Video: Strained voice

In this video clip you can hear Arabella's strained voice. When she's fussy she may grunt and groan, and occasionally her cries are silent.

Video: Loves her head rub

Here's a short video of Arabella enjoying a good old fashioned head rub (while she was still on the cannula) 😃

Return of the Smurf

Let's welcome the return of our beloved baby Smurf 💙

Belle had to go back on the mask this morning. The cannula proved to be too much for her, but we're proud of how hard she battled. She went the distance. 

Now Belle can have a deserved rest and hopefully recover from all of the extra work of breathing. Maybe we'll try the cannula again next week. 

Belle seems to require a certain amount of air pressure in her lungs, otherwise she exhausts herself. The cannula just can't deliver the kind of pressure that the mask can. 

The great news is that her lungs will only grow stronger with each passing day 😃

I see you! Belle on the cannula (yesterday)

Belle's fussy demeanor yesterday wasn't a morphine issue - it was likely a breathing issue. 

Arabella acted more like her regular self today after being placed on the mask. She settled down quicker, and her vitals were much better. Kiera and I took a sigh of relief. We can breathe easier now too 😄

It's hard work out here for a tiny Smurfette. She's had to deal with a rather fast tempo, and a lot of sudden changes (sometimes a few at once). 

It's okay to slow down. Take your time little one. Take all the time you need.

Metamorphosis

She's still working hard to breathe on the cannula, but she's holding her ground. Belle's one tough girl! 

Today she just didn't want to settle down like she typically does, and it was obvious that she was extra agitated. We tried everything to comfort her. It's hard to pin-point the exact cause of her frustrations sometimes. 

We know that it's perfectly okay for her to be fussy here and there. That's expected. But today it was a visible and prolonged state of displeasure. Her breathing was irregular. It took Belle longer to relax and get comfortable. Her sleeps were much shorter and lighter.

Something wasn't quite right. 

Soos patrol could barely help.

It could potentially be the morphine. The IV drip was finally turned off last night, after weeks of weaning her down to almost nothing. 

Belle might have noticed 😮

She's always been very sensitive to even the smallest change. 

Into the late night, Arabella got quite unruly, and the nurse eventually gave her a tiny oral dose of morphine. It was a tiny amount but it seemed to do the trick, and she was finally able to calm down. 

The nurse wrapped and bound Arabella tightly, and she lay like a cocooned caterpillar 😁

Perhaps she's working on her transformation, a metamorphosis of sorts?

You can't just rush through the caterpillar stage. It takes time to flourish - and one day Belle will surely emerge as the butterfly she's always been destined to be. 

One day she will soar 💜

Belle Update: May 23

She looks like such a big girl! 😍

Arabella had a quick moment of reflux this afternoon, so the nurse sat her up for a minute while she settled. 

Belle is still on the cannula. Her breaths have been generally short, quick, and at times very deep. She's working harder to breathe compared to the CPAP mask, but she's been a tough and strong girl up to this point, so for now the staff are going to keep her on the cannula. 

The nurses ensured us that she's being closely monitored, and we need not worry. They can always go back to the mask if Belle falls behind and needs extra help.

Kiera had a hard time watching her little girl breathe so quick and heavy. I agree that the staff are pushing Arabella a little too quickly, but on the other hand they really are watching her constantly. 

Kiera herself said that she was overdue for a good cry today. She needed an outlet for her frustrations. We lightened the mood by joking that mom might need the CPAP mask soon too, to help her breathe and keep her calm. Can we get that in an adult size, please? 😄

Both of my girls were tuckered out eventually 💗

It's not easy for mom sometimes. She's been worried about her Tinkerbell during the transition from ventilator, to CPAP and now to the cannula. She remembers the moments when Belle has struggled to keep up, and the set-backs that have occurred in the past. 

Everything is going to be alright. We just have to put our complete trust in the staff, and sometimes it's not easy. Parents can feel frustrated and helpless during this process, but that's totally understandable and even expected.

Parents always want to save their children from any type of struggle, no matter their child's age or size. 

God bless all the parents out there 💙

Belle Update: May 22

I love her fuzzy little hairs 😀

So much tape on her tiny face, but she needs it to hold the cannula in place. 

We noticed that this new way of delivering airflow has slightly affected her work of breathing. Belle's using more energy to breathe, and it tires her out quicker. It might take her a few days to get used to it. 

I think she can do it. She is Tinkerbell, after all. Small but mighty!

She was a touch harder to please today, but it's likely due to the cannula and the extra work she had to put in. I hope she can continue to stay on it. It must be so much more comfortable for her. When she was placed on her tummy this evening she really enjoyed burying her face into the pillow, something she couldn't really do before, since the mask and tubes were always in the way. 

She absolutely loves getting her head stroked and massaged. So many smiles 😊

I mentioned before that Arabella's receiving a new medication to stabilize her blood sugar. One of the side effects of the med is water retention, so she'll also need to take a diuretic to help her body get rid of the extra water. Hopefully she won't get too puffy. We like to see real baby fat, not that fake water stuff! 

The doctors had Arabella on a continuous feed today, so instead of feeding her 23ml every 2 hours, it was a very slow and constant feed, mainly to see how her blood sugars would respond. Who knew she could be fed continuously?

Always eating...I wonder how that would feel? 😄

We might be dealing with her sugar levels for the next few months, but it's nothing unusual for some preemies. Not a big deal at all!

She's such a good girl 💜

Sunday kind of love

Sleeping beauty 💗

It was a sweet Sunday spent with Belle. Weekends are the best days to be here since it's practically empty at the hospital. Everything slows down. It doesn't feel so chaotic. 

I swear, I'm not sleeping on the job. Kiera happened to catch me stretching my neck. It hurts from constantly looking down at Belle while she's in my arms. I know, poor me, right? 

Can't. Stop. Admiring. Baby. 😀

Dad's been doing cuddles everyday, sometimes twice a day, and I'm really starting to feel it in my neck because I just can't keep my eyes off of her. Yes, she's precious, but also due to the fact that I'm watching her visual cues all the time. Maybe a little too much. Dad needs to chill and relax more. Belle is a strong and independent woman, after all. 

Many diaper changes were made today, and I mean a lot. Belle's a poopin' machine lately, and we go through diapers pretty quickly. Good thing the hospital doesn't charge us by the pamper!

Overall, Belle's such a good girl. She doesn't give us any problems, although she might get a little fussy from time to time. It's very typical stuff. Usually she wants her soother, and that's why 'soos patrol' must always be on duty. 

On the double!

It's all hands on deck for Arabella. Constant love and comfort.

It's been so enjoyable having Belle in the crib. I never thought it would be this good. We're interacting with her on a new level now, without borders or barriers between us. I can lean in anytime to kiss her cheek, or whisper something in her ear. It's empowering, and it makes us feel more like normal parents. 

We gave Arabella a bath this evening by lifting her over a bassinet and pouring water over her gradually. We even shampooed her tiny little hairs. 

Prior to the bath, a respiratory therapist helped take off her mask and attach this 'nasal cannula' so that Bella could finally get a break from the constant pressure of the mask and its attachments. 

This cannula is much easier on her. It doesn't press into her face like the mask does. Comfort aside, we'll see if Belle can maintain her breathing rate on this new apparatus. It doesn't have the same pressure as the mask, but who knows, maybe she'll do really well and surprise us?

Admittedly, mom was a little freaked out at first. She's wasn't sure if Arabella's ready for such a leap ahead. 

Mom needs to relax too. Arabella has surprised us before, so we need to let go and see what she can do on her own. 

She's progressing, and therefore we should too!