Life On The Outside

When we were living in the NICU, every long week and month was chronicled hour by hour and broken down and recorded by days of life. On Day 10 of life she was intubated; on Day 76 of life she was finally extubated. Christmas Day was Day 97 of life; her g-tube surgery was scheduled for Day 184 of life and happened on day 186 of life; the day we broke her out we’d all stopped counting but for formality’s sake, it was Day 222 of life. Here were are now, Day 13 of life on the outside and I’m loving life a lot more now that we’re out here and not in there. A lot has happened since this house became a home.

• Babygirl gained a pound. She was just over six kilos when we discharged her last Friday, and when we took her to the pediatrician this Monday, she was just under 6.5. Those of you who still haven’t jumped on the metric bandwagon, that translates to a gain from 13 pounds to 14. We’re assuming this weight gain can be attributed to the calm, relaxing, awesome environment she’s enjoying now that she’s home, away from the constant poking and prodding of NICU-living. We’ve noticed her resting heart rate has dropped to about 80bpm from 95—100, also attributable to a more relaxed state.
• We’ve made friends. We actually had to pull out an extra calendar that we had lying around to keep track of all of Nyana’s appointments. We’ve had in-house visits from nursing staff, an occupational therapist, our community case manager, and a social worker. We have standing deliveries of oxygen and medical supplies; the Purolator delivery guy and I are becoming good buddies. Nyana has a playdate on Wednesday of next week to meet with the other babes in her birth club, and next week we have an appointment back at the hospital for a follow up. She even enjoyed a stroller ride to Don’s office earlier this week to meet a few of the kind folks who have cheered us on from the beginning.
• She wears clothes now. She was always dressed in the NICU, but for the most part, she was kept in sleepers during her hospitalization to ensure easy access if and when needed. Now that she’s home and we’re working on building a routine for her, ‘getting dressed’ fits into that routine, just after morning puffers and starting the 9am feed. She has a mountain of outfits for us to choose from, and despite practically doubling the amount of baby laundry to do—I hate folding baby clothes—she gets to wear a proper outfit during the day and a fanciful sleeper in her crib at night.
• Mum is getting a full body workout. Nyana weighs 14 pounds now. Her stroller without any gear weighs 25 pounds. The bipap battery weighs another 25 and an oxygen tank is a good five pounds or so. Throw in a diaper bag and a few bags of groceries, factor in the hill that we live on, and I’m getting a good workout taking her with me everywhere. It’s about time I start working off this baby- and bedrest-weight.
• She got even awesomer. I didn’t think it was possible for her to build on the awesome that she was in the hospital, but here she is now at home, a million times more amazing than I ever imagined. Her numbers are better than they’ve ever been—it’s a rare occasion when her oximeter beeps anymore and we’re getting more and more comfortable not turning it on at all—and her adorable personality is shining through more and more with every day that she spends here with her Big People. I sometimes wonder if she had a lightbulb moment, a flash of, Oh! I get it now, what they’ve been yattering about forever… this home place is awesome!
• We got even awesomer. If you’ve been reading from the beginning you know how Don and I like to take pride in how awesome we are as a couple. Together for eleven years and married for three, we’ve leaned on the strength of our marriage to get us through the past seven months, and our relationship took a beating for it. We both knew that we’d come out on the other side together, stronger for having endured, and we both appreciate the reminder that we’re just as vulnerable as anyone else, but I think we were both surprised at just how easy it was to forget to put any effort into each other. We’re both refocused now that she’s home, and we’re back to working in tandem, more appreciative than ever before of the comfortable togetherness we’ve always enjoyed.

It’s hard to believe that it’s only been two weeks since we brought her home, hard to believe that our lives were a million times different six months ago. She’s come so far, taught us so much, introduced us to so many amazing people. I know that there are bound to be challenges still—I can’t be naive enough to think that busting her out of the NICU means the end of our hospitalization adventure—but I’m thrilled that she’s home at last and that we’re playing by our rules. The distinctive scent of cookies has overtaken our apartment; the Sunshine Brigade is home.