Day 125

Hello, sugar plum!

Wednesday marked 125 days since this wonderful girl stepped into our world. In that time, we've watched her grow and overcome numerous obstacles, but we've faced a lot of set-backs, too. 

It comes with the territory, I suppose. The daily ups and downs are still apart of our lives, but it's something we can't seem to control. There are a lot of things constantly happening here. 

Every day there are highs and lows, and that's probably one of the most tiring things about this experience. 

125 days makes a huge difference to a preemie born at 28 weeks. Arabella went from only 1 pound to a whopping 6 pounds. 

Just like a mustard seed. 

Look how much she's blossomed. 

She's given mom and dad plenty of worries, but for every worry, she's given us 100x more joy. 

Arabella had a few rough moments today, but she bounced back eventually. The staff had made too many changes today, and it affected Belle's breathing and reflux.

Mom had a rough time watching it all unfold. Bella was crying uncontrollably as the staff hurriedly made adjustments to her settings and some of her tubes. 

The staff push her a little too quickly sometimes, and then they're forced to retreat. It's a constant battle.

A little bit of sleep made everything better. 

Arabella's scar from her PDA surgery. I haven't taken a good look at it until today.

We gave her a bath so we took off her little hat and finally got to see some of her hair again. It's a lot thicker and darker now. We're not used to seeing her without her hat these days. 

The nurse helped place these plastic covers on Arabella's cheeks to help ease the tension from the straps. 

She looked like a little boxer!

In the ultra-featherweight division...

It was another day of highs and a few lows, but the highs always prevail. It's hard being a parent in the NICU sometimes, but you do your best to overcome the frustrating or helpless moments. That's all you can do. 

Belle Update: June 20

When we came in to see Arabella today she was wide awake, quietly laying and looking around. 

She must have been waiting for us 😃

When it's loud in our room, Belle's usually the quiet one. She still has the odd fussy moment, but her cries are not nearly as loud as the other babies. 

We're still waiting for Belle's voice to fully come through. She squeaks a lot now. It's her latest thing. Very high pitched squeaks. She makes us laugh with some of the things she does. 

Arabella's sugars have been good so far on the 3 hour feeds. Every 3 hours she's slowly fed 50ml through a big syringe on an automatic timer. The food gradually goes through her feeding tube and down into her stomach. This type of slow feed gives her better chances of adequate sugar levels, and it's overall easier on her digestion. 

In terms of her breathing, they lowered her air pressure (typically called "peep") to level 7 on the mask today. The lowest pressure is 5 and it goes as high as 10 for babies. 

She's continuously getting lots of vitamins and supplements to help her bones. Recently the staff started giving her 2000 IU of vitamin D. She's got a long way to go to strengthen her bones. Stronger bones and ribs will mean better breathing too. Everything is always connected somehow. 

She was really tired by the end of the night, but it was clear that she wanted to squeeze every last minute with mom and dad before they left to go home. 

It's so hard to leave her sometimes. I can't describe the feeling. 

I watched a few of Arabella's old videos after we returned home and I just marveled at how much she's grown. Every week we notice a visible size difference.

Her last weight was 2.76kg, which is over 6 pounds! We are thrilled, of course. Belle is far behind in terms of weight (compared to an average one month old girl) but she'll catch up eventually. 

Bella isn't your average girl, anyway. She's making strides and that's the most important thing.

Belle Update: June 19

Arabella is a burst of colour in our lives.

We caught a few smiles today 😊

She had another heart echo to check on her pulmonary hypertension. It was still unchanged. Her oxygen levels have been in the 20's, however, which is great.

She's usually a very good girl when she's being assessed by the staff.

She just needs her soother, and maybe a hand or two to hold.

Her sugars have been very high lately, but better high than low. She's getting her glucose checked every 6 hours now, so the pokes are a little less frequent. Tomorrow the staff want to put her back to feeds every 3 hours (instead of 2 hours) to see how her sugars react with more time between feeds.

They're always adjusting something with Arabella. It's the way things go in the NICU. Everyone is trying to help her progress. 

We gave her a bath tonight and tucked her in to bed. We never go home until she falls asleep for the night. That's our routine. Belle will quietly lay there for a good hour or two sometimes before falling asleep, so we'll stand next to her, take turns holding her soother, caress her, speak softly to her - all those simple and enjoyable tasks. 

She's a fantastic little girl with a charming personality. We can't help but love and adore her. 

Kiera and I got home around midnight, absolutely tired to the core, but we're fulfilled. Life is good when we all spend time together. 

Father's Day

I'm a proud dad everyday, but today I'm especially proud. It's my first Father's Day.

I'm just another dad in plaid 😄

My smile says it all, doesn't it?

It's all about her, and I can't stop smiling when I'm with her. I've been a dad for 4 months, and Belle and I have already been through a lot together. Some might say I had to take the condensed course on fatherhood, but I can't imagine anything different. This is the only world I know.

In a way, every parent is thrust into a world of chaos. So many things change for the better, though. 

It can be a crazy and worrisome world for a parent sometimes. It's not all fun and games, but as a family you'll get through it. I've learned that as long as we're all together, we'll be alright. 

Family first 💗

I feel like I have a unique perspective on life right now, and parenthood in general. Since becoming a parent, I have a quiet respect for all parents. It's the biggest and hardest thing anyone can do. You constantly give yourself.

And you do it all for them.

Her outfit says, "My daddy's crazy in love with me". There's no doubt about that. Everyday I'm thankful for her life. 

She's the greatest gift.

Today we celebrate all the good guys out there. Guys that are rock-solid. Guys that you can build a foundation on. The loyal friends, fathers, brothers, uncles, and grandfathers. The men who are positive role models, especially to children.

Cheers to all the good guys.

Happy 4 months

Wonder Woman 💗

"We can't believe you're already 4 months old," we whispered to her today. We love celebrating all things Arabella. 

If we're paying attention to 'corrected age', Belle is actually one month. It's easier to explain it that way to people that don't know her. She's just a month old! 

Arabella is still very small for a one month old girl. Let's just call her petite, shall we? 😊

Life is good in the arms of mom and dad. Not a worry in the world.

She likes to reach out and touch our faces when we hold her. She loves the feeling of our skin. She likes to pinch, grab, and hold onto things, including my cheek. 

She pinches me really hard sometimes. "Get me out of here Dadda," I bet she's saying. 

We've noticed her eye lashes getting really long lately. It's amazing to watch her grow. From a tiny magic bean, to a gigantic beanstalk, we've seen her sprout and bloom into the stratosphere. 

She's had a great last couple of days. Her oxygen needs have been minimal, but now we'll have to monitor her closely on the Diazoxide again. Let's see what happens in the days and weeks ahead when that drug really starts to kick in. We're staying positive. 

Arabella was still on the prongs, and her eyes were very watery again. Lots of sneezing. I can't imagine how it feels to have air pushed into your nostrils constantly. She looked like she had allergies all day, but otherwise she was great. All of her sugar levels were perfect. 

We bathed her in the evening and dressed her in a new onesie. Arabella has an entire wardrobe at the hospital now, tucked into boxes, and neatly placed under her crib. Kiera received so many gifts at the baby shower, and a lot of them are actually perfect for her now. 

Belle will be putting on a show for everyone. She's such a little star.

Happy 4 months sweetheart!

Belle Update: June 16

Hello, Big Eyes 😃

Arabella had a very good day. Lots of cuddles with mom and dad. We all benefit from those precious cuddles. 

Her sugars have been good since Wednesday. They've been on the higher side, actually, but no one's complaining. Belle's last injection of Octreotide will be in the early morning, at which point the Diazoxide should kick in.

The drugs are shifting gears again, and we'll get to watch it all unfold. Get ready for 'Round 2'.

At least Diazoxide is an oral drug, so no needle pokes required for that one. Last week it came to a boiling point, and the Diazoxide impacted her lungs and pulmonary artery. We'll see how it affects her this time around. The staff assured us that they will be following her very closely.

It's all eyes on Belle.

She took a break from the mask and tried out the 'prongs' today. The prongs go right up her nostrils but they allowed her face to rest. She sneezed a lot, though, and her eyes watered from time to time.

Since last week, a lot of nurses have been asking about Arabella. Some of them drop by to see her regularly, and it's clear just how much they adore her.

I guess I can't blame them.

There's something special about her 💗

The staff are very familiar with all of us. We're the veterans in the NICU by now. Everyone knows that every day they should expect both mom and dad alongside little Arabella, so we've all formed a lot of relationships with the people that come and go.

A lot of smart and devoted people give us great time and attention.

We took many new blankets, onesies and dresses with us to the hospital today. As Arabella grows up we'll have her wearing all of the nice clothes we received from the baby shower last weekend. 

Since Belle was born we've been thankful for so many toys, gifts, cards, thoughts, and prayers. So much warmth.

Arabella, Kiera and I have been surrounded by so much love. Thank you to everyone who has shown us such amazing kindness and support!

Belle Update: June 15

It's exciting to cheer for Bella. Everyone loves an underdog.

In sports we're usually drawn to the story of an underdog - the team or individual that overcomes great challenges and wins despite the odds. For some reason those stories are a lot more emotionally satisfying, aren't they?

I think it must be something ingrained within all of us, because everyone knows what it's like to be down and defeated. We have all felt crushed under the weight of the world at one point or another. We recognize the struggle, we see the fight and determination, and we can't help but celebrate the rise from adversity. 

We root for the comeback. We crave the rally and the eventual victory. The triumph is so much sweeter, because it was almost unexpected. 

Team Arabella, all the way.

Kiera and I felt stronger today, we had more energy, and overall we were more optimistic. 

Some days you can't help yourself, though. You get sucked into a dark hole of worries. You're consumed. Some days you simply can't escape the uneasiness. 

If there's one thing I've learned here, it's that every day is different.

Belle getting x-rays done on her knees and wrists

It was a busy day for Belle, but she was a good girl. She did extremely well throughout all of her procedures.

Today's heart echo revealed that she still had moderate pulmonary hypertension, but the staff feel confident that she's ready to go back to increased doses of Diazoxide (the sugar drug that likely caused her pulmonary hypertension in the first place). 

As parents, we have to put our complete faith in the staff, and that's not always easy in these circumstances. We're cautious and weary. We've seen the side-effects of some of these drugs, and we know how sensitive Belle can be. 

Things might get a little tricky for her again, but she'll be closely monitored. We know that she's going to get puffy again from the Diazoxide, and she'll have to work a little harder to breathe once the fluid accumulates in and around her lungs. 

We don't want to go back to that scary place, but our choices are limited at this point. We're basically at a fork in the road, and either direction has potential for some risk.

In the meantime, we're continuing to spend as much time with her as we can, and we're loving every moment. Luckily, the tougher days eventually pass and we start to regain our hope and strength...until the next difficult day. 

Rinse and repeat. 

On a tougher day it's best to go to bed early. You want to get your sleep and hope for a better and brighter day tomorrow.