Google me this
On reflection, this six-day stint in hospital was particularly rough however, we were quite conscious not to let that show around Dotty and tried to remain as upbeat as possible, bringing in things from home in an attempt to make our room a little less depressing and sterile. I popped soft toys in her cot and covered hospital bouncers and chairs with her giant spotty muslins that I think I bought from mamas and papas when I was pregnant. (I LOVED those muslins and still have a couple left. They really brightened up the place and are so freaking useful.)
Contrary to the adorable pictures above, Dotty barely slept at all during this time and one particular day saw her stay awake for nearly 8 hours without dropping a single z. I found that really hard and would plead with the nurses “Babies are meant to sleep in order to develop right??? Why isn’t she sleeping? What am I doing wrong” I was so worried that the lack of sleep was making her worse and it was. The more tired she was, the more she’d ‘fit’ or have her ‘episodes’. She was having multiple ‘seizures’ a day and they were now much more heart breaking to watch but we continued to try and film them as instructed. (You can find the one relating to this post by clicking here.)
I logged everything in my my notebook and had began to refer to her ‘episodes’ as ‘fits’. At the end of each day and week I rewrote it all in an overview so that I could easily recount what had happened to anyone that asked;
“Monday – 2 fits
Noticed her going rigid briefly, thought it was startle reflex but was uneasy about it
Tuesday – 10 fits
More obvious that it wasn’t just startle, she went rigid, arms and legs jerked out, eyes wide. She had these each time trying to drift off to sleep but they prevented her from sleeping – agitated and very distressed. Repeat cycle (came to hospital – some at home, some here).
Wednesday – 10+ fits
Wasn’t logging them all myself as she was so upset but happened more frequently than the day before. Same thing happening, alert and ok between, before/after.
Thursday – 19+ fits
Started logging accurately from 4pm. Over course of the night they got slightly longer. No sleep for 7.5 hours in the day, distressed and very overtired. Not able to fall asleep due to fits/seizures.
Friday – 19 fits
Over course of Thurs night/early hours of Fri AM, the fits developed to include twitch/jerking of her right arm and sometimes her leg. Head rolls to one side, eyes wide and mouth flickers. Majority now start with original rigid jerk and then develop into this. Concerned about going home until see signs of improvement. Started meds for Reflux and changed milk to Nutramigen.
Saturday – 9 fits
Filmed one start to finish, no-one taking record today apart from me – ask nurse. Doctor saw us today – worried about sleep deprivation. No sleep from 6.30am – 12.45pm. Due a feed when she finally went off, didn’t wake her, let her sleep.
Sunday – 7 fits
Less again today. Arms rigid, lots of leg twitching, started to cry more at the end…”
When I read that extract and the other pages in the book now, my eyes immediately fill up with tears and I can’t believe how routine it felt to log and detail them in this way. I think it was definitely a coping mechanism and I suppose it stopped me from completely falling apart. It was almost like it became our norm and writing about something so awful and painful in such a matter of fact way was my way of navigating through it.
Each time she began to ‘fit’, I’d say “She’s having another one, time it!” Then I’d lightly touch her shaking limbs and talk to her to try and sooth her until she stopped convulsing and relaxed out of it. I never cried during them and was purposefully strong and focussed. I’d scoop her up and hold her afterwards and a silent tear or two would fall from my face but then I’d hand her to Mark or put her down to write exactly what happened down. It was like it was my job and I saw it as part of the process of getting her better.
This is around about the time that our love/hate relationship with the torturous goddess that is Google truly began.
I’ve always lived by the motto that knowledge is power and I still believe that, but too much information can also drive you potty so where do you draw the line? When researching something like ‘seizures’ and ‘Reflux’ you open the floodgates to a level of information overload that will, more often than not, overwhelm you. I wouldn’t recommend asking Google for a medical diagnosis of any kind because quite frankly she’s a bit of a scaremonger. She’ll suck you in and more than likely only show you the most depressing or worst case scenarios on this sort of thing. On the rare occasion that she does show you something positive, you won’t see it. You’ll still pick up on the one potentially life threatening or devastating piece of information and obsess about it, disregarding the rest. She makes you irrational and in my case, a bit of a lunatic.
BUT she’s also cunning and clever and assures you that she almost definitely has the information that you need, you just have to be prepared and strong enough to wade through the darkest of swamps to find it…“Pass me my wellies, I’m going in!”.
And so we learned the hard way. We hit Good Lady Google early and we hit her hard. Too hard in hindsight but I suppose we had to go there to come back. It scared the tits off of us as we took it in turns to secretly cry and endlessly speculate, trying to make sense of what was essentially a LOT of medical speak about babies having seizures. We were drowning in chat rooms that cited anything from wind to epilepsy to infantile spasms to GERD/acid reflux as potential reasons for her ‘episodes’.
We were in trouble. Both of us eventually in so deep that we struggled to claw our way back and switch our phones off. We’d try and calm each other down whenever it got too much and vowed to ‘STOP ASKING GOOGLE’ or at the very least to ‘NEVER TO GOOGLE ALONE’. It got out of hand and to this day, for different reasons, it still does at times. I often think about how we can turn our obsessive Googling into something positive…
Me: “Hi, I’m Emma…”
Him: “…and I’m Mark…”
Us: “…and together we are…Addicted to Google!”
(Cue polite applause as we begin to sing a folk song about our ‘story so far’ wearing floral and paisley prints, in a bid to get through to Judges Houses.)
Maybe not. I digress.
I still have such mixed feelings about hitting the internet for answers. On the one hand, it’s frightening and depressing but I’d be lying if I said it didn’t help us on a lot of levels too, it was just really hard to find and digest the right information. And that’s the main reason I started this blog – to try and share our knowledge and progress in a more personal and consumable way.
Over time, we’ve gotten smarter about what to Google and when and It’s not something we take lightly anymore. If one of us slips up and gets sucked back in, we confess immediately and talk about it to avoid it festering and causing ongoing worry but admittedly, that’s SO MUCH easier said than done.
By now we’d found that Evil Reflux CAN in fact cause what appear to be ‘seizures’ and it’s around about this time that I realise that I’ve got some serious grovelling to do to a certain Doctor who might’ve got my goat a bit earlier.
*Grabs phone and types ‘how to apologise to my Doctor without crying’ into Google*