The Devil Is In The Details

I knew that the final push to the finish was going to kill me, but the emotional exhaustion I’m feeling right now is not anything at all like I’d been expecting to face at the finish line. I was anticipating that we would be ready to go and all set up at home, just waiting for her to get well enough to earn her papers. But instead, here we are, Nyana ready and waiting, and we—her parents and her discharge team—scrambling to get all of our ducks in a row as we approach the final days of Operation Bring Babygirl Home.

Most every day this week has been a whirlwind for all of us. Don facilitated a large office move last weekend—a good ten hours on each Saturday and Sunday—and has been working all week to tie up the loose ends and clean up the mess. I’ve been trying to pack Nyana’s things and have meetings with home nurses and prepare for our care-by-parent weekend this weekend, while at the same time, trying to get comfortable with all her equipment and taking over all her care while I’m there. Two days this week I’ve looked at the clock only to realize it’s nearly 6pm and I’m still at the hospital; two days where I made Don come meet me there after work with take-out in hand. He’s exhausted by the time he gets there, I’m exhausted from having been there all day, and Nyana’s still there demanding every minute of our time. It’s amazing to finally feel what being a parent feels like.

Nyana’s had a pretty busy week, too. She had her appointment with ophthalmology on Monday and with the neonatal follow-up clinic on Tuesday. Both were excursions out of her room—the first in a transport cot; the second in her stroller with Nurse Awesome and me—and both had overly positive results. Nyana’s development is exactly where a seven month baby who was born three months early should be. And at 68 centimetres, she’s topping the charts in the 98th percentile for length.

I walked in on Nurse Awesome on Wednesday morning making silly faces to Ny while she sat in her carseat. Bipap on her face, Nyana was grinning and drooling and having a grand old time, just minutes past passing her on bipap challenge with flying colours. We attempted the off-bipap challenge later that afternoon to not such results: a small cough led to a big cough which led to a rather large spit-up and a significant desat. We rewrote her orders in rounds this morning with slightly increased oxygen requirements for the low-flow prongs (up to a quarter litre per minute from only 50 mL) and said we’d try this afternoon.

After her carseat challenge, I met with the agency who will be providing us home nursing support. The meeting was just an overview of Nyana and the care she needs, and we set a date for the first nurse to come for a four hour shift two days after we bring her home. We’ve been approved for 48 hours of the 56 per week we’d asked for, though we’ll likely not actually receive that many hours; there is an apparent shortage of nurses trained on using bipap systems, and the next training course isn’t until June.

This morning I didn’t get to the hospital until about noon, and arrived to find three or four people with a look that said Where have you been? We have so much to do! The discharge planner and I reviewed my supplies list for our care-by-parent weekend—the hospital provides everything from diapers to syringes, but it was my responsibility to know Nyana and her routine well enough to submit a list of all supplies that we’ll need for a 48 hour period. My list included 5 litres of oxygen, 10 saline bullets, 4 1L bottles of sterile water, 6 gauze squares, 3 feed pump bags, and about 20 or 30 syringes. I know she comes with extra stuff but it’s daunting to see a pile of supplies in the corner, knowing that’s mathematically counted to last me only two days.

When we were done reviewing all the care-by-parent supplies, RT Awesome poked her head in the door with a crash course in yet more equipment, this time a suction machine and the bipap battery charger. She showed me quickly how to use this new equipment, then told me to get Nyana ready for a walk. We’re taking Mr. Bipap with us.

It took half an hour but there we were: Nyana in her stroller with her duck soother and her giraffe blanket, the bottom basket of the stroller holding Nyana’s bipap machine and an oxygen tank. Sitting on the footrest at the front, tethered in with velcro straps, was the battery powering the bipap, and in the small empty space where carseat meets stroller, the sat probe was nestled with its extra cable neatly wrapped around the handle of the carseat and tucked in beside Nyana. Nasal prongs were put in a sterile bag and shoved in the “spare change goes here” compartment in the handle of the stroller. Suction machine, luckily, comes in a big lunchbag with a shoulder strap, so it hung on the handle while the food pump clamped on the side. We walked the halls of the hospital for twenty minutes, Nyana and an RT and me. We just needed to prove that I was comfortable collecting all the gear we need for her to be out and about with her bipap. It took half an hour to get ready, and half an hour to get reoriented when we came back, but twenty minutes outside the NICU walls was worth it.

Next on our checklist was attempt #3 on the off-bipap carseat challenge. Unfortunately for me, Nyana decided after her walk to have one of those moments where she didn’t want to be anywhere except in my arms, propped on my shoulder. Any attempt to place her anywhere else—her carseat, for example—was met with a screamfest that caught the attention of more than one or two nurses. Seeing as we can’t let her just cry it out, I had no choice but to pick her back up. But a baby who is insistent on screaming her lungs out must fall asleep eventually. I was finally able to strap her into her carseat and the timer was set. With the new orders we’d written yesterday, we didn’t even see a dip below 96 for the entire hour. As a refresher, it’s not considered a desat unless she dips below 88. We don’t go there often anymore.

She slept her way through the challenge and I was able to get her back into her crib with minimal disruption. I made the trek across the city for a quick dinner at home with Don before we were back at the hospital for a tour of the room we’ll do our parent’s weekend in. We had a quick tour, gave Nyana her meds, and were on our way back home, both of us exhausted.

We’re expected to be at Nyana’s beside by 9am on Friday morning, and our care-by-parent will start somewhere around noon. Just the three of us for 48 hours, with complete freedom to do what we want so long as we sleep in the room they’ve provided. We’ve been given a room on the 3rd floor of the children’s hospital, and the nurses in the ward have been advised to leave us alone unless we ask for help. People keep asking if we’re nervous about doing it all on our own, and it couldn’t be any more the opposite. Both of us—all three of us—are beyond ready to be a family. These next two days are going to be some of the best days of my life.