Sleepless Nights

Blog

  • On visual development, or a lack thereof. And seizures. Still with the seizures.

    In the mail on Friday we received an appointment to see the consultant opthamologist at the hospital later this week. Admittedly, this was well timed, as we’re getting increasingly concerned about Evie’s vision, but also slightly strange, because as far as we knew, her eyes were structurally fine and our Paed team hadn’t requested for us to have her eyes checked again.

    I rang them, and the registrar who had originally seen Evie wanted his boss to check her over as well. Which, great – only, is he doing this to cover his own arse? Or did he maybe see something and not want to sign off on it himself?

    We’ll probably never know. In any case, it works in our favour and Evie is being seen by the head of opthamology this week, when we’ll dump all our issues on their lap. Evie’s vision is sporadic, at best. We don’t know if the seizures are interfering with her visual processing, or if there is something else going on that is causing the seizures and visual problems hand in hand.

    We were pretty sure that her eyes were structurally fine, but I guess we can’t be 100% certain if the registrar himself isn’t.

    She’s still not interested in our faces, and while she smiles occasionally, it’s at our voices. She can track and follow – sort of – her eye movements are incredibly jerky (I think that’s age normal though), but it’s like she’s looking 6 inches above our heads or to the side in order to “see” us. There is never any eye contact, and she only appears to have peripheral vision. And the standard things, like she doesn’t blink at things moving near her face, not even when Isaac nearly poked her in the eye, or when I click my fingers at her eyes.

    If we add that to her sporadic blink reflexes (she can’t seem to concentrate on both seeing and sucking, so if you give her a dummy to suck, she rarely blinks at lights shone at her eyes) and her complete lack of interest in anything visually, then I think we’ve got some big issues going on here.

    I guess the main questions are going to be: How visually impaired is our baby currently? Is it treatable? Reversible? What is causing it? Will she grow out of it?

    I predict that the answers to all of these questions will be “We don’t know” and “We’ll have to wait and see.”

    Heh. I just have so much faith in the system, don’t I?

    She’s having seizures as I type this, in her pram next to me. Yesterday was a bad day for them – she went all morning without any and inside I was cheering, and then she seized pretty constantly all afternoon. Twitching and eye rolling and unresponsive. She’d come out of them long enough to scrunch herself up and grumble about it, before slipping into more. At 11pm last night she finally stopped long enough for us all to fall asleep, before waking up at 2am and starting the process again.

    Eventually I gave up on sleeping and just sat up and held her until they eased around 5.30am.

    It wasn’t my idea of fun, nor was she happy about events.

    Through all this, I am thankful for your support. Yes, YOU. For everyone who has reached out to say that this sucks, that they’re thinking of us, that they’re holding Evie in their thoughts and prayers. It’s saving my sanity and I need you to know that.

    So, thank you.

  • Nine weeks old.

    It’s been nine weeks since Evie was born and she’s getting very big. Things haven’t improved yet however and she is still seizing regularly, and her doctors don’t want to medicate her further unless her seizures start to interfere with development. Because she was a little bit premature as well, she’s got an extra window for what we would consider to be developmental delays.

    At nine weeks she:

    – Has just started to smile at us again, after stopping smiling for weeks when the seizures started.

    – Sleeps upwards of twenty hours a day. She slept all night last night, fussing around feed times (when I dream fed her), before waking this morning, feeding, seizing, and falling back asleep. She was alert for 20 minutes, max.

    – Very rarely cries. At all. She’ll give a bit of a shout if she is uncomfortable and she grunts and fusses a bit when she’s hungry, but the only time she really cries is if she’s getting tired again – or if she’s cold during a nappy change. Even then I don’t think she’s sustained any crying for more than a minute. Crying obviously takes energy she doesn’t have.

    – Is still having upwards of 20-30 seizures a day. Yesterday she had three long seizures back-to-back – I caught the last three minutes of one on video. It feels a bit strange to still be uploading videos to youtube when her doctors still can’t tell us what is going on, but who knows – maybe someone will see it and give us extra information.

    – Still has only sporadic vision. Yesterday she spent around 25 minutes looking and smiling at her father, before losing it again. For Evie, focusing and looking takes energy she doesn’t really have. She can definitely see sometimes, but other times, it’s like dealing with a blind baby. She knows our voices though and while she still startles if I pick her up without talking to her first, she calms down once I tell her it’s me.

    – Still has poor head control.

    – Is absolutely adorable cute. Especially when she’s awake and visually engaging, but even when she’s asleep.

    – Has just woken up.

  • So, we saw Evelyn’s paediatrician

    And in short, because I’m exhausted mentally and physically:

    – Her test results are back and are clear for metabolic diseases. Yay, my baby does not have something fatal!

    – We have No Fucking Idea what is causing her seizures.

    – We have to wait and see if they affect her development before we trial a new anti-convulsant. Phenobarbital is doing nothing, but they’re not keen to try anything else for a little while yet.

    – She can come off the pyridoxine, because her B6 levels are fine and the pyridoxine hasn’t helped. Thank goodness for that, she hates taking it.

    – We have no idea what is going to happen next, or how things will manifest themselves. Will she develop normally? Will the seizures magically stop? Will she be developmentally delayed? Can she see properly? It’s like super fucked up lotto for your kid!

    – Our Paediatrician and the team at RHH continue to be amazing and supportive. Which is nice, when they’re telling you things you don’t want to hear, like “We’ll just have to wait and see” and “We don’t know how this is going to pan out.”

    – I am so mentally and physically exhausted that I think I require a week in bed.

     

  • Nothing has changed. Baby is still seizing. Carry on.

    The last thing you want to be doing at 5am is watching your baby while she has a seizure. But there I was, lying down with my head close to hers* while I monitored her breathing and watched her eyes roll and her mouth twitch. After a few minutes, she came out of it and vomited all over her bed.

    Not that this worries me, except as a seizure symptom – she sleeps on a spare pillowcase to make middle of the night messes easy to clean up. Five minutes later, she’d seized again, puked again and was tired and unhappy at the current events.

    She rarely cries, this baby of mine. She gets sad when she’s tired, or uncomfortable, and she whimpers when she’s hungry, but she does not cry much. I am grateful for this, in the middle of the seizures and the vomiting and everything we’re dealing with, I am so grateful that she also doesn’t scream.

    Amy was a screamy baby, crying pretty much non-stop for her first 6 months until she learned to crawl. Then she alternated crawling with trying to kill herself (we lived in a house with steep stairs at that stage – it was … interesting) and refusing to sleep. I can’t remember how I coped, but it wasn’t pretty.

    So, Evelyn doesn’t cry. At 5am when she was unhappy, I gave her a dummy, rubbed her head, patted her stomach and she went back to sleep, before seizing again. She stayed asleep that time, but I wasn’t so lucky, as I wiped her pukey mouth and made sure that she was lying on her side to prevent her breathing anything in.

    This is my new normal and forgive me if I hate it a little bit.

    She laughed for the first time, did you know that? It was in the middle of a seizure though, so it doesn’t count. Just like the sobs while she’s seizing aren’t real sobs and nor are the smiles. They’re just responses to internal stimuli. It’s funny how this works.

    We see her Paediatric team tomorrow at the hospital, to let them know that neither the pyridoxine (B6 supplement) nor the phenobarbital (anti-convulsant) have made any difference to our baby. We’ll point out the new symptoms we’ve noticed and hope that they either mean nothing, or that they are benign. We’ll discuss the fact that her test results aren’t back yet, and aren’t expected for another 10 days or so. I’ll mention that her vision is still very sporadic, and that some days she hardly sees at all, but other days she will fix and follow beautifully (today is a good vision day – yesterday was not).

    And then we’ll hopefully get new meds to add to her current regime and more time at home while I try not to google “inborn errors of metabolism” and associated things.

    You know, because Google is apparently bad for your health.

    Dear Evelyn: I’m sorry for taking your photo mid yawn.

    *Yes, we’re practically co-sleeping. Evelyn has a three sided cot that fits in next to our bed, so that we can co-sleep on separate matresses. This is the sole reason that the Paed was happy to send us home the second time, because she’s not sleeping alone, or far away from me.

  • Puffleheaded ragamuffins, the lot of them.

    I hadn’t had enough sleep when my children started to argue this morning. Amy reacted (poorly) to Isaac calling her a pufflehead and Isaac reacted (loudly) to being called a ragamuffin, because don’t you know that is all WRONG, because Amy is the ragamuffin and Isaac is the pufflehead.

    In case you can’t tell, my children have a lot of hair. Tangly, messy, big hair. Amy looks rather Russell Brand-esque this morning in fact.

    And the whining. My GOD, the whining.

    The school holidays are finished and it feels like I spent most of that time in the hospital with Evelyn. I might be a little bitter about this, as I struggle with a lack of sleep today and children who seem equally tired.

    Evelyn had trouble staying asleep last night. Every time I settled her, she’d seize and wake herself up again at the end of it, crying. The medication hasn’t helped with the seizures at all, but it has made her incredibly sleepy. Which would be okay, provided I could sleep too, without someone shouting, or pulling hair, or demanding that I attend to their wants. Apparently I am the only one who can feed them, or something bullshit like that.

    We’re in this weird limbo at the moment – the baby is still having seizures, the metabolic results still aren’t back, her current medications aren’t helping and we don’t follow up with her Paeds team until Thursday.

    Thursday is alternately very soon and an age away. Time is fluid when you’re dealing with something like this. Elastic and taffy-like, stretching and drawing together.

    So, we wait.

    There’s an awful lot of waiting in situations like this.