Belle Update: July 4

Arabella had a good day. Her air pressure was lowered this afternoon to 6 (5 is the lowest), and her oxygen levels were hovering around 23%. She's making good progress, so the staff will start to challenge her again. 

Sprawled out, like a frog on her back 😄

We've been spending a ton of time with Arabella now. We're at the hospital 10 to 12 hours a day. The day goes by so quickly, though, and before you know it we have to say goodnight. 

Sometimes we wish we were back at the rental suite. We miss the walks. They were refreshing, and they sure beat sitting in a car.

Being such a short distance from her was the best part. Mom and dad were practically around the corner. We were there for her at all times of the day.

We'll never forget the gift of that rental suite. All of you that supported us made such an impact in our lives. You guys gave us the gift of time. You gave us more energy. You helped us get through it all.

Thank you for your helping hand. Thank you for helping us raise this amazing little girl. We'll never forget what each of you have done. 

Arabella was more alert this afternoon, which was great. It meant more time for us to play and interact with her. 

She's so awesome. 

Just your typical check-up before we weigh her. Usually she's completely naked on the scale. No mask, no diaper, just naked Bella 😊

It was so hot in the room that we had her outfit completely unbuttoned at one point. It's either too hot or too cold in that room. Either way, we check her temperature every 3 hours to make sure she's doing okay. 

We're pretty much on our own with Arabella. It's up to us when we want to pick her up, when we want the change her diaper, when we want to bathe her, etc. Kiera and I tag team all of these duties because it's tricky for one person alone.

As soon as Belle falls asleep, we reluctantly slip out and hit the road. We're exhausted by the time we're home, but it's the only way to do this. We only feel satisfied when we give 100% of ourselves.

Belle Update: July 3

Arabella's doing very well lately. Her breathing hasn't been an issue since they've started dropping her Diazoxide dose last week. 

Her breathing is a lot better. 

We're continuously watching her sugars. Every 3 hours the nurses are pricking her heels in order to get a reading from the glucometer. 

Her sugars need to be 3.5 or higher, and she can't have two bad readings in a row. The Diazoxide dose is only lowered when her sugars are stable for 24 hours. 

That drug causes her breathing issues. It's likely one of the main reasons why Arabella's still on the CPAP mask. That's why she can't move forward. 

It also makes the fine hair on her body grow. It's a peculiar side effect, don't you think? 

Her forehead has gotten a tad hairy, but you can only see it up close. It's kind of funny. So fuzzy 😊

It's not really the side effect we care about, but it's the only one we can visibly see. What about the side effects that we can't see?

These drugs are nasty. There's no nice way to put it. No little one should take these drugs unless they absolutely need to, so we need to help Belle drop these meds as soon as possible. 

Same goes with her reflux meds, Omeprazole and Domperidone. It's questionable whether she even needs them, and that bothers us. 

There are drugs at every turn. 

Sometimes it feels like we're going from one drug battle to the next. You have to fight for your little one here everyday, you have to watch them closely, and you can't let anything go over your head. You need to do your homework, keep track of every drug and every dose. 

You need to constantly advocate for these little ones at every step. They're definitely worth fighting for!

Belle Update: July 2

Bella had another high temperature this morning, but when we arrived at the hospital it was coming back to normal. We breathed a sigh of relief. We don't want any more infections holding her back.

Today she slept through the entire day. Arabella's on her own schedule some days, but that's okay. 

Over the last week she's been awake for longer periods during the night. She's up in the early morning too, and then sleeping the entire afternoon, with a few brief moments of wakefulness towards the evening. 

Party all night, and sleep all day kind of attitude 😎

We had a little less interaction with her, but we're happy when she sleeps because it means that she's resting, growing, and developing. Nothing wrong with that!

Belle has a lot of catching up to do, but it's obvious how big she's getting. Yesterday she surpassed the 3 kilo mark (6.6lbs), which is quite amazing considering what she's been through over the last 4 months. 

Our next steps are to get Arabella's breathing under control, and hopefully wean her from some of the drugs that she's taking. 

Once Belle doesn't need so much air pressure (via the mask) we can work on her bottle feeding and see how she does. It might get tricky, though. Babies with chronic lung damage have a lot of issues with swallowing.

Overall, there are still a lot of unknowns, and a lot of things that can delay her progress, so we don't really have a timeline for when we can take Arabella home. We have to stay patient. We'll get there one day.

Canada Day

Happy Canada Day to my fellow Canadians. July 1st marked Canada's 150th birthday. It was a big one, and we had a great day celebrating it with Belle.

She didn't have anything red to wear, unfortunately, so white and pink would have to do. 

Arabella's oxygen needs were in the 25% range, and that's the best we've seen in a long time. The extra doses of diuretics have helped Belle get rid of the moisture in her lungs, which makes it easier for her to breathe. 

Her sugar medication was decreased again, and likely that also helped her lungs. Arabella's blood sugar has been good over the last few days, so we hope the Diazoxide dose continues to go down. 

Since we can't bottle-feed her yet (due to the air pressures in her mask) we continue to give her some small amounts of breast milk for taste.

She enjoys it so much. Her hands and legs move in delight.

We put her to bed and she was visibly happy from all of the events of today. We had a wonderful Canada Day.

Hand-me-down genes

Belle had another fantastic day.

The nurses just can't get enough of her, and they compliment Arabella on a daily basis. They come to her bedside and ask about her progress constantly. 

She has a lot of admirers 😍😍😍

There's no question that we've formed a lot of wonderful friendships here, including doctors, nurses, respiratory therapists, and other NICU parents.

We received some great news today.

A few months ago Kiera and I had our blood drawn in order for Genetics to send our samples to a lab in the US for DNA/chromosome analysis. Apparently it was expensive, but we got the OK for funding.

It was to determine Arabella's fragile bones, along with any other underlying conditions. And what did they find? Absolutely nothing. 

They found no chromosome abnormalities that would explain her extremely fragile bones and fractures. Her prematurity and low birth weight are likely to blame, and nothing more.

The Genetics team gave us the option to include Arabella in a research study in the near future, but we're satisfied with the findings we've received. We don't want to dig any further. This is where it ends.

We're over all of these genetic tests. Even when Belle was in the womb we went through a few, so I hope this was the last one. 

She didn't get the best start in life, but it's great knowing that Arabella's genes are solid. Her bones are healing and they'll only continue to get stronger, just like rest of her. 

We're relieved with today's great news 😊

Belle Update: June 29

Belle had a great day. 

The room was a busy one, with 3 new admissions since yesterday. Needless to say, there was a lot happening around us. A lot of new and nervous faces. 

It's a painfully scary, yet beautiful world here. I really feel for some of the other parents in the NICU. It breaks my heart sometimes. Their pain often makes me forget about our struggles.

Everyone's story is different, and they say you shouldn't compare, but when I see some of the things that happen around us, I start to realize just how great we have it. 

Arabella's going to be okay. She'll get through all of this eventually. 

We'll get through all of this...eventually...

Look how awesome she looks. You would never guess by looking at her that she's going through so much. 

Today she came off the antibiotics, and off the IV. A second round of blood cultures came back negative this afternoon, so there's nothing to worry about. 

The staff increased her diuretics doses today, so she was able to breathe a little easier by the end of the night. She's already looking less puffy to me, too.

She had a lot of wonderful and alert moments. 

Looking at us and interacting with us. 

Later into the night we gave her a warm bath and dried her immediately. 

We placed her in a fresh new onesie and we stayed with her until she fell asleep. Sometimes it takes her a while. Belle always wants one of us to hold her soother, too. 

In the last month or so, Arabella's been sleeping very well during the night. She'll usually wake up a few times, but only for brief periods. 

She's getting to be such a big girl, it's incredible. Today was just an awesome day. 

Belle Update: June 28

She started the day on 'high flow', but by mid-afternoon she was back on the CPAP mask. 

The mask is her best friend. 

She gave it her best shot on the high flow, and that's all we can ask. Arabella was just working too hard. Her poor lungs can't sustain that amount of work.

She needs a certain amount of pressure to keep her lungs open constantly. It lightens her workload, and the CPAP mask does that. 

Her lungs have a long way to go, but it's not a fair game from Belle's perspective. She has side-effects working against her, like moisture in her lungs, and it's all because of this sugar drug, Diazoxide.

You can tell that she looks puffy in today's pictures. A few weeks ago I mentioned that we'd see her swell again, and now it's quite obvious. 

She's on so many drugs right now, and I despise them all. I feel bad for her and I worry. 

I see how everything affects her. 

They've started to wean her Diazoxide dose, at least. Arabella's sugars have been quite good this week, and hopefully they stay in a good range, otherwise we'll never get rid of this drug.

There are so many things going on with Arabella, and we still have a long road ahead of us. Instead of getting frustrated, we simply need to get comfortable. 

We're in it for the long haul.

Today was another busy day filled with x-rays, glucometer pokes, blood samples, IV line switches, respiratory changes...and of course cuddles with mom and dad. 

Bella loves her cuddles, and we love them too.