Charlie's Blog

Welcome to a blog about a boy with a rare heart disease, his mum and dad, and his adventures.

Sunday, December 25, 2011

Did I make you cry on Christmas day?

Charlie's first Christmas has come and gone. It was a day filled with all the good things a first Christmas should be - being spoiled by parents and grandparents and aunts and uncles, staying up way past our bedtime and enjoying good company all day long. I thought it would be more emotional for me - I thought I would spend the day thinking about future Christmases and where things were headed with Charlie, but, for once, I was able to live in the moment and enjoy every part of being a parent on a child's first Christmas.

Charlie got over his 'flu' as we are now calling it (the week-from-hell of not eating, crying unless he was being held, unable to sleep through the night) and immediately dove head first into a cold. When it rains, it pours. With the 'flu', we did end up taking him to the hospital, and they did wome tests (examines him blood work) and assured us whatever charlie had it was NOT heart failure related. Whew! But he had lost a bit of weight, so to keep food in him they changed his formula mix to regular strength, rather then the hyper caloric mix that is his standard. It did help him keep down his food, although the poops continued. I expect he lost a bit more weight but that it was nothing compared to what would have been the case had we not gone to the hospital and followed their advice.

So, about the cold. Who knew so much snot could occupy one little snub nose?! The poor kid can't breath worth shit, has given his dad the same cold, and is snorting and snarfing all over everything. I had to change my pajama top last night because the shoulder was covered - COVERED - in boogers. Appetizing, I know.

This second adventure-in-illness has made me so thankful we have the NG tube. He is literally unable to eat by mouth because he can't breath through his nose, so we have been tubing everything into him. He's keeping most of it down (two tiny barfs today - one, an ill-timed sneeze and the other was a I'm-crying-so-hard-because-I-want-to-be-with-the-people-so-I-puked barf) and I'm sure he's back to gaining. He is trying to eat each time we get out the bottle, and that's what's important to me.

So, second christmas comes tomorrow (i.e. the in-laws) and then we are having a dinner party on Thursday night. We go back to the hospital on Friday just to make sure we are back on the right track, and then it's really vacation time. The whole next week Matt has off (I know, us teachers are spoiled!) so we are planning on just relaxing. All in all, so far, a successful Christmas vacation.

Merry Christmas.

Did I make you cry on Christmas?/ Sufjan Stevens

This time of year you always disappear
You tell me not to call
You tell me not to call
And when the door is closed you're wearing different clothes
Or hiding in the paper, pretending not to hear

Inexpensive wine
I buy it all the time
You tell me take it back
You say you'll take a nap
But I can see it now
You always tell me how
I could do so much better
You said it in your letter

Did I make you cry
On Christmas day?
Did I let you down
Like every other day?
Did I make you cry
On Christmas day?
Did I let you down
On Christmas day?

The bed that isn't made
The broken window shade
The radiator's on
I loved you along
But I can see it now
You always tell me how
I could do so much better
You said it in your letter

I stay awake at night
After we have a fight
I'm writing poems about you
And they aren't very nice
I didn't mean to yell
I said I couldn't tell
I only grabbed your wrist
Or would you rather we kissed?

Did I make you cry
On Christmas day?
Did I make you cry
Like every other day?
Did I make you cry
On Christmas day?
Did I make you cry?

Saturday, December 17, 2011

Two Steps Back

This has been the worst week yet, mostly because everything was going so well for so long. Perhaps this is a message from above? Some perspective?

Last Monday, Charlie woke up starving. He ate 100mLs of his 160mLs of hyper caloric formula - a big deal for someone who averages 42% of each bottle. At his 10am feed, he only ate 50mLs - fine, because that's about average for him. It would be like us eating cheesecake at every meal and being expected to finish it at every meal.

From there, everything fell apart.

Since then, he has had 300mLs by mouth TOTAL, over the next 5 days. He won't even let the bottle get near him, never mind in his mouth. He was running a light fever for a couple of days, he was being grumpy, having diarrhea, sleeping more and sleeping heavier. No one at the hospital seemed to think this was an issue - even though these changes took place, literally, overnight. On Friday, I emailed a list of concerns to our NPs, ho told me to bring him in 'if I wanted'. Well, geez, thanks for nothing. I didn't take him down, not because I wanted to give it the weekend just in case, as they think at the hospital, that he has a virus and that it'll pass. If he's not better by Monday - obviously on the mend - we are going down.

Our doctor-friend suggested it may be the fact we started yogurt and meat last weekend. I am hoping against hope that IS indeed the problem. We've cut out all solids for a couple of days, so hopefully that does the trick.

And that's the news from our world, suddenly plunged back into the depths of possible heart failure.

Two Steps Back - Craig David

You know I'm the kinda guy that does 9 to 5
Working real hard it's the way I live my life
Back home just me and you girl all alone
With no one interrupting
Switch off the phone
But I could be that other guy
Who comes home late night after night and tells you lies
So why are you trippin out, on me girl all the time
When every day it's only you that's on my mind oh

Every time we take one step forward
You take 2 steps back
Everytime it's right you bring left back (oh, oh)
Girl you really oughta think about it
Cuz there's really no doubt about it
You know I'm been there for you and that's the truth [x2]

You know you're the kinda girl that doesn't need to front
Keep it real, let me know just what you want
Sometimes I just don't know when to stop
You worry so much over nothing
You're just losing what you've got
Now can't you see there's no other girl
I think you're the most beautiful woman in this world
But you say I don't appreciate you
And I don't know how to treat you
We don't do the same thing we did no more


Remember it wasn't that long ago
You told me that you love me so
Don't forget all the nights we shared
When you told me girl how much you cared
It could be a little straight
But this is the way plays to play
I'm not that kinda man
Why can't you understand
Cause I
Want you to trust in me
Baby girl can't you see
You only gonna mess things up
You've done enough
Why can't you stop
(Cause) You're gonna lose what's good to you
And it's the last thing you wanna do
Won't find another like me, oohhh

Sunday, December 11, 2011

No Answers

Well, it's been another week. Charlie is having good days and bad days still, but the bad days are getting fewer and they aren't as 'bad' as they used to be. Partly, that's reality, and partly, that's perspective. I don't freak out anymore is he completely rejects a bottle. It's more a small disappointment in an otherwise still hopeful situation. I wish he could talk, though, and tell me why he doesn't want that bottle. Or why he threw up. Or why he's upset. Is it teething or is it his heart?

He is for SURE teething. He has all the classic symptoms - diarrhea, flushed cheeks, occasional miserable temperament, and chewing, chewing, chewing. As I said to Matt last week - "Sometimes I like having a normalish baby with normal problems." It's refreshing to NOT think it's his heart. :)

On Friday we went to Sick Kids for a checkup. The staff were all really pleased with his progress. It was a boring visit, because we just saw our NP and cardiologist, had some blood taken and went home! The next visit, though, is a huge one - sedate echo (they're going to knock him out!), Holter (a device that measure heart rhythms for a longer period of time), an EKG, and more blood work. That will be an interesting day.

Lastly, a friend of mine asked me to clarify a few things for my reading audience. Enjoy!

Q: Why is it such a big deal when Charlie throws up?
A: It's not, really. It just bothers me. He didn't throw up for his first 4 months of life, so I didn't get accustomed to it like many of my friends did. I always thought of Charlie as 'not a barfer' so when he started his medications, and started throwing up, I took it as a sign he was actually getting worse (which can happen on these medications). In reality, though, all it was was Charlie FINALLY eating enough TO throw up. He went from eating little bits to having big bottles. Plus, I'm assuming sometimes he just feels nauseated, and upchucks because he can.

Q: Tell me more about Charlie's medications.
A: OK! I feel like a pharmacist! Charlie is on:

1. Prevacid (PREV-a-sid). The least of our medications, this one is just for reflux (because Charlie has a feeding tube (an 'NG' - NasoGastric tube) his stomach's sphincter muscle is open a bit all the time, which makes it easier for stomach acid to come up his esophagus and burn him). The Prevacid makes his stomach acid less acidic, and thus less burn-y.
2. Lasix (LAY-six). This is a diuretic. It makes him pee a WHOLE bunch right after he takes it. He has to take it because, when in heart failure, your body retains fluid. Charlie's lungs were quite 'wet' when we took him into Sick Kids the first time. The Lasix is what made Charlie lose almost a whole pound in fluid when first diagnosed (which is a lot when you only weighed 13lbs, 8oz to begin with!). The doctors have recently lessened Charlie's Lasix dose a tiny bit to see how it goes.
3. Enoxaparin (EE-nox-a-pair-in, or EE-nox for short). This is Charlie's twice-daily injection. It's a blood thinner to ensure Charlie doesn't get clots in his heart because of insufficient pumping.
4. Carvedilol (CAR-vay-dil-lol). This is Charlie's beta-blocker. I don't really know what that means - just that it helps his blood pump more efficiently by blocking a protien naturally created in our bodies.
5. Captopril (CAP-tow-prill). Charlie's ACE-inhibitor. ACE is an acronym for another protien that needs to be blocked to help his heart pump better. Again, I'm not sure of the details. It's all very technical. This drug also reduces Charlie's blood pressure slightly.

So there you go!

Q: What's the deal with Charlie's feeding? Why doesn't he eat like a normal baby?
A: Good question, and a fucking frustrating one. There's no clear answer, but as Kristen (NP) put it "He doesn't eat because his heart sucks.". It could be that he gets tired easily, from the sucking on the bottle. OR it could be that because it takes blood to digest food, his body makes him feel full before he really is. OR it could be that eating makes him feel nauseated so he stops. All of these are options and we won't know which one it is (or if it's something else!) for a long time. This is also why he has to have a feeding tube - when he doesn't finishes a bottle, we just 'tube' the rest into him. He may eventually have to be fitted with a 'G' tube (Gastric), which is a small tube that runs into his stomach from his side - but that depends on how well he responds to the drugs. The friend who asked all these question referred to the 'art' of feeding Charlie, and that is just a BRILLIANT way to put it. He has to be propped up, on his back, kind of stretched out, watching something to distract him, cajoled into eating, and then sung to or something else to distract him while he is actually eating. He often put his hand in my mouth and I just let him leave it there. He runs his fingers over my teeth and inside my lips. It keeps him occupied and he keeps eating. It's such a struggle, and I'm the only one who can do it. He won't eat as much for my husband, and he won't eat at all for anyone else.

Q: What are the side-effects of Charlie's condition?
A: Well, in the short-term, we are experiencing some delays in gross motor skills (he's not crawling, although he's on his way). He is low percentiles for weight and height, so those things were probably affected by the lack of nutrition over the summer (he's catching up, though!). Other then that, long-term, we are looking at a boy who will probably be pretty skinny and not as active as other kids, and will get tired mor easily then others too. Really, nothing that is too big of a deal, to us. We just want him to be as healthy as he can be, and continue being the happy litle duck he is.

No Answers - Thursday

Can you feel it in the dead of night?
It's all around but can't be seen.
Can you hear it in the parking lot?
It only speaks when spoken to.
Can you find it in the marathon?
The more you take the more you leave.
Can you see them in a pane of glass?
You know them but they don't know you.
I can see it now:
What gets lost but never found?
What could fasten two,
Yet only touches one?
Who could make it hurt,
As much as it did before?
(You could tie a string
Around the place where it used to show.)

I can hear the ocean when I say your name..
In the yellow hem of the sea's blue skirt.
You're the last asleep on a one-way train..
It's been eight years if it's been a day.
You can see her in a pane of glass..
You think you know her but you don't.
You share a family but you don't share a name..
Some things run deeper than blood.

No answers. No answers when you're not around.

Friday, December 2, 2011

The Book Thief

Ok, I love music, but I also love to read. I am currently reading "The Book Thief" by Marcus Zusak. Thinking about grief and mourning, this quote stood out to me. Something to reflect on in the tougher times.

“The point is, Ilsa Hermann had decided to make suffering her triumph. When it refused to let go of her, she succumbed to it. She embraced it.
She could have shot herself, scratched herself or indulged in other forms of self-mutilation, but she chose what she probably felt was the weakest option - to at least endure the discomfort of the weather.”

Charlie weighed in yesterday at 17lbs, 11oz - finally double his birth weight. I am relieved and enjoying every minute with my beautiful baby boy. I refuse to be like Ilsa Hermann. I will not make suffering my triumph.

Monday, November 28, 2011

Put on a happy face

I know I haven't posted in a while - all of you readers should take this as a good sign. A VERY good sign. Not only am I feeling better, but I think Charlie is starting to as well. He is eating more and more on a regular basis*, is happy and as active as ever, is on the verge (we're thisclose) to crawling or scooching, and all is currently well in the Thomas household.

*Eating better is relative. Charlie is now finishing half of the average bottle, versus a quarter - or less - before.

This week's title is not meant to be dismissive. I don't mean 'put on a happy face' as in 'paste one on there for the world to see, and meanwhile cry quietly into your pillow at home'. I really mean I can smile right now. We are still so early in this process, but the more I see Charlie and the more I read about other kids with DCM and the more hopeful advances I see in heart treatments, the better I feel. I can't help but notice, too, that since I've been less stressed, Charlie has been feeling better. 'Duh.' says my very helpful husband. I'll only let him get away with that because it's his 31st birthday today.

Celebrations are important in our house. Charlie was at the table tonight, as every night, for the carrot cake and pizza Matt wanted, and we said 'Happy birthday Daddy!' all day today together. Well, I said it and Charlie laughed uproariously. He laughs a lot most days. It's a beautiful sound to hear.

This week we are off for an adventure at the One-of-a-Kind show in Toronto. We'll see how that goes - long drives both ways and two feeds out of the house. I'm nervous. I'll post about it after.

On that note, it's movie time around here (Matt fancies himself a movie buff). Happy birthday, Daddy!

Put on a happy face

Gray skies are gonna clear up,
Put on a happy face;
Brush off the clouds and cheer up,
Put on a happy face.
Take off the gloomy mask of tragedy,
It's not your style;
You'll look so good that you'll be glad
Ya' decide to smile!
Pick out a pleasant outlook,
Stick out that noble chin;
Wipe off that "full of doubt" look,
Slap on a happy grin!
And spread sunshine all over the place,
Just put on a happy face!
Put on a happy face
Put on a happy face
And if you're feeling cross and bitterish
Don't sit and whine
Think of banana split and licorice
And you'll feel fine
I knew a girl so glooming
She'd never laugh or sing
She wouldn't listen to me
Now she's a mean old thing
So spread sunshine all over the place
Just put on a happy face

Friday, November 18, 2011

Take it Easy

It's been a great week. This time last week, I was still thinking about Charlie's DCM being temporary. It's amazing how a shift in thinking can heal your own heart. I am now thinking of his DCM as something we are going to live with - emphasis on live - and a challenge that we have been chosen to take on.

I was really have trouble with Charlie's NG tube, in particular. If you are reading this and know me, then you know how much food affects my life. I love food. I can't imagine not loving food. I will never be skinny because I just. Love. Food. I couldn't imagine a child of mine not liking food. And then, suddenly, magically, Charlie started eating - dare I say liking - his solid food. It gives me so much hope for his future every time he opens that little mouth of his like a baby bird. The tube suddenly seems long-term, but temporary.

I will cook this child whatever he wants to eat, whenever he wants to eat it.

I was also having trouble with the thought of Charlie's life being cut short. I know I've said it before, but I've really started living as though nothing is certain. No one is guaranteed tomorrow. Charlie is doing great right now, and that's a focus I need to maintain.

So, all in all, things are great! Charlie is tranisitioning to not needing a third nap, which is awesome on two fronts: one, he has more time to scooch and be cute and around us, and two, it gives Matt and I some evening time because Charlie goes to bed earlier now. We completed Dexter Season 5, and now we're starting The Wire (although I left episode 1 to write this entry, so that doesn't bode well for the series). It's so nice to just spend time together that isn't sleeping in bed. I think things are finally starting to normalize. I'm sure now that I've written that, tomorrow we'll send up having a horrible day and I'll feel like we're right back to square one - but for now, and for the past week, I've felt again like I am enjoying being a mum, and that we're a normal family. It feels so good to feel normal again.

Part of feeling normal is getting out and doing things with other people. With our friends Virginia and Jamie, and their son Grayson, we took Charlie to the park for his first ride in the baby swing. He loved it! Here are the super-cute photos to prove it. Enjoy!

Charlie diggin' the swing

Charlie and Grayson

Take it Easy - The Eagles

"Take It Easy"

Well, I'm running down the road
tryin' to loosen my load
I've got seven women on
my mind,
Four that wanna own me,
Two that wanna stone me,
One says she's a friend of mine
Take It easy, take it easy
Don't let the sound of your own wheels
drive you crazy
Lighten up while you still can
don't even try to understand
Just find a place to make your stand
and take it easy
Well, I'm a standing on a corner
in Winslow, Arizona
and such a fine sight to see
It's a girl, my Lord, in a flatbed
Ford slowin' down to take a look at me
Come on, baby, don't say maybe
I gotta know if your sweet love is
gonna save me
We may lose and we may win though
we will never be here again
so open up, I'm climbin' in,
so take it easy
Well I'm running down the road trying to loosen
my load, got a world of trouble on my mind
lookin' for a lover who won't blow my
cover, she's so hard to find
Take it easy, take it easy
don't let the sound of your own
wheels make you crazy
come on baby, don't say maybe
I gotta know if your sweet love is
gonna save me, oh oh oh
Oh we got it easy
We oughta take it easy

Friday, November 11, 2011

Viva Forever

I have been reading lots of other blogs lately - other CM blogs as listed on my site, and my friend's blogs as well. One entry that struck a chord with me was one that mentioned having a mantra to help get you through the tough days. This mom's mantra was something along the lines of "Eyes, wise, heart, smart" - she loves her child's eyes, wisdom, new heart, and her intelligence. I have been having a hard time of late and wanted to come up with a mantra of my own. It took me a few days, but now I've got it.

"This is forever."

It means so many things to me. "This is forever" - as in Charlie is going to be around for a long, long time and to enjoy every minute with him. Put away the tears, Bradstreet, and buck up, because this is forever (Bradstreet is my maiden name, and what I still call myself when I need to toughen up). "This is forever" - as in, Charlie, while he may get better, will have DCM for his. entire. life. "This is forever", as in what being a parent is all about, because even if, a long time from now, Charlie isn't around, I'll still be his mum and that is certainly forever.

It's made me feel better the few times I've already had to use it. I don't know why, exactly, these past three weeks have been so tough, so rollercoaster-y. Matt thinks that I am grieving our old life, that I didn't fully accept what was happening at first. I think that may be true, but it's been three months and I've never been a brush-things-under-the-couch type of person before, so why now? I think perhaps that I had deluded myself into thinking Charlie was going to get better from this as though from a flu or cold - one day, he'd just start eating more and we'd go for an echo and he would be healed. It has taken me time to understand this new world we've been thrust into - this world of medical stores and doctors and nurses and hospitals. It's the time that has allowed me to grieve our old life, as well as the one we now know Charlie won't have (we had high hopes for an at least partially athletic child). But it's also taken me time to rebuild the future I had in my head, and my mantra is helping with that. No matter what, Charlie is still here, still happy and beautiful, and this is forever.

Addition: I said this to Matt this morning and he thought I should post about it. I've been feeling lately like Charlie won't EVER crawl or move in a forwards direction - and then last night I realized: people that can walk, do walk. He'll get there. It's just a matter of time. :)

Viva Forever - The Spice Girls

Do you still remember
How we used to be
Feeling together, believe in whatever
My love has said to me
Both of us were dreamers
Young love in the sun
Felt like my saviour, my spirit I gave ya
We'd only just begun

Hasta Manana,
Always be mine

Viva forever, I'll be waiting
Everlasting, like the sun
Live forever,
For the moment
Ever searching for the one

Yes I still remember,
Every whispered word
The touch of your skin, giving life from within
Like a love song that I'd heard
Slipping through our fingers,
Like the sands of time
Promises made, every memory saved
Has reflections in my mind

Hasta Manana,
Always be mine

Back where I belong now,
Was it just a dream
Feelings unfold, they will never be sold
And the secret's safe with me

Hasta Manana,
Always be mine

Saturday, November 5, 2011

Somewhere over the Rainbow

Yesterday we spent the day at the Hospital for Sick Children. All day. We got so much done, and Charlie weathered it beautifully.

(A friend who is an avid blogger and Internet nerd has told me to double space the paragraphs for ease of reading. I shall comply).

We arrvied at 11am and Charlie got some bloodwork done. Not a bad poke, but not his best poke either. No matter what, he did better then the 4-year-old next door, who kept screaming 'Goddamn it!' when they went at her with a needle. From there, we headed to 4A (our clinic ward), checked in, and fed Charlie. Because of the NG tube, this takes about an hour. By noon, Dr. D. was ready to see us, and we went in to see her and Kristen. They are super pleased with how Charlie is coming along - he weighed in at 7.270kg (about 16 lbs), and his overall mood is excellent. He hasn't been throwing up recently, which is great. We've been discharged to one hospital visit a month, which really means he is completely stable now and now we just wait for the drugs to work - for which the timeline is about 6 months, or more.

After that meeting, we got lunch. And went for a walk! We had a nice little visit with downtown Toronto. At 2:30, it was (finally) time for the echo. I don't want to complain, but it was a long, long day.

The echo was pretty much a non-event. He's not worse (but apparently, he really couldn't be much worse, anyways) and there were no clots. They didn't do the ejection fraction measurement this time, so we didn't get any numbers at compare. I get so hopeful each time he has an echo that the NP's are going to come back and say "Guess what? He's doing better!", and when it doesn't happen - no matter how many times I tell myself that it WON'T happen - I am crushed. That said, when they finally DO say that, I'll know that it's for real.

Theh we fed Charlie and drove home through 2 hours of traffic. We were so distracted by the traffic that we forgot to pick up Matt's car in Pickering, and he had to get a friend to drive him out there to get it later in the night! Like I said, long day.

Today's song is 'Somewhere over the rainbow', because it's a hopeful song about the future, and that's how I am feeling right now. Someday, this has to get better.

Somewhere over the rainbow

Somewhere over the rainbow
Way up high,
There's a land that I heard of
Once in a lullaby.

Somewhere over the rainbow
Skies are blue,
And the dreams that you dare to dream
Really do come true.

Someday I'll wish upon a star
And wake up where the clouds are far
Behind me.
Where troubles melt like lemon drops
Away above the chimney tops
That's where you'll find me.

Somewhere over the rainbow
Bluebirds fly.
Birds fly over the rainbow.
Why then, oh why can't I?

If happy little bluebirds fly
Beyond the rainbow
Why, oh why can't I?

Wednesday, November 2, 2011

Rollin' with my homies

It's been a week since I last posted. I can't believe it - I am sorry to those of you who check every day for Chupdates (you know who you are).

It's been a pretty good week, actually. Charlie has been eating more lately (averaging a third of each bottle, or more) and continues to be happy and content. Today, he ate some carrots and cereal, which was a big accomplishment. I am still worried about what the future holds food-wise, but I am getting better at just accepting things as they come along.

I went through a really tough time last week - I felt like Charlie was going to get worse at any second, that things weren't going to work out, and that we were in for more and more hurdles. I don't know why, exactly, I had a rough patch - it didn't have any relation to Charlie, although he was eating a bit less for a few days. It seemed to just come upon me - a dark cloud descended, like in those commercials about depression. I cried to one friend on the phone about how I now understand (and never did before) why people with depression don't want to get out of bed. For a few days, I didn't want to get out of bed, although I did. Everything shitty happens when you're out of bed. Under the covers is so warm and comforting and safe. I miss the safe feeling of our old life.

Matt was instrumental in getting me though that patch, as was my mom and my friends.
This week I decided I needed to see people for a distraction. I used to avoid distractions - I thought that I would do better to completely accept what is going on by sitting at home by myself. I now think that I have accepted it, but not seeing people is not helping my state of mind. So, this week, I've had over a friend every day. Friends on Monday, doctor's appointment yesterday, my mum today, tomorrow another friend, and then Friday we are back at Sick Kids for an echo, some bloodwork and Charlie's regular appointment. It has helped immensely to be around people again.

I think I was isolating myself for a few weeks there in order to just be with Charlie, and accept the situation, now that things have settled into somewhat of a new normal.

Hallowe'en was adorable, if nothing else. Here's a couple of pictures for proof - Charlie was a monkey (appropriate) and I was a pumpkin (appropriate):

At Charlie's doctor's appointment yesterday, he weighed in at 15lbs, 15.5oz. This is about .5oz ahead of where we thought he'd be, which is great. He's sitting at the 6th percentile and shooting up the charts. We're so proud of him. He also is going through a fairly barf-free time right now, which is great for his clothes, our floors, and my clothes. He's nice and chubby, warm and snuggly, and we love him so much.

This has been a fairly random blog update. So, a random song! 'Rollin' with my homies' - I've been rollin' with some of my pretty awesome homies lately, all of whom come to see my rather then making me drag the NG stuff all over the place - thanks for making me feel like I belong in the world again.

Rollin' with the homeis - Coolio

Saturday morning, take the train for a ride
The sun is up, I got my homies by my side
Rollin' down the street with my sixteen speakers
... on the beach, daddy dippin'
I hang a light at the right, ready to have fun
Then I bust a left for the 121
Pull it into park and lay it on the grass
I roll back the ride, so I can see some ass
Clock one sista, fifteens in the rear
Bump a forty, leaves me gawkin' here
I hits 'em up for the circle, that's how I'm livin'
Crowbars in the house and got us on a mission
You can be Blood, or you can see Cryppin' fool
But I ain't trippin'
My homie Snoop kicks the dinner juice and that's alright,
But a-Coolio with the flow seems to yak all night

Rollin' with my homies ('said we yak all night, yeah)
'Said we yak all night (I got us on the way in the CBT, and it's alright)
Yak all night...
Rollin' with my homies ('said we yak all night, yeah)
'Said we yak all night (I got us on the way in the CBT, and it's alright)
Yak all night...

Monday, October 24, 2011


I'm feeling much better, after a few days of being as sad as I've been about Charlie's DCM. It's really difficult not to become completely nihllistic (sp?) and completely give up. But then, how can you give up in the face of such beauty? This child is amazing.

So, a new day, a new page. We were trying to swtich Charlie from 5 feeds a day to 4, which completely did not work. He stopped eating - our NP's think that he can only handle 150mls at a time because of the blood flow needed to digest. I have to say, I have learned more in the past 2 months about human biology then I did throughout high school. So, back to 5 bottles a day we will go. Oh, and he's handling a little more cereal now (1 tsp at a time!) pre-bottle, and is enjoying eating, seemingly. Sometimes I have to dance and sing to get him to open his mouth, but once it's in there he laps it up. Good for now, I suppose. He's back to eating a third- to a half- of each bottle, and I'm not forcing him to eat anymore. I think it's important that each eating experience is a good one, so if he puts the bottle back in hs mouth to chew the nipple, I'm cool with it, but as soon as he gives me the 'I'm done' face, he's done. It's going pretty well these days.

If you want, a YouTube video of Charlie eating. It's pretty ridiculous - and so is my reaction. Click here.

The other exciting news around here is that Charlie's first tooth has broken through! He had been tonguing this certain spot on his lip for a few days and I pulled down the lip to see what was going on - and there was a white, glistening tooth! He keeps playing with it and doesn't like anyone to touch it - but if you put your finger nears his face, he'll grab it and pull it in, and then you can have a real good feel. It's SO sharp! He's going to look so different in a week or so when it grows in and he no longer has an exclusively gummy smile.

Well, it's bottle time around here, like it always is. Enjoy today's song: Survivor, by Beyonce and crew. Because that's what Charlie, and is going to be. I'm aware that the lyrics don't match our situation at all (I am so not breaking up with Charlie, ever) but the overall tone is certainly applicable. Perhaps we can think of it in relation to when DCM in no longer in the forefront of our minds?

Survivor - Destiny's Child

Now that you're out of my life
I'm so much better
You thought that I'd be weak without you
But I'm stronger
You thought that I'd be broke without you
But I'm richer
You thought that I'd be sad without you
I laugh harder
You thought I wouldn't grow without you
Now I'm wiser
Though that I'd be helpless without you
But I'm smarter
You thought that I'd be stressed without you
But I'm chillin'
You thought I wouldn't sell without you
Sold 9 million

I'm a survivor (What?)
I'm not gon give up (What?)
I'm not gon stop (What?)
I'm gon work harder (What?)
I'm a survivor (What?)
I'm gonna make it (What?)
I will survive (What?)
Keep on survivin' (What?)

I'm a survivor (What?)
I'm not gon give up (What?)
I'm not gon stop (What?)
I'm gon work harder (What?)
I'm a survivor (What?)
I'm gonna make it (What?)
I will survive (What?)
Keep on survivin' (What?)

Thought I couldn't breathe without
I'm inhaling
You thought I couldn't see without you
Perfect vision
You thought I couldn't last without you
But I'm lastin'
You thought that I would die without you
But I'm livin'
Thought that I would fail without you
But I'm on top
Thought it would be over by now
But it won't stop
Thought that I would self destruct
But I'm still here
Even in my years to come
I'm still gon be here

I'm a survivor (What?)
I'm not gon give up (What?)
I'm not gon stop (What?)
I'm gon work harder (What?)
I'm a survivor (What?)
I'm gonna make it (What?)
I will survive (What?)
Keep on survivin' (What?)

Wednesday, October 19, 2011

Everybody Hurts

I'm sorry I haven't written in a few days; things have been crazy around here. Well, that's a lie. I've just been enjoying being a mum, being home with Charlie. I haven't had the inclination or the time, seemingly, to write anything worthwhile. But today, I do.

Coming home from the hospital was fine. Charlie rocked the new medication, or so the staff at Sick Kids told us, and our time there was actually really boring. It made me realize how much adrenaline I was running on for that week back in August. I felt constantly being back then - this time, it felt like a lot of hurry up and wait. So, upon discharge, we were very happy to leave the hospital behind, even for just a few days. They told us on Sunday that this week might be the week we got the OK to only come once every two weeks instead of once every week, so we had that to look forward to.

I'm feeling pretty sorry for myself tonight. It's a combination of things: I'm overtired (5 hours of sleep last night combined with no nap today makes Kristina an unhappy girl), I'm a bit panicked that we don't go back to the hospital for 16 days, Charlie isn't eating well these days, Dr. D.'s tone made me think Charlie isn't doing as well as we think he is, Charlie goes for another echo on Nov. 4th (the next appointment date), and I have a generally bad feeling at the moment. Let's go through these, one by one.

1. I'm overtired. Must take more naps? Solution: No solution for this one, and am thus not going to whine about it.

2. We don't go back to the hospital for 16 days: This is the least of my issues. We have a nurse visit once a week, so there'll be two of those before heading back to Sick Kids. Solution: Not going is a good thing, because he is stable.

3. Charlie isn't eating well these days: this kid drives me nuts sometimes. He isn't eating very much right now, although he is eating a bit more cereal. I wonder if it's that he's figured out that he gets full (somehow) even if he doesn't eat much, or does he not feel well right now? He seems fine, behaviour-wise. He goes through fits and starts, and right now we're in a fit. Solution: No solution here, either, other then patience.

4. Dr. D.'s tone: like I said in my previous entry, her strong suit is not compassion. Her words said "How's he eating? Not well. OK." Her tone said "He's not eating well? That's a sign that things aren't right. Let's keep an eye on this." Now, Judith (NP) said not to worry about it, that it's really good he's taking even some, and that it's really good he's having cereal now. Trust the highly educated doctor or the nurse that sees Charlie all the time? Tone misread? Not even there? I should have said something. Solution: Will call tomorrow to discuss with Judith or Kristen.

5. The echo: I am worried about this echo because no one has told me not to worry about it. The first one was scheduled so far in advance, and they told us right away not to expect anything at that one. I am so worried that this one should show some improvement but won't. All of my hope from the magic '17' number from before is gone. Solution: wait and see, I guess.

6. My bad feeling: I don't know if this is separate from all of these things or a combination factor from all of them. I just have a bad feeling about things right now. In the past I didn't trust my mother's instinct, and now that I always do I don't want to, because it is telling me that something is wrong. That things aren't going as well as I thought they were. That a transplant is not only likely but inevitable. That I'll only have 15 or 20 years with my boy. Solution: Fuck, wait and see. Again.

This didn't really make me feel better. There is a lot of wait and see 'solutions', which aren't solutions at all. Never before have I wished for a time machine, just a glimpse into the future to see if Charlie will be all right, or not. I know I should stay positive, that I should think of only good things and butterflies and rainbows, but it's impossible. I often think of the worst. For tonight, I think all I can hope is that tomorrow is a better day.

Everybody Hurts - REM

When the day is long and the night, the night is yours alone,
When you're sure you've had enough of this life, well hang on
Don't let yourself go, 'cause everybody cries and everybody hurts sometimes

Sometimes everything is wrong. Now it's time to sing along
When your day is night alone, (hold on, hold on)
If you feel like letting go, (hold on)
When you think you've had too much of this life, well hang on

'Cause everybody hurts. Take comfort in your friends
Everybody hurts. Don't throw your hand. Oh, no. Don't throw your hand
If you feel like you're alone, no, no, no, you are not alone

If you're on your own in this life, the days and nights are long,
When you think you've had too much of this life to hang on

Well, everybody hurts sometimes,
Everybody cries. And everybody hurts sometimes
And everybody hurts sometimes. So, hold on, hold on
Hold on, hold on, hold on, hold on, hold on, hold on
Everybody hurts. You are not alone

Saturday, October 15, 2011

Beautiful Boy (Darling Boy)

So, we've spend the last few days in this hospital getting Charlie's final med started and monitored. The good news is that he has taken to it well (as we expected) and we get to go home tomorrow! His blood pressure (which is what they were monitoring), has stayed fairly level even with the full dose, and so we are finally on his entire protocol of medications. He now takes 6 different types every day, two of which are vitamins or non-DCM related, and four that are helping his heart. He's been in a great mood while we've been here - picking up his mad flirting skills right where he left off. He now has three (!) different nurses who all think THEY are his girlfriend. Man, there's gonna be some hearts broken in Ward 4D...

So, our next challenge is continuing to gain weight and getting him down to 4 feeds a day - what a dream! Then, we'll have more time to fit in cereal and other foods, which we are going to start in the next few weeks. I finally get to break out the Babea (Google it - the most amazing baby appliance you'll ever see) and make some real baby food!

Being in the hospital reminds me of a letter a close friend sent me upon becoming aware of Charlie's situation:

"There will always be a fluttering somewhere in the back of your mind. That is panic. You will always know where it is. Sometimes it will be delicate and faraway, and you will be able to to ignore it and check emails, make phone calls and eat food that you may even taste. Sometimes it will be present, but quiet, and you will fidget and fuss over blankets and the set-up of chairs and worry about useless things like showers and sleep. And sometimes the fluttering worry will be like a storm on the other side of a thin sheet of glass, and all you will be able to do is remember to breathe. The glass will not shatter. It may seem like it will, but you will be able to withstand more than you ever imagined you could, more than you ever imagined was possible to know, more than you will ever be able to explain to anyone. The fluttering is most dangerous when it is quiet. It will sneak up on you unawares, and swell and fill your consciousness and suddenly you will be in that storm, unable to breathe for the sheer panic of the moment. " Being in the hospital, surrounded by adept medical staff, keeps the panic "delicate and far away". The perspective here is skewed, too - I just finished having a conversation with a mom who is celebrating her son's longest morphine-induced nap ever. Charlie goes home tomorrow to continue his essentially normal baby-life. I can't imagine that mothers panic. Mine is manageable, especially here.

In honour of Charlie and his amazing spirit while we are here in the boring, boring hospital, Lennon's 'Beautiful Boy (Darling Boy)' is our song of choice for today. We are exhausted and bored and panicked, and yet somehow Charlie's smile makes everything better. He is an amazing, beautiful boy.

Beautiful Boy (Darling Boy)

Close your eyes,
Have no fear,
The monsters gone,
He's on the run and your daddy's here,

Beautiful, beautiful,
Beautiful Boy,

Before you go to sleep,
Say a little prayer,
Every day in every way,
It's getting better and better,

Beautiful, beautiful,
Beautiful Boy,

Out on the ocean sailing away,
I can hardly wait,
To see you to come of age,
But I guess we'll both,
Just have to be patient,
Yes it's a long way to go,
But in the meantime,

Before you cross the street,
Take my hand,
Life is just what happens to you,
While your busy making other plans,

Beautiful, beautiful,
Beautiful Boy,

Monday, October 10, 2011

Here Comes the Sun

It's important for me to remember that yes, Charlie has a heart condition and yes, we have to be careful about things like getting sick, overexertion, and heart failure. It's just as important for me to remember that we are lucky, lucky, lucky to have such a beautfiul baby boy who is happy and content most of the time, sleeps through the night, and is a social butterfly. It's also just as important for us to get out as a family and do normal family stuff - like a trip to the pumpkin patch!

It's Thanksgiving here (us Canadians have it 6 weeks before our American friends) and after mounds of turkey and potatoes last night, we took a trip to the pumpkin patch today with some good friends. Cuteness abounds (see below for proof)! Charlie had a great time, and for the first time in a long time (be warned: upcoming cliche), the sun felt warm on my face and it was wonderful to be out in the real world. DCM crossed my mind while we were there, but I felt very zen about it. Charlie is doing well right now, and really, any of us could get hit by a bus tomorrow, so today is really all we've got. Heck, this minute is all we've got. For a while there (and I'm sure I'll slip back into this mindset from time to time), all of those cliches like 'food doesn't taste as good' or 'the sun isn't warm to me' really applied. Now, the sun is coming out from behind some dark clouds, ever so briefly, and I remember how lucky we truly are. This ismaking us better parents. It's not great, but it's alright.

Mummy and Charlie, today.

Charlie and his friend, Grayson.

Charlie enjoying his first sit in the hay.

Here Comes the Sun - The Beatles

Here comes the sun, here comes the sun,
and I say it's all right

Little darling, it's been a long cold lonely winter
Little darling, it feels like years since it's been here
Here comes the sun, here comes the sun
and I say it's all right

Little darling, the smiles returning to the faces
Little darling, it seems like years since it's been here
Here comes the sun, here comes the sun
and I say it's all right

Sun, sun, sun, here it comes...
Sun, sun, sun, here it comes...
Sun, sun, sun, here it comes...
Sun, sun, sun, here it comes...
Sun, sun, sun, here it comes...

Little darling, I feel that ice is slowly melting
Little darling, it seems like years since it's been clear
Here comes the sun, here comes the sun,
and I say it's all right
It's all right

Saturday, October 8, 2011

A Cheat

It's been a good week. Charlie is doing well. I'm waiting for the other shoe to drop, but right now, I am feeling as positive as I have so far. He seems happy, feedings are going well (or we've just gotten used to the 'new normal'), he is eating a bit of cereal, tummy time is going well, he can sit (!), he is napping well, etc. :)

This is a cheat. I wrote this about Charlie for Facebook a while back, pre-diagnosis, but for those of you who didn't see it, here it is. We just love him so much.

*Sunday, 8am update: other shoe dropped. Double barf. :(

I need to share something. Since I had Charlie, I've realized how much of who we are comes with us right out of the womb. I used to be one of those people who thought you learned everything from your parents ; I was the 'nurture' side in the 'nature vs. nurture' argument time and time again. How could your parents NOT completely shape who you are and who you've become? They are your original role models and, obviously, are the only people you really take after.

But Charlie shows so much of his own personality and person-ness already, and we haven't had any time to shape him yet. He's stubborn, willful, has a good sense of humor, likes to laugh, likes to sleep and other nuance to numerous to list here. He has personality twitches, too, like the fact that he wrinkles his nose when he starts to giggle, or that he smiles crookedly when he knows you're trying to be funny but he just doesn't get it. He observes everything. I can't believe how much of a person he already is. And to think we _all_ came out already people, already ready to's astonishing.

This is not to say parents don't matter - I think we're going to get to shape who Charlie becomes - in kindness, in generosity, in acceptance. We'll get to teach him to steer clear of silly things like cigarettes and dirt bikes, and more dangerous things like drugs and binge drinking. We'll get to help him become the best version of himself - but that self-ness is already there, just waiting to come out each and every day.

I don't want this to be some ramble about how amazing my child is. Matt and I have accepted that since we are very average people, the chances os him being an NBA star or being the next Bill Gates are pretty slim. But he'll be _him_, this brand new person we're coming to know and already love, and that is just so cool.

Tuesday, October 4, 2011

Fix You

We've had a few good days in a row. By 'good days' I mean Charlie hasn't barfed since Friday. Yep, non-barf days are good ones. The past couple of days, Charlie's had some trouble pooping, but with three big poops today I'm hoping the strain-days are over.
I've been meaning for a while now to write about the amazing staff at Sick Kids. We had the best nurses and doctors, I think, that OHIP could offer. Below, please find a small list and explanation of each person who touched our lives and affected us so greatly.

Dr. D. - Not to be confused with Dr. A., the moronic pediatrician, Dr. D. is our cardiologist. She is amazing. She is blunt without being harsh and, although sometimes lacking in true compassion, is always willing to listen to our questions and answer them fully without treating us like idiots. Her kids happen to be gifted and thus may end up in Matt's History classes one day, where they automatically earn a 90%.

Kristen & Judith - Our Nurse Practitioners (N.P.s) - Kristen is a lovely little sprite of a woman who makes up for the clinical atmosphere of the hospital (although you can't really fault them on that at Sick Kids, either - the whole place is built around kids, so it's not exactly 'clinical' feeling). She is compassionate, warm, and well-informed on all things cardio and cardiomyopathy. Judith is wonderful, too - she is also warm, compassionate and educated. She answers all of our questions and gives us information we ask for, even when we should't necessarily have it (i.e. last week's EF numbers). I think the role of N.P.s is to take what the doctor says, filter it down to you, and deal with the aftermath. They are there to deal with you on a human level - something that is greatly needed in time like this.

Shelley - my favourite nurse from the cardiac ward. Shelley is like a really nice, popular cheerleader. She has a way of treating Charlie that rivals mine. I'm pretty sure he smiled at her more. She is gorgeous and kind.

Mahalini - Another one of our cardiac nurses, I think Charlie liked her the best. I'm really bad with accents, so it took me a while to get to used to Mahalini's, but once I was used to it, she quickly became one of my favourites on the ward. She wears 'healing beads' and does juice fasts to cleanse herself, and Charlie loved all of her stories and her long, beautiful hair.

Karen - A night cardiac nurse when we were there, Karen look good care of all of us in the beginning days when we were learning about the meds, and the I.V., and the feeding tube, all without complaint and with patience. I appreciate her candor and upbeatness.

...there are too many more staff to mention, including a doctor we have yet to meet (Dr. G.) but have spoken to many times on the phone, and other nurses who have lent a helping hand or been there for the overnight shift. I appreciate all the work they do more then they could ever know.

Today's song is 'Fix You' by Coldplay, because that's exactly what the staff is doing for Charlie.

Fix you - Coldplay

When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse

And the tears come streaming down your face
When you lose something you can't replace
When you love someone, but it goes to waste
Could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you

And high up above or down below
When you're too in love to let it go
But if you never try you'll never know
Just what you're worth

Lights will guide you home
And ignite your bones
And I will try to fix you

Tears stream down on your face
When you lose something you cannot replace
Tears stream down on your face
And I...

Tears stream down on your face
I promise you I will learn from my mistakes
Tears stream down on your face
And I...

Lights will guide you home
And ignite your bones
And I will try to fix you

Sunday, October 2, 2011

Song for the hopeful

I was going to write an entry about the expectations we had for Charlie as he was born - we thought athletics were going to be a forte, swimming, lifeguarding, maybe some piano, definitely encouraging music in high school, or art, an early reader and good learner - and as I tried to start the post several times, I realized that the only thing that has changed in that list is the athletics. The kids can't play contact sports. Oh well. Our expectations haven't changed in that regard, I suppose, at all.

Really, by 'expectations', I meant that we assumed that Charlie would be around for as long as we were. Which, for any parent, isn't always a safe thing to assume. It's horrible to think about, but none of us know how long we are here for, or when we'll depart. I think it's the worst thing about life - not knowing when it's going to be over. I guess, though, that if we did know, life wouldn't be as much fun. Philosophically, perhaps it would be more fun - if you knew you weren't going to die bunggee jumping, maybe we'd all have more fun along the way. Specifically, near the end.

The hospital has warned us that they expect that Charlie will have to have a heart transplant at some point in his life. Now, I am hopeful that it won't come to that, but what if it does? The average life expectancy after transplant is 15 - 20 years. Then, you can have another or there might be some sort of new technology that is out by that point that will extend your life further. I wonder what will be around during Charlie's lifetime - the one drug he's on has only been recently approved in Canada, and in the UK it's known as a wonder drug. I hope (hope is an understatement) that during Charlie's lifetime there is a miraculous heart technology advancement. They can make phones that are as big as your thumbnail, but they can't fix hearts so they run for 100 years?

I know it's early, but I am beginning to grasp how important extending quality life is, and how important it is to enjoy each other while we're here. Don't worry, I'm not sinking into a pit of despair or anything - I firmly believe, in my heart of hearts, that Charlie is going to get through this with flying colours. But this situation has certainly got me thinking about life and death, time with family and friends, and what matters most. Forever, Charlie is what matters most, and spending time with him and extending his life is a newly found purpose in mine.

Lyrics to Song For The Hopeful :
(Harry Connick, Jr.)

People with hope
Have a special prayer,
A louder drum,
A brighter flare.
This is a song for the hopeful.
May God hear it sung.

People with faith
Are the lucky kind.
They'll be the ones
With peace of mind.
This is a song for the faithful.
May God hear it sung.

There's a song for the doubtful.
There's a song for the lost.
There's a song for the desert
Barren, but crossed.
But for those who are strong of spirit,
Maybe they don't need to hear it.
But still, a song for them.
A simple song for them.

Nothing can shade
A seasoned soul.
It's all the loss
That makes it whole.
This is a song for the hopeful.
This is a song for the faithful.
This is a song for the hopeful.
May God hear it sung.
May God hear it sung.

Thursday, September 29, 2011

I hate everything about you

What a stupid, corny, terrible song for my title today. But it's true when referring to DCM. I hate it. I can't believe I hate something so much that, 5 weeks ago, I had never heard of. The entomology of the word is: dilated (enlarged), cardio (heart), myo (muscle) pathy (disease). Ah, so there you have it! It's just a regular old enlarged heart muscle disease your child has. Plain as the nose on your face. I hate it, more then I ever thought I could hate something. I remember one of my grade-school teachers telling us we didn't hate anything, because 'hate' meant that you'd want to kill it. Yup, turns out 'hate' is just the right word for how I feel.

Today was a weird one. Charlie barfed this morning - a hot, upset-boy barf that wasn't fun for anyone. We had to drive for 2 hours, right after, to get to our appointment at Sick Kids. Charlie had blood taken and screamed but got over it quickly, so I see it as a success. We headed up to Cardio and fed him, and then saw Judith, one of our NPs. She's amazing. We weighed him (14lbs, 6.5 oz!) and took his pulse and blood pressure (both normal, hurray!). He hadn't had a nap yet and was getting pretty schitzy. My dad came with me today (Matt is saving his sick days in case of worst-case-senario stuff), so Dad took him while I spoke to Judith. Coles Notes version of that meeting: she showed us an x-ray of Charlie's heart and it's touching his ribcage on the one side. She said he's doing well considering his circumstances. Then, I asked a question. Sometimes I wish there was no Google and I wasn't so damn curious and inquisitive and research oriented.

Sometimes I wish I didn't need so much hope to survive this.

I asked her if we could have a specific number for his ejection fraction. I am an A-type personality and I need numbers to prove that he's getting better. When we first checked into the hospital, his EF was 'about 10%'. Now, they never gave us a specific number, so we have no comparison point. However, working with 'about 10%', his echo results from last week showed an EF of 17%. I had to ask to find this out, though, and Judith quelled my hope somewhat by saying that when an EF is under 20%, it can go up and down and that it's not stable. However, it is 'kind of' good news that it had slightly gone up.

I am struggling with this. I don't want to be too optimistic or too pessimistic, and it's impossible to find the balance between the two when you had to a)ask for the information and b)don't completely understand the information given. I don't want to have my hopes dashed at the next echo (two months away) and yet I don't want to see this as a non-moment. I just feel, in my soul, that this is good news. "Creeping upwards, never failing..." (Sidenote - isn't there a poem about that?). I just can't think that it's all bad news. So I am taking this as good news, for now.

I hate everything about you - Three Days Grace

Every time we lie awake
After every hit we take
Every feeling that I get
But I haven’t missed you yet

Every roommate kept awake
By every sigh and scream we make
All the feelings that I get
But I still don’t miss you yet

Only when I stop to think about it

I hate everything about you
Why do I love you
I hate everything about you
Why do I love you

Every time we lie awake
After every hit we take
Every feeling that I get
But I haven’t missed you yet

Only when I stop to think about it

I hate everything about you
Why do I love you
I hate everything about you
Why do I love you

Only when I stop to think
About you, I know
Only when you stop to think
About me, do you know

I hate everything about you
Why do I love you
You hate everything about me
Why do you love me

I hate
You hate
I hate
You love me

I hate everything about you

Tuesday, September 27, 2011

Good day sunshine

I'm sitting at our dining room table, relaxing with a cup of tea with the oldies station on, while Charlie sleeps and Matt reads a book. All very idyllic, if my thoughts weren't consumed by DCM and the constant worry that entails. I am trying to enjoy these moments, I really am.

Yesterday was a great day. Charlie ate a lot out of each bottle, ate all (!) of his cereal, and didn't barf. He hadn't barfed in a week! This was a new record for us. I should have known it was all going to go to shit the next day. I will say, though, that I am getting better at taking it day-by-day - I really did enjoy the good day while it lasted. I went to bed last night feeling at peace.

This morning, Charlie was still ok. Then, he didn't want his 11am bottle nor his cereal (he took two spoonfuls before making the adorable 'no thanks' face (posted below - you know that phrase about 'a thousand words'?). Then, he barfed. A small one, but still - I become so hopeful that he's going to keep everything down and use those calories. Once I got over the initial clean-up, though (this one didn't even require a change of clothes on either of our parts!), I realized that there were other reasons he might have gotten sick, including the tube going too fast, or the water we use to syringe the NG tube afterwards might have been to fast, or too cold, or both. In any case, his 3pm feed went well and the nurse who visited today says he's doing fine.

It's hard to take the good days with the bad ones. Obviously, I just want every day to be good, and maybe one day we'll get there. For now, though, I am willing to take the good ones with the bad no matter how hard it is - at least he is having good days! The first lyric of the below really speaks to me: "I need to laugh..."

**The 'no thanks face' is not a recent picture, so here are TWO pictures for your viewing pleasure - the second is our recent apple-picking adventure.**

"No thanks!"

Happy apple picker?

Good Day Sunshine - The Beatles

Good day sunshine
Good day sunshine
Good day sunshine

I need to laugh, and when the sun is out
I've got something I can laugh about
I feel good, in a special way
I'm in love and it's a sunny day

Good day sunshine
Good day sunshine
Good day sunshine

We take a walk, the sun is shining down
Burns my feet as they touch the ground

Good day sunshine
Good day sunshine
Good day sunshine

Then we lie beneath a shady tree
I love her and she's loving me
She feels good, she know she's looking fine
I'm so proud to know that she is mine

Good day sunshine
Good day sunshine
Good day sunshine
Good day sunshine
Good day sunshine
Good day sunshine
Good day sunshine
Good day sunshine

Saturday, September 24, 2011


Yesterday was a tough day, made tougher by the fact that I just wrote all this out and then when I went to get the lyrics to today's song, the entire post deleted itself. You just can't win sometimes, you know?

Anyways, I posted on Facebook that yesterday was hopeful. It wasn't - at least, I didn't really think it was. That post was more for the masses who I don't want worrying about me and I don't need writing on my wall "Is there anything I can do?". Because there isn't anything anyone can do, and that's what makes this entire situation so goddamn frustrating and sad.

So, Charlie had his echo yesterday morning and was a trooper throughout. They got all the pictures they needed. After, he needed to eat, which for anyone who knows the situation is not an easy or short process. After eating we met with the cardiologist (we have now been at Sick Kids for 3 hours or so, running on 5 hours of sleep) who told us that Charlie's heart is still 'really bad' (direct quote!) and that they haven't seen any improvement yet. I put 'yet' because they told us not to expect any improvement yesterday - it takes longer then that usually for the drugs to work. But, hope springs eternal, somehow, and we were hoping for miraculous results. The meeting with the cardiologist was a downer.

After, we met with the genetic counsellor, who explained the genetic testing process to us and got us to sign off on sending away Charlie's sample. Charlie's sample goes to Harvard (!) where 46 of his genes will be tested. The counsellor said that she does get quite a few positive results back, so that's sort of a good thing (I always think knowing is better then not knowing). If it comes back positive, then Matt and I have to get tested to see if we are carriers, which impacts future children. If it's negative, then it's called 'idiopathic' DCM, and that leaves everything up in the air. Either way, the results aren't something to celebrate - just more information to arm ourselves with. We'll her back in 3 months or so.

Lastly, we met with our dietician. We could have use a 'rah rah' sort of meeting, but instead it just seemed very blah - yes, he's gaining weight, he's kind of catching up, oh good he's taking some cereal - again, it seemed there was nothing to celebrate yesterday. And we need celebrations on a daily basis.

We also went to see friends of ours yesterday who just had a baby. It was tough, but in the vein of keeping this short (yeah right!) I'll save that for another day. The new baby is a little peanut and we just loved her.

Today's song is 'Yesterday' by the Beatles, for obvious reasons.

**Update: Today's celebration is that Charlie just ate 1.5tsp of rice cereal, seemed to want it (kind of) and has kept it down (so far). Small victories!**

Yesterday - The Beatles

All my troubles seemed so far away,
Now it looks as though they're here to stay,
Oh, I believe in yesterday.

I'm not half the man I used to be,
There's a shadow hanging over me,
Oh, yesterday came suddenly.

Why she
Had to go I don't know, she wouldn't say.
I said,
Something wrong, now I long for yesterday.

Love was such an easy game to play,
Now I need a place to hide away,
Oh, I believe in yesterday.

Why she
Had to go I don't know, she wouldn't say.
I said,
Something wrong, now I long for yesterday.

Love was such an easy game to play,
Now I need a place to hide away,
Oh, I believe in yesterday.

Thursday, September 22, 2011


I turned 30 a week ago or so. I was initially excited about turning 30, but Charlie's DCM really took over right before the date, so I ended up just looking at it as another day (one where I got presents, of course). I had a great couple of days (my birthday tends to turn into a week or more, because of all of the family and friend obligations we end up with. I am not complaining.). For my 30th, I decided I wanted a tattoo. I got one when I was 17 (it's a treble clef on my hip/butt area), but that was when I was still living at home and afraid of my parents. :) I decided I'd get Charlie's name because, after all we've been through so far, the kid's name should be inscribed somewhere on my body.

Matt bought it for me even though he isn't a huge fan of tattoos (he says he doesn't 'get them'). He says they remind him of death, because as permanent as we think they are, they are gone when we are. That gave me pause to think - my tattoo will only be around as long as I will be, so while it's permanent to me, I can see how Matt would think of it as being a reminder that at some point, he and I will no longer be here.

I digress - the point of this entry was to put up a picture of the tat, and just say that I am thrilled with it. This is something that I will always remember no matter what happens, and the tattoo is a physical reminder of the fact that we got through this together and intact.

Tattoo - Jordin Sparks

No matter what you say about love
I keep coming back for more
Keep my hand in the fire
Sooner or later, I'll get what I'm asking for

No matter what you say about life
I learn every time I bleed
That truth is a stranger
Soul is in danger, I gotta let my spirit be free

To admit that I'm wrong
And then change my mind
Sorry but I have to move on
And leave you behind

I can't waste time so give it a moment
I realize, nothing's broken
No need to worry 'bout everything I've done
Live every second like it was my last one
Don't look back at a new direction
I loved you once, needed protection
You're still a part of everything I do
You're on my heart just like a tattoo

I'm sick of playing all of these games
It's not about taking sides
When I looked in the mirror, didn't deliver
It hurt enough to think that I could

Stop, admit that I'm wrong
And then change my mind
Sorry but I gotta be strong
And leave you behind

If I live every moment
Won't change any moment
Still a part of me and you
I will never regret you
Still the memory of you
Marks everything i do

Just like a tattoo
I'll always have you

Wednesday, September 21, 2011

Turn Me Loose

As of the beginning of this post, I have yet to choose a song for the end of the entry. I want to post song lyrics with each blog post because songs seems to really be speaking to me these days - I feel like each song I hear is directly related to something I have thought or said in the past day or so. Like, right now I am listening to 'Turn Me Loose' on the oldies station - which is how I feel sometimes. Turn me loose from all of these health issues and let Charlie be better! Turn me loose! It's also applicable because, for those of you who did not see Charlie in the hospital, 'I'm gonna get a thousand kicks or kiss a thousand chicks' is applicable, based on his flirting skills with the female nurses.

I received some blogging advice from a close friend: "Keep it short". So, todays entry will not the Biblical-length of yesterday's. Also, don't expect me to keep up with this blog-a-day stuff, either. At some point, I might run out of things to say. (Really? Maybe not.)

Today's entry: Charlie continues to grow, day by day. This week, we're hoping for 14lbs. He was at 13lbs, 13.5oz on Friday, and has been keeping the feeds down fairly well lately, so it's an attainable goal. We've been in the 13's for SO long...since the beginning of July! I am sick of the 13's. Big time. Plus, it turned out that some of those 13's for a while was just liquid and not 'true weight', which is what the lil' boy is now putting on. He's getting a little Budda belly and dimples in elbows and knees. Even his face, which has never been gaunt, is looking fatter. He kept his chubby cheeks through all of this, which is both remarkable and alleviating. Thank goodness for the NG tube.

Charlie has an echo on Friday. I'm trying not to get too hopeful about it...its not one where they have prepped us for news, and our NP has actually told us it's just a 'checkup', and that it probably won't yield much. 'Probably' is the word I get hung up on.

In other food-related news that is a bit more current, Charlie ate some of his rice cereal this morning and seemed to enjoy it. He was semi-opening his mouth and took it like a champ. We are so proud of him for the most minor things - I now understand how the parents of the kids in my classes have felt. I never understood it until now.

Turn Me Loose

Turn me loose, turn me loose I say
This is the first time I have felt this way
Gonna get a thousand kicks or kiss a thousand chicks
So turn me loose

Turn me loose, turn me loose I say
Gonna rock'n'roll long as the band's gonna play
Gonna holler, gonna shout, gonna knock myself right out
So turn me loose (turn me loose, ooh-ahh)

I've got some change in my pocket and I'm rarin' to go
Takin' some chick-a to the picture show
And when I see her home and we kiss goodnight
Well, turn me loose, turn me loose, turn me loose, turn me loose

Turn me loose, turn me loose I say
Yes, today is gonna, is gonna be the day
I want you all to understand, now I am a man
So turn me loose (turn me loose, ooh-ahh)

I've got some change in my pocket and I'm rarin' to go
Takin' some chick-a to the picture show
And when I see her home and we kiss goodnight
Well, turn me loose, turn me loose, turn me loose, turn me loose

Turn me loose, turn me loose I say
Yes, today is gonna, is gonna be the day
I want you all to understand, now I am a man
So turn me loose (turn me loose, ooh

Tuesday, September 20, 2011

Someone like you

Since I put in my first post yesterday, I have been anxious to post again. Writing is cathartic. I figure I'll start off with the various 'stories' that got us here. First off: the how-Charlie-came-to-be-diagnosed story.

Charlie was never a good nurser. For all of my breastfeeding, La Leche League Big Talk before he was born, I was actually releived to get the doctor's go-ahead to start supplementing with formula at 3 1/2 weeks. At that point, we thought Charlie's issues all stemmed from a lack of breast milk production on my part (in hindsight, how Grecian of us to automatically think it's an issue with the mother). I was put on a pill to increase my lactation (a pill that makes you fat and unable to lose weight, by the way!), and we were off to the races. However, Charlie's problems (not wanting to eat, being a bit of a screamer sometimes) didn't resolved. He never seemed truly satisfied. He continued to gain weight, though, and so although we were starting to think something else was wrong, it was deemed 'just the way he is'.

At his four month appointment, Charlie weighed in at 5 ounces less then a week prior. Sensing some cause for concern, our G.P. had us back in two weeks later for another weight in, which was exactly the same. For those of you who don't have kids, this is not normal. Babies want to eat, and babies gain weight hand over fist. Our G.P. then sent us to a pediatric walk-in clinic to have Charlie assessed.

At the walk-in we were paired with Dr. A. (our tough luck, as it turned out). He 'examined' Charlie - listened to his heart for a second or two, didn't undress him, and listened to our story about how Charlie was acting - and diagnosed him with GERD (Gastro Esophagal Reflux Disease). We were prescribed a pill that usually works for kids with this issue.

Obviously, the pill didn't work. We then got a liquid drug. Didn't work (we are now on week 3 with Dr. A.). Then, it was deemed a 'milk allergy' (even though Charlie has NO symptoms of such an allergy) and a hypoallergenic formula was given. Didn't work. ANOTHER brand of hypoallergenic formula was given. See where this is going? Nothing worked. And even though nothing worked, Dr. A. didn't refer us to another doctor until we asked, and told us NOT to go to the hospital because they would just 'turn us away'. Charlie's situation wasn't 'unique enough' for the hospital. And Charlie continuned to just maintain his weight - over the course of 2 months, he gained not one ounce.

Well, 6 in every million turned out to be exactly unique enough for the hospital.

So, one regular Tuesday evening, at the end of our metaphorical ropes, Charlie had a really bad evening. Coughing, shortness of breath, crying, inability lay down...the stuff of nightmares. He was actually so exhausted that he was falling asleep in my arms and waking up to cough. We decided that night that the next morning we would leave early to get to the Hospital for Sick Children and get Charlie looked at.

For those of you who don't know me, I am not one to take bullshit. In hindsight, my mother has said she can't believe it took us as long as it did to get Charlie to Sick Kids. And now, knowing what we know, I find it incredible, too, that we waited as long as we did. Alas, hindsight is 20/20.

Once we got to Sick Kids at 7am, all it took was the emergency department doing a chest x-ray (something we had suggested to Dr. A., but were denied because it would 'expose Charlie to too much radiation' (what?!), and we were literally whisked into the wonderful, comforting arms that is Sick Kids. Blood tests, an IV, an EKG, and an Echo were all given before noon. We were in our room by 3pm, given a tour of the ward, met our Nurse Practitioners (NP) and our cardiologist, and the wonderful nursing staff. We got our diagnosis, we found our what the first course of treatment would be, and our parents came down. We accessed the wifi and emailed/Facebooked all of our friends who, by this point, were worried sick.

Not unique enough, eh?

There were a lot of tears in those first days - shock, disbelief, mourning and uncertainty. For me, it was mostly the uncertainty of what lay ahead - something I still struggle with, albeit less so. I am such a planner! It's not really a gift, after all. We are OK for now though - good days and bad days, taking each day as it comes - and our families and friends have been the greatest support we can imagine.

Today's lyrics are Adele's 'Someone like you', because when Matt was on his way home from the hospital on Day 2 to get us clothes and toiletries, he heard this song was an emotional moment for him. Just because it's sad and talks about losing someone - every time I heard it I think back to those dark first few days. It a romantic song, but some of the lyrics apply:

Someone like you - Adele

I heard that you're settled down
That you found a girl and you're married now
I heard that your dreams came true
Guess she gave you things I didn't give to you

Old friend, why are you so shy?
Ain't like you to hold back or hide from the light

I hate to turn up out of the blue, uninvited
But I couldn't stay away, I couldn't fight it
I had hoped you'd see my face and that you'd be reminded
That for me, it isn't over

Never mind, I'll find someone like you
I wish nothing but the best for you, too
Don't forget me, I begged, I remember you said
Sometimes it lasts in love, but sometimes it hurts instead
Sometimes it lasts in love, but sometimes it hurts instead

You know how the time flies
Only yesterday was the time of our lives
We were born and raised in a summer haze
Bound by the surprise of our glory days

I hate to turn up out of the blue, uninvited
But I couldn't stay away, I couldn't fight it
I had hoped you'd see my face and that you'd be reminded
That for me, it isn't over yet

Never mind, I'll find someone like you
I wish nothing but the best for you, too
Don't forget me, I begged, I remember you said
Sometimes it lasts in love, but sometimes it hurts instead, yeah

Nothing compares, no worries or cares
Regrets and mistakes, they're memories made
Who would have known how bittersweet this would taste?

Never mind, I'll find someone like you
I wish nothing but the best for you
Don't forget me, I begged, I remember you said
Sometimes it lasts in love, but sometimes it hurts instead

Never mind, I'll find someone like you
I wish nothing but the best for you, too
Don't forget me, I begged, I remember you said
Sometimes it lasts in love, but sometimes it hurts instead
Sometimes it lasts in love, but sometimes it hurts instead

Monday, September 19, 2011

Charlie's happy heart?

I know, it's a weird title for a blog about a boy with a heart disease. I struggled over what to name the blog, and in the end decided on 'Charlie's Happy Heart' because he really does have a happy heart in the truest sense. He is a happy boy. The nurses and doctors at Sick Kids have told us time and time again that they have seen children with better heart function who are doing much, much worse. Matt and I love Andy William's song 'Happy Heart' (lyrics at bottom) and it's just such a fitting tribute to Charlie's daily demeanour.

For those of you just joining this party, Charlie (my 6 month old son) stopped eating well at around 4 months. He went to a paediatrician who misdiagnosed Charlie's condition 4 times before, after a night of endless coughing and crying and inability to catch his breath, we packed up the car for the Big Drive into the City, and took him to the hospital. It just so happens we live near-ish to the best children's hospital in Canada, one of the best in the world.

There, they did a simple chest x-ray (that's all it took, folks!) and fairly immediately admitted us and diagnosed Charlie with Dilated Cardiomyopathy. DCM is a disease that, for Charlie, affects his left ventricle, which does not pump efficiently. An average 'ejection fraction' (the amount of blood you take in versus what your heart can pump out) is about 60% - Charlie's is about 10%. It was a scary, scary day, and one I'm sure you'll hear about in upcoming posts.

That was three weeks ago. Since then, Charlie has been put on a protocol of 4 different drugs, which he may or may not be responding to. It's unfortunately too early to tell is anything is making a difference. He has an echocardiogram (echo) scheduled for Friday, when we may or may not learn more. He has a nasogastric feeding tube (NG tube) and gets some of each of his feeds through it (he becomes too tired to eat, or too uncomfortable, and refuses about half of each bottle). He is a charmer, a flirt, and fairly intelligent from what we can tell. He is meeting his developmental milestones at the late end of normal (we'll take it!) and we love him, love him, love him.

Thanks for reading this first post. I'll post about good days, bad days and exciting trips to the hospital. It's just my way of sharing this adventure.

Happy Heart, by Andy Williams

There's a certain sound always follows me around
When you're close to me you will hear it
It's the sound that lovers hear when they discover
There could be no other for their love

It's my happy heart you hear
Singing loud and singing clear
And it's all because you're near me, my love
Take my happy heart away
Let me love you night and day
In your arms I wanna stay, oh my love

Feeling more and more like I've never felt before
You have changed my life so completely
Music fills my soul now, I've lost all control now
I'm not half, I'm whole now with your love