Belle Update: July 9

Très chic.

Arabella was showing off today. She had many wardrobe changes due to unforeseen "accidents" (involving leaky diapers)...but we can pretend it was for a fashion show.

Oh la la. So fabolous.

Now that she's not on the mask anymore, it's like I barely know her. Who is this girl? And what happened to my tiny Tinkerbell?

"When did you get so big?" I think to myself.  

"Where's the pause button on this remote?"

Arabella's a big girl now. There's no denying it. She has grown so much, and I almost can't believe it sometimes. This delicate flower is now in full bloom, blossoming into the stratosphere. 

Really, though, when did she get so big? 

We walked in today to find Arabella watching Peppa Pig on an iPad, and the baby next to her was listening to a playlist of Norah Jones.

"Where are we right now?"

"What year is this again?"

It was a day of pampering for Belle. Lots of cute outfits, many cuddles with mom and dad, and a trip to the spa. 

This is the life, huh?

After bath time Belle managed to sneak in one more cuddle with dad, a short bedtime story, and then it was straight to bed.

Honestly, guys...what happened to my little girl?

Video: Cuddles with mom

Bella's facial expressions are priceless 😄

We know she's got charm and personality. She's adorable yet laughable. She's extra sweet, with a pinch of goofy. 

It's been amazing to watch her flourish so much over the last few months. We try to savour every moment. 

Boy, time is sure flying by fast.

Video: Bella's tasting

This video was taken on July 1st when Arabella was still on the CPAP mask. We were giving her a special Q-tip dipped in breast milk so that she could enjoy the taste. In the NICU we call this OIT (oral immune therapy).

My favourite part is watching her hands move. You can tell she really loves tasting the yummy goodness 😊

Belle Update: July 8

It's day two on the 'low flow' and Arabella's doing awesome. She seems a lot more comfortable.

Now that she's not getting any air pressure from the mask her tummy won't get so puffy. She should feel a lot better. Less bloating. Her face won't swell so much either. 

Low flow is much easier for mom and dad. No more large tubing that gets in the way between us and this precious face. 

I can kiss her forehead, her nose, between her eyes - something I haven't been able to do in months.

This experience teaches us to appreciate the little things.

Every hurdle that Arabella jumps over is another cheerful celebration.

She gives us so many laughs throughout the day. Belle makes some funny faces 😄

"Where's my thumb?"

"Oh, there it is. Thank you mommy" 

💗

Low flow

All of God's grace in one tiny face.

We came in today to find Arabella on the 'low flow' cannula. It doesn't provide air pressure (like the mask), only straight oxygen. 

Oh man.

Mom was nervous 😯 but Belle accepted the challenge. She looked like she was ready for the next big step. 

She should have been on 'high flow' today (which does deliver some air pressure), but the staff felt like she could jump ahead. That surprised us a bit, but Belle's tolerated it well so far. 

There's always a few surprises in the NICU. Then again, Arabella's surprised us a few times too. 

She can do it.

It's a new world for Arabella. No more obstructions. Tummy time was a lot more enjoyable. 

"Do I have to do this, dad?"

Low flow gives her the freedom to move her head around. No more tight straps, and a mask that digs into her face. 

She's still getting poked every 3 hours for the glucometer readings, but Belle doesn't even flinch. She's one tough cookie. If her sugars remain stable until Sunday we'll officially say goodbye to the Diazoxide. Now, won't that be the sweetest?

Tonight was bath night. I really enjoy bathing her. We usually do it every second night. After her bath, it was cuddle time with momma, and then straight to bed. 

"No partying tonight Arabella", the night-shift nurses warned her 😄

Belle Update: July 6

Each day is such a gift.

Big eyes for momma and dadda 😃

Arabella's air pressure was on the lowest setting today. The staff continue to challenge her, and so far she's doing great. 

Tomorrow we should see her on the 'high flow' cannula again. Belle needs to graduate from this CPAP mask, once and for all. Last time she only lasted a day on 'high flow', but to be fair, the Diazoxiode was sabotaging her chances. This time she's almost off the drug, and her breathing has noticeably improved. 

Her blood sugars have been stellar. Two more days of good sugars and she'll be off the drug completely. Fingers crossed.

She had some time on her tummy today. She enjoys it for the most part. It's a great workout for this growing girl. Arabella loves to bury her face in the pillow, but the mask gets in the way. The cannula will be a lot more comfortable, if she can learn to tolerate it. 

Holding mom's hand. She's such a sweetheart. 

Belle received a lot of amazing books from some of you guys. They're a lot of fun, and we keep each one at the hospital. Story time is always a special time.

Arabella was tuckered out by the evening, but she was visibly satisfied. Life is good when we're all together. 

With mom to her left, and dad to her right, she was listening to a story about a tiny snail that eventually saved the life of a great big whale.

Someone so small, rescuing someone so big...it's an interesting tale for all of us, I think 😊

This is the sky, 
So vast and high
Sometimes sunny and blue and warm
Sometimes filled with a thunderstorm

She gazed and gazed, amazed by it all
And she said to the whale,
I feel so small...

The game plan

Today we had a family meeting with our primary doctor. She's a smart woman who's very familiar with Belle's medical history. We like the way she thinks, and we love her approach. 

She calls Belle a 'delicate flower', because she understands just how sensitive she is.

This doctor will oversee Arabella's care going forward, so we'll finally have a united voice to represent us. One voice to provide direction and focus. One voice to help us get Arabella home.

One voice to rule them all 😉

This means a lot to a mom and dad who have seen roughly 20+ doctors over the last 4-5 months. In the NICU, doctors are in constant rotation. 

It was obvious that we need more consistency, and we were the perfect candidates for a primary neonatologist. Belle has a lot going on, and this should help get everything sorted. 

Simply put, we need a strategy. We need a solid game plan.

In the short term, we're going to focus our attention on Arabella's breathing, and eliminate some of the drugs she's taking. We counted 14 different meds and supplements that Belle's currently on (often taking them 2x or 3x per day). 

Everything adds up, and every drug seems to affect her. So if Arabella doesn't absolutely need it, we don't want it. 

This doctor has our back. 

In the long term, lots of things can still happen. This NICU journey is far from over, but we'll see what happens with Arabella's breathing before we get too ahead of ourselves. 

An Occupational Therapist came by to see Arabella today, but Belle didn't want to acknowledge her. We think she was pretending to sleep, because she kept her head upright the entire time without much help. She simply refused to open her eyes.

Arabella is almost 2 months old (corrected age), so it's important that we continue to give her more time out of her crib.

Everyone is absolutely taken by her. 

Just a big yawn. 

Another great day with this amazing little girl. I'm so thankful for her health. Even though this journey is long and tiring, she's making progress and that's the bottom line. 

As they always say here, you need to take it one day at a time. Step by step (oooh baby) 😉