Author: Veronica

You all know that I don’t do well with waiting. I’m sure I’ve told you all often enough, but here I sit again, waiting and hating it.

Tomorrow we should end up with a Plan. Tomorrow, everything is either going to be infinitely easier, or infinitely harder – we don’t know yet. I feel a bit like Schrodinger’s cat actually.

Evelyn’s seizures have been getting more intense, lasting longer and she’s added in a head wobble/bob to the movements that she does. Today she’s been too tired to feed properly, but too hungry to sleep, leaving her cat napping, grizzling and feeding intermittently. She still sucks well, but she’s resting more during a feed and not lasting as long at the breast. I think she’s probably fed every hour today, rather than every three hours that was the norm a few weeks ago. Luckily my supply is so good that for the most part, all she needs to do is lay there and swallow.

I guess that was my big worry, that the seizures would start to tire her out, leading to a trickle on effect.

It’s going to take a few weeks for the rest of her test results to come back, the spinal fluid for example needed to go to three different places for testing.

In the meantime we wait for the Plan.

Evelyn is home from hospital again, while we wait for tests to come back and for the paediatric epileptologist to read her MRI and EEGs. We won’t know anything much until Thursday, we don’t think.

Evelyn continues to seize and twitch and sleep, and I continue to sit and watch her and worry.

The doctors have started Evelyn on Pyridoxine, which is a form of Vitamin B6. A deficiency can cause seizures and while it’s quite rare for breastfed babies of non-vegan mothers to be deficient (like, broken chromosome rare), it’s an easy thing to trial while we wait for results. Extra in her system isn’t going to harm her in the slightest, and so we’ve got nothing to lose.

We’re waiting on metabolic tests to come back, as well as tests to look for inborn errors of metabolism. The lumbar puncture on Monday was successful on the third try and much less traumatic for everybody. It did take a few goes to get a cannula in to draw blood though and she’s a bit bruised and hole poked today.

It’s limbo really, this space between tests started, specialists called in and answers found. However, it feels like we’ve got a good plan and I know we’ve got a good team working on Evie’s problems.

Nothing much has changed, really.

But tonight, I get to have a long hot shower and sleep in my own bed. My family is all together under one roof and at this point, that’s enough.

Thursday, here we come.

I took the dressing off Evie’s back this morning, in preparation for a bath. Looking at the hole where someone stuck a needle into my baby’s spine – it wasn’t the smartest thing I’ve done. I pulled her singlet back down, zipped up her suit and held her close while I tried really hard not to think about the fact that they have to try that again.

We’ve had a good weekend, laid back and lazy. Amy and Isaac have been terribly naughty, a normal response to me coming home from somewhere. It’s how we know things are back to normal. Well, sort of.

I bathed my baby, washing the hospital sweat and dried blood off of her, and she slept and twitched and slept some more. We snuggled and for a while, things were okay.

Tomorrow, we take her back to the hospital, to hopefully find out what the plan in. We’re waiting for the teams at Melbourne to decide what they want to do with her, but that won’t be until mid-week.

It’s all up in the air and I don’t deal well with that.

In the meantime, Nathan and I have spent the weekend researching babies and seizures and everything else we can find, only to discover that not much is actually out there in the way of information about babies with focal seizures. We did discover that it’s possible her brain is just too tiny to show seizures on the EEG however, and we’ll go in tomorrow with this information.

Wish us luck Internet. It’s going to be a big week.

In the meantime, Evelyn is imitating a gingerbread man. Or a butterfly – depending on what member of my family you ask.

[Swaddle from Love To Dream, who sent it to me obligation free. It’s pretty cool and Ev likes it, so I thought I’d mention it in case anyone needs a swaddle for a baby. Soft, too.]

After an MRI and a two hour video EEG today, we are none the wiser as to why Evelyn appears to be having seizures, or “episodes”.

With that knowledge, we were granted gate leave in order to come home for the weekend. We need to follow up on Monday, when a new plan will be made, depending on what the Melbourne Children’s Hospital has to say. Unfortunately, they probably won’t have reviewed her information until later in the week, so backwards and forwards we go.

There is another attempt at a lumbar puncture in her future and goodness knows what else. I’ve just spent the last 20 minutes hashing together video footage of the episodes to send to the doctors, so that they’ve got more knowledge to work with.

She’s still having episodes on a regular basis, with the routine seeming to be that they’re more common shortly after a feed and as she falls asleep. Which is a good deal of the time, as she is still sleeping 22+ hours a day.

Strange baby.

No seizure activity was seen on her EEG, despite her having numerous twitchy episodes during the test – which had the benefit of allowing me to demonstrate her particular brand of limp and floppy to the technician performing it.

In any case, we have no idea what is going on and it seems, neither do her doctors.

Yet.