I must be honest with you: things are pretty boring in Nyanaland these days.
I made it to the hospital in time for rounds this morning. Still on CPAP? Yup. Still need her Ventolin™ puffer? Yup. Tolerating her feeds? Yup. OK. See you tomorrow. “Morning” “rounds” yesterday happened at one o’clock in the afternoon and consisted of just one doctor and one respiratory therapist. I had a bit of a chuckle to myself as I thought back to how terrifying some of those early rounds were; it seemed half the neonatal ward used to show up to examine Nyana and discuss the plan for her day. She’s come so far.
Nothing notable about Nyana as of late—she’s still gaining weight, still on 45-minute feeds, still being a Princess Fussy Pants more often than not, still loving attention and her soother and looking out her window. The chart notes from today might actually say “just keep on keepin’ on”. A few days ago the topic was raised of trying her on the high-flow for the second time. In a moment of serene patience that I still do not understand, I found myself objecting with the doctor and asked that we keep her on her CPAP for another week. She did amazingly last time we tried her off the CPAP, and she lasted longer than any of us anticipated, but she was so tired when we reverted. I’m telling myself that if we need to ask ourselves if we should try again, then she’s not ready yet. She’ll let us know when she’s ready. And I don’t want to push her too hard. I can’t help but think that sweet Neema went from the vent to biphasic to CPAP to highflow, and all the way backwards again. I can’t let the doctors push Nyana before she’s ready.
So while she slept through her noon feed, I grabbed some lunch and joined in on a parent support meeting put on by the hospital social worker. Only two new mums showed to this week’s meeting, and their jaws fell to the floor when I told them Nyana was born in September. One mum immediately said, “So Christmas? New Year’s? Here?” Yup. And Thanksgiving and Hallowe’en and Valentine’s Day, too. I told her we were hopeful to not spend Easter here as well and she looked horrified. She asked how much Nyana weighs now and, upon hearing 9lbs, became increasingly confused. We all had to explain to this woman—two weeks into a NICU stay with a 25-weeker—that it’s not all about weight or gestational age or time spent in hospital. She reminded me a bit of me during our first days here, back when we still believed that we’d fall on the early side of our due date; that we’d be transferred to our neighbourhood hospital at 32 weeks and be home by 38, with a month to spare before Christmas. We tried to gently inform her that she was in for a long journey, and that at 25 weeks, her baby would very likely see her due date (and then some) here within these walls.
The afternoon passed blissfully slowly, a lazy afternoon of snuggles and bathtime and a stupid nurse who made a “joke” about Nyana’s name. Her last name. “Haha, she’ll get teased for that when she’s in school.” I gave her a blank stare, ’cause I didn’t get the joke—it’s not like our last name is Boogerface or Stinkypants or anything. And even if my daughter’s given name is Nyana Boogerface and we all know full well that she’s going to be horribly ridiculed, it’s highly inappropriate to make a comment like that. Ever. I decided not to have a conversation with the charge nurse about it and instead just went back to singing to my sweetpea and waiting for my baby daddy to get there.
Don showed up with just enough time to give Nyana some kisses before we headed upstairs to the chapel for a memorial service for Neema. I’m more spiritual than I am religious, yet on many occasions I’ve thought to steal away for a few minutes and enjoy some pensive silence in the chapel, away from the hustle and the bustle and the beeping of the nursery. The chapel is nothing more than yet another room in this institution, but it’s been carpeted and painted a soft green, and faux stained-glass windows have been installed on the three walls that aren’t the entrance. There was room for about twenty to sit, and another 10 or 15 lined the back, standing. There were a few printed pictures on an altar at the front of the room. I was thrilled to see that in one of the photos displayed, Neema was wearing what used to be one of my favourite outfits on Nyana, a green, full-sleeve onesie with ruffled cuffs that I had passed on when Nyana outgrew it. Aside from Don and me, Nyana’s in-laws were the only other parents to attend. Everyone else was medical staff, those who had fought so valiantly with Neema right until her last day. Her primary nurse spoke of how honoured she was to be Neema’s first nurse as well as her last. We sang and prayed and I lit a candle for Neema, and then it was time to say goodbye. I gave them both a big hug and I told them my life was so much richer for having known them. She told me she’d be in touch when she was ready.
We went back downstairs and got Nyana ready for a visit with Auntie Cousin Kim. She’s Don’s cousin, but we want to call her Auntie Kim; seeing as my sister already holds the Auntie Kim card, Kim II gets Cousin tacked onto her title for distinction. Auntie Cousin Kim was thrilled to be able to have a cuddle with her newest cousiniece, and even became a pro quickly at reading her sats and adjusting appropriately. It’s a good thing Grannie is hoping to visit soon, because I can’t let the list of who has held Nyana get much longer without adding my Mum’s name.
Auntie Cousin Kim was in the middle of her cuddle when who should walk into the room but Doctor Awesome. Nyana’s favourite doctor, the doctor I’ve been wanting to see for a month now! Of course she stopped by to say hi when we had a room full of company. We had a nice light chat about life and about Nyana’s progress and personality, but I have yet to have the medical conversation with her that I’ve been waiting for.
I sat down early this morning to write a random, rather uninformative post; something out there mostly for the sake of putting something out there and partly, to be perfectly honest, to push Neema’s tribute below the fold. This post has been pieced together through the day, and it’s not until well past midnight and I’m saying goodnight to my glass of Shiraz that I’m realizing what a tiring day we had. Oh, did I forget the part where Don forgot to fill the penicillin prescription after his root canal last Saturday and woke this morning to a swollen, infected jaw? He was home sick much of the day and enjoyed the evening’s events with a pocketful of painkillers. We’re all hoping for a much less adventurous day tomorrow.