I Want My Life Back

I didn’t want to get out of bed this morning. I know many of us feel like that every morning, but this morning wasn’t the Ooh, I stayed up too late last night kind of not wanting to get out of bed. Not the It’s so warm and cozy here, I’ll just stay ten minutes longer kind, either. It was an I hate the world and everything about it kind of feeling that made me want to pull the blankets up tighter and ignore everything around me for a day. Don left for work at 8:30 and I was still in bed. I snoozed the alarm at 9:00 am, and again at ten and twenty past. At 9:30 I thought about Nyana in her bed at the hospital; likely still discomforted and probably covered in vomit, almost certainly wanting her Mum. I snoozed the alarm and hugged my stuffed elephant tighter as I rolled over.

Finally at ten minutes to ten I convinced myself to drag my sorry self out of bed. Not because I wanted to come see Nyana, because to be honest, I really didn’t. I made myself get out of bed and come up to the hospital because I felt guilty about not wanting to come, which just made me angry at myself, which in turn made me feel guilty for making this all about me when it really should be all about she.

So I put on my best I-can-do-this smile and headed out across the city. I ignored the feelings of anger toward complete strangers—the girl wearing nylons for pants with the tiny dog in her tiny purse; the stinky guy who sat half his fat arse on me when he sat down; the guy who hasn’t learned that it’s not socially acceptable to spit on a public sidewalk—and instead focused on my zen breathing, in through the nose and out through the mouth. I searched for zen as the bus rolled across the bridge, telling myself what I tell myself every day, that I just need to get through today. I felt my stomach begin to knot as we turned onto Oak street and started up the hill to the hospital. I used to get the same nauseating pit in my stomach when heading in to work at my last job; just this overwhelming feeling of not being certain I could possibly face another day within those walls.

I got to her bedside halfway through morning rounds. Dr Awesome was there and they continued as I got settled, and I heard words like radiology and morphine and chest x-ray. Nyana’s week-long discomfort and fussiness can likely be credited to an infection in the g-tube site—antibiotics were started on Tuesday night—and in a fit of foolishness she’d managed to partially yank out the tube overnight. While the bedside nurse was able to tend to it, all feeds through it were stopped, an OG tube was placed (and quickly replaced with an NG when she gagged up the oral tube), and we would need to wheel her down to radiology to ensure the gastostomy tube was still placed properly. A shot of morphine ensured that Nyana would behave herself as the doctor poked and prodded at the site.

Radiology called us at 2pm to say they were ready for us, yet we wheeled her down the long yellow hallway only to find ourselves waiting for 45 minutes in the procedure room. The procedure itself lasted only ten minutes: barium was used as a contrast and injected through the g-tube, then video x-ray was used to watch the cloud enter the stomach and exit into the small intestine. The doctor verified that all was as it should be, and before we knew it we were back in South Six, Nyana sleeping happily in her morphine coma and me, frazzled and wondering how this is what became of my Wednesday.

They snapped another chest x-ray while she was in radiology, just to be sure that our hour-long maskless cuddles aren’t tiring her too much, and that the week of inconsolable crying hadn’t collapsed a lung. Dr Awesome poked her head into our room a few hours afterwards to tell me that her x-ray looked fine, although still unchanged. Those godawful cysts are still there, making no haste in being on their merry way. It would appear that Nyana and BPD will be an item for some time, and that for the next two years or so, wherever we go, Mr. Bipap will be coming with us.

I’ve been so proud of myself over these six-plus months, walking around like Nyana had cured me of my impatience. Feeling like I’ve been so willing to let everything be on her time, feeling OK with her taking the long road home. But I had the realization this afternoon, sitting in the glider chair and listening to the white noise her room makes, that the frustration boiling up inside me is nothing more than misdirected impatience. I haven’t learned a thing about patience during our time in the NICU. I’ve just found a way to channel it into another emotion.

I’m in a funk and I keep telling myself that these feelings will all go away once we get her home. Once we bring her into our world—as opposed to us living in hers—life will go back to normal and this overwhelming anger and frustration will just wash away. I sure hope I’m right… I want my life back.

Nyana hangs out waiting for the good doc to show up.

Nyana hangs out waiting for the good doc to show up.


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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7 Responses to I Want My Life Back

  1. Twiggy says:

    awwww Karen. ((gentle HUG))

  2. Linda says:

    You are right Karen, your funky feelings will go away but for right now just accept them as part of this transition in your life. Once you get Nyana home you will find many more feelings, some that you didn’t even know existed and you will get through those too. And, you may never grow into “patience” but it will be there, just disguised as happiness or exhaustion or maybe even acceptance. Once you get Ladybug home you will be surprised where your patience will take you. That long, long road is getting shorter…..you are going to make the finish line and you will be holding “patience” in one hand and Nyana in the other when you cross that line!!
    Love you,

  3. ShannonB says:

    I am sending an urgent memo to the universe and whoever is it that is able to make such decisions – that you guys are done for the ‘big life lessons’ for now. Having a baby is a test of patience, but I wish you the mundane lessons in patience. Such as, I have been waiting for a sunny day to walk up and get our passport photos done, and today is sunny, so it would be nice if the baby would stop fussing. You might not get your old life back, but soon you’ll have a better, happier version of it. Very soon you won’t want to get out of bed because you’ll be in it with your little Princess, cuddling away the mornings instead of getting on a bus. I pray that day is very, very soon. Love and strength to you all.

  4. Jen Clarke says:

    I second Shannon B’s thoughts. Hugs to you!

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