rhythm. We're still working on sleeping and comfort but otherwise we're doing really well.

Simon's sleep has been just about the worst that it's ever been with him waking up every 1.5-2 hours and taking a lot longer to get back to sleep. This is very different from the pre-surgery boy who would usually only wake twice and be back asleep in 5-10 minutes. Both Jaime and I are starting to hurt a little but I have to remember that it's not nearly as much as the little man who's still working on getting used to having a 2 inch shaft sticking out from his stomach. It breaks my heart to have him wake up wailing and there be just about nothing we can do for him other than affirm how sucky things are in the moment and wait for the right second to see if something will distract him (blinking lights and a rapid, soft bounce seem to be our number one tricks right now). It also seems to be discomfort and newness versus real pain since distraction is possible and almost has an immediate response.


Still, it's quite exhausting. He's still a champion when it comes to putting himself to sleep and for that I am so thankful. He can amuse himself in bed for almost half an hour before gracefully falling asleep. It's just the waking that seems to be hard. One of our meds has been known to bring on night terrors. He just had surgery. He's a little baby, so new to all this. Who knows what it is.


He is getting better about being in his body though. It's still not fun for him to be picked up simply by placing your hands under his armpits or trunk. We still need to support his rump (any excuse to feel that sweet little tushi right?) but he seems to be getting better about that day by day. We even managed some tummy (really knees and arms) time and he was showing me how close he is to understanding crawling and how it all can work for him, getting to shiny things placed just out of reach (wicked mommy).


Really it's the sleep thing that kicking my own tush. I must get better about napping when he naps but it all seems hopeless. Stick with me while I kvetch for a second- Simon's first nap is around 8:30 and I'm not ready to go back to sleep just yet- that ones out. Nap II is midday and unfortunately almost always split in two with a wake up that usually requires either patting or picking up before going back to sleep. Nap III is late in the afternoon and if I sleep that late will I be able to fall asleep in time to get some Zzzz's before the first wake up at night. Plus there's the eating thing, emailing thing, and taking care of some business thing that I feel compelled to do. I just haven't been able to make it work and up until two weeks ago I wasn't feeling too worse for wear. I am feeling worse for wear friends. Tired. So very tired.

I know today a big part of it was the 4 hour hospital visit that we had. Neither Simon nor I was enjoying it although Simon perked up for his time with HunkyPants and showed off his magnificent 'pulling up to standing' strength. HunkyPants was duly impressed. However his echo, which is usually a chill ritual was not, blood draws were several pokes in the making, and we had to wait for almost 45 minutes for our post surgery check up (nobody's fault- we were a squeeze in appt to start with- bad idea with a baby, never will I do another squeeze in appt). It was good that we saw Dr Su though since it turns out that Shimmy has a mild infection from the stitches that were placed around the stoma (incision into the belly) site. So, 10 days of anti-biotics, but nothing major and she said it looks relatively good.. Oh wait, did I mention that the anti-biotics need to be given every 6 hours. Every 6 hours around the clock. So we started at 4pm. That means that we're on for 10pm, and 4am, and again at 10am. Um, what was that middle one? Yeah 4am. So on the off chance that Shimmy is not waking up then, we have to wake up and give him meds. Niiice.

It just doesn't end.

Grace.

It looks like the minor strengthening of the ejection and shortening fractions from the last echo were not necessarily reader error. Simon's EJ went from 31% to 36% and his SF went from 14-16% to 18%. Nothing major but a (baby) step in the right direction. I don't really know what it means or how I feel about it. I am a little numb right now from exhaustion (holding Simon while they try and draw blood over and over again may only take 15 minutes total but it feels like a million years slowed down to a crawl). It's a good thing I know but I can't quite take it in. It's kind of like being given a gift of a hundred dollars but you only get one penny a week (or every three when you go see the Cardiologist.) I know we're getting the hundred dollars it just doesn't quite feel like it. It's the slowest Ti Chi exercise ever. I know that grace is moving us along, we are so blessed, but it's hard.

So now we're on to eating, our next big hurdle. By the end of the week Simon will be back to his post surgery rate of 100 cc's and hour (for a 180 cc dose) and we will just continue contracting his feed hoping that we can get the little man hungry and play with food. He's been taking a few squirts from a sippy cup lately in the evenings and it's completely heartening (hah) to watch him taste and swallow.
Slow and steady is key here. So many cardiac babies develop strong oral aversions and I want to approach this next hurdle more like a long suspension bridge. Slow steps, leaning neither too far to the left or right, moving forward not back. I'm a taurus. I can do this. Shoot, it took me months to even get to the point of 'going steady' with Jaime. We can do this.

Generosity
Last and in no way least is a deep thank you. For all the support, all the meals dropped off, all the visits that come to us instead of vice versa, all the reaching out over and over. I don't really have words for the gratitude. I have a humble blush that threatens often to border on shame but it's too good and necessary right now. Plus, I know somewhere deep that Jaime and I have had a good part in building what we're now reaping.

It's here that I need to do a special shout out to the Grandparents. To Mamaw & Pappy E, G'Pa and Grandma, and MM and PopPop... Jaime, Simon and I, have a silent thank you streaming to you non-stop. For all the ways that you have shown up throughout this whole venture. With overnights in the ICU, brownies that always have nuts, songs sung, books read, blankets & bedding bought, naps shared, breaks given, sushi delivered, safe places to let down, skin on skin for the little man, wallets opened, and of course your unrelenting tsunami of love and support for all four of us (Roxie has been right there benefiting along with us bipeds). We are connected now in ways even beyond blood and marriage. It's generational and woven and also spans time. I'm not even sure I can explain it. I only know that our family is incredible and great (not the "superduper" kind of great but the larger than one person, grand canyon, magnificence kind of great. That's how I think of our family.
Thank you.
Love to all

Laura

Oh Loverboy!

So, Simon now knows how to butt heads AND make out. Laura has been working withhim on both and the fruits of her labor have finally paid off. What else could he possibly need to know to get through life?

Click here to see a video of his new talents

Simon goes for a Cardiology follow and a GI follow up tomorrow. So far the G-tube is working pretty well. He's definitely more interested in putting things in his mouth and even drank a few tiny sips from a sippy cup. I think we're going to have a LONG road ahead of us in terms of eating, but this is a great first start.

In other news, the estimate to fix the bumper from Laura's rearending? $2,500

The itemized cost of Laura's hospital stay? $80,000

I got one word for you. INSURANCE.

Can I get an amen?

Zoo!

We took Simon to the Oakland Zoo for his first time today with one of our favorite nurses, Kathy. He seemed to sort of enjoy it. He mostly liked the Squirrel Monkeys who were racing around.

He got his first lesson in the birds and the bees with the giant tortises (very slow and not very well aimed, I have to say).

He wasn't so sure about the goats in the petting zoo.

We're so excited to keep going and are really looking forward to the time when he gets excited about certain animals and really starts to watch them.

Until later...

Wait for it....

My son has Cardiomyopathy.
He spent 4 months in the ICU.
Nearly died twice from bacterial infections.
I had my Gallbladder removed last week.
Simon had G-tube surgery a few days ago.
(Not to mention the motorcycle and horse incidents)
Today, Simon, Roxie, and I got rear- ended on the Freeway!!! (nobody got hurt- although I'm am a little nervous about waking up tomorrow with a wicked neck or backache)
What the hell is going on?
Who or what gods/goddesses have we offended?!
What have I or we done in a past life that has me working some real crap out in this one?
I'm sorry but all I can think about right now is holding up my special finger to the universe and saying "what the fuck?!! Quit it!! Quit...it.
Really?!!


Really, we're all fine save for the rear bumper on the Corolla.
Fuck'n A though.
Really??!!
Oh yeah, and I got my period today.

Getting Back

We're home 48 hours now and it's another transition period like it was when we first arrived home. Not nearly as difficult a transition (4 days in the hospital versus 4 months) but still transition. Simon is getting more and more like his old self with each passing hour and it is simply a joy to have his whole face back. It's been 6 months seen we've seen that punum (face in Yiddish) and he looks like a different boy. My boy for sure but different.

He's definitely still in post surgery mode, waking up wailing from naps, wondering what the hell that feeling in his belly is, not wanting to be held close because of the pressure and discomfort it causes, and throwing up a little more as he acclimates.

I have to remember that I am a week and a half post surgery and still not feeling completely normal. He's just a few days away from it AND a baby with a heart condition.

We are just going to take it nice and slow for the next week or so. Both of us.

Last night when Simon had his 10pm wake up, he woke up hard and it took almost 20 minutes to get him back to sleep, I realized somewhere around minute 17 that I was in fact quite crispy. Simon needed to be bounced and oddly enough (read in sarcasm- remember I am post surgery too) that wasn't feeling great on my back. It took me way too long to agree to let Jaime be on duty and was in the unfortunate place of being ready to throw Simon at her and run out of the house.

Gotta get to that 'handoff' place earlier. It's hard though. I want so badly to be able to insta-soothe and when I can't the taurus in me digs in and just wants to stick it out and make it better for the little man. Clearly at my own expense sometimes and that's not so good.

You put the oxygen mask on yourself first and then put it on your little one. But please, that's just not the instinctual response.

So, we're inching, creeping back to what felt like a normal life before we went into the hospital on Wednesday-which sucked by the way.

Wednesday and Thursday were so hard. To once again be out of control of the basic things (noise, sleep, activity/mobility) was so much harder since we'd had a two month taste of what life could be like after our last Hospital stay. I felt my heart alternately breaking and raging. "This is not what is good for Simon" my head was screaming. He couldn't nap, he couldn't settle, we couldn't walk around, he got poked over and over (yes, once again they couldn't get a Picc line in). He had a board on his hand for his IV and then after surgery he had an additional one on his foot so he couldn't stand up (his new favorite activity).

Thursday was the worst until we moved from bed 18, right by the door, back to our old digs at #22. Huge Shout Out for Megan who as soon as she found out that #22 was being vacated, asked if we could move over. Another major shout for Carol who made sure that as soon as possible we got the ok to go out for a walk. Both things really helped both Simon and I turn a corner with our time in the PICU.

It's a complex mix of really enjoying the people, the support, the care for Simon, and hating, and I mean hating with just about every cell in my body, save for the rational few that can keep the big picture in mind, being back there, being out of control of Simon's moment to moment environment.

Blech.

But I will say this- That boy is loved there. In the first two hours we were there, I think no less than 40 people stopped by bay #18 to say "Hi". He is a ray of light. Between Dance parties and conversations about accidents I think that Simon being in the hospital is a tremendous gift. How fucked up is that? So many silver linings on our journey so far...I think that somehow all of this was meant to be and there will be magnificent outcomes for all of us. It makes me a little nauseous to re-read that given what it means for Simon and Jaime and I to go through all this but I also guess somewhere deep down I feel it to be true. Maybe I need to cut back on the vicodin (haven't taken any today so maybe I should ;-)

Ok, Simon's sleeping so that means that I should finish my lunch and get my self to nap as well.

Huge love to all

Laura

"I am soooo ready to be done with this."

These cheeks are good for storing nuts during the winter.Or, freeze dried peaches as the case may be.

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