Sleepless Nights

Author: Veronica

  • 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.

     

  • It’s not a good day today.

    At lunchtime, after expressing nearly 180mls of milk, care of a bunch of dropped feeds, I had to wake Evelyn up and encourage her to feed. She’d been asleep for nearly four hours at that point and it had been five since she fed. She wasn’t terribly impressed.

    Of course, she wasn’t terribly UNimpressed either – this baby of mine doesn’t cry. She shouts at me if she’s a bit tired, but crying? Nope.

    She only fed once overnight and stayed asleep for thirteen hours straight. Yesterday she was awake for around two and a half hours total. I’m hoping that her dropping feeds is an age appropriate thing, not a symptom of whatever it is she’s got going on. The other two kidlets fed every 2-3 hours, so I can’t remember what is normal baby behaviour and what isn’t.

    It’s a bit ridiculous, when you take into account that she’s ten weeks old.

    She had three big seizures while she was awake this morning, and then had a few clusters during her sleep. I’ve just put her back down now (she was awake for forty minutes this time) and she’s promptly started to seize again. I’m frustrated and tired and so very sick of seeing my baby twitch.

    Of course, I’d be completely batshit insane without the Internet. Especially Michelle, on twitter, whose baby daughter is having identical symptoms and who understands exactly where I’m coming from. If you want to send her some support too, I think she’d appreciate it.

    In the meantime, I will continue to wake Evelyn for feeds, and if all else fails, I can feed her while she sleeps.

     

  • Delayed Visual Maturation and a series of my grumbles.

    Yesterday Evelyn was diagnosed with Delayed Visual Maturation, before we were waved goodbye without any further information given, other than “sometimes, some babies can just take a while to develop vision”. No information pack, no suggestions for early intervention, nothing. Just, here, your baby has vision problems and we hope that they will have fixed themselves by the time she’s six months old.

    I was a bit frustrated.

    Obviously I’ll discuss this with Evelyn’s Paediatrician when we see him next week, but in the interim, I was left to Google to find out what exactly DVM is, and what, exactly, I am meant to do now.

    Doctors wonder why patients Google things avidly – it might be because in situations like this, the Internet has a little bit more information than anything we were given by a medical professional.

    Like, did you know, DMV can also be known as Cortical Visual Impairment (which doesn’t go away)? That in a lot of cases, DVM is considered something that has gone away by 6 months or so of age, unless your child also has other neurological things going on? Like, say, some form of seizure disorder? Or maybe DVM doesn’t actually magically rectify, maybe babies just get better at using their eyes with the limits they have. It depends on which sites you read and whether those sites ACTUALLY work with babies who can’t see properly.

    Needless to say, when a diagnosis doesn’t even have it’s own Wiki page, I’m a little hesitant about it being a “real” diagnosis, rather than just one of those things that they tell parents, in order to shut them up, while they hope madly that age and the plasticity of a baby’s brain fixes any problem before anyone gets too stressed.

    Of course, I am way too well researched for my own good, especially now, when it comes to Evelyn’s issues. Like, you know, the fact that my baby is having dozens of seizures a day and apparently isn’t developing her vision properly.

    You know, that kind of thing.

    Not that I’m bitter.

    [I’m totally bitter.]

    From what I can gather, DVM along with a seizure disorder will probably mean that Evelyn will have some sort of visual processing problem for a while yet, probably her entire life. And yet, no one wants to talk about this kind of thing, because they don’t like that her EEGs were normal and consider her seizures to be “not-seizures” or “benign seizures” or “we have NFI seizures” that are “probably not causing any damage” only NOW, my baby obviously cannot SEE properly, so can we cut the crap with any kind of “may not be causing any damage” and just treat things?

    Which is what I think our Paediatrician will do when we tell him what the opthamologists say about Evie’s eyes. He’s a good Paed, even if I am frustrated right now, and he is doing the best for Evelyn, balancing her age against the side effects of doing nothing (and let’s be clear, her eyes have been problematic since the seizures started, so it’s not something we could have prevented) versus the outcome of giving a small baby addictive, side effect-y drugs.

    Rock, meet hard place.

  • 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.