Hunkering down

Little Miss Frosty.

She's a jolly happy soul 😀

Well, suddenly it's winter...

So it's time to turn over a new leaf, and say goodbye to another season.

We're going to miss that perfect walking weather. Not too hot or too cold, but just right.

Fall is a great time of the year, huh? And Halloween was a lot of fun, but it came as quickly as it went. 

Now we enter cold and flu season. Germ season. Where parents like us become a-little-too-over-protective season.

Cold and flu season is an anxious time for preemie parents. My heart goes out to all of them because I understand the fear and worry.

Last winter, Arabella was extremely high-risk. So high-risk, in fact, that she qualified for Synagis (RSV) shots. The shots provide antibodies to help boost a preemies immune system so it can fight a viral infection, but they are insanely expensive (at $1000+ per shot) and only the most fragile infants qualify. Last year Bella received over $5000 worth of shots, can you imagine? But this year she didn't qualify, and that's okay, since there are other little ones that need the drug more. 

RSV is serious. It's the most common cause of pneumonia and bronchitis in infants. Just imagine how it might affect a premature infant with heart and lung conditions. The craziest part is that the virus causes only mild cold symptoms in healthy people. What would give me a slight cold or a runny nose might end up putting my daughter in the hospital, and Kiera and I never want to go back to that reality again. 

Arabella says, "See you guys in the spring", because we're officially hunkering down.

Even though she's stronger this year, she's still very vulnerable, and Kiera and I are trying to do the best job we can without losing our minds. We do what's necessary. We wash our hands often and we try to be mindful of germs in public places. We all take extra vitamins, and do all the little things to try and minimize Belle's risk.

It's not always easy. Sometimes it means saying "No" to certain people or events. 

Meanwhile, this girl continues to grow and flourish. She wants to be a big girl, and she wants to do BIG GIRL THINGS. 

She stands, she squats, she even cruises around...

She pulls herself up and let's herself down...

In a few months, she'll likely be walking by herself.

And she's getting smarter and smarter with each passing week.

"Arabella! Get down! Sit on your bum, please!" says Mom. Bella does what Bella wants, it seems.

All laughs aside, this girl's health is our #1 priority. We're not taking any chances this winter, so we're settling in for the long haul. We're getting comfy because it's going to be a long winter ahead!

Seasons of change

Arabella loves the outdoors. 

And I love watching her experience it all. 

To her it must seem like such a world of wonder...

The changing colours of the trees. The bright blue sky above. The feeling of a cool wind, or the sound of leaves beneath her. Crunch. Crunch. Crunch!

She's changing so much with every season... 

And every seasons brings new hopes and challenges.

There are a lot of good times, and there are stressful moments, too...

But as long as we're together we can get through it. And we do!

We all lean on one another.

Without a doubt, it's a beautiful life with Arabella. She forces us to take a step back. To slow down and relax. To appreciate. 

I find myself being a kid again. Living in the moment, having more fun, and not worrying too much about the superficial. 

Arabella has changed my outlook in so many ways. 

I only care about the big things now. The "real" things in life. There's no room for time-wasting, or doing things simply to keep up appearances. And I'm in no rush to do anything, or go anywhere. Ever. 

I only have one mission, and it's to devote as much time and energy as I can to this little girl. I want to squeeze everything I can from each and every moment, before it's too late. 

Ever since she was born, something inside me said, "Give everything of yourself to her. Don't even waste a minute, because nothing is guaranteed in this world."

This girl is getting bigger every day. She's changing right before our eyes...and I don't want to miss any of it.

Every minute, even in silence, is precious. I'm constantly reminding myself that there are only so many years left where I can hold her like this.

And when she grows too big for me to hold her in my arms, hopefully she'll hold onto my hand for a little longer, at least.

Then one day she'll have to let go of my hand, too. 

And it's going to be alright. I'm going to be ready for that, and I'll be okay with it, because I know I've given her every bit of myself that I possibly could.

I live for this girl. I live for my family, and for my closest friends. And it took a life-changing experience to realize this. 

Time is precious, and it waits for no one. That's why we have to do our best to squeeze these moments, and hold onto them as long as possible.

Hold them. Own them. Cherish them.

Let's give thanks

We hope everyone had a happy Thanksgiving. Warm wishes from our family to yours! 

We couldn't have asked for a better Thanksgiving. And what a beautiful (and colourful) time of year!

There are so many blessings for us to count. But there's one little blessing in particular that is at the top of our list...

Maybe you know her? 😄

Family, friends, and good health are the biggest blessings we can receive. 

Everything else is just a bonus, isn't it?

Being together around the dinner table was probably the highlight of our Thanksgiving. 

Last year we were too paranoid to have Arabella out and about (due to cold and flu season, and her weakened immune system, etc) but this year we couldn't simply leave her at home. It wouldn't be the same without her!

She's a funny little turkey, isn't she? And did you happen to notice the 'fall' tree? That idea is all Momma...because she's crazy about decorating 😀

So as the leaves fall, and the weather continues to cool...let the blessing of family and friends keep your heart warm.

Sending our love from across the miles...
Dan, Kiera & Arabella 💜

G-tube upgrade

As most of you know, Arabella doesn't really eat orally. She only takes tiny licks and the smallest bits of mashed food. She's had a feeding aversion for the past year, and because of that, she relies on her g-tube for roughly 98% of her nutrition. 

She's had this g-tube for the last 5 months, and I have to tell you that it's been the best decision we've ever made. If there are any parents out there that are considering the g-tube for their child, I would encourage you to get this done as soon as you can. The NG tube (via the nasal passage) will only hinder your little one. Don't waste a single day!

Having the g-tube eliminated Bella's reflux issues immediately, and that alone has made a world of a difference. Bella eventually started moving around more on her tummy, and she even started to take little bits of food by mouth (something she never did with the NG tube)!

The g-tube sticks out of her tummy, which isn't ideal, but it's the standard g-tube that most patients receive for their first procedure. After a few months, patients are then able to go in for a second procedure for a different, more low-profile g-tube.

So on August 30th, we went back to Sick Kids in order to upgrade Arabella's g-tube. It was out with the old, and in with the new! 

She was a very brave girl. Bella's used to these things by now, I suppose, and so are mom and dad!

These are the latest in g-tube technology. The AMT miniONE balloon button. They're pricy (at $300 per button), but they're said to be the most low-profile and comfortable buttons ever made. We chose this one over the MIC-KEY button, since these are said to irritate the skin less and create a better seal outside of the stomach (due to the apple shaped balloon). 

We're advised to change buttons every 3-4 months (something we can do ourselves), and once a week we simply check to make sure the retention balloon is filled with enough water. 

Arabella gets her blended diet administered through an attachment tube, and in less than 30 seconds she's fed and back to playing and moving around. 

We never expected Bella to have a feeding aversion, and at first it was a tough pill to swallow (pardon the pun), but getting the g-tube has made the biggest impact on her growth and development. So even though she doesn't eat very much by mouth, she gets real food in her blended diet, and it gives her the strength and energy that she needs. 

Bella gets things like chicken, eggs, almond butter, yogurt, avocado oil, and an array of fruits and vegetables in every batch. She can't taste it anyway 😄 so all we have to worry about is how much nutrition and calories are packed into every feed (which Kiera blends fresh every morning). 

Currently Arabella is 16 months (corrected) and weighs 16lbs (7.2kg), but with the help of the g-tube and a blended diet, she's on her way to catching up to her peers. 

Videos from August

Here are a few videos of Arabella from August...

I don't know why, but my favourite thing is when she pretends to be a dog (barking at the kitty) 😂

She tries to copy what we say...

And loves playing peek-a-boo!

Homecoming anniversary

August 12th marked one year since Arabella came home from the hospital. ONE YEAR! It's one of those days we just can't help but celebrate!

Bella says, "Thanks to your guys' love and support, we managed to get through the toughest time of our lives!"

The hospital life wasn't easy, but it taught us how to appreciate every single day that we're together. It showed us how not to sweat the small stuff, and made us appreciate everything we have.

Family. Friends. Togetherness. This is what life is really about.

We'll likely celebrate her homecoming for years to come, if not forever, because it means the world to us. It's the day our little family started to feel...well, normal. 

It's hard to describe the feeling.

How has it already been a year since you came home, Arabella? 

And now you're crawling all over the house, throwing your toys around, talking, babbling, and even yelling at your mom and dad...

You're making a mess of this place, Arabella, but it's so good to have you home. And as long as you're in our life, there's nothing else that matters more to us.

Life is good when we're all together...