Perception is everything

Another wonderful day with Arabella. She's been using the "big girl" soother for the last few days, but it's basically a standard newborn size 😄 

To us, regular is big! 

Perception is everything, isn't it? 

Every so often I remind myself where we came from, and pictures like this serve as those reminders. 

Arabella's first cuddle with mom (8 days old)

This is why we feel so blessed. 

Arabella was so small and fragile that she looked more like a newly hatched baby bird. Among the various stages of preemies, she was on the micro side of micro-preemie. A preemie to the extreme. 

Kiera and I would notice 5 and 6 pound babies in the NICU and we'd stare at them wide-eyed. They looked absolutely gigantic to us, as if they were some mammoth babies on growth steroids. 

There's a 500 gram baby girl in our room currently. She came three months early as well, and she looks just like Arabella did.

Somehow all three of us have found ourselves on the other side of the equation, but I feel for that baby girl, and I feel for her parents. 

I honestly don't know how we managed to cope during that time. God must have carried us everyday to the hospital and back, because it was a whirlwind of emotions.

Some days you just need a reminder I guess. 

Belle Update: May 19

Mom and dad are always ready with the soother. It's a necessity at times. One of us will usually hold it because if it pops out she can get quite angry 😡

Kiera and I call it "soos patrol" (soos being short for soother). Who's on soos patrol? Oh my gosh, did we lose the soos?

When Arabella gets too fussy we reach for her soother in hopes to calm her. If the soos doesn't work it's likely that she's uncomfortable. 

Sometimes it's out of our control, but we always try to make things a little bit better for her. We change her diaper, perhaps change her position, adjust the tightness around her mask - whatever we can do to limit the amount of discomfort she feels. 

The truth is that Belle is likely in constant discomfort, especially from the air pressure in her mask. It bothers her tummy and interferes with her feeds, making her feel continually gassy, cramped and constipated. For these reasons, the respiratory therapist lowered Belle's air pressure today. We'll see if she's up for the challenge. It's definitely a balancing act, but Belle will let us know what she can tolerate. She needs encouragement! 

Here's a quick view of some of the issues going on with Belle at the moment:

• Her damaged lungs are healing very gradually, and her oxygen needs are in the 28-30% range. 
• Based on her most recent x-rays, her various bone fractures are healing slowly as well, but still present.
• We're seeing continued dips in Arabella's heart rate and oxygen levels (apnea and bradycardia). 
• Her blood sugar is being monitored more frequently, and soon she'll be on a medication to help stabilize her sugars between feeds. 
• Her severe diaper rash and bum sores are still present, but healing. They were open wounds at one point, so it's getting much better. 
• Her morphine dependency continues to drop, and in a week or so she can hopefully scratch that entirely.

If we look at the big picture, we're so incredibly blessed to be dealing with these kinds of issues right now. There are so many difficult and tragic scenarios going on around us at Sick Kids currently. Kiera and I hear about it first hand. 

I don't know how some of these parents find the strength. One day I'll have to write a blog post about it. 

Thank you Lord for all the mercy you show us daily 💗

Growing pains

Little smurf had a pretty good day.

Unfortunately, she developed a pain in her rear over the last few days - and just to clarify, that pain isn't her dad! 😀

She has a diaper rash along with some skin breakdown. It looked worse yesterday but today it was slightly better. Hopefully it will continue to heal. 

The night nurses were advised to dry her sores by placing her bum in the air (uncovered) while she lay on her tummy. This morning when the day nurses came in for shift change they each got a full view of Arabella's naked rear end, sticking out at them. That's a great way to start the day, huh?! 😄

They all got a kick out of it apparently. Arabella is always good for a laugh. 

The other issue today was her blood sugar. It was suddenly low in the evening. Belle had to go through some extra pokes for blood work in order to make sure her various other levels didn't drop as well. We thought she was on the right track with her sugar finally, so this was rather odd. The staff will continue to follow her very closely again, which means more frequent pokes for blood. 

Poke, poke, poke. 

It never ends. Even when they're totally healthy, the pokes and check-ups never cease. 

Below you can see a picture of mommy holding Arabella's soother, trying to make her as comfortable as possible while the nurse draws blood from her heel. 

Do you think preemies remember pain from the NICU? I was curious to find out myself, and from what I've read it's possible, but not definitive. 

It's interesting to remember that the first sense to develop is the sense of touch. We also know that newborns can recall some sensations from the past, like the sound of their mother's voice and music they heard while in the womb. 

The pain wouldn't necessarily be consciously recalled, though. It's not like they would truly remember it, but they might react to a specific touch, sound or smell that could possibly trigger a reaction. 

It's kind of like associating the smell of alcohol with the pain they felt during medical procedures (when disinfectants were used). The babies pulse might race in anticipation of something happening, simply because they recognize the smell. 

There is also another school of thought that says preemies' responses become muted to pain (from all the repetitive painful experiences). 

Regardless if they remember or not, parents in the NICU must comfort their children in these situations, while their babies are experiencing it, or afterward. You want to change negative associations with positive ones, so you need to make sure you give them all the love and care you possibly can. 

Video: Pats on the bum

Before bedtime Arabella enjoys her pacifier (daddy has to hold it) and pats on her bum (mommy's specialty). We feel better leaving the hospital knowing that she's calm, relaxed, and hopefully asleep.

I love how she holds onto my finger, but this cutie already has her daddy wrapped around hers 😘

Towards the end of the video you can see the size of the crib in relation to her.

Video: First day in the crib

Here's a short video of Arabella during her first day in the crib, as she tries to settle down and get comfortable. She likes to express herself with her hands, of course 😀 

Happy three months

Happy three months baby girl! Mommy and daddy are so incredibly proud of you 💗

Kiera and I were extra excited to go and visit her this morning. She's our 'little big girl' now, in a rather large and wide-open crib. It's like letting a 2 year old sleep on a king size mattress - they've got all the room in the world! 

So many things to celebrate lately.

This month we witnessed Arabella go through PDA surgery and recover exceptionally well. She eventually came off the vent and upgraded to the CPAP mask. She officially surpassed 'full term'. She graduated to a crib. And today she made it into the 'two kilo club', weighing in at 2005 grams (4.4 lbs).

What a month for Arabella.

We celebrate each of these milestones because, well, we need to. Every single celebratory moment is another step closer to the end goal - bringing Arabella home. 

It gives us hope and lifts our spirits. Milestones are something to look forward to, and surpassing each one means we're that much closer to leaving these monitors and wires for good.

Let's see what the next month will bring us.

Pulling me further
Further than I've been before
Making me stronger
Shaking me right to the core
I don't know what's in the stars
Never heard it from above, the world isn't ours
But I know what's in my heart
If you ain't mine I'll be torn apart
I don't know who's gonna kiss you when I'm gone,
So I'm gonna love you now, like it's all I have.

Wise words by John Legend in his song 'Love Me Now'. Listening to it the other day at the hospital gave me the chills. The song has somehow always reminded me of Arabella and this entire growing experience.

Funny how songs can mean something different from one person to another, depending on what they're going through at the time. I wonder what it would mean to you right now?

John Legend spoke about the inspiration behind the song, "Just seeing what is happening in the world, you never know what's going to happen, and you never know about tomorrow. We have loved ones around us, and of course I have my own family, and you have to hold them close, and give them all you got right now."

It's a simple yet powerful concept.

Yes, things might seem uncertain in our lives sometimes, but you shouldn't let uncertainty keep you down. Don't worry about tomorrow. 

Sometimes you just need to focus on right now. 

Live for now, love for now. 

Crib girl

It was a lovely surprise to see Arabella in a crib this morning. Kiera and I marveled at how easy it was to lean in and give her a kiss. We can definitely get used to this. 

So many kisses 😘😘😘

Belle needs to be dressed up or bundled tightly so that she stays cozy and warm. Bring on the blankets, cute dresses and onesies. We joke that doll clothes would still fit her at this point. 

We should give Belle more credit, though, she's definitely big enough for the crib. 

Welcome to the big leagues, Belle. 

Welcome to the show. You were protected in your isolette, separated from the constant noise, dust, and general hustle of the outside environment, but you seemed to want this crib so badly. Well, you got your wish. Now you can show the world just how big you are.

I'm happy for you baby girl. Honestly! But here's a piece of advice from dad: Growing up doesn't necessarily mean it's going to get better, or easier. 😉 Don't rush to grow up so fast, okay? Take your time. Enjoy each step and point in your life.

She got her first vaccinations last night, the typical ones that a newborn would receive. A few weeks ago we told doctors to delay the shots as long as possible in order to give Belle enough time to recover post-surgery. 

Sometimes it seems like the doctors want to do too much at once, while Kiera and I are advocates of doing things one at a time. "Can we just drop her morphine and see how she does first? Before we adjust anything else?"

We know that Arabella is sensitive to change. Too many changes at once and it can throw her off. We see it first hand, and our nurses do too. The doctors just don't know Belle like we do. 

Today we stayed way too late at the hospital, but it was really hard to leave her side. It's getting a little harder and harder to leave every day. Sometimes we're overcome by feelings of frustration and helplessness. 

We feel sad to be going home without her, and we miss her as soon as we walk in the front door.