A Week In The Life…

A lot can happen in a week or so when you’re only getting anecdotal glimpses into Nyanaland. It’s been a while since Nyana’s camp has released any solid info on her or her condition. There have been a few goings-on as of late that are cool enough in their own right but not enough to warrant a post of their own.

• I haven’t called her nurse tonight to confirm, but based on her recent weigh-ins, we’re on track to hit the ten pound milestone tonight. Maybe we shouldn’t have dropped the Chub-Chub from her Princess title.
• Nyana’s boyfriend is on the fast train out of the nursery, finally! His parents have had a rough go of these past few weeks, just flirting with the finish line but not quite able to reach it yet. But they’ve done the “rooming in” thing for the past three nights, he’ll pass his carseat challenge and they can take him home. They’re trying to find an excuse to stay until Thursday so their primary nurse is on shift to say goodbye.
• No word of a lie, a day doesn’t go by that someone doesn’t stop by our room and say, “Wow, oh my, lookit those big, beautiful blue eyes!” Every single day. At least once a day. There’s a cleaning lady who stops by our room way more often than she needs to, and she always comments on Nyana’s outfit, or her smile, or her cheeks or her hand movements. I’m not bragging when I say that Nyana gets a lot of attention from the staff. And I’m not mad at that.
• New primary nurse! Woot! It only took us four months to score a second primary nurse. I walked into our room last week to find a nurse I haven’t seen since Nyana was intubated. I had asked her back in November if she would primary with us, and she said she would, but then we never saw her again. Something about a messed up work schedule and then a month long vacation, but there she was and there she will be for every shift, every set, until Nyana goes home.
• We (and by “we” I mean “Nyana”) spent the better part of three hours today, wide awake and active, ringing off highscores at only 21% oxygen. That’s room air, folks. She’s still getting moderate pressures from the CPAP machine, so she’s nowhere near breathing all on her own yet, but room air is a big achievement. We were back to 23% by the time we left her tonight, but we know she can do it.
• To ensure she can do it, I made sure the doctors and RTs knew in rounds this morning that Mum and Dad want one solid week of zero changes. Don’t play with her pressures, don’t try a day on high-flow, don’t muck around with her feeds, don’t schedule any invasive tests. Just leave her be for a week. It’ll be good for her.
• Keeping in mind that gossip between nurses and RTs and parents is highly inappropriate, I talked to someone today who had heard from The Smugs since their early release, and their son is doing well at home. I was so relieved to hear this, and I hope their happiness and good fortune continue.
• I love washing baby laundry.
• There was a bit of a flurry last week when Dr. Awesome determined that Nyana wasn’t focusing and tracking the way a six-week infant should, so an ophthalmologist was called in to investigate some concerns about bilateral ocular calcification. Some small calcium spots have been seen on scans since she was born and they’ve not been a concern at all, but given Nyana’s disdain for making eye contact with anyone but Don and me, they wanted to call in the professional, to be sure. The results were inconclusive and we’ll follow up when she’s three months corrected.
• Most parents in the NICU worry that the final step before release, feeding, is going to be the most difficult part. Teaching a micro-preemie to suck, swallow, breathe can be a challenge. I’m starting to wonder if this will even be an issue for us, or if we’ll be moved on to solids by then.
• I ran out of songs to sing for Nyana, so I tried plugging in my iPod and playing my music through iTunes. We weren’t satisfied with the laptop speakers, so we brought in the computer speakers from home. Now Nyana’s room is wired for sound—her nurses can plug in their mp3 players and have a dance party with her when she’s fussing at 3am. She’ll be the hippest baby on the block by the time she’s finally sprung.
• She’s a superstar when it comes to bath time.
  
• I’m not about to call anyone out, but looking at the blog stats, there are four (4) of you who every day type “nyanarose.com” into Google and then click on a link to get to this blog. You know you can just type that in the URL bar at the top of the screen, right? Or better yet, if you come here every day, why not enter your email address in the “subscribe” box over there on the right, and let us send you an email every time we update the blog. Easy!
• When will she be home? has become the new Will she be home for Christmas?
• Since our hospital living began in August, we’ve spent $900 and counting on transit passes. Thanks to Variety – The Children’s Charity for picking up the tab for the first three months, cutting that expense for us by more than half.
• Playtime is getting to be so much fun with Nyana. She’s so interactive and engaging when she’s awake. Following last week’s concerns about her focusing and tracking, Don and I have been tasked with visually stimulating her as often as possible. She has big black and white and red flashcards in her room, hearts and stars and spirals. She’s starting to tolerate the little green finger puppet frog. She’s still not too sure what to think of Sofie the Squeaky Giraffe, though.
• She officially has a closet. I really should take a picture of it. We didn’t ask for it and we’re not complaining about it, it just showed up one day. One of those plastic, four-drawer storage devices you can buy just about anywhere. We filled it instantly with her best onesies and sleepers and socks…
• …all the outfits that still fit her, that is. It sucks doing baby laundry and pulling out awesome outfits that she’ll never fit again. And then I think about how tiny she was when she started, and how far she’s come…
• I learned yesterday that one of her favourite toys is the suction hose that the nurses use to clear mucus and saliva from her mouth. It’s true. It’s a plastic version of the suction hose the dentist uses, and it sits in her crib in a sterile sheath at all times. Yesterday, for some reason, I decided to use it (instead of a cloth) to clean her mouth of her foamy bubbles (a by-product of the CPAP) and to my surprise and delight, was met with the biggest grin! She loves it!
• Nyana told me today that she’s very much looking forward to Grannie’s visit in less than three weeks! When Grannie was last here, Nyana was much too small to let others hold her. It’s about time she gets her cuddle on with her newest grandbaby.
• She’s just awesome. Absolutely awesome. The faces she makes, the smells she makes, the noises she makes. I love it all. I can’t wait to have her all to ourselves at home. No wires, no tubes, no nurses and no rules. Just ours.