Sleepless Nights

Author: Veronica

  • Neurologists and “not-seizures”.

    I had a witty title for this post in my head last night as I fell asleep. Obviously it slipped out somewhere between my dreams of Evie twitching and my dreams of researching ever-weirder syndromes on the Internet. I think it’s a little exhausting that I continue to try and work out what is wrong with my baby, despite being fast asleep. Also, I’m pretty sure Wikipedia doesn’t normally have purple elephants and unicorns with sparkles.

    We saw Evie’s Neurologist yesterday for the first time. They’d squeezed us in – creating an entirely new appointment at the end of the day, and Nathan and I sat in the waiting room while the receptionists clocked off for the night and a lone cleaner roamed the halls of the Paediatric Outpatient unit.

    The Neurologist took a full history, watched videos of Evelyn twitching, referred to her EEG that he’d read earlier and told us that he’s pretty sure that these aren’t seizures that she is having.

    What are they? No one knows. But they’re “not-seizures” and I spent an awful lot of time last night watching her “not-seize” while she slept.

    On the upside, the Neuro seemed like a doctor who loves a good medical mystery. On the downside, that medical mystery is my tiny 13 week old baby, and we’re no closer to knowing what is wrong with her.

    Her muscle tone is low and “concerning”. Her lack of any limb control, the same. She’s not hitting any milestones and we’ve just got to do the dreaded “wait and see”.

    He spoke briefly of the possibility of a movement disorder, but again, we won’t know anything until she gets older and misses more milestones (or catches up – whatever the case may be).

    Evelyn is an interesting case, and unfortunately, that’s not something you ever want your baby to be. Medically interesting is not a good thing, sadly.

    Her feeding is starting to suffer as well, she’s having trouble staying latched as she sucks and her weight gain is slowing down. I’ll discuss that with her clinic nurse and with her Paediatrician when we see them next.

    I just don’t know what is up with this baby of mine. They don’t think that she’s having seizures, but they don’t know what her weird movements are.

    And horribly, they probably want to do another lumbar puncture. Her doctors will ring around the pathology labs to see if certain tests have been done, and/or if there is more spinal fluid of Evie’s available for testing – but there’s some tests that the Neurologist would like run, including gene testing, and that will involve another lumbar puncture.

    I can’t even tell you how sick that makes me feel. One lumbar puncture is bad, two is fucking awful – but three?

    Sick.

    So, that’s that. In the meantime, I try and feed her as much as possible, and we wait for her to do something that will point us all in the right direction.

     

  • Tummy time and milestones

    Evie was 12 weeks old yesterday chronologically, and around 8-10 weeks old corrected.

    This is her doing her very best attempt at lifting her head during tummy time.

    At 12 weeks:

    – Her head control is poor, especially when she’s tired.

    – She rarely unclenches her fists and hasn’t yet discovered her hands. Nor does she put them in her mouth. They’re still wildly waving appendages that smack her in the face often.

    – She light gazes intently, but isn’t interested in faces, people, or toys. Probably because she can’t see them properly.

    – Feels floppy a lot of the time. Her Paed says that her muscle tone isn’t bad, but she still slumps in my arms and needs holding/cradling like a newborn when she’s being held.

    – Sleeps most of the day and all of the night. She will have a 6-8 hour stretch overnight without needing a feed, and then another 3-4 hour stretch after that.

    – Rarely cries. Actually, only cries if she is cold, uncomfortable, or wants to go back to sleep. Will whimper sadly when she’s hungry.

    – Still seizes regularly and has only intermittent sight. Her peripheral vision is better than her central vision and she sees movement a bit.

    – Looks like this:

    So basically, she hasn’t hit any developmental milestones, her seizures continue and she is divinely edible. She likes music and will keep her head resting against my mouth while I talk or sing to her. She is terribly difficult to entertain, because of the sight issues, and if you don’t speak to her for a minute, she forgets you’re there, gets really sad and then jumps when you speak to her again. She recognises my voice and will settle when I pick her up – provided I speak at the same time, otherwise she gets terrified with her magical ascent into the air.

    Also, this –

    I am so in love with this photo.

  • Red and yellow paint, and stolen seedlings.

    Today I painted our kitchen cupboards.

    Tomorrow I will do a final coat, before I paint the trim red.

    The lady at K&D yesterday looked at me a touch strangely as I bought red and yellow paint together, remarking to Nathan “but it’s what she wants and what she wants, she gets!” She was joking, but I didn’t feel like explaining that my choice of new paint was steered by colours my baby daughter is likely to be able to see. That rather than painting the kitchen black and white, I was going for red and yellow. High contrast colours, you know? And if Evie’s sight improves, well then, at least I’ll have a bright and cheery kitchen.

    Mock me all you like, but I’m rather a fan of the yellow at the moment.

    This morning I discovered that one of my children had drowned the new seedlings that I was trying to start in the greenhouse, and that rats (I think) had stolen the seeds and seedlings out of some pots and grow bags. It seemed like a particularly cruel thing, especially as I’d already had to replant everything twice after the chooks got in and ate them the first time. Nathan fixed the door after the chook debacle, and yet, here we are again, seedling-less.

    I’m tempted to lock a cat in the greenhouse over night and just deal with them plotting my demise. I mean, I’m pretty sure the tom-cat is plotting my death anyway, locking him up for a night can’t make him any more likely to kill me, right? Plus, this is why we have cats, so that they can do their jobs and de-rodent our paddock.

    Aside from that, everything continues on as normal. Evie is still seizing, sleeping all day and not hitting any milestones or seeing very much.

    How are you Internet? Have I missed anything major in your life?

     

  • On Evelyn’s vision, and another EEG

    We saw Evie’s Paediatrician yesterday and the short story is that she’s coming off the phenobarbital, having another EEG and then we’re reassessing dependant on the results of her EEG.

    At this stage, we’re going to have to wait and see how her vision develops and whether there are large improvements or not. Benign seizure disorders should not be causing delayed visual maturation however, so Evie continues to be a confusing case. Her sporadic visual abilities might be associated with the seizures, or it might be something entirely different, all on it’s own. We can’t know for certain at this stage.

    She still doesn’t smile to anything visually, but will smile at our voices or when she’s being touched, so that’s something at least. She does like light gazing, but seems to have trouble adjusting to being outside, even if we put her in the shade. Apparently there’s such a thing as too much light in Evelyn’s world. I think I need to buy her baby sunglasses.

    The Paed was encouraged by the fact that she does have the ability to track and follow with her eyes, even if she is using her peripheral vision to do so. Because she uses her peripheral vision, she can see movement relatively well, but always appears to be looking above our heads, or off to the side, as well as having good days and bad days – a sign of cortical visual impairment (DVM is CVI that resolves by 6 months – all my research shows that DVM is unlikely to resolve entirely in babies who also have seizure disorders) and so that is what my gut feeling is.

    She had a blood and urine test repeated, as she was too young at the time of original testing for whatever they were looking for to show up (but also, if that’s what she has, it should have been seen as calcifications on her MRI and her MRI was clear).

    So, that’s that. The EEG should be booked for the next fortnight or so and she had her last dose of Phenobarbital today, after having a half dose for the last three days. I’m torn as to whether the phenobarb was doing anything or not – my gut says that it wasn’t helping, and with the last few days of half doses, she’s actually been sleeping more than when she was on a full dose. And I know that it will take a while for the levels to drop in her blood, but last night (with no dose of PB before bed) she stayed in bed asleep for over 14 hours, waking twice for feeds – whereas usually once we give the PB she sleeps for an hour and then “fusses*” for another 2-3 before she’s ready for a long period of sleep (6-8 hours).

    *I say “fusses” but Evie is the most laid back baby, ever. Her “fussing” is wanting to be asleep, but cat napping instead.

    I guess now we’re back to waiting and seeing. Waiting for the EEG and seeing what it says.

  • The baby is asleep, again (still) and my grandmother continues to be dead. Yay, reality.

    My grandmother is dead.

    Pffft, I hear you say. You know this already, and sing a different tune already. She’s been dead for over three years now in fact, surely I ought to have gotten over it?

    But no. My grandmother is dead and I want to rail at the Universe, because she should be here. She should be here, because selfishly, I need her help with my smallest daughter and instead, she is dead. Every time I update my parents and Nathan’s parents after an appointment for Evelyn, I miss her. Every time I have to venture back into the hospital, I think of her. Every time the days seem long and shitty, I want to be able to phone her and shout about the fact that my baby is still sleeping, still seizing and nothing is getting better.

    Instead, she is dead and I am trying very hard not to kick the universe for this fact.

    About a month after she died, I lay in bed having what felt like a panic attack. I was done. I was so ready to be done with grief, to be done with the crapshoot of missing someone that badly, I was just done. I wanted my do-over. Door #2 please, I’ll take that one instead. No, cancer, you can get fucked, we’re picking a different path this time. Someone go back and pick me a new ending.

    The thought of having to miss her every single day for forever was just too much – the finality of it all was just shit, as the future stretched out in front of me – a future that was never going to have her in it, no matter what I went on and did with my life.

    It feels a bit like that with Evie now. I am ready to be done with the seizures now please. Ready to have my daughter magically fixed, by karma or whatever. Ready to wake up from this nightmare and have Evie’s eyes work perfectly and to be living the life I was obviously meant to have, before someone got confused and pressed the wrong button.

    The future of this is all stretched out in front of me and I don’t want to think about having to cope for another day with a baby who cannot see, and who has seizures and who is confusing the doctors at an alarming rate.

    But this isn’t a nightmare. This is my reality. The reality is that the baby seizes a lot. That yesterday and today she wasn’t even able to see high contrast toys, let alone our faces. That sitting on the couch with her, her eyes rolled around and flicked everywhere as she listened to my voice and she smiled when I kissed her cheeks – but didn’t, couldn’t, see me. That she sleeps all the time, spending only a tiny amount of time awake before needing to be put back to sleep.

    It feels like someone ought to come out shouting that I’ve been on candid camera, and that this is all a giant cosmic joke.

    Instead, the baby is asleep again (still) and my grandmother continues to be dead. Yay, reality.