Sleepless Nights

Author: Veronica

  • 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.

     

  • The soundtrack to my mental breakdown

    Yesterday afternoon Evelyn was set free from hospital, with orders to follow up with the paediatric team in a week. She’s tolerating the phenobarbital relatively well, if by relatively I mean “sleeping all the time” and “looking rather comatose right now”. She is still waking for feeds, which is the important thing.

    Now that we’re home though, I can feel the mental breakdown coming. So far I’ve managed to put it off with various things that needed doing, like cleaning out the pantry, tickling the older children and getting dinner in the slow cooker.

    It’s coming though. The school holidays are nearly over and I’ve spent most of them in hospital with the baby. She’s eight weeks old tomorrow and so far has spent nearly as much time in hospital as she’s spent at home. It doesn’t seem fair, does it?

    Evelyn might be fine. She might be terribly unwell. We won’t know until her metabolic tests start to come back over the next few weeks. I’ve spent the last three weeks helping to hold her down while doctors and nurses stuck needles in her. I’ve dripped sucrose in her mouth while she screamed until she went blue. I’ve cleaned dried blood off her tiny feet, and kissed IV bruises. I know where to find the adhesive dissolving wipes and which tapes she is allergic to. I know which of her veins will give good access and which won’t. I also know now that while doing a heel prick to get blood might sound less traumatic, it’s not and you shouldn’t do it.

    Now we’re home again, waiting.

    I stood under the shower last night and there wasn’t enough hot water in the world to wash the grimy hospital feeling off my skin. I soaped and scrubbed and could still feel the sweat from days of stress on my skin. I bathed Evie and delighted in the fact that she smelled like home again, not like blood and tears and hospital linen.

    I think one of the things I miss most when I’m in hospital is music. Music is my sanity saver when things get hard, and you can’t exactly turn the music up loud and sing when you’re one of four cots in a ward.

    Amanda Palmer released her new album “Theatre is Evil” recently. I backed her Kickstarter because I’m a fan (see, here and here) and I’m enjoying her album a lot. It’s currently the soundtrack to my mental breakdown as we wait for Evie’s tests to come back.

    It’s nice to have good music to listen to while I try not to sit in the corner and rock.

    Anything else you want to suggest doing to put off my breakdown?

    —

    [So, Evie is still seizing, despite the meds. Her eyesight appears to be sporadic, and she’s occasionally tracking with her eyes, which is so relieving to see. Of course, her blink reflex is still not great, but we won’t know if her vision is diminished, or affected by the seizures until she’s a bit older. She’s still not smiling or showing any interest in toys or hanging/dangling things. I don’t know if she’s only tracking with her eyes because we’re giant dark blobs of stuff she can see, or not. It’s going to take time to work out what is going on there, because frankly she’s too little to know anything for sure.]