I feel like a surgeon walking out to break the news to a waiting room full of nervous family members: This morning’s procedure was a success with zero complications, and Princess Munch is back in her room, hopped up on Baby Tylenol, well on her way to a speedy recovery, and one giant step closer to home.
Nyana has been sleeping much of the afternoon; as for me, I’m emotionally exhausted. I pride myself on being ‘one tough cookie’ and I’m faring well, all things considering, but it’s been an emotional day. I arrived at her bedside shortly before eight o’clock this morning, unsure of what to expect today and nervous we’d be bumped for yet another emergency.
I scrubbed in and was thrilled to find a flurry of activity in and around her room, and a note that our procedure had been bumped ahead from 9:30 to 9:00 AM. Oxygen tanks and portable vitals monitors were being assembled around her crib and the posse of “important people” hovering near was growing by the minute. It was starting to look like today really was going to be the day. Nyana was full of smiles when she saw me, blissfully unaware of what we were about to do to her.
Nine o’clock came and went, as did nine-fifteen and nine-thirty. The waiting was killing me and I was starting to assume that we’d been bumped—or there’d been a mix-up—again. Finally, at almost quarter to ten, we unlocked the brakes on the crib and started our procession down that long yellow hallway towards radiology. We got lost a few times along the way, unsure of which room had been booked for our Princess, but eventually we parked Nyana outside a big red door with a sign that read Cath Lab. And then we waited.
Despite having her off the bipap for the trek, she maintained sats in the high-90s with only moderate blow-by oxygen required, while we sat outside that big closed door for nearly half an hour, waiting. Finally the doctor came out and it was go time. He thrust a consent form into my hands as he explained the procedure to me—warned of the risk of infection and of the risk of accidentally slicing the spleen or the liver instead of the stomach. He reiterated the potential need to intubate her mid-procedure and that despite highly trained professionals, sometimes things don’t go according to plan. That while it’s a relatively safe procedure and nothing has ever gone wrong on his watch, there’s a first time for everything. I signed the form with his purple ballpoint pen and we wheeled her into the room. She was whisked out of her crib and onto the table, I was invited to give her a quick kiss, and then both her crib and I were escorted out of the room and the big red door shut behind me. I saw the red “IN USE” light above the door flicker on.
And then I was alone. Alone with my fear that something would go wrong behind that door. Alone with my worry that somehow we’d made the wrong decision. Alone with my anxiety about what the next eighteen months of our life look like with a child with medical needs, and with my selfish grief that this isn’t what I signed up for. I stood in that hallway outside the door for a moment, unsure of what to do with myself. I snapped a photo of her empty crib, sitting outside the door. I came back to her room and snapped a photo of it, also empty. I went and grabbed a tea, and came back to the big red door and checked the clock. It had been ten minutes since I kissed her on the operating table.
I waited some more, paced the hallway. A nurse passed by and asked if I was lost. I got tired of pacing and came back to Nyana’s empty room, checked the hundreds of comments and well wishes for Nyana in Internetland—on Facebook, at the Clubhouse, on blogs; even friends of friends of friends were signing up for Nyana’s Army, asking about this angel of a child they’d never even met. I sat stunned as I scrolled past profile after profile on Facebook, so many of my friends’ pictures changed to the red branded I ♥ NY image typically reserved for New York City, but today, a dedication to Nyana. I went back to that big red door, the IN USE sign still lit up. If it was hard waiting for them to wheel her in to surgery, it was agony waiting for them to bring her back to me.
I wandered the halls some more. Finally, at around 11:15, as I was yet again meandering my way back towards Nyana’s room, a nurse caught me in the NICU hallway and told me they were almost ready to wheel her back. I went back to the big red door—still shut—and waited some more. I needed to be sure Nyana knew I was there as soon as she came out. We finally walked her back to South Six and it was all hands on deck for about fifteen minutes, as RT Awesome and the rest of the NICU team checked her vital signs, reconnected everything and got her comfortable. She was immediately given a dose of Tylenol, wrapped in a warm towel, and soothed back to sleep. The anesthesiologist had warned me that in order to avoid intubation he would need to give her only enough freezing to get in and out without her feeling it. The local anaesthetic would wear off less than 15 minutes after wheeling her back into her room.
The Tylenol offered up pain management as well as a mild sedative, and Nyana has spent much of the afternoon sleeping herself towards recovery. Every half hour or so she’ll wake and flail and cry; only once was her cry obviously pain, the rest of the time she lost her soother or just needed to see a familiar face. She woke around 2:30 to vomit, but having not been fed since the middle of the night, it was nothing but bile and saliva and blood from the surgery. I cleaned her up, reinserted the soother, and sang her back to sleep. I’ve set up vigil in a corner of her room and have been here all day; I promised her that every time she opened her eyes today I’d be right here beside her.
It’ll be a few more hours still before we can give her anything into her stomach; we have Pedialyte on standby and she’s being fed nutrients via IV in the meantime. She’ll still be fed through the tube in her nose for three or four days, until we’re certain the g-tube is healing as it should and that we won’t have any leakage when using it. No one has any idea how long the gastrostomy tube will be in place; as with all things since September 20th, we’re on her time now.
Don has arrived with sushi for us and Nyana is awake and chatty, telling her Dad all about her busy day in coos and grunts. I, on the other hand, am feeling the effects of three cups of coffee and 14 stressful hours, and I know the headache will barge in on me as soon as we close the door to her room and head for the bus home. Tomorrow is the first day of our journey towards the outside world—RT Awesome says that our plan to escape by the end of April is tight, but possibly doable. All I know is that Babygirl is coming home. Soon.