Back in the Saddle

Ah what a difference a few hours of cleaning house, grocery shopping and an uber cheezy movie can make. I cleaned the house for a few hours this morning and had reveled in the snippet of feeling normal. Then Laura and I decided to go see High School Musical 3 tonight.

Holy cheesefest, but so fun. *Spoiler alert* We saw it in Berkeley and there's a part in the movie where a kid decides to go to UC Berkeley instead of another school and the entire theater erupted in wild cheering . It was really fun to be in a carefree environment for a little. I can't believe I'm saying this, but thank you Disney.

Simon had a great day- super chipper, napped fairly well, was Mr. Chatty and also turned over from back to front on his own! We're not going to contract his feeds or do anything with his meds this weekend which is kind of nice. We'll see how next week goes- we're all willing to go as slowly as we need to.

We also came home to our house smelling delightful b/c our friend Tanner came by and cleaned our house (I just straightened up earlier) and mowed our lawn. I should mention that we know Tanner through our birth group- they have a 6 month old baby too, Julian. Dude had time and energy and desire to clean our house. Seriously.

Okay, off to bed since it's crazy late!

Over It

I’m really over this. I’m over having to leave work early to meet with doctors and social workers to see if my son is dying or may have a chance of ever leaving a hospital (this week he looks good and like he may have a chance of going home in a few weeks). I’m over putting my son to sleep to the sound of screaming, furious, terrified children. I’m over having no control over the lights. I’m over having to give my baby 6 medications at night and 5 in the morning through a tube that had to be clipped to his clothes and that goes through his nose and is taped to his face and is always in danger of being pulled out or clogged. I'm over being worried every time I give my baby a bath that I'm going to get the IV that goes into his CHEST wet or dirty. I’m over waking up at 6 am every morning and going to a hospital for an hour before I go to work and coming back for 2 hours at night and seeing him for 1 hour before he goes to sleep amidst chaos and fear and pain. I’m over my house looking like a dumping ground because we don’t have the energy to put anything away or wash anything except for underwear, socks and Simon’s onesies that are covered in puke. I’m over obsessing over Simon’s heart rate and input and output and BNP and whether or not he’s sweating. I’m pissed that every other day I have to put him on a scale and wake him up after it’s taken me 30 minutes to put him to sleep because it’s the only accurate way to get a weight. I’m pissed that I’m so exhausted. I’m pissed that I haven’t cooked in *3* months. Me. Haven’t been in the kitchen more than to boil/fry an egg or dump dirty Tupperware in the sink and never actually clean it myself. I’m pissed that I have no privacy to cry over my son while he’s sleeping. I’m over being an example. I’m over being a trooper. I’m over “triumphing” in the middle of a shitstorm. I’m over saying, “he’s stable” with a little nod of the head and a shrug of the shoulders meaning “for now”. I’m over my mother having to burn herself out to help us. I’m over not seeing the seasons change in my neighborhood and feeling like I live in Walnut Creek at work and here in the hospital but not in my house. I’m over feast or famine social time. I’m over feeling like Laura and I can’t get any downtime to do anything besides worry about him, talk about him or call our nurses about him. I’m over worrying that he’ll make it through this and go home and then we’ll go through this whole thing again and that he'll die. I'm over worrying that we’ll hit our 2 million dollar lifetime insurance cap. I’m over mainlining sugar as a way to numb myself. I’m over waking up feeling a little dead inside or so tired I just want to crawl back in bed. I *never* feel like that. I’m over Laura and I fighting about stupid things like whether or not it matters if Simon had his Broviac clamps on when we tried to weigh him 3 times unsuccessfully tonight and woke him up each time and STILL didn’t get an accurate weight. I'm sick of minutiae. I'm over Simon not getting to wear 3/4 of his clothes because they go over his head and it's way too complicated with all his lines to do that everyday.

Today I'm really not feeling grateful or graceful or like coping or being a shining example. Today I feel like this all really, really sucks and I'm over it and I would really, really like Simon to get better. This is bulls**t.

Laura: Jaime said it.

Better and Better

So we started out the day a little rough with a little higher BNP (nothing to worry about but hopefully not a trend), Simon getting a shot, needing a new NG tube (clog, clog, clog), interrupted naps, and some extra pukeage but then we ended the day with an awesome nap, a really low heart rate, a great deal of smiling, and a sweet sweet bedtime ritual with nary a disgruntled peep before heading off to slumber.
So yeah, Shimmy's bnp was back up to 1121 but the team said that it's not really something to worry about and could even have been expected given all the ways that we've been stressing his little bod this past week. I can't say that I wasn't hoping for an even lower number than last week but also thought that it might in fact be up a little given the wean from Milrinone. I was glad to hear just about every doctor say that 300 points was not something to worry about and that we'd keep an eye on it but continue with the wean anyway since he was looking/acting so good. That, and during his later afternoon nap his heart rate was in the 80's when the little man was in deep/sacked out sleep. So we're down to .3 on the milrinone and contracting his feeds down to three hours with an hour off. We're on our way. We are definitely on our way. I want to stay on this road. It leads us home.
PopPop is on his way home. Already missing him.
And... Jaime and I are actually looking forward to a mellow weekend with things looking up all over the place.
Love to all

Wedding photos

Aaargh. A post got deleted.
Try this link for wedding photos from our friend/nurse Sara
http://www.flickr.com/gp/70089109@N00/0f2E59

Simon's at .4 on the milrinone (maybe to .3 today) and we're working on his feeds slowly to try and expand his tummy and maybe even get the little man hungry one of these days.
We're moving at a snails pace and I go back and forth between very ok with it and just wanting to get home.
Today is PopPop's last day :-( So amazing having him here. He will be missed by all especially Shimmy who has been more smiley and laughy than we've ever seen him. He's growing for sure but I think PopPop plays a big part in the little man's new found joy.

Love to all.

Weight for it

Jaime is singing to Simon right now and he's doing the very sweet head bob and lean that he's started doing in the last couple of days. I think there's not much sweeter than when he lays his head down on my chest with purpose. Delightful.
Today has been sweet with Simon having easy happy waking times with both me and my Dad, a Roxie walk for me, a nap with Shimmy for my dad, and a gentle going to sleep with Jaime (spoke too soon...whoops) and soon a dinner out with Dianne, Ed, Bernie, Jaime and myself to celebrate the past weekend's festivities and our third wedding anniversary (Oct 22nd) from wedding one. Simon had his medications redosed based on his new weight (6.7 Kilos!!) so he seems to be doing even better than before and it looks like we'll start the Milrinone wean again either tomorrow or Thursday and have it last for about another week. Once he's off of it, we'll take a look at how he's doing symptomatically and tinker some with his doses again. He's still a little more symptomatic than he was before the last weaning but even less so than he was 24 hours ago. Why? Because his meds were based on a 6 kilo weight. My boy is 6.7 kilos!! Have I mentioned what a porker he is now? That's 14.74 pounds! He's not really a porker compared to some but he's hefty, he's got rolls, and a second chin now. I love it.
His BNP won't be back till Thursday but I'm not expecting too much since we've been stressing him some this week. He also had another Echo today but who knows when we'll get that report back. Really it's more about the day to day and that's going swimmingly.
Thank you all for the love, thoughts, and smiles (I hear that yesterday's video is a keeper)

Paper Thin

Yesterday was wonderful. Exhausting and wonderful. We came upstairs after a really nice dinner with family post wedding and were washing our hands when a message came over the loudspeaker that a patient was coding in the main room of the ICU. It was the first time that we'd heard such an announcement and it was a powerful reminder of where we were. Yes, we had just had a wonderful ceremony and gathering downstairs. We'd had cookies and juice and friends surrounding us. Shimmy looked magnificent in his tux onesie.
And, we still reside in the intensive care unit at Childrens' hospital. The folks that our here (including us) are children and babies that are very sick. Not just sick but critically ill, on that line, sometimes moving one way or the other.
We've been here long enough that the nurses share with us when it's been a rough night/day or not and it wasn't until this morning that we learned that not only did the patient not survive but it was a friend and neighbor that we'd had in the Annex just a few weeks ago. One of the most beautiful little girls I'd ever met. Another cardiac patient who had been in out of the hospital since she was born. Her mom was considering going back to school for nursing since she was doing so well and while she was here we talked about how much we'd learned about medical care (what prompted her interest in nursing school and what makes me never want to be a nurse except for my own son). She borrowed some of Simon's toys and even walked them back herself when she was done with them.
We saw her mom as we were heading out to our wedding. We smiled and said "Hi" knowing that our little friend was back for a routine surgery.
Yuri died last night after an unexpected complication and I am feeling unbelievable grief. She was a force of life and a study in beauty personified. My heart is with her mother right now whose experience I cannot imagine even as close as I've come to it. Please send a prayer out to whatever god/dess or gods or forces you speak with and ask for her safe passage, easy rest, another great go 'round, and/or what ever your tradition offers.
It's a most powerful reminder that while the last couple of weeks have been bliss (relatively) we are still walking in the forest. Every moment with Shimmy is a gift. Life is more precious than we ever really know.

Here is a video of Simon experiencing being tickled for the first time and sharing a new laugh with us.

http://www.youtube.com/v/AtKwfHtnNsE

Nothing else to say.

Hitched!

Well, we did it! Laura and I got legally married today in front of about 30 new and old friends and family in a very sweet and very short (!) ceremony. We had cookies and juice with folks and then went back to our room for a bit. Then my (Jaime's) Dad, Stepmom, cousin, grandfather and his sweetheart came and we ate dinner in the cafeteria. It was a very sweet and exhausting day over all.

We will have more pics soon from lots of folks who were snapping away but here are some from our camera.

Also, here are the words to the song Cody wrote for Simon!

In His Eyes

speechless words with colorful expressions
countless verbs given every which direction
can you feel its so infectious
can you feel it now

a little boy with with love ahead to live for
so much joy with a mom and mom to care for
every bump and every bruise
there's so much he could hold on to

so he opens his eyes, to realize
hes not alone in this fight, we all stand together
hand in hand side by side
with just a single tear, and some happiness, in his eyes

can't defer, hitting those same old potholes
on a long dark road but its the only way to get home
when you're there, there'll be room to grow
building castles on the beach and wings in the snow

moving forward each and every day
with all this hope we'll never let escape
baby steps is a small price to pay
for a long life to lead that wont ever fade away

so he opens his eyes, to realize
hes not alone in this fight, we all stand together
hand in hand side by side
with just a single tear, and some happiness, in his eyes

Here are a few pics:


Lookin' Gooood

Us with our neighbor Jasmine, who couldn't come to the ceremony :-(
Simon with Reverend Doctor Auntie Clay and Auntie Joan

Simon's bed, decorated by our nurses while we were gone

Our TV, decorated