Arabella's Odyssey

Thursday, September 3, 2020

Chew chew chew

Arabella gets 95% of her daily water and nutrition through her g-tube. We're so used to it that we don't think twice about it. If we're on the go, we take water and Bella's blended food and feed her while we're out.

We slowly push the food through her tube and then resume our adventure. It's that easy. To be honest with you, the g-tube is a blessing in disguise.

I personally don't know any toddler who eats as healthy as she does. What's for dinner tonight? A plate full of sweet potatoes, baked chicken, avocado and zucchini. Throw it all in the blender, mix and serve.

Arabella gets such a variety of healthy and nutritious food. Seeds, nuts, oils, and healthy fats galore. But despite all this great stuff she still hovers around 21lbs. Girls her age (3.5 yrs old) average around 32lbs.

"Not a big deal", says Arabella's doctor.

She continues to gain in height (which is on track for her age) and that's a very important factor. Although skinny, it doesn't mean Bella's not healthy. We're just so accustomed to seeing children with extra weight on them that we assume it's the norm. Especially with little kids, we tend to think "chubby" = "healthy" and that's not necessarily the case.

It's all about frame of mind.

Oral eating is still a big challenge for this Minnie Mouse. But one thing is for certain: Arabella loves Grandma's home-made chicken soup. She can only take really tiny spoon-fulls.

Little bits at a time.

She also loves spaghetti. Everything has to be cut up into very tiny pieces, though, otherwise she can't handle it. "Chew chew chew", we keep reminding her, over and over.

Bella needs to be watched closely because she can easily be overwhelmed with the food in her mouth.

Some days are better than others. Some days she's doing great, eating well and managing the food that's in her mouth. Other days she'll gag, cough and even throw-up.

Some days you can tell off the bat: it's not going to be a good eating day.

G-tube to the rescue.

These g-tubes a modern miracle. They're easy to use and they never seem to bother Arabella. At $300 each, they last about 6-8 months before they need to be replaced. They are well worth the money. We replace it ourselves and it's rather easy and painless.

When it comes to liquids, Bella does best when you give her a little bit at a time (preferably through a straw). When she sucks by herself she usually takes too much at once, so we manage the amount in order for her not to get overwhelmed. "Easy does it" is the recipe for success when it comes to eating and drinking.

Everything has to be controlled, and that's the way things go.

That's prematurity for you. Bella's eating/drinking aversion has a lot to do with her past - so as much as we try and put the past behind us, it's always right there with us. And that's totally fine with us.

We embrace it.

And with every struggle there's always a silver lining. It's been the theme throughout Arabella's life, and it's helped shape our outlook and who we are today.

Thursday, July 9, 2020

Something from the past

When Arabella was in the hospital (she was about 4 months old) I wrote a blog entry but I never posted it. At the time I didn't think it was appropriate to share. Perhaps it was too raw and I was afraid it would be disheartening to some readers. But I think it's worth posting this today.

Here it is...

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There was a new admission into our room last Friday night. A baby was delivered and scheduled for immediate surgery. I witnessed the baby's family pour in and out of the room for the next few hours while I held Arabella in my arms. It's obviously a joyful time for the entire family, but you could sense the undertones of anxiety.

Happiness mixed with fear. Immense hope with hints of despair. It's a journey of constant clashing emotions.

Most of the little ones here at Sick Kids are fighting tough battles, and unfortunately in some cases it's life threatening.

Do you ever look at your own life and wonder why or how you ended up where you are?

Sometimes it feels like God has sent me here on assignment, like a reporter is often sent deep into a region of crisis.

Welcome to ground zero.

In a way, I am a quiet observer. I take mental notes of everything that happens around us, whether I realize it or not.

Kiera and I regularly talk to a few of the other parents in the NICU. We get to know other parents that are here for the long haul, much like ourselves. We run into other moms and dads in the family kitchen, by the pump rooms, or in the hallways. Eventually we strike up a conversation, and we get to hear about their joys, triumphs, conflicts, and struggles.

A lot of the moms here tend to band together for support. Often times it's about affirming those feelings of frustration and helplessness. Who else to better understand than another NICU mom? The other moms have helped Kiera immensely.

Dads are generally more on the quiet side, perhaps offering a nod of affirmation to other fellow dads. Although unspoken, it doesn't mean that they are indifferent. Dads have their own way of coping and dealing. I'd categorize most of them as "strong but silent".

Many of the little ones here at Sick Kids are on an odyssey very much similar to Arabella's. Stories that are on the up, trending in a positive direction. There are still bumps in the road, but they are manageable bumps, ones that don't threaten lives or have the potential to shatter hearts.

But each story is different and unique from the next.

We've met 3 couples so far who have lost one of their twins. One couple in particular we've gotten to know exceptionally well.

I learned not to judge anyone from a distance. You don't know the burdens that they carry.

A young mother lost her baby boy over the weekend. Her husband was overseas and sadly couldn't be there. The baby's issues were very complex, and it was simply a matter of time before God had to take him home. I saw this mother come in every day to spend time with him. Precious, precious time. You would never know by looking at her that she was dealing with so much. Her family came in to support her on the day the boy passed away. I saw a lot of quiet hugs.

I wonder how many silent prayers these hallways must have heard over the years.

Another mother comes to visit her baby girl everyday knowing that her little one wont live much longer. A complex liver issue, and the baby isn't a candidate for a liver transplant. Doctors have told her to consider ending the baby's intensive care, but she tells them to do whatever they can to prolong life, and she fights along side her daughter. She says she just wants to spend as much time with her as possible. This woman somehow manages to flash a big smile each time we see her. How does she do it? What does she tell her 5 year old daughter (who we also see by her side)?

When I hear some of these parents' stories, I try to imagine how it must feel like, but I cant.

It must be a pain that cuts deep into your core.

Monday, June 15, 2020

Reset

My little sidekick.

Strapped in and ready to go. And wherever Bella goes her little leopard "Cub" comes along too.

So virus or no virus, we're still out here doing what we always do in the summer. And it's more important now than ever.

We're getting out and moving around.

Take me here. Take me there. Take me anywhere, as long as we're together, right?

We're very fortunate to live next to so many trails and conservation areas. There's plenty to see and do around these parts.

You still need to grow into that bike, Bella. But you'll get there eventually.

Right now we're all trying to stay active as much as possible. Breathe in some fresh air and clear your head. Getting outside and moving around is like hitting the 'reset' button on the anxiety and overwhelming thoughts. And I've had to hit that button constantly since the lock-down began.

All of my worries, doubts and frustrations get eliminated here. I pull em out, and push em out, until I'm physically beat-down. Weight training is crucial to my well-being.

What I put into my body is just as important. I want to be quick on my feet, I want to be lean, and I want to feel good. So eating quality food is another thing I make sure not to neglect.

Bella knows that her dad needs his time and space. I need the time to do my job, a space to focus, and a time during the day to exercise on my own. I learned early on (during our NICU days) that parents need to take a step back in order to reset and recharge.

A frustrated parent will never set a good example. A tired or weak parent can't always be the best. So sometimes I need to put myself first, because that's one sure way of giving this girl the best version of her dad.

As soon as this lock-down started I knew that I had to make some major adjustments. And I figured out just what I needed in order to maintain my mental, physical, and emotional health.

Now I can definitely say that I'm mentally stronger and more physically capable than I've ever been in years. And there's no looking back. This changes everything.