Sleepless Nights

Blog

  • No control

    I had a bad day today.

    It’s this limbo of not knowing what is going on with Evelyn. Of watching the days slide past in a slow trickle, like sand through an hour glass, but not seeing any real changes in her behaviour. It’s not knowing if what I’m seeing at any given time is a “non epileptic paroxysmal episode” or a new type of seizure. It’s not knowing if she will be normal, or severely challenged, or somewhere in the middle.

    It’s the waiting, most of all.

    I sat on the floor today, holding my daughter and watching her try and smile at my voice, while her eyes darted around, not looking, not seeing. I sat there, and her tongue twisted strangely, and her arms jerked and her hands felt spastic (in the true sense of the word) and I wanted to cry, because we just don’t know.

    If she’d had an MRI and an MRI showed serious brain damage, then every thing that she did would be a celebration. From sneezing, to waking up of a morning. Instead, her MRI is clean and I’m left not knowing anything. Constantly wondering if this is it, is this what she will be like forever? Or is this just the very beginning and in five years, I’ll be remembering the days like today with a bitter taste of fear and crisis averted hanging around in the back of my throat.

    She should be normal.

    She is not.

    Evelyn is eighteen weeks old today and I can’t even think about what my other two children were doing at eighteen weeks old.

    And yet, it runs through my head, a constant litany that I cannot turn off; that I want to turn off.

    [Amy noticed her hands at eight weeks. Could hold a rattle consistently at nine weeks. Rolled at eleven weeks. Ate solid food at 17 weeks. Could sit propped up at 18 weeks. Was crawling at 22 weeks.

    Isaac noticed his hands at 7 weeks. Batted at his toys at 9 weeks. Had good arm control by 10 weeks. Rolled at 12 weeks. Rolled around the house to play at 16 weeks. Crawled at 24 weeks.]

    This constant litany, over and over again. I could play with them. They laughed. Enjoyed games. Enjoyed toys. Enjoyed us.

    It’s not the case, here and now. I hold Evelyn and cover her face with kisses. She licks me and smiles, occasionally cooing at me, but more often gagging on her own tongue and saliva. I stroke her hair and hold her tight because I don’t know how this story will end and every single second breaks my heart.

    I want her to be okay. I want for her to be okay so badly that every atom of my body aches for it.

    But I am only her mother and I have no control over this.

     

     

  • Miscarriages and anniversaries and I’m just all kinds of introspective

    It was our anniversary yesterday.

    A year ago yesterday we got married. A year ago today, I started to miscarry. A year ago tomorrow, I lost a baby. It’s a strange time of year. Introspective, but not sad. Maybe if I didn’t have Evelyn, I’d be sad, but I do and everything that happened a year ago was the lead up to falling pregnant with her. The pregnancy that failed paved the way for the pregnancy that succeeded and here we are, twelve months on.

    We spent the day doing not very much at home. Nathan watered the new trees that we’ve put in, carrying buckets backwards and forwards all over our paddock. Isaac ran around, ending the day on an incredibly festive spirit by colouring his face in green and red. Amy cried, tired after a long Monday at school and Evelyn slept. I did a bit of everything, including more words on my current WIP.

    If you look over into the sidebar you can see that I completed NaNoWriMo with days to spare. A week to spare in fact. I’m rather proud of myself, because November hasn’t exactly been a stress free month. If you’re interested, my novel synopsis can be found here. Feel free to tell me how much you like it, I’m currently running on a mix of chocolate and ego and my ego meter needs refilling.

    I’m enjoying the writing. Fiction is a lot of fun, harder in some ways, but a lot easier in others. My characters have rather nicely taken over and are currently running the show – I’m just the one writing it down for them. I reckon it will finish up somewhere around 100k words, but we’ll see.

    In any case, nothing new is happening. Evelyn continues to twitch. Two weeks ago she started holding her head up when she was on her tummy. That lasted a whole two days (long enough for the Paed to see it, at least) before she lost that skill. Her vision seems to be getting a bit better, unless she’s tired or upset, or there is too much background “noise”. (I think I’ve said this. Recently in fact. Am I repeating myself? I repeat, reality is a bit warpy when I’m writing fiction.)

    So she’s back to trying to eat the floor when she’s on her tummy. No signs of rolling over yet, nor can she grasp toys yet, or hold onto things. We’ll get there, it’s just a slow process. We see the neurologist again in a bit over a fortnight, so hopefully he has some ideas for us by then.

    In summary:

    I love my husband still; having a small baby makes having a miscarriage a year ago not that sad; I win at NaNo and am entirely awesome; and the baby is still odd- adorable, but odd.

    How are you? What’s going on in your November that I have missed? Fill me in. (And yes, I mean YOU. If you’re reading here, I’d like to know how your month has been. Stop second guessing yourself. I honestly want to know. Tell me your stories.)

  • More about Evelyn and various tests

    Evelyn’s brain and adrenal ultrasounds were clear, showing no signs of calcification from the Cytomegalovirus that she was apparently exposed to. I didn’t get a phone call about the blood tests done on the same day, so I am going to assume that no news is good news and that her adrenal and liver function is fine.

    Thursday, we received a letter in the mail from Evelyn’s neurologist, letting us know his thoughts and feelings surrounding the appointment. This is one of the nicer things about seeing a doctor from the RCH who flies down – his secretary cc’s us into the mail correspondence.

    It threw me for a loop at first, because he put into words things that we’d only vaguely thought of. Seeing something in black and white is infinitely harder than having it mentioned in passing. Things like “background of delayed visual maturation OR cortical visual impairment” and behaviors “have the characteristics of a movement disorder in this age group”. Movement disorders are, as a whole, a pretty yucky bunch. But then, anything that doesn’t give me a perfectly normal baby is hard and I was angry at the Universe for dumping this on us.

    Frankly, epilepsy would have been the easiest thing, if that had of been it. Instead they’ve labelled her “seizures” to be “non-epileptic paroxysmal episodes”, and decided that they’re probably not anything terribly serious. What is serious is all her strange twitching and just, everything. She’s a strange baby.

    The neurologist recommended another test for transferrin isoforms. I’d hoped that Ev had had this one done, because while what it is testing for is super rare, I would have been much happier if it was already done and negative. I’m trying not to think about the implications of this one, because honestly, it’s so rare that it’s highly unlikely to be that. I am thinking horses here, not zebras. Frankly, we already have enough zebras.

    Wednesday she has a hearing test, and more blood drawn. Hopefully this means the results of the blood will be back before we see the Neuro on the 7th of December.

    That’s it, really. She continues to be adorable, happy and an absolute delight. I cannot tell you how grateful I am that I get to be her mother. Which sounds soppy, but trust me, it’s true.

  • Procrastination and complaints.

    I’m procrastinating over my NaNo project and instead I’m talking to you, dear Internet. Not that I really need to be procrastinating. Things are going well, but I’ve just reached the end of a big scene and I need to go and lie down in a darkened room while I play “what if” with my characters. What if someone breaks an ankle? What if that terribly important thing goes missing? WHAT HAPPENS THEN? TELL ME THAT, HEY.

    Sorry. Distracted.

    Also distracting: Stress. Evelyn has lots of blood drawn tomorrow, followed by a brain and adrenal ultrasound. We’re looking for any issues with her adrenal system, as well as looking to see if the cytomegalovirus has caused any patches of calcification in her brain. If there are, then we have some idea of what is causing her neuro, visual and movement issues. If there’s nothing, well then, back to the drawing board we go.

    She laid on the floor this morning, propped up slightly on a breastfeeding pillow and smiled and cooed while I spoke to her. This is a good thing – a great thing in fact. She enjoys having attention paid to her, even if she has no limb control, hasn’t laughed, and still twitches an awful lot.

    Anyway, I left her on the pillow, returning a few moments later to discover that her eyes had stopped working again. She jumped when I talked to her, before gooing and smiling again – but not looking at my face.

    It’s all just bizarre. Her hands are still mostly clenched and the progress she is making is infinitely slow in comparison to her growth.

    We’ll see though. Hopefully the tests tomorrow will give us some more ideas of what is going on. If nothing else, we might be able to rule things out.

    Wish us luck.

    As for complaints – my internet has been shaped due to SOMEONE’S current obsession with the ABC4Kids website and videos. Stab me in the eye? It would be less painful than trying to do anything online currently. Ack.

  • I think I broke my brain. Reality feels a bit warpy.

    Exhibit A: Where did my baby go?

    Exhibit B: I have THREE children. How did that happen?

    Exhibit C: It was a cold morning and she is FUZZYWUZZYADORABLE.