Belle Update: June 6

"Look guys, I can do this on my own!"

Belle loves her soos. We occasionally dip it in breast milk so that she can actually taste what she's getting through her tube. Each of her feeds go directly into her stomach, so we need to keep the natural sucking/swallowing instincts alive by using her soother. 

Practice makes perfect.

Once Arabella doesn't need the constant air pressure from the mask she can start taking tiny amounts of milk by mouth. Right now the pressure would disrupt her stomach too much, so we have to finish battling her lung issues before we move onto feeding. Belle is still very pressure dependent. 

Little by little, we'll get to where we need to be. 

We spoke with an Occupational Therapist today and we discussed all sorts of these things in regards to Arabella's development. 

Belle's not so tiny anymore so we need to start treating her more like a newborn and less like a fragile preemie. We need to sit her up more often, pick her up, kiss and hold her - do whatever make us (and her) feel good.

It's critical that Belle gets plenty of love as she grows. Being held, touched, and talked to are important aspects to any infants emotional and cognitive development. But it especially matters in the NICU, where negative experiences can also impact her profoundly into the future. 

We want to make positive impacts on her development, and we're doing all that we can right now. 

We're on the right track. 

Belle is praying, "Please Lord, watch over me and all of the babies in the NICU tonight, along with all of the children fighting hard battles at Sick Kids and around the world. Amen."

Another busy but eventful day. This dad needs to get some sleep now too!

Belle Update: June 5

While everyone is asleep at 4:30am, I come here. I refuse to go to bed without first sharing something about our day. 

Kiera and I have been spending a lot of time at the hospital lately. We can't help ourselves. We're just a bit crazy for our little girl. 

Can you blame us?

Our schedule has been drastically altered, but we don't seem to mind. Like the Fresh Prince of Bel-Air would say, "Our life got flipped-turned upside down." 😁

Chores like cooking, laundry, cleaning, etc., all happen well after 11pm or midnight when we're finally back home. It's the only time we have left to do anything for ourselves. 

The mornings are generally too rushed. There's never enough time to get anything done because there's an urgency to go and see Belle as soon as possible.

That's all we seem to want to do, and it makes us both happy. 

We can sit by her bedside for hours, holding her soother or grasping her hand. Now we can pull her out for a hold anytime we want, so we end up having cuddle marathons for hours. Around and around we go...and switch! 

It's time well spent.

When she was a tiny little thing it was a lot different. There wasn't as much interaction with her, but now Belle has developed a personality, and we can't get enough of her. 

There's also another part of us that wants to make sure she feels enough love and support to outweigh all of the negative stuff she has to go through. 

Belle's blood sugars were all good today. Doctors likely won't be increasing her glucose medication (for now), which is a relief. They did however start her on a dose of Lasix (the stronger diuretic) every 12 hours for a total of 3 days to see if her breathing gets better.

Her latest chest x-rays showed that she had a lot of moisture and fluid in her lungs, so the Lasix should help eliminate that and bring her oxygen requirements down. 

We'll see how that goes. 

Everything is somehow interconnected. One medication has an impact on something else, and so we're at a standstill with her progress again. What can you do?

Kiera and I aren't bothered anymore. If we can't get Arabella home, well then, we'll just have to bring home to her.

We're absolutely head over heels for this girl 💗

Belle Update: June 4

"Just hold my hand mommy."

Belle was her usual self today. A good girl. So calm and relaxed. 

I don't count her brief moments of crabbiness 😄

No one enjoys coming out of a warm bath and into the cold. Luckily, Arabella is quickly soothed. Her fussy moments don't last very long and within a minute she's back to being tranquil again. 

The doctors haven't changed her air pressure settings for a few days, so she's content. Breathing isn't a chore, and she doesn't have to work so hard. They pushed her a little too much last week, and she didn't appreciate it.

Belle can't handle any sudden changes, and she certainly doesn't like to be pushed. She demands to go at her own pace, and she continues to make that clear to the staff. 

"Hold on a second you guys. Let me catch my breath before you lower my settings again."

Arabella had low sugars again today so she was being pricked every 3 hours. It was back to constant check-ups until the glucose levels normalized, and they eventually did. 

Check one, two, three. Is this thing on? Do these sugar meds even work? 

That darn sugar. Kiera and I are hoping that she won't need to have her dosage increased. If she continues to get these random low results the doctors might be forced to, though. Bella would be all kinds of puffy at that point.

We bought Belle a mobile to hang above her crib today. The nurses encouraged us to go out and buy one, so we did. Now she can have something to look at when she's laying on her back.

She was so tired in the evening. The bath seemed to do the trick!

Another exciting day! 😃

Blue reminders

There's a tiny preemie in an incubator next to Belle. He's in the 800 gram range. 

"Hello dear neighbour, I used to be a lot like you!"

He's a fragile little thing with wrinkly skin and thin arms and legs. He had the UV light shining on him all day, so that's why some pictures of Belle have a blue tone to them today. 

It was only months ago that we saw Belle under the UV light. Feb 23rd to be exact (thank you blog). 

Flashbacks of another time. One day it will all be a distant memory - a story to tell Arabella when she's older. Watching her grow and develop outside of the womb has been such a trip. We witnessed the entire third trimester right in front of our eyes. 

This is how she looked when we were putting her to sleep at the end of the night. She was resisting her bedtime and pushing her limits, like a child that desperately wants to stay up late with mom and dad. 

"Just 5 more minutes, mom!"

It was Saturday night, after all, and the NICU is the place to be on University Avenue in downtown Toronto. Ladies free before midnight 😉

Belle refused to sleep, but it was rather comical. She was opening one eye periodically to check if we were still there. She makes us laugh with some of the things she does. 

"Who, me?"

She loves her night time routine. She just needs her soother, butterfly pillow, a lullaby playing, and her back rubbed or patted. Hmmm...sounds a bit like the makings of a princess, huh? 😄 

Belle likes to stay up late. It takes her a bit of time to fall into a deep sleep, and I can't really blame her. It's usually quite loud in the room. Imagine 5 other little ones and all the various people that come and go. There are constant alarms sounding off, intercoms, babies crying, nurses talking or even yelling, other parents interacting with their own kids...

Our room has been especially busy lately. A lot of emergencies. Some very sad and heartbreaking situations, too. So incredibly sad. 

We see everyting happening around us and we think to ourselves, "How did we end up so fortunate?"

We've dodged bullet after bullet. We've missed so many disasters and catastrophes. 

It's been a long journey, but Arabella has done remarkably well. We can only thank the heavens above 💙

Belle Update: June 2

Belle loves her butterfly pillow. It gives her just the right amount of cushion. 

She was an exceptionally good girl today 💜 

It was a fantastic day, although she required increased pressure and oxygen. The extra fluid in her body (especially around the lungs) had an effect on her breathing. She began to tire last night. Eventually, she couldn't keep up.

Doctors were forced to administer a strong diuretic to help balance her out. It was a single dose of Lasix, and it kicked in right away. Lasix works immediately, unlike the standard (weaker) diuretic that she receives daily. Lasix is the good stuff. The hard stuff. 

Needless to say, Bella went on a peeing spree for the entire day, and she made some extremely heavy diapers in the process. 

Bella's pouty face 😣

We decided to give her a bath again tonight. It makes her feel fresh and gets her in the mood for sleep and cuddles, so why not? Nothing is holding us back from doing our regular parental duties. 

We love our evenings with Tinkerbell. We love putting her to bed. 

She had a total of 4 cuddles today - 3 with mom and 1 with dad. Each cuddle was at least 1.5 hours (the length of her feed), so that's roughly 6 hours of 'kangaroo care', as they call it in the NICU. 

We like to call it 'cuddles'. Cuddles with mamma and dadda 😊

Today she was being fed 47ml every 3 hours. That's a lot of food for a tiny stomach. Months ago we were excited when she was getting 7ml of food, and now look at her go. So much growth. So much momentum.

The feed runs for 1.5 hours at a very slow pace, and the equipment (pictured above) helps push the food through a tube that eventually finds its way into her tummy. It's magic I tell ya. 

Once Arabella is off the CPAP mask (and doesn't require any air pressure at all) she can finally start learning to take her food orally, but until then she's practicing with her soother. 

She's a master of the soos, without a doubt. 

On the rise

I can't believe we're already into June. Where does the time go?

Kiera was feeling much better today. She went for her ultrasound and started taking her antibiotic. I guess mom is back in business 😎

Proper rest and relaxation is so necessary, isn't it? I'm glad she did the right thing and stayed home yesterday (as much as it pained her). It was a reminder to both of us - slow down and take it easy on yourself. 

Kiera missed her baby girl, and she was glad to be back in the NICU today. Mom deserved two cuddles with Bella to offset yesterday's absence, and dad was more than happy to offer his spot.

"Yay! Mommy's back!"

Arabella's definitely getting puffy from the sugar meds. It's hard to distinguish water retention from baby fat sometimes, but we see Belle everyday and we can visibly tell how swollen she's getting. We know that she's gaining weight and naturally getting chubby, but it's a mixture between that and the hypoglycemia medication.

Tonight Arabella weighed 2.5kg (5.5lbs). Oh baby! It's like music to our ears.

Soon she'll outgrow the preemie onesies we used to think were so huge. "When will she ever fit into these?", we thought just months ago. 

Banana for scale 😊. In a couple of weeks she just might outgrow this too. 

Arabella's on the rise, and likely making up for lost time.

Belle's using size 1 pampers now. Size 1 is for babies in the 8-14lb range, so they're baggy on her between the legs but that's okay. They're easier to place on her, and have lots of extra slack around the waist.

You can see the size 1 diaper on the far left. What a difference from her first diaper! What a progression huh? You've come a long way Arabella...

We gave a bath tonight, and she seemed to enjoy the warm water. We can finally bathe her fully in the basin since she doesn't have the IV line in her leg anymore. No more IV restrictions. Sponge baths are for tiny babies, not this big girl!

After bath, it's towel time!

And who could resist one last cuddle with mom before bed? There's nothing like the cozy feeling of being snug in the blankets after a nice warm bath.

What a fun and eventful day!

Running on empty

It turned into daddy-daughter day. Just me and my girl...

Kiera and I had plans to drive out and see Belle in the early afternoon, but sometime after breakfast Kiera got the chills and started to feel nauseous. She checked her temperature and realized that she had a fever, so off to the walk-in clinic we went.

Kiera is exhausted, dehydrated, and likely has a case of Mastitis (inflammation in the breast that gets infected). She was showing all of the symptoms. We booked an ultrasound for tomorrow, and in the meantime the doctor ordered her to go home, lay down, and apply a warm compress.

Kiera was sidelined for the day. She felt guilty that she wasn't able to go and see her little Tinkerbell 😟

It's okay mommy. Don't be too hard on yourself.

So many feelings of guilt throughout this experience. Every hour you're away can feel like you're missing out on something very special.

It's not always easy to keep your feelings in check.

I've read that NICU parents often feel the need to martyr themselves for their children. We tend to forget about ourselves on occasion, and this should be a reminder to all of us. Your kids need you at your best - don't forget about taking care of yourself, too.

More than anyone, moms especially need time to rest, recover, and regenerate. Breastfeeding (and pumping) take such a hard toll on them.

Moms need to fuel-up more often.

Belle and I had two long cuddles today, and we talked about mom behind her back the entire time 😊

Thank goodness for technology! I was instantly able to update Kiera with picture messages and a few videos I uploaded immediately to youtube. 

Today, daddy obtained exclusive media rights to Arabella - and it was wonderful. We certainly made the most of it. 

Belle's last few days have been pretty good overall. Her sugars have been quite stable, so the meds look like they've started to work. She's slowly being tested on the lower pressures of the CPAP mask and we're hoping she can maintain a relaxed breathing rate as they wean her down. 

We're making progress. Baby steps!