Category: Life

It was our anniversary yesterday.

A year ago yesterday we got married. A year ago today, I started to miscarry. A year ago tomorrow, I lost a baby. It’s a strange time of year. Introspective, but not sad. Maybe if I didn’t have Evelyn, I’d be sad, but I do and everything that happened a year ago was the lead up to falling pregnant with her. The pregnancy that failed paved the way for the pregnancy that succeeded and here we are, twelve months on.

We spent the day doing not very much at home. Nathan watered the new trees that we’ve put in, carrying buckets backwards and forwards all over our paddock. Isaac ran around, ending the day on an incredibly festive spirit by colouring his face in green and red. Amy cried, tired after a long Monday at school and Evelyn slept. I did a bit of everything, including more words on my current WIP.

If you look over into the sidebar you can see that I completed NaNoWriMo with days to spare. A week to spare in fact. I’m rather proud of myself, because November hasn’t exactly been a stress free month. If you’re interested, my novel synopsis can be found here. Feel free to tell me how much you like it, I’m currently running on a mix of chocolate and ego and my ego meter needs refilling.

I’m enjoying the writing. Fiction is a lot of fun, harder in some ways, but a lot easier in others. My characters have rather nicely taken over and are currently running the show – I’m just the one writing it down for them. I reckon it will finish up somewhere around 100k words, but we’ll see.

In any case, nothing new is happening. Evelyn continues to twitch. Two weeks ago she started holding her head up when she was on her tummy. That lasted a whole two days (long enough for the Paed to see it, at least) before she lost that skill. Her vision seems to be getting a bit better, unless she’s tired or upset, or there is too much background “noise”. (I think I’ve said this. Recently in fact. Am I repeating myself? I repeat, reality is a bit warpy when I’m writing fiction.)

So she’s back to trying to eat the floor when she’s on her tummy. No signs of rolling over yet, nor can she grasp toys yet, or hold onto things. We’ll get there, it’s just a slow process. We see the neurologist again in a bit over a fortnight, so hopefully he has some ideas for us by then.

In summary:

I love my husband still; having a small baby makes having a miscarriage a year ago not that sad; I win at NaNo and am entirely awesome; and the baby is still odd- adorable, but odd.

How are you? What’s going on in your November that I have missed? Fill me in. (And yes, I mean YOU. If you’re reading here, I’d like to know how your month has been. Stop second guessing yourself. I honestly want to know. Tell me your stories.)

It’s my birthday today. I went and spent all my money at the nursery, buying trees. It’s a good day.

I’m 24 today.

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.

Oh internet, I am shattered after this afternoon. They recannulated Evelyn in order to take lots of blood, only to have the line kink and require lots of fiddling with.

Eventually they got the line working again (I’ll point out here that it was nothing anyone did wrong, just a thing that happens), while Evelyn cried, loudly. Sucrose, normally the liquid saviour of the gods – or more accurately the saviour of tiny babies undergoing painful procedures, helped, but it wasn’t as good as previous times.

Eventually it was done though and thus began the lumbar puncture ordeal.

The first needle got us nothing. The second needle got us blood. The third try got us mixed spinal fluid and blood, but not enough to be useful for testing.

The doctor was so apologetic, but she will have to have another lumbar puncture tomorrow.

It wasn’t easy to watch. She screamed so hard that she turned blue. Then once it was over, she was pale and miserable, until I managed to feed her. She sweated everywhere and gave herself a heat rash.

I was fine during it, but I’m not sure whether I want to cry or throw up more now.

And we have to do it all again tomorrow.

In the meantime, our Paeds (who are a great team, by the way) continue to consult with the Royal Melbourne Children’s Hospital, and I have to try and film more seizure activity.

It can only get better, right?

Ah Internet, so much has happened since I last wrote here. We brought Evelyn into emergency yesterday morning, knowing that the Paeds team had been appraised of her condition and were expecting her arrival. By 5pm she had been transferred up to the high dependency paediatric ward, for observation and testing.

So far she’s had lots of blood drawn and an EEG, which have all come back normal.

The concerning thing at this stage is how much she is sleeping. I guess she’s averaging around 22 hours of sleep a day, which is ridiculous when you consider this blog is called Sleepless Nights.

Now we have to start testing for the really rare things that can cause seizures and sleepiness. She will have an MRI in the next day or so, as well as a lumbar puncture and another whole lot bloods. There will be testing for chromosomal abnormalities, as well as for rare metabolic disorders.

We’ve got hoof beats and we’re now looking for zebras.

She’ll be in the paediatric ward for another few days, while her doctors here liase with the paediatric neurologists in Melbourne to get their opinion on a course of action for Evelyn, regarding possible medications and treatment.

Until then, we’re waiting. Waiting for tests, for results, for Evelyn to stop sleeping quite so much and stop twitching.

Waiting.