As we were taken back to the Children’s Ward, I felt such worry at what might be wrong with Dotty but also huge relief that we were in the right place to figure that out. Familiar faces greeted us as they settled us into our own little corner room and tried to put us at ease. “The Doctor will be round first thing” a nurse told us, “ so we’ll monitor her like last time until then”. We smiled politely and asked for some formula and a steriliser for Dotty’s bottles as we unpacked our things.
(That’s actually a top tip of mine if you’re in hospital at any point with a baby – always ask for formula, nappies, or whatever you need sooner rather than later as it can take a while to arrive. We learnt the hard way the first time so I was ready by round two and wasn’t shy about asking. I actually had formula on me when we arrived having had a chance to pack a bag beforehand but I wasn’t sure how long we’d be staying, so I asked for it anyway.)
As it turned out, I’d do that every morning for the next 6 days.
It dawned on us quite quickly that whatever was happening to Dotty was getting worse. She was having what I was absolutely convinced were short seizures and her movements were progressing, making it more obvious to spot when she was having one. We were told to try and time them, call one of the nurses or push the emergency alarm each time they happened which became a regular occurrence as the night went on. None of her vitals seemed to be effected so they carried on monitoring and timing her and stuck with the plan of discussing a course of treatment with the Doctor on his rounds in the morning.
I barely slept a wink and decided that I would occupy my time with making my own log of exactly what was happening to her, timing and detailing the length of each ‘episode’ and what her body was doing each time. If I’d had a computer on me I’d have thrown myself deep into a spreadsheet but alas, scraps of paper and old notepads would do just fine. We also carried on attempting to film them which was hard to do as my instinct was to pick her up each time, not to standby and watch it play out but we were encouraged to and I’m glad. The short videos we took showed the Doctors much more than we could ever try and explain which I feel made the support we received more immediate.
One of the most common questions I get asked as people continue to read about our story is how I remember everything in such detail. Well now you know the answer. From the day Dotty was born, I scribbled in notebooks and logged each cry, feed, burp, fart and poo (or lack there of as it seemed!) in order to try and wrap my brain around what she was doing. It definitely got a bit obsessive and I remember people looking at me funny as I abruptly stopped talking and frantically scrawled things in various books, mid conversation. That was BEFORE the hospital stays so you can imagine the level of detail I was going into now! Plus when you’re a sleep deprived new parent that’s dealing with a sick baby being asked lists of questions by clever medical types, your brain goes to mush, or at least mine did. Writing it all down meant that I had answers and notes and lists of things to fire back at them before they wrapped up the chat and carried on with their duties.
The next day or so consisted of a lot of monitoring and talking to various people about running more tests to gain a better understanding of what was going on. We were told that she’d need another batch of blood tests, another EEG – a prolonged one this time (deep joy) and an ECG to check her heart. They would happen as quickly as possible over the course of the following days and her results showed nothing out of the ordinary, thank god.
They hadn’t given Dotty any medication at this point (she’d had Phenobarbital on her first visit) which honestly worried me as she seemed to be convulsing a lot more but at the same time I wasn’t going to push for her to be pumped full of strong sedatives either. I was, however, quite vocal in asking what they thought was wrong and what they were planning on doing about it as we continued to watch her ‘fit’ more and more frequently.
Eventually a Doctor came to talk to us that we’d spoken to the first time she was admitted. You remember the one? The fella that rocked up with a harem of medical students with him (Ok, maybe 3). He was back, on his own this time and I was adamant I was going to get some answers.
He stood beside Dotty as I fired a barrage of questions at him, barely taking a breath to let him respond as I thumbed through my notes between each one; ‘Does she have epilepsy?’ ‘Will she need to be medicated or will she grow out of it?’ ‘Is she having seizures in your opinion?’ ‘Are they damaging her brain?’ ‘How long will you monitor her before trying something that might help her?’… etc, etc, etc.
He answered as well as he could with me staring at him with my best ‘don’t you dare try and fob me off’ face but I couldn’t really make sense of what he was saying. The fact was, he was doing his best and he really didn’t know. It was too early to tell and although her ‘episodes’ did in fact look like seizures that wasn’t necessarily the case.
It was at this point that he began to talk to us about Reflux. Now, just take a moment to imagine my face as he attempted to suggest that Reflux might be the root of her problems. I couldn’t hide my irritation and honestly looked at him like he was a complete weirdo for even thinking it. He was now an imposter in my eyes, posing as a Doctor that thought it might be funny to wind up a few parents before being found out and arrested. I was of course being harsh and very unfair in hindsight but I just couldn’t take it in.
“So you DON’T think its epilepsy then?? And you think its Reflux??”
“No Mrs Gardner. I think it’s 50/50. It’s too early to tell if it’s epilepsy or Reflux. I’d like to start her on treatment for the Reflux immediately to see if that helps or to simply rule it out…”
As he talked more, I tried to listen but my mind was racing with frustration. Yes, I’d heard of Reflux but only in the sense of kids vomming their milk over everything so I couldn’t understand how that was anywhere near relevant as Dotty was NEVER sick. We knew by this point that epilepsy ran in my side of the family and I’d also heard that Reflux babies had trouble thriving due to all of this aforementioned vomming – if anything Dotty was a hungry baby and was over average in terms of her weight and measurements so it continued to baffle me.
Mark was much calmer and appeared to take more of what he was saying on board. I huffed and reluctantly said goodbye before shrieking, “that’s fucking RIDICULOUS” once he was out of earshot.
Unaware that I was about to eat my words, I slumped on the bed muttering obscenities under my breath as I watched Mark pull out his phone and type ‘seizures’ and ‘reflux’ into Google.