Our Bionic Baby

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.

Nyana's new tackle.

Wide eyed and proud to show off her new semi-permanent tackle.

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.

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About Mrs. B

Wife, mother, marketer--not always in that order. Lover of fine food, good company, and exceptional grammar. Mother of one former micro-preemie and one full-term monster baby. Building childhood memories in Vancouver's suburbs.
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9 Responses to Our Bionic Baby

  1. Kaili says:

    So glad to hear that it’s going so well! Take care!

  2. Diana says:

    What a sweet little girl. Who needs to be textbook when you can be beyond textbook? Seems just her style to show those docs how awesome she is. Thanks for the good news update! 🙂

  3. Twiggy says:

    Way to go Nyana!! She needs a cape to go with her bionicness… =)

  4. T says:

    Such great Nyana news is the BEST way to start a Monday! YAY NYANA!

  5. Allison says:

    So happy to hear how well Nyana is doing! She is one strong girl! It’s amazing how fast babies can bounce back from major surgery. I just started following your blog-I had never read a blog before so I’m new at this & just going back through all of the posts since she was born. You are an amazing writer & I tear up reading every post-happy or sad 🙂

  6. Linda says:

    Sometimes the hardest decisions to make turn out to be the best decisions made ~ this seems to be the case with Nyana and her G-tube. Your decision to permanently scar a perfect baby belly will ultimately lead to a much stronger and Bi-Pap-free baby girl much sooner. As the years go by and you see the faint glimmer of scarring I hope that you, Karen and Don can also see the enormous courage the two of you possessed to make the decision to make the “gut-wrenching” (no pun intended) decision to go ahead with the surgery which ultimately has given Princess Ladybug the chance to grow even more stronger and beautiful than what she already is.
    There is no doubt in my mind that Nyana is an incredibly strong little girl but there is also no doubt in my mind where her strength comes from ~ two incredibly strong and courageous parents!!
    Much love to you Karen, Don and Princess Ladybug,
    Mum/Grannie

  7. Lynn Duncan says:

    Nyana proves once again that she is the most resiliant little being ever!!

    I’m sure she is enjoying every single calorie.

  8. ShannonB says:

    Years from now she can show the other kids the tiny scar from where her g-tube once was and it will be the coolest thing ever! So happy to read your great update!

  9. Max's Mum says:

    I’m thrilled to hear how well Nyana is doing with the g-tube.
    Hour feeds and no emisis? Amazing! That NG must have been doing her such a disservice. I’m glad to hear you both feel good about your decision.
    Way to go, Nyana!

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