Charlie's Blog

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

Friday, October 2, 2015

Summertime, and the livin' was easy...

I miss the summer already. Everything is in full swing now - Matt's back to work, Charlie has started JK and Elizabeth and I are into a (mostly) nice little rhythm at home. But the summer was so lovely even in its tumultuous moments, I can't help but miss it immensely. It serves to remind me how lucky I am to be a teacher who is married to another teacher!
We spent a week with lovely friends in a beyond-our-dreams cottage on the Muskoka River. Charlie had a great time swimming - he certainly overcame some fears while we were up there and Matt and I could see the benefit of cottage life for kids. The friends we were up there with were family already and this trip only strengthened that bond. We were planning futures trips by mid-week. I cried on the way home because I didn't want to leave.
We also went to another cottage. Our friends Tom and Leanne have their own up in Bracebridge, and we are lucky that they are kind enough to invite us up for a few days each summer. It is the PERFECT spot to visit friends who like your kids - they have a bunkie, a main cottage, a boat. And a dog, Satchmo, who is one of Charlie's favourites (Leanne was Charlie's daycare provider, and will be Elizabeth's next year).
We also went to the CNE, the Aquarium, a Blue Jays game, Matt's parent's place, my parent's place, the library, parks...the list was seemingly endless. The summer seemed to LAST this year, even though we did so much and had so much fun.
I was anxious for Charlie to start school, though, so even as our wonderful summer ended, I was glad to get back into everything. He has mostly transitioned well. There were a few tantrums from sheer exhaustion during the first week (my personal favourite was when he started crying because I couldn't get a cricket to sing in the garage...) but he is doing better now. He LOVES school, even though he has spent some time in the Thinking Chair - for touching the girl's hair who sits in front of him at carpet time. I couldn't get mad at him, even though the Thinking Chair is a Big Deal in Kinderworld. I just couldn't.
Elizabeth is a Dream Baby, still. She had a few rough days this week for whatever reason (It's teeth! No, she's growing! No, it's a cold! Maybe it's a developmental leap!) but she seems to be back on track. She's beautiful and charming and adorable. And all mine.
I have been working out and cooking (see how those are related? ;)). I have lost 20+ lbs of the baby weight so far and have about 7 more pounds to go. I had a LARGE piece of cake to celebrate tonight, so maybe I have 8 to go now. Whatever. My jeans fit! Big plans for a fundraiser once I'm ready to truly start training. I'll save that for the next post.
I'll leave you with some photos of our summer. Love, love, love my little family. We are so incredibly lucky.
Walking in the woods.

Charlie's Huck Finn impression

Days at the park

LOTS of fishing!

Trucks in the sand.

A baby pike I caught.

Santa's Village, Bracebridge

Matt & Elizabeth hanging out.

The Butterfly Conservatory, Niagara Falls.

Beaching in the backyard.

Charlie the soccer star.

We grew tomatoes, which Charlie was obsessed with picking but would not eat.

More fishing...

...and boating.

Matt made that bench with Tom! At Picnic Rock. 

Charlie, Auntie Leanne, and Satchmo.
At the Jays Game!

*sigh* And JK begins.

Charlie is ready for Elizabeth's baptism!

And so was Elizabeth. <3

Wednesday, June 17, 2015

"What do you mean, normal?"

1.usual; normal; customary: to put something in its regular place.

Last Friday, Elizabeth had her follow up echo at Sick Kids. I was concerned about how she'd do since they weren't sedating her and she is now a wiggly almost-four-month-old, but (of course), I needn't have been. It's become a running joke in our house how perfect a baby she is - she will actually tell you when she needs to sleep (growly sounds) or eat (whiny sounds). And other than that, she just quietly sits and obsess the world. She's amazing.

So, Sick Kids. We arrived, checked in, had her ECG done and headed into echo. It was fairly quick and she did well, laying there sucking her thumb and listening to me sing for most of it. Matt and I had a very interesting chat with the tech who was on exchange from Ethiopia. After, we waited over in good old 4A until Kristen came to get us.

Both Matt and I are pretty sure she tried to play it cool until we went into the room. I was super nervous and sat down, at which point Kristen says "So, her heart is normal." Matt and I just sat in stunned silence, to the point where Kristen says "Can I get a yahoo?". We were so bad at taking good news - bad news, we're experts. We immediately come up with questions and know what to say and do. Good news, we just sat there looking awkward and confused. I honestly said, "What do you mean, normal? Like, normal-normal?". Talk about PTSD.

But that's the news. Her heart, under the support of medication, is normal. Elizabeth will go back in 6 months for another echo and then perhaps go off the medication. Or not. Whatever.

It really made us think about Charlie and whether he would have done much better had he been diagnosed earlier. Surprisingly, that thought didn't make me bitter or angry...just food for thought. He was much sicker than Elizabeth from the get-go, though, so while he may have been better off than tube-in-the-nose, weeks-away-from-complications-including-death sick, I still think he would've been sicker.

Elizabeth and Charlie are joys and I'm glad we don't have to persevere through the mess we had with Charlie on the second time around. Thank goodness for Sick Kids and the great work they do.

Wednesday, May 13, 2015

Baby, baby

Just a quick update to let you know that Elizabeth continues to grow and be the most wonderful baby ever. There, I said it. I think that every time I tell someone this, I jinx myself and she'll 'turn' on me like a bad bag of salad. She IS so lovely...sleeps, eats (a ton! What a relief/change!) and is really well-tempered. It's great.

Our next echo is June 12th, at which point Sick Kids can assess what our next turn is - adding or switching medications and what her heart is responding to. I don't know what to expect that day - sedated or not, results, etc. - but we are always hopeful for good news.

Charlie is still...adjusting. I've heard it can take a year. Speaking of which, Matt and I have decided to take Elizabeth to Bora Bora for a year. Any takers on our remaining child? Kidding. Kind of.

This comic basically explains our life. Thanks to the illustrator (this was uncredited on the source I found it on):

Sooo...yeah. We love him all the time. We like him...most of the time.

Here are some adorable shots of various family members! Enjoy! Know we are well.

Charlie and Elizabeth hanging out.
Charlie got his 4-year shots. Tough guy!

Elizabeth looking like the future rugby player she is.

Matt, Charlie and Elizabeth having a visit.

Me, drinking champagne (oh, how I've missed you!) and having a Dorito. Stay classy!







Sunday, April 12, 2015

Sometimes bad things happen to good people.

Elizabeth's genetics came back. She has the exact same DCM-positive genetic markers as Charlie. This was a tough blow but ultimately a good thing to know. And it was completely unexpected.
It is pretty interesting that two children who have the same genetic abnormalities could react so very, very differently. Charlie never ate well - Elizabeth can't seem to get enough. Charlie was pale, although smiley - Elizabeth is very pink but serious. Charlie cried a lot - Elizabeth almost never cries (unless she is hungry). They could not be more different. If Elizabeth had been our first child, we never would've suspected something was amiss up to this point, and looking back on Charlie, the heart condition was more obvious from the start.
The genetic-Coles-Notes is this: I carry a mutation on my VCL gene. Mutations on this gene have  been linked to cases of DCM, although my particular mutation hasn't been seen before. Matt carries a mutation on his DSP gene. Mutations on this gene have been linked to both DCM and been seen in the healthy population, which means the scientists aren't sure of the importance of this gene. My VCL mutation is theoretically enough to cause DCM, but my heart is (so far) totally fine. The theory we've been presented with is that it is the combination of these two genes in our kids that gives them DCM. Because each parent has a pair of each gene but only passes on one copy, there was a chance either child could have inherited a healthy copy of the gene (i.e. they get my DSP instead of Matt's; or they get Matt's VCL instead of mine). Apparently, both our kids lost the genetic lottery.
This means that Elizabeth has officially been diagnosed with DCM, which is both immensely frustrating and a relief. At least we aren't in limbo but goddamn, this sucks. We are remembering how sick Charlie was, combined with the fact that he didn't have to have a transplant even though he was that sick. But each child is different, so while Elizabeth is doing better now it doesn't take much to start thinking about whether she'll continue to be different in a good way, or if we will see her eating drop off and go down a different (worse) route than Charlie did. I've always said I don't know how people do it when their kids have had a transplant, and now that is a possibility again.
The one thing I am really glad about is that we didn't have the early genetic testing done. We would've had these results at the beginning of the pregnancy and it would've just contributed to the rest of it being even more stressful. And it wouldn't have changed the outcome of the pregnancy at all, even with all my tough talk. 
We'll just keep living day-to-day, as everyone does. I friend of mind recently wrote in an email that it was unfortunate that DCM has 'stolen that newborn glow' from us again. I decided that while I had been letting that happen, it was going to happen no more. I have really been enjoying Elizabeth and we'll get back on that train once this news sinks in. She's our beautiful girl - crappy heart or not - and we knew that was a risk. We'll help her ride out the consequences and do our best for our little family. 

Charlie snuggles his sister.

Hangin' out with Dad, football-style. 

Friday, March 20, 2015

Double Duty

I say this every few times I post, but I really didn't know so many people read this blog and were interested in how Charlie and us are doing. It warms my heart/makes me feel awful that so many people read this, and that I don't post often enough! So, tonight, a double update. First, Elizabeth's arrival:

Should have been posted:

March 3rd, 2015

Seven days ago, Elizabeth Leslie Thomas entered the world. The birth did NOT go as expected but I am super glad it went the way it did. I was induced the evening of Monday, February 23rd and by lunch on the 24th I was in full active labour. You know what's not fun? Having contractions in a car. I'm sure there were quite a few people who saw me grabbing the 'oh shit' handle of my Elantra as Matt drove me to the hospital, pressing my sweaty head against the cold window, who thought I was in the DT's from being a heroin addict or something. Got to the hospital, checked in, asked for my epidural. Seriously, that's how it went. Laboured a while longer, asked for my epidural AGAIN. The anesthesiologist was assisting in a 'complicated birth' (ohgodohgodohgod) so he'd be at least 45 minutes. 45 minutes later I asked again (how did I know it was 45 minutes later? Because there was a huge clock on the wall, allowing me to know EXACTLY how long each excruciating contraction was lasting. Lucky me.) and was told he'd be another 30 minutes. At this point, I looked at my nurse and said 'I'm not actually getting an epidural, am I?'. She assured me I was.

I was not.

At 3:20pm, I had two really intense contractions and my brilliant nurse decided to roll me on my side, lest the baby be stuck under my pubic bone. Sure enough, I rolled over body decided that was the moment Elizabeth should start making her exit. She was born at 3:34pm after 9 minutes of pushing. To look back on Charlie's birth, this could not have been more different (epidural/no epidural; laboured for 24 hours/laboured for 3; pushed for 3 hours/pushed for 9 minutes...). I was so irritated at the time that I was in that much pain, but in hindsight it was a blessing. I recovered so much faster, felt better directly afterwards and am proud of myself for completing it (like I had a choice).

Elizabeth was 9lbs, 2oz, and came out covered in goo. Evidence:

Goo-covered baby Elizabeth.
 I spent two days in the hospital and headed home.

These few few days have been lovely. She eats like a champ (although it bothers me I don't know how much she's eating...left over PTSD from Charlie's condition), sleeps well, only cries when she's hungry, and is generally very affable and amenable. She gained a few ounces in the first week home and I am enjoying her so much.

I honestly can't imagine she has DCM. Charlie was a crier from the get-go, as we remember. Elizabeth just seems so...normal! We have an appointment for an echo on Friday at Sick Kids, so we will see then how her heart is doing. Genetics don't come back for several weeks but an echo will give us a good first look. Fingers crossed.

Family minus one.

Falling in love.

Charlie was thrilled with his baby sister. Elizabeth was less happy with this pose.

Echos in the dark.

Now, today's news:

Unfortunately, all has not gone to plan. Two weeks ago, Elizabeth's initial echo showed that she had 'low normal' function, which was a concern. Had it not been for Charlie's condition and our genetics, Sick Kids never would have even looked at Elizabeth, and her low normal function would have remained her secret until it either resolved itself or she went down the path Charlie took. Our cardiologist asked us to come back for a follow-up in two weeks, which took place today.

Two weeks ago, as I said in my previous post, I was not at all prepared for Elizabeth to have a less-than-perfect heart. She was acting so much better than Charlie did at first - like a normal baby! - so when Dr. D. said her echo wasn't normal, I fell apart. 12 hours of crying ensued...and then I got my shit together and got on with life. I started assuming that yes, Elizabeth has DCM and our second child lost the genetic lottery as well, but that in two weeks we would see what the follow-up held. Worse case scenario, she is on medication like Charlie was only she never has to get as sick as Charlie to get a diagnosis and medication. I will not be caught unprepared like that again. I'd rather think of the worst and hope for the best, with no actual expectation of the better of the two options coming true. Turns out, it was good to abandon hope of a discharge from Sick Kids (but not abandon hope of Elizabeth's story turning out well, as I not only hope but insist be true).

At the follow-up today, her heart function was exactly the same as it was two weeks ago. 50%-ish (58% is in the 'normal' zone). Our nurse practitioner has put Elizabeth on a medication (one of the two Charlie was on from diagnosis onwards) with the thought that being proactive is better than having her heart decrease function and have to fight to get it back. This medication should stabilize her and help her heart - which looks completely normal as there is no dilation, unlike Charlie's heart from his x-ray at admission - gain some function over the coming few months. She'll have another echo in 3 months and some decisions will be made from there.

Charlie's heart upon admission. Elizabeth's heart LOOKS normal; Charlie's clearly did not.

We are feeling OK about this news. While it was not what we were hoping for, Sick Kids is on top of the situation, they are being proactive and there is no reason to suspect Elizabeth won't respond the same way Charlie did, in a completely positive way. That said, there is now the worry of heart transplant if she doesn't respond to the medication among other worries about her mental health as she grows older and the possibility of the medication becoming less effective over time. It will take some time to sink in and Matt and I are always waiting for the other shoe to drop - to have her energy decrease, to have her suddenly start eating less, to see her colour go from pink to white to grey, as Charlie's did. Heart Warrior parents often suffer from PTSD (I'm not kidding, unfortunately) so anything Elizabeth does that reminds us of Charlie's pre-diagnosis behaviour sends us into a tailspin. For now, though, our beautiful baby girl is sleeping after eating more than any 3-week-old should be able to, happy and pink and healthy and followed.

I'll update again after the genetics come in, which is the next interesting step. They are expected the second week of April. Thanks for reading. xo

Our princess (I'm aware this picture is ridiculous, but I still love it!)

Charlie on left, Elizabeth on right. Siblings much?

Monday, February 2, 2015

Almost cooked.

Just sitting here at the kitchen table with Shark Charlie, who is eating go,dish and cream cheese for breakfast (he did have a 1/4 croissant with Nutella, banana, raspberries and some old cheddar first. No one is nominating me for mother of the year for Charlie's eating ha it's, trust me.). ;) There is a lot of crunching and shark noises happening. We are currently obsessed with the Octonauts (SO MUCH BETTER than Toopy & Binoo) so there is a nautical theme to home life right now.

I figured I should do an update pre-Bop because who knows when I'll have time after she arrives? I'm hoping to update more, but than I've promised that before and we all know how that's gone. I've been home for more than a month already and am just getting to this now, and really only because Charlie's breakfast is taking forever.

So, I'm 38 weeks pregnant. I alternate between a few days of feeling OK (I can sit comfortably, sleeping isn't a total exercise in futility, I'm not a grumpy, patience-less asshole) to the opposite of all those things. On those days, I'm a real treat. Matt and my family are doing a good job is putting up with me. I save all my patience for Charlie, who gets what little I've got. He is being a general champ, although mostly that's because he is home with Mummy and doesn't have a clue what's coming next! :)

Bop is being good so far. She's quiet at night which gives me some hope for her schedule once she's born - Charlie was almost completely backwards for sleeping, which would equate absolutely no sleep for me if Bop was a repeat.

I sometimes think I should be filled with anxiety and guilt about Bop's upcoming diagnosis, but I'm not. I don't know if it's an avoidance thing in my brain or what, but neither Matt nor I have really thought much about the possible DCM diagnosis. I guess we figure if it happens, it happens, and until we meet Bop, we won't have a clue. I'm more concerned about overreacting if Bop isn't a good nurser immediately, or if she has some other normal-baby behaviour that I equate to her having DCM. The last thing one needs in those first few weeks is additional, self-inflicted stress. But we shall see.

Believe it or not, I'm more nervous about the birth! I have this nightmare that is ends in a c-section even though I had Charlie the regular way. It didn't help that I had a co-worker that that happened to. Who told me about it. In graphic detail. :*(

Charlie continues to do well. He's even been eating pretty well with limited help from us. We're pretty sure he's growing - he is definitely over 3' finally, so that was a nice milestone to pass. He starts school this September and is very excited about it. He calls school his 'job'! (Thanks, Matt).

I'll update hopefully once Bop is out. I'm hoping to do an update fairly soon after Bop is born, including pictures. After all, they do have wifi in the hospital. ;) Until then...

Charlie stuffs his face with popcorn
Making chili with Dad

Snuggling with Buddy