Saturday, November 15, 2008

More wedding pics and a few thoughts

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Link to more wedding pics:

I also forgot to mention a dream I had Thursday night. In the dream Laura, Dre and I were in the bedroom with Simon. Dre was holding Simon and in the dream he was dying. His breathing was getting slower and slower and finally it stopped. I went into the living room to tell my Mom and Stepdad and then went back into the bedroom. He sputtered, took a deep breath and clear as day said "Spinning Fishes". I couldn't believe that he had spoken so clearly and ran intot the living room to tell my Mom. She said, "Jaimer, I think that means it's not his time and he plans to stay." The spinning fishes in the dream were a reference to the message the Yoruba Priestess, Tisch, got in her communication with Simon a few posts ago. I woke up feeling very excited.

Also, we realized we ended up in bed 7 when we were moved back into the ICU and left that bed on the 7th. Tisch had talked about the power of the # 7 for Simon. Again, who knows about any of this, but it was interesting...

Friday, November 14, 2008

Hee Hee Hee

Locations of visitors to this pageSimon had his first full on laughing session today. Laura and I were in the cafeteria with him and Laura made a funny, loud, high "Boop" noise, almost like an old computer. Simon grinned, stuck out his tongue and started to laugh. She started to combine it with Hide and Seek and he just laughed and laughed. We played this game for at least 20 minutes.

I've never seen Simon laugh. I've seen him chuckle. I've seen him smile (not much until this last week). I've heard him grunt/laugh/grimace when I've tried tickling him. But I've never seen him really laugh until tonight. It was glorious.

I had a long venting session tonight with Laura (poor thing's ears are probably bleeding). I had a 12 hour day yesterday and only saw Simon for a hour yesterday morning and then only for 30 minutes this morning before I had to go to work. I ranted about that a little. Then the hospital called tonight with something slightly concerning but really nothing major and I had a big adrenaline rush and got furious. We're so close to coming home and I will be SO pissed if something happens again.

I'm seriously at threshold. My mantra is "I'm doing the best I can. I'm doing the best I can. That's all I can do". I've been horrible to Laura the last 48 hours or so and feel terrible about it and then I go back to my mantra. Things have been a bit stressful at work. Back to the mantra. I can't do more than I can do. If it's not good enough, it's still all I can do. You can't get blood from a stone, especially when the stone's baby has been in the ICU for 15 weeks. Sometimes I can't believe *I'm* still alive. I can't believe that I'm happily married, even in the midst of all of this. This is the kind of stuff that breaks up marriages. We just have bumps here and there but we work it out quickly. It's pretty awesome.

Simon is turning out to be a really fun kid. I was afraid he'd be grumpy his whole life, but this last week has shown me what is possible. It's really exciting as his personality is emerging. Plus he's turning out to be such a dreamboat- I thought he was sort of scary looking for a while there when he was scary skinny and mad all the time :-)

We can't find out f****ing camera again so no pictures tonight. Here's for hoping the patron saint of cameras put it in a safe place that we're too wiped out to remember.

Hugs all around.


Thursday, November 13, 2008

By Sophie

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Sophie- my God Daughter and first cousin once removed wrote this for her "important person" essay at school. She's a very wise 12. Grab a hankie

My second cousin Simon Lev Fitch Jenett is one of the most important people in my life. Simon was born on April 9, 2008 at home to Laura, my godmother (and first cousin once removed) and her wife Jaime. This August, at the age four months, Simon’s breathing became shallow and rapid. His alarmed and anxious mothers took him to Children’s Hospital in Oakland where he was diagnosed with an enlarged heart. Now, Simon is 6 months old and continues to stay at Children’s Hospital in the ICU (intensive care unit).
Even with his condition, Simon is a very chipper baby. I usually visit him once a week, often on Sundays, and every time I enter the ICU he looks up and grins at me and his big blue eyes brighten. It’s almost like he’s trying to tell me that he is all right. Simon is also a very curious baby. When I hold him, he usually explores my face and sticks his fingers in my mouth. One time, my friend Ellie Portnoy and I went to go visit Simon and Ellie gave him her favorite bear. Laura was showing him the bear and Simon leaned forward and tried to bite its nose off and hug it.
Simon has a major influence on my life as well as my family’s. My extended family has come from everywhere to visit him, which allows us all to spend more time together, though many times when I see my family, everybody is really depressed. As a result of Simon’s illness, I think more about how lucky I am to be alive and healthy. He teaches me to see the good in everything, I mean, he’s the most cheerful baby I know, especially if you look at his current state. Also, Simon teaches me to develop patience and not always rush things, to just enjoy them. Over all, Simon teaches me to appreciate every moment of my life.

Wednesday, November 12, 2008

Quote of the Day

Margaret, one of our nurses from the first few days in the ICU was working in the Annex today. She's been a nurse here for a long time and has actually trained some of our other nurses. She loves hanging with Mr Shimmy (even though she wasn't his nurse today) and was commenting on how far he's come. She was saying how he really is a miracle boy with everything that he's gone through. She also knows some of what I've gone through (with motorcycles and horses) and came up with a most unique title. She called me a Miracle Whore.

Let it sink in for a minute.

Miracle Whore. I like it.
It was on par with Sister Bernice (the Hospital Chaplain) coming by the other day (after Prop 8 passed and Shimmy got sick again just before we were supposed to go home). She came over as Simon and I were hanging on the chaise lounge (our fold out chair) and just looked at me and said "Dammit! Dammit to Hell." No 'hello', no 'how are you guys doing today' just that.

In other news Simon has cut two teeth now. The bottom two have busted through and he's deep into teething. He's also been happier than he's ever been and is clearly feeling good. It's a joy to see. He's more smiley and laughing at all sorts of different things. He's also doing an incredible job of getting himself to sleep in his crib. Most of the time.

This is Simon about 10 minutes into being quiet in his bed, looking over at me with a "I'm not asleep yet, I'm cute, but not asleep" glance.

His peripheral IV has lasted yet another day and they're still talking about sending us home Monday or Tuesday if it makes it till Sunday. I'm not talking to Simon about it.

We've contracted his feeds another 1/2 an hour and so far he hasn't thrown up. Yeee haw. We're at 2.5 hours on and 1.5 off. Today we went for a walk during one of his off times and it was amazing to just have him in the sling and be completely wireless. AND tonight's weight....7.14 kilos! That's 15.7 pounds. Back on the weight train. Yay!!

Love to all of you for keeping up with us (for 103 days!)

Oh yeah and here's the video of Simon after only being on IV fluids for 24 hours. I especially like the last few seconds where he's realized where the sweet taste is coming from.

Monday, November 10, 2008

Off the bottle but someone found their tongue

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So Mr Man stopped taking the bottle but I'm not surprised. I think he just got so hungry coming off his infection and 24 hours of just IV fluids that he was acting on instinct alone. Now that he's back to feeling better (and boy is he feeling better- see pictures) he's more aware of the noodle in his nose and throat. I ain't bovered. We have time to work with him around that once we've really bulked him up and are home and can work with more than just gross tasting formula (that must really only remind him of puke since that would be the only time in his life that he's tasted it- remember that he hasn't taken anything by mouth in the last 9 weeks and so the only time that he would have had formula in there would have been when it was coming back up- real pleasant). He's still really interested in things oral (you'll see in the pictures) and yes, today he discovered his tongue and how it's actaully something that he has control over and is kind of fun to move around. It's toooo cute. He's seconds away from blowing his first razberry and I can't wait to see who it's directed at.

So we're off Milrinone, down to a more specific anti-biotic, back to building up to bolus vs continuous feeds, back to standing, getting to sleep on our (his) own, sitting up and playing again, and just generally getting cuter and more interesting with each passing day.

We're somewhere between 7 and 11 days away from going home depending on whether or not his PIV lasts or we need to put in a PICC line. If he's PIV lasts until Sunday they're ok with him just getting a 10 course of anti-biotics but if it collapses and they need to put in a PICC line then they're thinking that they might as well give him a full 14 days. I get it. I'm ok either way. It's a win win.
Simon's PICU "sister" Jasmine went home today (YAY!!!) and came by to say goodbye. Simon was thrilled to see her again but sad that he won't get to for a while. He fully intends on coming to one of her basketball games in the future and cheering the loudest as she scores with slam dunks.
Here are some pics of the Shimster in all his recovering glory
Lookin' Good Like A Strawberry Should
Forget the Formula I want ScharfenbergerI Love me some Jasmine- I'll drink from a Sippy cup for her anytime
I think that Jacuzzi's are great. Can Carol come home with us?

Sunday, November 9, 2008

100 Days!

Locations of visitors to this pageToday we have been in the hospital for 100 days.


We came in to a really cute sign on the crib and another one on the chair from our nurses. Simon is "back". He was smiling and alert and playful today. It's incredible how obvious it is when he's "here" and when he's not. It makes me realize how present he is when he's awake and feeling well.

Laura says:
Little bit of a rough night last night in terms of puking but we challenged him with a greater increase in volume as well as richness of formula. Pretty amazing that given that, he was so chipper and active this morning when we came in.

He's back to standing and playing with us and toys and enjoying music. I'm a little nervous about the PICC line that we'll need to put in to finish the course of antibiotics. He's still a hard "stick" and I'm wondering how many times they'll need to try before they get one in and where it'll be. If it's in his head again that'll suck. If it's in his leg then no baths for a while which he's been enjoying so much lately. If it's in an arm then then I guess it's no different than the IV right now but either of those options require a poke and trauma. I feel so mixed that we're back to that. The Broviack was so great in that Simon hadn't been poked in months. Of course the fact that it got infected and caused him to go septic was not such a great thing- much worse I know. Still it's hard to watch him scream even if it's for just a few minutes. I have to contextualize it in that it's at least him fighting pain and showing a preference for no pain versus the other day when they needed to draw blood (not from the Broviack- it was still in) and he didn't even flinch when the needle went in.

The plan today is to turn off the Milrinone and go back up on the Enalapril. I'm hoping that we can get back to our daily passes for walks and get the little man out in the sun for a little bit. I can tell that he's feeling a little penned in because every time we even just open the curtain he gets all excited to see further and more than he can when it's closed and the world is just bay #22.

We're on day 5 of antibiotics so really only 9(?) more to go and the team is already talking about being somewhat aggressive with getting him off his other IV drugs (Lasix). I know now that kind of talk is the precursor to the going home kind of talk. That's a good thing.

In some weird way I think we needed this (big) bump to really get us to that place of being ready to go home.

Jasmine, our former neighbor, who moved the other day :-( and her mom sent us a sweet email. This side of the annex is a little less warm/home-like without her. Such an incredible journey with so many wonderful people coming into our lives in the midst of this terrible time. Jasmine and her family really have become a central part of this story of ours and my days will be so different without them there in #21. I will say however that I am thrilled to the core that they are on their way home. That is a wonderful thing. May that someday be us.