The Good News

Hello? Is anyone there? Hellloooo?

It’s been more than two months since we’ve given you an update on What We Made. Two months of wireless days and sleep-filled nights; two months of countless drafts of posts started but not finished; two months of happiness wrapped inside a no news is good news mentality.

But, despite no news being good news, there is a lot of good news that’s not being shared with everyone who loves our favourite preemie. Today we had more good news when we saw Dr. Dee, and at this point not keeping everyone updated on all of this good news has now become downright criminal. Since many of you have shed tears with us in our struggle to get to this point, it is inconceivable that we would deprive you of what we’ve all been working towards. Praying for. Trying to imagine despite however far away it seemed at the time. You’ve all been very patient and understanding with our silence recently and please just know—it’s not you, it’s us.  We’ve been preoccupied with getting back to normal living, at least for a little while, and carving out and defining some new dynamics, while simultaneously getting ready for some big changes around the corner. So… let’s catch you up, shall we?

At our respirology visit back in March we were given the OK to drop the daytime BiPAP and it was spendid. All of a sudden, Nyana only had BiPaP when she slept. When she was awake, we had her on an O2 tank with nasal prongs which usually meant she had a 7m tube attaching her to a big tank. With the tank in the middle of the apartment, she could easily access most areas of the main living room, with a bit of overflow to the hallway and kitchen. She would get hung up on toys and furniture and invariably get tugged off balance, but it was a form of freedom. No mask on her face, no forced air into her lungs, just her on her own with a constant supply of the best oxygen money can buy. She did so well without Mr BiPAP that our respirology visit in April granted us the all-clear to lose the daytime oxygen as well. So, for the past four weeks we’ve been weaning her off the oxygen and she is now enjoying her days tethered to only Mr Foodpump, and he comes with a backpack. So, our good news lately? Nyana now has free access to run around the apartment without being tethered—after months of waiting, we finally have our wireless baby. Well, she’s kinda like “90’s wireless”, but still! Close enough. And now, at today’s respirology visit, we were given the OK to start trialling her afternoon naps without BiPAP, too. As long as she holds her sats and resps, she can continue without Mr BiPaP for naps. We run her afternoon nap tomorrow with a sleep study machine, and depending on the results of that, we may be able to lose Mr Compressor (no oxygen during her nighttime sleep) in about a week. This means that she will be without an outside oxygen supply entirely, for the first time since… ever (?), and from the time she wakes up in the morning until the time she goes to bed at night, she will be breathing 100% on her own—just her and the healthy lung tissue she’s spent all these months growing. We’re so proud of her. She’s all kinds of awesome in so many ways. We marvel every single day at how much fun she is, and how much she lights up our lives. It would take all night to document a list of things we love about our lives as we now watch her grow from our Babygirl into our Little Girl.

No, I bet I can do it quicker than that.

She has such an infectious laugh. I’m sure every parent thinks this, and who can’t laugh along with a toddler when you hear it? It’s a gift to have in the house, and it doesn’t take much to get her giggling up a storm these days. She’s ticklish just about everywhere, and loves raspberries on her tummy. Being forced to kiss Dad’s prickly cheeks, or getting a hardcore game of peek-a-boo on, I’m addicted to that little laugh of hers.

They really are little sponges, aren’t they? Every day we see the wheels turning, and every day she surprises us with things she couldn’t do or didn’t know yesterday. Her vocabulary is growing slowly—in addition to Dada, Mama and cat, we now have a whole host of new words including ball, dog, push, door, walk, hi and bye, nose, cheese, and a new one learned just in time for her recent trip to the aquarium, whale (adorably pronounced WAY-yo).

This girl loves the outdoors. She is forever getting into her box of shoes and socks and parading around the house with them saying “door” and “walk”. If she’s in her stroller for an outdoor adventure, she will pull her pant legs up to her knees and kick her feet happily against the footrest, or she’ll pull herself as forward as she can, and then wave and exclaim “Hi! Hi!” at everyone passing by. It can be a little startling sometimes if you’re just zoning out and then strangers just start waving at you. It takes a moment to realize that you’re pushing around the happiest toddler in the world and she’s waving hello to everyone. Sometimes we catch her trying to take big gulps of air, as if the fresh air on her face is the best thing ever. Don’t even think about putting the stroller cover on during the rain, either! She will begrudgingly allow you to extend the canopy shield of the stroller itself but will claw, scratch, and pull at the plastic rain cover if you even think of putting that on. Seriously, she broke the velcro tie at the bottom and she verbally freaks out while she does all this. It is a last resort option only, but strangers with opinions don’t see all that. We have definitely gotten more than our fair share of dirty looks for it. How dare you let your poor child get rained on like that? Why I ought to…  Yeah, sure. but she’s quiet, ain’t she? It’s true, too—she sits quite happily bouncing her feet and cooing in the rain, she loves it! But even better than walks in the stroller are walk walks. Just the three of us and a pair of shoes. She loves exploring the grass and the flowers and the stairs of the neighboring apartment buildings. She’s such a good walker, and has even taken a few nasty spills with relative ease. At this point though, what’s a little faceplant when you’re fed with a tube that sticks out of your belly?

Speaking of food, this tubie has a huge palate. Mr Foodpump is still spending a great amount of time with us and he’ll be with us for a while yet. But without Mr BiPAP getting in the way during the day, we’re free and clear to practice her oral feeding at any time of day, a chore she finds most enjoyable. She’s started turning up her nose at the mash on her plate and has taken to signing “more” while pointing to the dinner on our plates. (she can sign. “more”. we’re still working with her on “help” and “thank you” but hey, it’s a start). Inevitably this means that Nyana is learning that she likes what Mum and Dad are eating which often translates to spicy food. She has passed on her own plate for mexican beef on tostadas, butter chicken, falafel with tahina, and chicken curry stew, just to name a few. We’re working through typical feeding issues now, but are a little blessed to not have the urgency to eat that most kids go through. She can play with her food and eat as much or as little as she likes without too many repurcussions, so it’s nice that there’s no pressure around eating, and she loves it

She has two favourite TV shows. I know most people will frown upon this (so save your nasty emails) but she does watch a little bit of TV. Not a lot—she’s surprisingly choosy herself when it comes to actual shows. One of the two is all about words and letters and spelling and she gets quite excited about that (emphatically so, sometimes). The other is all about playing and dancing and socializing. For all the parents in the house, we’re talking Super Why and Yo Gabba Gabba. These two shows are the only two that she will always drop everything else for, although she does have a zombie-like tendency to get intermittently distracted in general if anything else is on, kids show or otherwise. It’s not a really proud moment per se, but it leads beautifully into…

She LOVES to dance, she loves music. Shake your head and wiggle your hips! Hands up! Dance! Holey moley, does she love a good beat. She knows when Justin Timberlake is in the stereo and when it is (and so far, only when it is), she will turn on the stereo herself, get the CD playing, and just start shaking back and forth. She’s done it more than once, so it’s not just a fluke, and she hasn’t done it yet with any CD other than JT. It’s pretty adorable. She’s also pretty sick with that drum Uncle Dave got her, and if she can play a good beat that someone else can groove to, she gets the biggest smile and is in total toddler heaven. It’s a good thing Daddy likes to dance, too.

Buy Crayola stocks now. She’s not eating them anymore, she’s actually using them as they were intended! She loves to use crayons and is copying and practicing as much as we can tolerate, which seems to be at least once an hour these days. She’s a maniac.

OK, I was wrong. I don’t have all night to type things that are awesome about Nyana. I bet I could, but I gotta get some sleep or she’s going to run me into the ground tomorrow. Before I go, there is still some more news. You regulars know that the best bits are always at the end. You have to read all the way down!!

We are moving, finally, to a bigger apartment. We found a place out in Burnaby that’s a 2BR so now there will be bedrooms for both us and the kids. We’re pretty excited about it, it’s roughly the same size-proportions as the place we’re in now, except it has two bedrooms. A nice master room for Mum and Dad (finally!! seriously, Karen is asleep less than 10ft away from me as I type this) and a room for Nyana. There are two balconies which we are very, very excited about – one of them is off the master bedroom! Neither of us has ever had anything like that before, so it’s a pretty cool selling point. It’s a fresh kitchen and flooring reno, and it’s right in our budget – it’s also located between three schools and across the street from a big mall. There are big parks all over the place and a skytrain station that is literally at our back doorstep. It seems like a pretty perfect place to set up the Sunshine Brigade pennant for a little while. While we…grow.

…another.

…Ny’s a big sister.

Or, will be in December.

(Go back and read that again to make sure you got it right. You did.)

Advertisements

About Donners

Thirtysomething father to The Royal Princess of The Sunshine Brigade, a 27 week preemie who survived 222 days in the NICU. The Queen and I are still crazy in love, and life in Vancouver's West End is getting back to a whole new normal that we've always been waiting for but never knew we would get quite like this.
This entry was posted in Uncategorized. Bookmark the permalink.

17 Responses to The Good News

  1. Roxanna says:

    Thanks for the update…don’t apologize for things being “normal” – I think that’s what all of us have wanted for you all along…you have been so wonderful to share with us and once again have brought me to tears with the sheer joy of your news. I’m guessing Ny will be an awesome big sister.

  2. T says:

    AWESOME! Way to go NYANA! We knew from day 1 you would get this far. Reach for the stars darling little girl, because the world is yours for the taking!

    Congrats on the new bebe.

  3. Gianna says:

    I am so, SO happy for all of you! Thanks for the update – it’ll keep me smiling all day.

  4. Jennifer says:

    It sounds like everything is going great. I am happy for all of you and always enjoy the pictures that you post. It certainly seems like Nyana is a happy baby. Hope the move goes well for you.

  5. So happy to hear ALL the happy news!
    Of course Nayana is awesome! She has awesome parents to teach her how to be more awesome everyday! Keep doing what you are doing! The world needs more great parents like you two!

  6. Linda says:

    In some ways I think that the two of you (K&D) were blessed to have a micro-preemie born to you. Unlike other parents who were presented with healthy, born at term babies, you had to work so incredibly hard, faced numerous set-backs and obstacles and struggled each and every day, all in the hopes of keeping Nyana strong and healthy, so that she may grow into a happy, little girl. You have a deeper understanding than most other parents of how precious life really is, and each time Nyana accomplishes something new, you are able to celebrate, knowing the hard work it took to reach that milestone. Other parents take their child’s first laugh, first step, word or fistful of Cheerios for granted – you two know how much love and hard work went into those “firsts”.

    Would I wish what the two of you went through on anybody…No, of course not!! But you have witnessed the fragility of Life and have seen first hand what love, faith and hard work can accomplish. You don’t take Nyana’s life for granted, you know what it took to get this far and are able to appreciate everything about Nyana – her laugh, her dancing, her love of food and crayons, her joy of the raindrops. Things the rest of us take for granted, you hold dear. And that is the way it should be.

    Wishing the three of you (and soon to be four) nothing but love and happiness!!

  7. Lee says:

    Yup – I’ve got tears in my eyes. I love aaaallllllll the good news, and such good news it is. Congrats on getting to where you are, and all the best wishes and great stuff for you 3, I mean 4, in the future.
    Thanks for catching us up – your new apartment sounds super.

    Lee

  8. You think you just slipped in that “kids”?

    Nyana will definitely be a great Big Sister in your new apartment that sure does sound perfectly located AND with balconies!

    Love the update on Nyana as she progresses and gains more and more freedom and obviously remains loved and happy. And sporting very cool sunglasses as well.

    We all have much to anticipate as December approaches 🙂

  9. Tasha says:

    Probably the best post so far! 🙂

  10. Tom says:

    Awesome news! Trajan loved their play date yesterday. After you left, he stood, staring at the door with his bottom lip hanging out for about 10 minutes! We must do it again soon!

  11. Diane Turnbaugh says:

    So many exciting changes on the horizon! Thank you for sharing all your wonderful news. Congratulations to an awesome family!! ♥♥♥

    • Sue C. says:

      Best post EVER!! I have missed hearing Ny news, but I couldn’t be happier for you and “no news is good news!” Although you have GREAT news! I absolutely didn’t miss that little word “kids” either! That’s wonderful news!! Thanks so much for the gorgeous pics of your precious little girl! She will be an awesome big sis!

      I’m so happy for all of you!!

  12. YAY I’ve been creeping ever since it was posted on the Baby boards. Glad to hear that the Mr’s are getting dumped and that she has the bestest laugh ever.

  13. Jenn Robinson says:

    Thanks for the update!! So nice to hear all the positives!! Congrats on baby #2! Can’t wait to hear all about how awesome he/she will be.

  14. Duncan & Dorothy Gillies says:

    Hi Nyana, Don & Karen
    So glad to get an update (we are not on Facebook, so were missing you). We do get the latest news from Grandma Anne, but still like to read for ourselves and see the new pictures – great shades there Ny!.
    Thanks for all the great news – Nyana, you are really special – we are all so proud of your amazing progress.
    Good luck being a big sister in December too.
    All the best – we will see Grandma Anne tomorrow – celebrating Duncan’s birthday – it has become a tradition.
    Bye for now. Love Dorothy & Duncan

  15. Juju says:

    OMG, what great news to come home to! I am so happy for all of you. Keep up the good work.

  16. Anne Brackett says:

    Nyana there was no doubt in my mind, that you would make it and you would become the great little girl you are and will become in the future. You were a fighter from the beginning. Also you will be a great sister come Dec. I love the outfits and shades…very becoming. Don and Karen–it was rough at first but now you can enjoy her dancing, laughing and every thing she does.

    Wish you all the happiness and love. Love Mom and Grandma

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s