Christmastimes 2012

Nyana was supposed to be a Christmas baby. Her original due date was December 17th, and from the moment we found out we were pregnant, Don and I looked forward to the holiday—our first Christmas as a family after spending almost a decade’s worth of Christmases as a twosome. And then before we knew it, I was locked up on bed rest and then it was September and her two-pound arrival dashed all hopes of a happy family Christmas at home with a newborn. For a few optimistic weeks shortly after her birth we still hoped that she’d just ride out her third trimester on the outside and still come home just before Christmas, as planned. But of course, “as planned” never happened. And so we spent the whole of the following year healing and growing and regenerating lung tissue, and when December 1st arrived, Don and I started to get excited about her first real Christmas, finally, 15 months after she was born.

Then two weeks before Christmas, she got sick.

‘Twas The Night Before Christmastimes

‘Twas the night before Christmastimes, when all through the flat
Not a creature was stirring, not even a cat.
The stockings were hung on the CD shelf with care
Because we all know the best hook support is found there.

Nyana was nestled all snug in her crib,
while she danced with visions of food stuck to her bib.
And Mumsy with her book and I stalling for bed
Had just locked the front door and given Princess her meds.

When out in the alley there arose such a clatter,
I sprang from my couch to see what the heck was going on out there – there are people trying to sleep, dammit!
Away to the window I flew with my phone
To get a good pic of this, whatever was goin’ on.

As Seen On Facebook

They say misery is a muse. If I didn’t believe it before Nyana was born, I certainly believe it now. I was shocked when I logged in tonight to see that the Sunshine Brigade has been missing in action since you all celebrated Christmas! Don’t get me wrong—I love when no news is good news—but I miss sharing our perfect little lady with the world.

It’s been busy in Nyanaland as of late. We brought her home from the PICU on Christmas Eve as planned, and had an eerily quiet day on the 25th as the world celebrated the holiday without us. We didn’t hang our stockings, we didn’t open presents, we didn’t gorge ourselves on turkey and overimbibe just a little. It was just an ordinary day while everyone we knew enjoyed the biggest day of the year, and Don and I almost felt lucky that we’d managed to enjoy an entire Christmas day stress-free. The rest of the winter break rolled on by with Don practising his skills at being sole caregiver and I sat on the sidelines watching, practising letting go.

I’ve been back at work for three weeks now and loving every minute of it. Don is settling in nicely to his stay-at-home-Dad role and we’re test driving alternative titles for him. Don is leaning towards a variation of Hausband, while I’m thinking more along the lines of Manservant. For now we’ll just go with Director of Family Operations.

But in all of our busyness we’re sad to see the blog neglected as it has been. We have so many things we want to share with you all, like how she’s so close to walking now, or how she calls the cat a Gak! every time she sees her, or how she’s learned to hold her play cellphone to her ear and chatter up a storm. But these tiny snippets of awesome aren’t fit for a blog post, and as Nyana grows up and grows out of the tiny preemie she was, this blog is becoming less and less the vehicle for telling her story. So with these considerations in mind, the Sunshine Brigade has taken up residence on Facebook. Become a fan to keep tabs on What We Made—updated daily with pictures and videos and anecdotes of everyone’s favourite preemie. We’re not abandoning this blog, but we don’t want to abandon you, either. Like us on Facebook to stay up to date on the day-to-day goings-on in our world, and if you haven’t already, subscribe via email to the blog so you don’t have to keep checking back for updates.

LIKE the Sunshine Brigade on Facebook!

PS: Stay tuned for a holiday update—there are only 19 shopping days until Christmastimes Day! We put up the decorations today and next week we’ll put up the tree.

Sit Down, And Grab Some Egg Nog

I hate not having her here. It’s quiet and I feel like we’re missing something big – like the front door…or the bathtub. Something big and important that you need to have there and it would just be weird and wrong to not have it there if it were suddenly gone.

We get our front door back on tomorrow. Or today, by the time most of you read this.

At this point it’s a pretty sure bet, although I suppose we can’t discount the possibility of an eleventh-hour crisis of some imaginable sort, but…really? No. She’s done really well this week, and is pretty much back to her regular self now. She’s making lots of noises and moving around as much as her cords and her crib will allow, and at this point we’ve weaned her settings back to where they were before she got sick. She’s still isolated and under observation, but that’s just for the window view and the VIP service at this point. By the time most of you read these words, she’ll be home where she belongs and we’ll be taking it easy and just keeping her under observation.

The PICU Edition

I miss the NICU. Never thought I’d ever utter those words, but having spent two weeks now in the PICU—also known as the TCU, or transitional care unit—compared to the nursery down the hall, it’s way harder this time around.

In the NICU Nyana wasn’t able to crawl the length of her crib, and pull to standing and tangle in her cords. She wasn’t able to remove her bipap mask and lean over the edge of her crib when no one is looking or sit herself back up when I try to lay her down for a nap. In the NICU I didn’t have to bargain with nurses and care aids to keep her company when I left the room. And she definitely wasn’t able to scream for us to stay when we tried to leave her.

In the NICU Don and I didn’t know how empty our apartment felt without her, how silent our place is without her tackle, or how much we’d miss the schedule of Nyana time when she wasn’t with us. In the NICU I didn’t know just how much I hated the trek across the city to see her, how burnt the Second Cup coffee tastes and how dry the constant hand-washing and sanitizing was making us. In the NICU we had no idea exactly how much awesome we were leaving every night when we closed that door and left her. Leaving her every night in the NICU was exhausting; leaving her every night in the PICU is heartbreaking.

Back To The Beep

The original title of this post, when I started writing it on Saturday night, was The Emergency Room Edition. Then on Monday night when I sat down to continue, I changed the title to The “My First Cold” Edition. And now here we are on Thursday, four days into Nyana’s most recent hospitalization, and we’re fully entrenched in the beeps and the cord management and the nurses and the long yellow hallway—a hallway that is noticeably shorter now that we’re in the ICU instead of the NICU, but a long walk to and from Babygirl nonetheless.

Nyana occupies herself in the triage room, waiting for the doctor.

Treatments For Noah

It was almost a year ago now that I told you about my friend Olivia and her baby boy Noah. I called her Liz back then when I told you about her, in an attempt at anonymity for her and her family, but it was last Christmas we all learned of my friend Olivia who’d had a perfect healthy pregnancy that resulted in what doctors are calling “a random accident” in the delivery room which resulted in Noah being deprived oxygen at birth. Told that he’d never walk or talk, last Christmas Olivia’s family was converging at the hospital to say goodbye to a little boy they’d just met.

But then something of a Christmas miracle happened, and Noah proved he had a suck reflex. Despite being removed from all life-saving equipment, Noah survived, and in the past year at home with his family, has thrived. Diagnosed with HIE (hypoxic ischemic encephalopathy) due to his birth trauma, Noah faces a list of potential health challenges including intellectual disability, developmental delay, seizures and cerebral palsy.