Picture day: September 26 - 29

These last few days have been quite memorable. 

Arabella's been extra sweet and playful, and mom and dad have enjoyed every last second with her. 

We can never get enough of those precious smiles...

Earlier this week the weather was phenomenal. It was almost too hot at times, so we walked mostly in the mornings and later in the afternoons (when the sun wasn't beaming down so much). 

Oh, how I love our walks. It's become one of my favourite things to do as a family. 

On the hot days, we would take breaks in the shade. Belle would continue sleeping, and we would drop the top on the stroller. It generally felt like summer all over again, and it was glorious. 

I'm really going to miss this beautiful weather once it's gone...

And sure enough, towards the end of the week the weather got cooler, and we started to spend more time indoors. 

See you next year summer weather...please don't be gone for too long? 😕

We're keeping in mind what the developmental follow-up clinic had told us - more side playing, encouraging rolling, and as much tummy time as possible.

The only thing that stands in our way are Arabella's feeds (that we continue to give every 3 hours). The feeds put a pause on playtime and activities, since Belle tends to throw up if she's too rambunctious. Feed time must be much calmer, with a good book or a toy to keep her occupied. 

Kiera and I used to work shifts during the night (like we did while we were in the hospital). I used to stay up until 6am (in order to let mom sleep uninterrupted) but over the last few weeks we've totally changed our schedule. Now we're both going to bed with Arabella starting at 8pm. We're forcing ourselves to sleep when she sleeps, and we're waking up for the 9pm, 12am, 3am and 6am feeds. It's been the biggest change for us so far, and it's something we're still getting used to. 

We tried eliminating the 3am feed last week, but the lost volume would need to be distributed among the other bottles, and that's something that Arabella can't handle at the moment. The more volume that she takes in, the more she throws up. 

Arabella rubbing her eyes in the early morning...

"Oh, hello there!"

At our pediatrician appointment this week, we carefully looked at Arabella's weight, and we found that she's growing at a decent pace. She's still very small for her corrected age, but she's growing proportionately, and that's great news if you consider everything.

She's still throwing up more than usual, though, so the outfits and blankets are constantly being thrown in the wash. "It's typical baby stuff", we tell ourselves. Throwing up is just part of the game. 

If she kept her hands out of her mouth, maybe she wouldn't throw up so much (she gags herself a lot) - but what can you do? You can't keep her gloves on at all times, because that would mean restricting her hands throughout the entire day! She needs her hands to explore and feel the world around her, right?

Overall, we're trying to get into a good routine now, so that when I go back to work in January we're ready for it. The night time feeds are definitely a challenge, since a feed can take an hour (or more) from start to finish, but we're getting used to it. 

Kiera and I take turns waking up for the feeds (which are all done by gravity bag) - but in reality, we're both waking up because we're both in the room. It's not the end of the world, though. We've learned to operate on 4-5-6 hours of broken sleep 😄

At around 7:30pm every night we give Arabella a bath, and right after we place her into bed and attempt to lay down with her. 

Every night it goes - bed, bath, and beyond 😉

Sleep tight you little Tinkerbell. You've got mom and dad both under your spell 😊

Follow-up clinics

Yesterday was a busy and exhausting day. There was a heat wave all across Toronto, and we had back-to-back appointments at SickKids hospital. 

The first appointment was with the Neonatal Developmental Follow-up clinic. 

Here we are waiting for the Nurse Practitioner to join us in the room...

The follow-up clinic assesses gross-motor, fine-motor, social development, language and learning ability at specific ages to determine if a child is developing normally. When a skill is found to be lagging behind age expectations, advice is given or a referral is made to the appropriate agency so that the child receives the support and therapy he/she needs. 

Assessments occur at 4, 8, 12, and 20 or 24 months corrected age. Certain children may be followed at 36 months, preschool and school age. 

Here's the NP doing her assessment. As we continued, she showed us many different tips and tricks. For example, how to promote and prepare Arabella for rolling. She could definitely use more time playing on her side, that's for sure!

Later an Occupational Therapist joined us and she showed us some more positions and things to look out for. 

We need to encourage Arabella to get off her back as much as possible. That way, the back of her head doesn't become too flat (it's already starting to flatten a bit). The OT showed us some great tips for 'tummy time' and how to keep Belle's hands and elbows tucked in (for weight bearing). We learned so many different things. 

Kiera and I were always a little timid to put too much pressure on Arabella's hands and arms (due to her fragile bones), but now we know her bones are fully healed and strong, so we'll encourage all of those things a lot more. 

All and all, it was a very informative session.

Here's how Arabella is plotting on the length and weight chart (she's still less than the 3rd percentile for both) - but at least she's on the chart!

Bella was so tired after the developmental appointment. She missed her afternoon nap because there was simply no opportunity - and then we had to head to our Respirology appointment. 

This was basically a chance to check out Arabella's lung situation, and discuss things like pulmonary hypertension, blood pressure, and even feeding difficulties. Everything is always connected in some way, it turns out.

Her lungs are slowly getting better. She's doing a good job of exchanging carbon dioxide, too. Belle was fully checked out and inspected 😊

For now we're going to keep her on supplemental oxygen. The extra O2 she receives is there to mainly help her pulmonary artery (so that her heart doesn't have to work too hard to pump blood into her narrow airways). The oxygen expands the airways, and it lessens the bloods resistance. But in the future (once she's off the oxygen completely) it's unclear whether she'll need blood pressure medication. 

Her worsening reflux seemed to worry the doctor. When Arabella aspirates, some of the milk will spill into her airways and wind-pipe, and that can cause inflammation and chest congestion. Over time it can cause damage to her esophagus, it can cause hoarseness, a chronic dry cough, asthma, sinus infections, and even pneumonia. Apparently, reflux can cause all kinds of issues. It's such a complicated condition 😕

The doctor told us to look into going back on motility drugs (such as Domperidone), which apparently increases the muscle tone of the digestive tract and keeps food moving better. He seemed to think it would help. Arabella was on that for a few weeks at the hospital until we decided to take her off the drug (after reading and hearing about some of the negative side effects).

Acid blockers, motility drugs...all of these drugs worry us but we're almost stuck in a corner at this point. Arabella's still on the acid blocker Omeprazole despite all of our reservations about the drug. So, at least when she vomits, it doesn't burn her throat and esophagus, but that's all it seems to be doing. 

On the topic of feeding...

Last week we went to a feeding clinic and the doctor told us to first try this hypoallergenic formula, in case Belle has a dairy intolerance. It smells absolutely horrible, though, so I can't imagine it helping Arabella's feeding aversion! 😄

Whatever we try at the moment, though, we'll never see immediate results. Arabella associates eating and swallowing with pain and discomfort, so it's going to take a long time to see any progress. This is our new reality right now, and it might even get worse before it gets better. 

In the near future we're going to be followed by a Dietitian and an Occupational Therapist, so there will be lots of eyes on Belle as we continue to deal with this feeding issue. 

We have a long way to go!

Picture day: September 22 - 24

This is the second time that Arabella's worn this yellow dress since she got it. In a few weeks, it might not fit her any longer!

The weather has been absolutely amazing. So good, in fact, that we've been going on a ton of long walks and spending as much time outside as possible. It's like the summer we missed has somehow come around just for us...but on the 22nd it was officially the first day of Fall!

Here come the falling leaves!

Belle's such a good girl in the stroller. She just wants to sit and observe, and she doesn't want her walks to end!

She loves the stroller so much that if she gets overly cranky (close to her bedtime, for example), we simply place her inside and wheel her around the kitchen. She instantly calms down. It works like a charm! "Phew!", say mom and dad.

"Look at the nature Belle! Isn't it beautiful?"

Mom laying in the backyard with Arabella. There's nothing like a nice long nap outdoors!

Belle was loving it...

A close up of her long and beautiful eyelashes 😍

We've been sleeping outside, feeding outside, playing outside...it's been one of those amazing weeks for weather. 

Cuddles with momma...

We try and keep Belle off her back as much as possible, because when it comes time to feeding her, she's usually laying down for a good amount of time. If we pick her up too soon following a feed, it could mean losing a quarter or half of her meal! Arabella has been throwing up a lot more in the last few weeks, a lot more than usual - so we're being extra careful lately 😕

Sadly, she's still not interested in her bottle. She won't suck for more than a few seconds, and then she refuses the bottle entirely. Kiera and I are exclusively feeding her breast milk at this point (no formulas) to see if she would tolerate it better. We're trying all sorts of things out, but progress is always very slow. It will take a long time to see any kind of changes...

We've also started to introduce Arabella to solids! It's just a lick and a taste (for now), but we're slowly heading in that direction! We want her to get familiar with various tastes and textures - especially since we're having such trouble with the bottle. 

Overall, we shouldn't complain. We are so incredibly lucky to be in this position. Arabella's a total sweetheart, too. She's such a happy little girl. Everyday Kiera and I simply can't stop kissing her! 😘😘😘

One last bone to pick

Today was Arabella's bone clinic follow-up at SickKids. We haven't been back to SickKids since discharge.

Ah, memories...

It was nice being a visitor this time around. The hospital is no longer our home! 😊

Before our sit down with the doctor, Belle had to get an x-ray on her knee, and another on her hand. Those specific areas would show us the clearest picture of the current situation. 

Arabella was incredibly calm during the x-rays. The technician was very impressed. "This isn't my first rodeo!" said Bella, "I've been around the block, you know."

Afterwards, we were escorted to a patient room where we anxiously awaited the doctor. Arabella was still very calm and chill...

The orthopedic doctor walked in with a smile on her face. That was a great first sign. She remembered Arabella quite well from our family meetings and previous sit downs. 

"Okay, I want to show you the 'before' and 'after' x-rays, so you can see the difference for yourselves", she said. "Let's take a look..."

"Here are the x-rays from April". She opened multiple images on the screen. "Pay attention to the tips and ends of the bones. Notice how fuzzy and faded they appear? That's because her bones were weak, soft, and pliable".

In April we found out that Belle had hairline fractures throughout her body - two of them were significant enough to potentially cause her pain (and that's when the morphine started!).

This post from April 9th is when it was all uncovered...

Eventually the doctors started to suspect rickets, or worse, a genetic bone disease. Arabella's situation was simply unusual, they told us, even for a micro-preemie. Kiera and I started to get very concerned, but somehow we remained optimistic. 

"Now look at today's x-rays", said the doctor. "Notice how defined the ends of these bones look?" 

"These are strong bones. These are healthy bones! And Arabella won't require any more follow-up appointments with us. She's definitely on the right path now..."

When the doctor said those words, I lifted Arabella high above my head and I made a sound-effect (as if the heavens were opening up for us), "Aaaaaaaaahhhhhhhhhhhh!"

That's how happy I was 😃

After a long commute home from the hospital, I took Belle for a nice long walk around the neighborhood. The weather has been exceptional lately.

Today was an awesome day. We finally put all of this bone stuff behind us. After all of the blood tests, DNA analysis - all of the worries and concerns...it's done. It's over! The bone chapter is officially closed! Woo hoo!

Picture day: September 19 & 20

Bella finally said 'yes' to the dress, and she wanted to show you guys the big reveal.

She looks like a totally different girl in a dress, doesn't she?

"Care to explain that last statement, dadda?"

Do you see what I'm saying, Arabella? You have a thousand looks to you! I never know which one I'm going to get!

Catching the sunset from her stroller.

This was one of her night-time outfits. It says "bonne nuit" on the front, which means "good night" in French. Funny enough, that same night Arabella had one of the worst nights in a while. She was so cranky! Oh boy! Kiera and I laughed about it the next day, because it was definitely not a "bonne nuit" for any of us! 

I love this picture of her. She looks so shy and bashful.

Here she is checking herself out in the mirror. Typical Bella! She talks to herself a lot now, too! "Ga! Ba! Ah!"

We bought her a "Munch Mitt" a few weeks ago. You put it on her hand so that she can chew on it (since she loves putting her fingers in her mouth so much)...

But she's still getting the hang of it... 😂

One of dad's birthday gifts to mom. Momma loves her Tinkerbell, and now it's official! 😃