Sleepless Nights

Author: Veronica

  • 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.]

  • I think we have a plan.

    As far as plans go, it’s not a great plan (a great plan being “magically stop my baby having seizures”) but it’s a plan and it will do while we wait for Evie’s metabolic tests to come back.

    She started phenobarbital Tuesday morning and has been having regular doses of what I am terming “baby drugs” (different from “kiddy crack”, in that “kiddy crack” is actually chocolate milk) and so far, aside from a sedative effect, there hasn’t really been any impact on the episodes.

    From here, we’re hoping to be discharged today, to continue giving her the phenobarb at home, while monitoring the seizure activity and following up in the clinic early next week.

    Side note: I am all for gazing adoringly at my tiny baby, but do you know how exhausting it is to watch the baby constantly, to the exclusion of nearly everything else? Exhausting. It’s a good thing she’s so pretty.

    If the phenobarb doesn’t work, we’ll try another medication. This we’ll continue doing either until something works, or she naturally grows out of the episodes, or the metabolic tests come back and tell us something.

    The problem with Evie’s seizure episodes is that she’s not presenting like a newborn. Normal newborn seizures (usually benign, I should add) are different to Evie’s. Evie is presenting with seizure activity that is similar to something that shows up in 4-5 month olds.

    She’s very advanced, obviously.

    This is, of course , the reason we’ve done all of these tests, because she’s not presenting in a textbook fashion for the benign seizure disorders that show up in babies. Typical child.

    Today when I see the doctors I will mention yet again the probability of Evie having Ehlers Danlos Syndrome (which, SURPRISE! can also be linked to a relatively rare metabolic condition] and see what they have to say.

    But really, until tests come back, we can’t do anything except try and control the seizures.

    (Or, seizure type episodes, as the doctors insist on mentioning, at which point I say that anything that alters my baby’s consciousness and causes her to have involuntary movements and limited to no responses during, is not normal, and I don’t care what we call them, can we just get on with fixing it? Also, EEG’s are great, but they’re not perfect and how do we KNOW that they’re not just originating from deeper in the brain? Where an EEG can’t pick up? I am probably too well researched for my own good here.)

    So, that’s it Internet. An interim plan.

    (Also, please let us get home today. This recliner is crap for sleeping.)

    Update: HOME! We’re HOME.

    That is all.

  • And we’re back in the hospital again. Also, my baby is now taking drugs.

    Last night, Evie was admitted to the paediatric ward again. She was showing no blink reflexes in Emergency yesterday evening and they were “very concerned”. We’d been sped through triage because she was having seizures as they triaged her and within five minutes of being seen by a nurse, we were in a bed in emergency. Shortest wait time ever.

    You kind of expect your baby to blink when bright lights are shone in their eyes; unfortunately Evie didn’t flinch. I knew her vision was playing up and that she couldn’t see faces or toys anymore, but at home, lights were something she’d still react to.

    Her vision has been changeable though, so who knows what will happen. We should have an appointment with an opthamologist today to try and work out what is going on.

    In the meantime, she’s just had her first dose of anti-convulsants (phenobarbital), which has rendered her comatose. Little did I know that my first venture into the world of barbiturates would be with me drugging my baby. (Okay, so the nurse drugged my baby, but semantics.)

    In any case, she’s had a few seizures this morning, a cluster at 2am (that I forwent recording in favour of trying to get her to sleep instead) and according to my shiny official piece of recording paper, over 30 seizures between 8pm and 11.15pm (three separate clusters). We were so lucky though, two doctors were in talking to me when she began one cluster and they got to witness them first hand.

    I think that’s about all for this early in the morning. I’m sure that it will be a very busy day for Miss Evie, while they work to ascertain if she’s gone blind.

    Wish us luck.