It’s been three days now since Nyana was wheeled out of surgery with a gastrostomy tube protruding from her abdomen. Three days since I paced that hallway outside of that big red door, petrified that something was about to go wrong and that we’d made a terrible mistake.
Boy, was I ever wrong. I’d been so preoccupied fretting over the what ifs of things not going smoothly, it never even occurred to me that we could land on the complete opposite end of the spectrum; that she could sail through surgery and be awake, babbling and drooling and smiling, just four hours later. Or that we could be using the new G-tube for feeding within 24 hours, and be back to full formula feeds through the tube—thus permanently ending the era of stuff taped to her face—within 48 hours. Or that we’d find ourselves here now, more than 72 hours post-op, the dressing removed, feed duration cut to an hour instead of 90 minutes, and not a single emesis charted since Wednesday.
Those who know me well know that I function on fact and logic and don’t often let my emotions dictate a situation. It’s funny, then, how even when I have all the logic to reassure me that we made the right decision—which there is no doubt we did—my emotions got in the way on Saturday and I cried when I found myself face-to-face with what we’d done to our beautiful little girl. Even though I knew what to expect, it hit me hard to see her perfect baby belly sullied by wires and tape and tubes. It’s just not natural to see.
Saturday’s daytime nurse told me that all was well; go ahead and handle Nyana the way I usually would. I was terrified to change her diaper, afraid that the simple act of bending her would send her into a screaming fit of pain. But I cleaned her up and she smiled and cooed at me, as if there were nothing different about her. She kicked her legs and flailed her arms at me, asking to be picked up. I was so scared to move her. Scared that if I held her under the armpits I’d be stretching the stomach skin around her sutures. That if I bent her at the waist I’d be squishing an open wound. I was almost as afraid to hold her on Saturday as I was on September 25th when she was less than a week old and barely more than two pounds.
The tube itself isn’t any bigger than the narrowest fountain straw you can find. For the time being, the tube protrudes about eight inches out of her stomach; if you peel back the plastic blue disc that is currently securing everything, the tube simply disappears into Nyana’s abdomen, with two tiny sutures holding it securely in place. In 6–8 weeks, once everything is healed, well swap out the long tube and exchange it with a Mic-Key button, allowing the whole contraption to be easily concealed under clothing, and greatly eliminating the risk of Princess Grabby Hands yanking on things she shouldn’t be yanking on.
I’m telling myself that I’m OK with what we’ve done, that what we’ve done was the best thing for Nyana so I have to be OK with it. I tell myself that this G-tube is a good story for her, and that it’s another good lesson in patience for me. I remind myself that this is all temporary and that it’s a small step backwards in the interest of a huge step forward. She’s amazed the doctors and amazed her Dad and me at how quickly she’s adapted, and we’re all stunned by how immediate a change in her feeds we saw. Not a single spit-up since she woke up from her surgery is astounding. The more calories she can keep down, the bigger she’ll grow, the stronger she’ll get, the sooner her lungs will heal.
I still find myself shaking my head in disbelief sometimes that we’re still playing this one hand we were dealt. It’s absurd and ridiculous, while at the same time being absolutely right and not something I’d want to change for anything. We’ll be home before we know it, thankful for every fighting day and every backward step we took to get there, G-tube included.