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...

Baby on the move!

She finally did it! 

During the last few months we saw lots of bum scooting, rolling around, slithering on her tummy, and then suddenly we saw Arabella crawling!

After her g-tube surgery, Arabella became so much more mobile. She started to throw herself backwards and forwards, and we had to constantly catch her or surround her with pillows! Then we placed some squishy foam underneath the carpet in an effort to be more hands-off. That way, Arabella could start to explore by herself. And explore she did!

She would fall down, she would get frustrated, but now she's taking her first steps to independence. 

Great job Belle! 😀

Summer of Bella

Summer is here, and it's been hot, hot, HOT. Lots of sun, and sometimes lots of humidity. We've had to be extra careful with Arabella because of her lung condition, but it just means limiting our time in the heat. 

And keeping her cool, and in the shade!

This is the summer of Arabella...

We've been going out everywhere with her. Visiting friends, family, going on walks, going to parks, pools, trails, beaches - you name it...

We're taking advantage right now, and going out as much as possible, because come October we'll close ourselves off again for cold and flu season.

But for right now, we're really enjoying ourselves, and Bella has been a lot of laughs. 

I've told you guys before that she points at everything she finds interesting. That finger is her main line of communication 😄

She makes a lot of faces, and she grunts and groans when she's not happy. 

Momma will tell her "No, no, no!" and wag her finger at her, and Bella will shake her head and wag her finger right back at Momma. 

She gets excited when she sees a phone or iPad. She wants to tap it and swipe it, knows how to access the phone's camera, and gets upset when we take it away, or tell her NO. 

"Here we go with the iPad again", we tell ourselves. So now we hide it and keep it out of sight. 

Bella loves to take selfies of herself, and after a few minutes it's not uncommon to find 50 pictures of herself in the camera roll, like this one:

She's turning into quite the big girl, with an even bigger personality... 

Her hair is getting longer, thicker, and lighter. Her features are changing right before our eyes...

Arabella's also made great strides with her mobility this summer. She has no problem sitting on her own, moving and scooting around on her bum, and recently she's learned to shift herself from sitting into the crawling position. 

She's so proud of herself. And we're really proud of her!

Can you tell that she was once a micro-preemie? I wonder what people think when they see her...

Arabella's been doing so great, and developing so wonderfully, that I'll have to write a separate post about all of the things she can do.

Baby, you're a superstar! 

Daddy's girl

It's great being a father to this little princess. Every day brings so much joy. 

Smiles, and smiles, and smiles...

A few weeks ago it was Father's Day.

It felt very different from the first one. This one felt right. Away from hospital walls, this is how it was supposed to feel, I suppose. 

Comfortable. Intimate. Worry-free.

What more does a dad need, than to have his girl by his side? She is the best gift I can ask for...

Each and every night, when my head hits the pillow, I tell God "thanks" for another amazing day, and I realize how lucky I am to have her in my life. I'm lucky to experience her love and laughter, and it's so much sweeter because I know how different things could have turned out. 

I can't imagine my life without her.

As soon as I come home from work, that smile greets me at the door and those little hands reach up to say, "Take me Dadda."

If that's not the best feeling in the world, then I don't know what is...

One year celebration!

Arabella's birthday fell on February 17th - during the tail end of winter. It was unpleasant, chilly, and more importantly, it was still cold & flu season. Having a big party wasn't worth the risk. 

"We'll have a real birthday celebration when Arabella turns one year corrected", Kiera and I thought. The weather will be nicer and we can have everyone outside for some drinks and barbecue. 

Well, that day finally came...

Arabella turned one year (corrected) in mid-May. It was her 'should-have-been' first birthday, so we sent out a few invitations to our family for early June.

Finally! Let's all celebrate! 

We were so excited to have our family over. Some of them haven't seen Arabella since she was in the hospital, so a gathering like this was very much overdue. 

And Bella was thrilled to be the centre of attention!

Last year we couldn't imagine having so many people around Arabella. We were scared to let anyone else touch or hold her. We were nervous about her fragile bones, germs and exposing her fragile immune system. But now things have improved so much that there's no reason to hold back any longer. 

Go ahead Arabella, put your fingers in that cake!

So many presents! And after we specifically told everyone not to worry about bringing gifts! But of course, everyone loves Bella, and this was her BIG one year celebration. 

Like a unicorn, Arabella is a symbol of purity and grace. She's legendary!

To our entire family, we thank you and we love you for all of the support you've given us during the last year. You guys are the best!

Love,
Arabella 💗