Valentine's Day

Happy Valentine's Day from Arabella 😛

Hugs and kisses to all our family and friends!

Little piece of heaven

I can't believe we're in 2019. It doesn't feel real. Can someone just stop the time right here, right now?

Uh, are you stuck Arabella? Can't move?

Why don't you have a seat, darling.

You know what - if I could live forever in any one period of time in my life, I would want to be stuck here. Right now.

That's what I've decided. 

I could live in this time, in these moments. Eternally stuck here. Forever.

I imagine that's what heaven would be like. Your favourite time in your life, with your favourite people, living out a beautiful yet completely ordinary moment. 

I would want to live in this moment over and over again. 

Maybe heaven is just a Tuesday night? Featuring a bubble bath. And later, a story about a dog named Biscuit. 

I would take that kind of heaven. I would take it 100% of the time if God offered it to me today. 

So here we are...2019. It's a new year and Bella's off to a running start. 

Last year was a big year for her, and we watched her knock off a lot specialists, follow-ups and personal goals.

Every so often, she really surprises us. As kids tend to do! Just when we think we have her figured out, she does something that blows us away. 

Over the last few months, Arabella started to eat A LOT by mouth and it's been absolutely amazing. It's huge progress, after barely eating orally at all.

I can't tell you the joy I feel when we're all eating together as a family, or when I see her signalling for more food. I'll never take that feeling for granted, that's for sure. 

I remember how crushed we were when Bella stopped taking the bottle. We almost felt depressed. We felt like we failed as parents. And we lost a great way to bond with her. Suddenly her oral aversion got worse and worse.  

We still tube feed Bella but it probably amounts to 30-40% of her total daily intake. Even still, the kind of progress she's made up to this point is extraordinary. 

When it comes to drinking water and other fluids, that seems to be her biggest hurdle right now. For kids with oral aversions, drinking is something that often takes a lot longer to grasp. I mean, she knows how to drink, but it's a matter of her being 100% comfortable with it. 

Right now Bella's favourite way to drink is by syringe. Little bits at a time. But it depends on her mood. Sometimes she just doesn't want any kind of fluids, so we're forced to give her water by tube. 

In our home you'd find 30 various children's bottles or cups, because we've tried every kind imaginable hoping to find "the one" that Bella would like. At this point she doesn't like any of them. Regardless, we know that one day she'll come around. Bella takes things at her own pace, and that's all there is to it. 

Ever since Arabella was born, the advice that we were given was "take it one day at a time". It's truly the best advice you could get. 

When you take things day by day, you're not rushing too far ahead. You get to take in the moment, and be present for it. What's the rush for tomorrow? There's always another challenge or obstacle waiting for you around the corner, so the idea is to find your own little piece of heaven in today.

Best Christmas Ever!

Oh, Christmas time!

The most magical time of the year.

All of us had such a wonderful holiday. I can't say enough! It was joyful. It was triumphant. It was a Christmas we're sure to never forget.

And it all started with a little visit from Santa Claus (a tradition we had to continue from last year)...

"Uh, Dad, I hate to break it to you, but you look ridiculous in that Santa suit."

"That silly beard isn't fooling anyone, you know."

"I can't believe Mom is encouraging this too."

"Now can we all go and open up some presents already!? Come on, people!"

Wait a second there, Belle! Since we're on the subject of presents - what's the most important gift of all? 

The gift of life! 

In the end, that's all that matters, right? The gift of health, family, and spending time with one another. Every Christmas is another reminder: being together is all that counts. 

Flash-back to last Christmas. Arabella was seven months corrected. She was a tiny little thing. She still required oxygen support and her NG feeding tube.

Fast-forward twelve months and we're looking at a big girl. A girl who's gotten so much tougher and stronger. 

A girl with personality...

A girl with charm, charisma...

And, a whole lot of ATTITUDE! 😂

Mom and Dad certainly have their work cut out for them these days, but Bella is one gift we can't exchange (nor would we ever want to!). 

She's a keeper!

On Christmas Eve we went to Grandma and Grandpa's where Arabella got her first taste of the joy and excitement. She had so much fun unwrapping her presents. She was ripping and tearing like we've never seen! 

Dolls were a huge hit this year. Here's Belle opening up her Belle dolly...

"Give a kiss to your dolly, Arabella!"

Muuuahhhh 💋

Arabella received so many wonderful gifts from our family and friends. You guys are truly the best! Thank you so much!

After Christmas Eve dinner we went back home and let Bella open some more presents (and some especially from Mom and Dad). There was just so many presents this year that we had to stagger them throughout the 2 day event! Ha!

One of little Bella's favourite...Little People! 😄

"Hey guys, are you going to help me get these out of the box, or what?"

Bella was loving it. 

Then came Christmas morning. Nana (Kiera's mom) came over and my girls were busy again opening presents.

For a second it looks like I have two children! 😄

And here's Bella feeding another new dolly...

She's such a good girl. Sometimes she feeds her dolls in the belly, the same way we feed her!

Presents and more presents. It was all too much, to be honest!

Someone got spoiled, don't you think? But our family just can't help themselves. And who could blame them? They love Arabella so so deeply, and they remember everything that she's been through.

Just look at all those gifts. And that's not even everything!

Her face said it all.

Bella shouted, "This was the BEST CHRISTMAS EVER! Thank you everyone!!!"
💗💗💗

Big girl Bella (videos)

Arabella wants to show everyone how BIG she's getting. 

She's learning to walk...

And learning to balance herself...

She's studying her books...

She makes the best faces!

She can be very silly...

She has a weird sense of humour...

But best of all, she started eating A LOT MORE by mouth!

Wow Arabella! You're doing such a great job! Woo!

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!