Bella's favourite things

Arabella loves music. Music is her world. 

Since last September she's been especially in love with the Australian children's music group 'The Wiggles'. She claps and dances to all their songs, and it's the only show on TV she'll watch! 

"Dadda, play the song about the 5 little ducks!"

Of course, mom and dad know all of the songs too! Sometimes I find myself randomly signing them in my head throughout the day. They're permanently embedded into my subconscious 😬

And when we need Bella to be calm, music is the only thing that works. We noticed this as soon as we brought her home from the hospital. Music is all she needs to be content.

Play-time with Bella means playing with all the toys she can get her hands on. THIS ONE...no wait...THAT ONE...never-mind...THAT'S THE ONE I WANT!

Toys and books are great for a while, but only for a few minutes until she wants the next one 😄

You know she's concentrating when that tongue is out!  😛

Bad hair day...

Every item she has in front of her is going to be thrown onto the floor. Pretty typical behaviour, right? But it's her favourite!

"Give me that phone, dadda! I know you have games on there!"

Bella wants phones. She wants iPads. TV remotes. Cables and gadgets. Just give me the cool stuff, guys!

She still doesn't talk or babble very much, but she definitely communicates with us. She points and she grunts. And this is her way of saying, "Take me to the swing!"

One of the things her physiotherapist has taught us is to encourage her to stand. 

And Bella's getting better with each passing week. We're still hoping she will start to crawl one day, so we're working on that too!

For now she moves and spins around on her back, which makes tube feeding really difficult. There have been many occasions where her feeding tube will get tangled or dislodge. Formula ends up spilling out...so then it's time for yet another late-night laundry load! That's definitely not one of our favourite things!

Tube feedings are best accomplished while she's in her stroller. Bella can sit comfortably and take in the sights and sounds of the neighbourhood while the pump slowly delivers her food. 

While on our walks, Bella absolutely loves watching other people. If you ask us, she's a little too nosey sometimes!

She loves animals, and isn't afraid to reach out and touch them. Dogs are great, but ducks are her favourite! "Quack quack!" (Bella will open and close her hand to mimic a duck quacking)...

She loves baths, and the weather has been amazing lately, so we'll just pretend that this is her mini outdoor pool. 

She loves to splash and play in the water, and she's not afraid to get wet!

Generally she loves being outside. Smiles all around! Here she is enjoying her outdoor play-tent.

And of course she loves spending her days with Momma. These are just a few of Bella's favourite things!

Mother's Day

This big girl has something say...

"I hope you had a great Mother's Day, Mommy!"

"I may be too little to know much about the world, but I already know my favourite place in it. Right next to you!"

Over the last few weeks we've really enjoyed the outdoors. We're getting out of the house and exposing Arabella to the world. We're still hyper-cautious over germs, hand washing, etc., but compared to last year we're on a whole new level. A normal level!

It feels so good to get out there. 

This was our first Mother's Day at home (last year we were in the hospital, of course) and this time it felt amazing to be able to celebrate comfortably and quietly. 

If Arabella could talk, she'd say, "Thank you for all the time you spend with me, Mommy. For all the walks to the park while dad is at work, for making me laugh and smile, for playing with me, feeding me, spending so much time with me, and giving me so much love. You mean everything to me!"

"I love you, Mommy" 💗

Yummy yummy!

For the last 3 weeks, Arabella's had nothing obstructing her face. It's made such a difference. On top of that, it feels incredible to be able to pick her up without any long tubes or cords. It's like we've all been set free! 

Just look at this picture taken before her surgery...

I can't believe that's the same Bella we see today.

Now she can roll around all she wants, without us worrying about her getting tangled or caught on anything. 

She loves this new-found freedom. There are no more chains to hold her down!

And it's been well over a month since Arabella's g-tube surgery. Before the procedure, she didn't want to eat anything. She would barely lick the spoon, and then she would immediately turn her head away. Her body language would speak volumes. 

Water or juice was out of the question. Every type of food or drink that she took by mouth caused her to gag, retch, and throw up. Eating was not fun. Eating meant pain and discomfort. 

The experts called it a 'feeding aversion', and we wondered how long it would last. They blamed it on reflux. They blamed it on a milk intolerance. They blamed it on the NG tube that was constantly around her throat. They blamed it on her prematurity and all the procedures she went through.

I'm excited to say that we can finally put all of that behind us...

Here's Arabella enjoying some tasty mashed avocado. She enjoys it so much that she sticks her tongue out when she knows it's coming. 

She really likes yogourt...

We give her the spoon and she has a great time. Food is slowly becoming enjoyable - and it makes us so happy to watch her do the most simple things. 

It's like we have a new child in the house!

Here she is munching on some baby crackers...

And even some salami 😂

We've been told to slowly expose her to everything. Arabella will try anything these days, and she'll smack her mouth and lips when she sees Kiera and I eating in the kitchen. So now we all try to eat together, as a family.

Arabella's even started to drink from a sippy-cup. She's discovering a whole different world of tastes and textures. And now that eating has become pleasurable again, we can only hope she continues to eat more and more, so that eventually we can cut back on her formula feeds.

Bella's fed primarily through the g-tube. That's how we ensure she gets enough calories and nutrition. But as she continues to eat more and more, we'll slowly be able to substitute a few real-food meals for formula.

In the coming weeks we'll also be working with a nutritionist to develop a plan for a puree diet that we can hopefully give to Bella through her g-tube. I can only imagine how much bigger and stronger she'll get once we start to give her portions of real food!

The future is so bright for this little one - and just in time for the sunshine. Better get your sun hats out!

Cordless

Arabella has a lot to smile about lately...

Her g-tube has been a total success. It has helped her reflux immensely, to the point where we haven't seen her throw up in weeks. 

And a few days ago, she got the O.K. to come off oxygen, which means no more cannula on her face. 

"Oh boy! Do you really mean that?", says Arabella.

"You bet, Bella. No more tubes on your precious face."

We were so happy to see her tube-free. Finally!

It's such a big difference, isn't it? Now we can leave her face alone, her cheeks and skin are not irritated by the tape, and we don't have to worry about getting the cannula tubing caught or tangled on anything. We can pick her up without hesitation. 

Finally, no attachments. Bella is cordless...

This is the new you, sweetheart.

We can also say goodbye to this loud and obnoxious machine, the oxygen concentrator, which has been running non-stop since we came home in August.

It's time to power it off for good...

Little things sometimes make the biggest difference, don't they?

Now when we're out in public, no one will know she was a preemie unless we tell them. There's no obvious signs that she is (or was) different from any other child. 

She's just a tiny 14 month old...but no one has to know 😉

We have so many things to celebrate lately. So many blessings that we're thankful for each and every day 💗

Happy Easter!

Happy Easter - from our little bunny family to yours! 

We'd like to wish everyone peace, love and happiness during this Easter weekend, and for always. 

Last year at this time Arabella was two months old. She was stuck in the hospital with no end in sight, weighing a bit over 2lbs, and she was still a month away from her actual due-date. 

Bella had a long way to go...

We were constantly worried about her, and the issue with her pulmonary artery was giving her a lot of problems. 

Some days things appeared to be getting worse, and not better. We had so many unanswered questions.

"Happy Easter", Kiera and I whispered to Arabella through the incubator doors. We brought in an Easter bunny and placed it on her shelf. It was a pink 'mother bunny' holding a little 'baby bunny' between her arms. It was perfect. 

That's one of those moments I'll never forget. That was our first Easter together. 

So today we send our thoughts and prayers to families that can't all be together at the dinner table - families who have no choice but to spend Easter at the hospital. 

To everyone dealing with difficult situations, we send you all our love, hope and strength. Whatever happens, know that God is with you. After all, the spirit of Easter is about hope and faith. 

Wishing everyone a blessed Easter. 
Love Dan, Kiera, and Arabella 💗

G-tube surgery

This was one of the toughest weeks we've had in a long time, but we managed to get through it. 

Monday March 19th was Arabella's g-tube surgery. Overall, she was a very strong and brave girl. And before going under anesthesia she was smiling, clapping and waving to the staff. Everyone that walked by was stopping to say hello to this little girl. 

It was supposed to be a routine procedure. And for the most part, it went smoothly. The tube was inserted without any complications.

So it was out with the NG tube (via her nostril, as seen in the above photo), and in with the g-tube, direct into her stomach (as seen below).  

But soon after the procedure, while Bella was in recovery, her blood sugar levels were quickly crashing. The staff was forced to give her higher concentrations of dextrose through her IV. And despite all of that, her blood sugar was still hovering quite low. 

"Here we go again", we thought to ourselves. We've battled Bella's hypoglycaemia for a long time last year, and it felt like everything was coming back to haunt us yet again...

Arabella was in recovery for much longer than usual. The staff continued to check her blood sugar. They were poking her fingers, toes and heels every 3 hours, as her sugars were constantly at the thresh-hold. 

By day two, Arabella developed a fever. Her feeds were immediately stopped for precautions (incase of an infection), and there was even more concern for her blood sugar. 

Before discharge, children with g-tubes must prove themselves by tolerating their full feeds. It's a gradual process, where the staff increases each feed by 10ml until they reach the full amount. 

Everything had to be put on-hold.

More tests and ultrasounds were ordered. Discharge was delayed. Day 3 turned into day 4, and then into day 5...

On top of it all, Arabella was becoming agitated, cranky, and unruly. She had trouble sleeping in the noisy room with other children, she was spooked by every noise, she was crying uncontrollably for long periods of time, and all of us were completely exhausted. 

There were moments when we simply broke down. We had no energy, and we were sleep deprived the entire week. 

But we battled through it. We've been here before, and we weren't going to give up.

Eventually, the staff ruled out an infection. They took pity on Arabella by the third day, and they moved us to a private room so that she could get rest. 

Her fever was likely the result of a minor cold, so we'll continue to monitor her at home. And before discharge she passed her six hour fast (and her blood sugar levels proved to be okay). 

Phew! We made it. 

Everything just took a little longer than normal. It reminded us of our time at SickKids last year, when everything was constantly delayed. Everything turned into a struggle that we had to overcome. 

And we overcame things yet again 😊

This short-lived experience made us realize how lucky we are to be home with Arabella. The hospital-life isn't an easy one. It requires all your strength and energy, and I have nothing but admiration and respect for any parent that has a child going through long term issues. 

This place is a battle zone. Let's never forget it. And may God bless all the children that are fighting the big fight here at SickKids and around the world...

In the next weeks and months ahead, we'll see how much of a difference this g-tube will make for Arabella. One thing for certain is that she'll be a lot more comfortable now that the NG tube won't be down her throat. 

Above is a photo of Arabella celebrating her 13 months (a few days before her g-tube procedure). She's obviously a very happy girl. Way to go Arabella! 💗