Amy

I really should stop Googling things

by Veronica on April 26, 2013

in Amy,Evelyn,Seizures

This morning I tried to feed Evelyn. After deciding she didn’t really want any milk, she lay there across my chest, smiling at me with her tongue out, showcasing its twitching and shaking. It’s times like these I wish I had magic video camera eyes. Then I can play these scenes for her Paediatrician, and he can see what I see.

Yesterday I spent an hour trying to video her tongue, while she spent the time trying to grab my face, eat the camera, kick me, or shout. None of these things make videoing a fine tremor easy and I can’t say with any great certainty that I managed it.

I Googled, afterwards, because it’s what you do in this world of instant information. You Google.

Then I stopped Googling, because there is nothing I can find that suggests a tongue tremor in a baby is a good thing. Sure, maybe if she was a perfectly healthy baby and it was our only symptom I wouldn’t worry, but gross motor delays, seizures AND a tongue tremor?

Step away from the Google-machine Veronica. You don’t need to know this stuff yet.

I am pacing the floor with Evelyn, because she’s vaguely grumpy and I have things to do that don’t involve her shouting at me. In one hand she has a square of toast, which she waves around like a trophy. I guess it is a trophy, of sorts, considering she stole it from me.

I sway and she smiles at me, before shoving the toast in my mouth, not happy until I nibble a corner off.

“Your turn,” I say, chewing my tiny bit of pre-slobbered toast. She grins and shoves half of it in her own mouth.

My heart sings, because while she missed my mouth three times and her mouth twice, the behaviour right there is age appropriate. She’s showing lovely signs of cognitive normality and it makes me happy every time I see something I don’t have to worry about.

Later, she practices her new skill by sticking a well gummed rusk up my nose, in my eye and finally in my mouth. Her hand-arm control isn’t great, but she knows what she wants to do, and she wants to share.

Happiness is sharing sticky food bits.

Amy is sick. So sick that when I suggest she goes back to bed she does so wordlessly, without a fight. Later, she sobs into my arms because despite panadol, this virus she has is miserable and has already knocked me down a few days previously.

I rub her back and Evelyn, who is in bed with us leans forwards to stroke her face and pull her hair, looking worried.

As a distraction, we start reading Harry Potter, something I’d been putting off because I hate reading aloud. We snuggle in and her sobs diminish as she listens to my voice. Four pages in, she is ready for sleep and so I leave her, tucked up with her kitten, her bedroom dark and quiet.

She sleeps for an hour, this child of mine who hasn’t napped since she was nineteen months old, and emerges briefly for water before bursting into tears again.

I tuck her into my bed and I read more, because that’s what you do when your child is unwell. You do things you hate because it helps them feel better. Evelyn kicks in her cot, listening to my voice and I must admit, sick or not, it’s nice being snuggled with my girls on either side of me.

I can forget what I read on Google and my fears for this baby, as we immerse ourselves into the world of Harry Potter.

It’s enough, right now.

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Let’s play a guessing game.

by Veronica on March 23, 2013

in Amy,Evelyn,Isaac

I was looking through my photo albums the other day, and pointed out a photo to Nathan. He nodded, acknowledging that he’d seen it, and pretty much ignored me.

“Honey, which kid is that?” I asked.

“Evelyn, right?”

“Nope. Isaac.”

He came back over and had a closer look at the photo, which is what I expected. I make Nathan look at so many photos of his children – children that he sees every day – that I can forgive him for acknowledging and then ignoring me.

“Wow.” He said.

Internet, there can be no doubt that our children look very much alike.

031

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14weeks

I wonder, in twenty years, will I be looking at the baby photos and having to hunt down their dates to work out which child is which?

And, for regular readers, can you guess who is who?

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Exhibit A: Where did my baby go?

Exhibit B: I have THREE children. How did that happen?

Exhibit C: It was a cold morning and she is FUZZYWUZZYADORABLE.

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So, Internet. Everything has kind of gone to hell around here in the last few days.

Amy has had conjunctivitis and has been home from school for a week. This morning, Nathan and I discovered that she couldn’t hear 3/4 of anything we said. Luckily, we had a doctors appointment booked already, because it turns out she has what is commonly known as glue ear and has gone quite deaf. This explains why I’ve spent the last few days demanding to know why the TV is turned up so far.

Both of her eyes are bright red still, despite drops, so we walked out of the GP with stronger antibiotics to help clear up her sinuses, which will hopefully let everything fix itself.

Also a good thing that we had a doctors appointment today: Yesterday, I realised that Evelyn was having what I thought might be seizures.

Worse than that, she was having what looked to be lots of seizures, not just one out-of-the-blue convulsion.

I managed to catch some on video, dutifully showed the doctor, wondering if he was going to tell us we were being ridiculous, only to have him look quite concerned. This, I might add, is our incredibly laid back GP, who never seems concerned about anything.

He agreed that they certainly looked like seizures and is currently organising for us to see the hospital clinics, as soon as we can for follow-up. Probably early next week.

Her jaundice still hasn’t cleared up, which could be causing them – which wouldn’t be so terrible. Except then you wonder why her jaundice isn’t clearing up, when she’s feeding and gaining weight so well.

Around in a loop my brain goes.

They’re not terrible seizures, involving mostly eye flicking, rolling and blankness. They last anywhere between 15 seconds and a few minutes and she’s unresponsive while they occur.

She’s only 33 days old.

It hardly seems like we could have broken her in a mere month!

This is why new babies need warranties IMO.

 

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It’s 6am and I am both waiting for Evelyn to wake up for a feed and waiting for the NICU nurse to come down to the family care unit and do another blood draw to check the bilirubin levels.

We didn’t have a bad night, considering that Evelyn’s day night confusion meant that she was awake every 2 hours for feeding overnight. Benefit to this is that she’s flushing her system out and we had a LOT of dirty nappies last night. Downside is that with the pumping, my breasts seem to think that we’re feeding three babies. I pumped 60ml in 2 minutes from one breast last night. I don’t know whether to be incredibly proud, or horrified. I’m going with a mix of both.

Before you tell me that I should be pumping less and demand = supply, please know that I know these things. I’m stuck pumping for a bit though, as I need a supply of milk in the event Evelyn is readdmitted to care without me.

The current plan is that we do today’s levels and then Evelyn and I go home together. Then, on Monday we bring her back in for more bloods, hanging around in the city until we get the results. Those results will determine whether we can take Ev home for good, or whether she will need to come back to hospital. Pretty sure that I’m going to be a ball of stress on Monday.

Hopefully her jaundice is completely on the mend now with all of this phototherapy and she can stay home for good.

But enough about the baby – I want to talk about Amy.

Amy’s school report came home yesterday afternoon and Nathan read me all of the comments over the phone last night. Not only is my girl doing brilliantly wt school, she’s doing it with an eager attitude. Her reading is coming along beautifully and she is developing good strategies for maths.

When she was younger, we’d had some problems with Amy understanding continuity and how events tied together, but she’s showing very little signs on her earlier struggles and has been doing well predicting what might happen next, or what happened to cause this originally.

And then we get to her physical education comments. I had to laugh – for a country so obsessed with sport, I have not bred sporty children. Some of this is EDS of course. Amy enjoys sport and tries her best, but the comment gave me the impression that she’s just not very good at it. Which is perfectly fine and something I already knew. A child who can one minute be standing up and the next second be lying on the ground because “I just sort of fell over” is never going to be the captain of the soccer team.

She reminds me of myself, actually.

I wanted to put this here, so that I can remind myself later of just how damn proud I am of Amy’s efforts at school this year. In the chaos of being pregnant and sick and finally giving birth early, I didn’t want to forget.

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