We Are Family

Wow. It took 215 days, but they finally let the three of us hang out alone. Just the three of us. No nurses interrupting our visit to chart Nyana’s vitals. No RTs poking their heads in to do their nightly checks on her equipment. Just the three of us for 48 hours, proving to both her care team as well as ourselves that we were ready to come home and be a family.

We’d been instructed to be at the hospital at 9am and expect to start our parent-in by noon. We arrived on time and got ourselves prepared and were ready by noon; then, in typical hospital fashion, we waited. Time slipped by and we waited some more—Don and me tending to her by ourselves anyways, as if our challenge had already begun—and finally at 3:30 we were given the all-clear to move ourselves into a room at the back of the pediatric cardiac ward.

We needed two trips to take our supplies, our gear, her gear, her toys, her stroller and her crib up to our room, and on both trips we were escorted by our day nurse (assigned to us in the NICU, just in case we needed to come back for any reason), the discharge planner, and an RT. The discharge nurse gave us a sign-out sheet to tape to our door for our excursions, and then she wished us luck and we were alone. The room was comparable in size to ours down in South nursery, with space enough for us to move around a crib, two cots, and a stroller. We got Nyana settled first then went about planning out the best lay of the land for easy access to her supplies and her emergency equipment. Once all of her things had a place, we took care of getting ourselves settled. I think we have the basics of parenting down: all about her, and then all about us.

Nearly an hour after being taken upstairs, Don and I found ourselves on our little cot, unpacked and somewhat perplexed at what to do next, when we were quickly reminded yet again that Nyana still runs this show. Food pumps need to be cleaned and reset, g-tubes flushed, meds and puffers given, diapers changed, smiles exchanged, babies entertained. We weren’t just playing house, we were living it. I remember way back to the early days of this adventure, hearing that most parents leaving the NICU were required to “room-in” at least one night. This simply entailed one parent spending the night with their babes, and the thought of being forced to spend even one more night in hospital bothered me greatly. Who knew that seven months later, when “rooming in” had turned into “care by parent weekend”, I’d be elated to get to spend a full 48 hours with her?

Don left for home to feed the cats and grab some foodstuffs, and left Nyana and me alone for the better part of two hours. The baby who had been happily talking to her mobile when her father left turned into a purple scream monster, foaming at the mouth, in his absense. I don’t know what was bothering her—she was fed, clothed, changed, cuddled, oxygenated—but she was not happy with anything for nearly 45 minutes. It was during this tantrum of hers that I first became aware that we might have a problem with her saturation monitor, which continued to tell me that her saturations were as low as 50% and her heartrate around 60, both of which were impossible, given her colour and activity. At any rate, I was finally able to calm her down while exhibiting only mild frustration, and she was happily nestled in on my shoulder when her dad came back with dinner for us; mine from the freezer, his from a can, both reheated in the microwave.

Nyana was down for the night around 10pm and I was so relived to see for myself that the nurses haven’t been lying to us all this time: she really does sleep through the night! Don was exhausted from a busy week and was asleep in his cot not much later than Nyana. I stayed awake until midnight to give her diuretic—and actually traipsed back to the medication fridge beside the nurses station to double-check I’d drawn the correct med—and then set alarms to get up to add more formula to her continuous overnight feed, and then crawled into my own cot and tried to sleep.

Note that I tried to sleep; I don’t think I got more than two hours on Friday night. My mind was racing. Even after double-checking, had I given her the wrong med? Had we remembered to change the saturation monitor from battery to AC power? Was her bipap plugged in and assembled correctly? Did we turn her oxygen high enough? Too high? What if I don’t get up for the alarm to add more formula to the pump? What if she stops breathing and I panic? What if she spits up and chokes? What if, what if, what if? That the cot was beyond uncomfortable and the blankets thin and lacking in warmth did nothing to help with my insomnia.

But I did finally get some sleep, and I woke around 6:30 to the sound of Nyana slobbering all over her fists as she chatted to her friends on the mobile. She was obviously comfortable and having a good time, so I just stayed cozied up in bed for a few minutes, marvelling at how profound such a simple thing was. Waking up to the sound of my daughter cooing and talking to herself. It was yet another surreal moment along this adventure, as the notion of being discharged shifts from months to weeks to days.

I took the morning shift home, and as I got off the train on my way back to the hospital, I was pleasantly surprised to find Don and Nyana out for a stroll to meet me. Don had bundled her up for the outside, hooked up her bipap and its battery, collected her monitors, and was pushing Ny’s Cadillac up the sidewalk looking every bit the proudest papa ever. As we took the long way around back to the hospital grounds, I again got to thinking about what people think when they see us, and I let myself forget about the past seven months, forget about how hard we fought just to get out on that walk. As we headed back to her room, we were just a happily family out for a stroll.

We maximized our day on Saturday; after taking her back to our room for a nap and some meds, we hooked up Nyana’s noon feed and the three of us headed back out into the world, this time up the street to Safeway for some lunch and dinner supplies. She’s such a superstar in her stroller—we just give her Suck-A-Duck and a warm blanket and she settles right in for the ride—and as long as we’re pushing her somewhere, she’s usually wide eyed and taking in all the senses. I can’t explain how wonderful it feels to finally be allowed to show her the outside world.

Saturday afternoon gave way to a nap for Don and Nyana, and I took a book out to a sundrenched patio and enjoyed a bit of quiet time. We squeezed in a bath before her six o’clock feed—the first ever mommy/daughter bath, I should mention—and enjoyed a few hours of quiet play before trying to settle her for sleep. When ten o’clock came and she was showing no signs of slowing down, we hoped that taking her out for a walk might excite her enough to tucker her right out. Instead of loading up the stroller, we opted this time for the Snugli. We swapped out her bipap mask for nasal prongs, Don strapped her in and grabbed the oxygen tank, I ported along the sat monitor, and off we went, down to the NICU to see if Nurse Awesome was on—her grandma passed away on Friday and we wanted to give her some hugs. Even though she was scheduled to be on we were not surprised not to find her, so we chatted with the nurses who were there and bragged about what a great weekend we were having.

Saturday night I did sleep—I let Don take care of the midnight meds and the 4am feed change, and despite the cot I slept well through the night. I again took the morning shift across the city to feed our furbabies and I again returned to the hospital to find Don and Nyana strolling around waiting for me. We walked the perimeter of the grounds and Ny slept this time, and before we knew it we found ourselves back in our room on the 3rd floor, packing up our things to return to South Six.

Don went downstairs to check in with the NICU about protocols for bringing her back. Our third primary nurse—who we picked up rather late in the game and haven’t formally introduced, so for the sake of ease we shall simply call Nurse Sweetie ’cause she’s just so nice—was on shift and she honestly wasn’t sure if there were any protocols. Despite the three-man escort on our way to the room, we were left to go it alone for the return trip. We took Nyana downstairs first, seeing as we couldn’t leave her alone upstairs with no nurse assigned to her, and then proceeded in two separate trips to bring the remainder of her supplies and belongings. Nurse Sweetie stood back and watched as we got Ny all set up in her room and started her next feed. We had a quick conversation with the nurses about how it all went, and reiterated that we had no concerns, no hesitations, no knowledge gaps at all about any of her care.

The rest of Nyana’s supplies arrive at our house on Tuesday morning and the finish line inches ever closer still. We still have some loose ends to tie up—some people to see and some tests to pass and a whole lot of setting up and organizing to take care of, but this is it. This is what we’ve all been waiting for. This is what we’ve all spent seven months laughing and crying towards. One day soon, ridiculously soon, you’ll all get to read those two little words we’ve all been striving for: We’re home.