Bad days and better days
Being at home with her this time around was a complete rollercoaster. I’d say it was a muddle of happiness and anxiety – I’m pretty sure most mums out there would ‘Amen to that sister’ because to me, on some level, if feels true of many new parent’s experiences.
You fumble your way through at the best of times and if you’re lucky you hit your stride early and things start to make sense. My stride definitely came MUCH later and anything close to it at this stage was interrupted by unpredictable ‘fits’ that would turn our marginally happier (now that she was medicated) little sausage into a refluxing, pulsing state. I barely put her down or took my eyes off her back then, so the minute I felt or saw her arch her back and go rigid, I knew I’d be there to comfort her through it.
We had bad days and better days… and more bad days but life carried on regardless. Mark and I decided that we wanted to create as normal as an environment for Dotty as possible and were conscious of not staying in all day, staring at her in case she had a turn. (I could do that just as easily when were out so it made no odds to me!)
When things weren’t too bad, we ventured out to the park, to meet friends or family or on one occasion to IKEA. We must’ve been mad. This would’ve been a classic case of Mark asking me what I wanted to do and then me replying “I KNOW! Let’s go to IKEA!”. My insatiable desire for meatballs in that gravy, topped with cranberry dribbled on chips and peas would’ve beaten him into submission and before he knew it, we’d be pulling into the Wembley branch car park arguing about whether to bother to look for a Parent & Child space or not. Ha! Yes, I’m a nightmare (he married it.)
She was averaging about 3-5 ‘fits’ a day and IKEA day was no exception. She’d had a ‘good’ morning meaning not much crying and only 1 mild turn. We got our clobber on, filled the car with unnecessary baby gear and revved onto the M25 (Mark was driving – It was customary for me to sit in the back with Dot and pretend he was our chauffer.)
She had 2 when we were there: One in her pram and one when I was carrying her. They never got easier to deal with but over time, my reaction became almost regimented as they happened so often. I’d immediately switch to autopilot mode and say one of two things; “She’s having another one…” or “She’s doing it again…” followed by a rather firm “…give her to me.”, If I wasn’t holding her already.
I’d feel the fear in the pit of my stomach and my mind would start to race;
“Oh no, not again… what if this one is worse, what if we need to call an ambulance, what if she doesn’t stop…what if…”. So many ‘what ifs’ that didn’t bear thinking about but ones that crept in all the same.
Not wanting her pick up on my panic, I’d cradle her trying hard not to coil and stroked her face and head as I gently whispered, “it’s ok baby, mummy’s here” over and over again until it passed. Although her body was twitching, she never made any noise, instead her jaw was clamped shut, which I found really unsettling. The silence was frightening and I remember willing her to cry out so I could be sure she was breathing. Once it was over her arms would raise up and as her body relaxed she’d release a little groan (still with her mouth closed) and would just lay there staring at me with tired, helpless and still eyes that broke my heart.
Over the next couple of weeks, she started to have more and more each day and before the end of the month was done, we were back in A&E, where we were admitted to the children’s ward for the third time in 7 weeks for more overnight monitoring. Mark came straight from work that evening, waiting with me until the early hours to be moved upstairs to a bay, after which I told him to go home and get some rest. There wasn’t any use in both of us staying up all night and I was comfortable knowing that we were back with the excellent nurses that had taken care of us all before. She continued to ‘fit’ through the night and I managed to catch the end of one on camera* as I was encouraged to keep filming them as reference for the Doctors.
The next morning, Rachel came armed with sandwiches (that I nibbled on) & mini eggs (that I inhaled) and sat with me until the consultant did his rounds later that day. I recognised him from our first admission and was thankful that I had someone vaguely familiar with her case. He asked me to chat him through everything that had happened and after the 2nd or 3rd time that I said ‘she’d had a fit’ he stopped me and said;
“She’s not having fits, so we shouldn’t call them that.”
“What is she having then?”
“Well they’re not fits or seizures, it’s something else…Twitches.”
“Twitches?! Her body convulses as if she were having a seizure but I should call them ‘twitches’?”
Sure she twitched when she was having whatever it was we were now not calling a ‘fit’ but I saw that as a by-product of what was happening, not the route cause. I wasn’t running my 7 week old baby up the local hozza on a regular basis because she TWITCHED!!
Anyhoo, no prizes for guessing that my response was tinged with mild irritation. We agreed to disagree and moved on to talking about poo, or lack there of it. Dot wasn’t a regular girl and definitely struggled in that department – it didn’t help that her Reflux meds constipated her on top so she was taking Lactulose to try and combat that. The consultant examined her and said that she was really constipated and needed further help in moving things along. He began to talk to me about what we could do to kick-start the process;
“Give her some diluted pear or prune juice or even some finely pureed pear”
“BUT she’s not even 8 weeks old yet?? Isn’t that too early? I’m not sure I like the idea of giving her juice…”
“….Would you rather I pumped her full of laxatives?”
Aaannnd I immediately shook my head and shut up. I made that one all and respected him for putting me in my place. Once we’d gotten past that, he turned out to be a real support. He gave me his email address after I broke down about how worried and helpless I felt and to his credit, he emailed me back both times I dropped him a note to check-in.
Before he left, he told me that Dotty had put on a healthy amount of weight and as she’d had a growth spurt, it was likely that her Reflux meds needed adjusting in line with that, which was probably the reason she had suddenly started having more turns. After a while, one of the nurses came back with a new combination of meds at a higher dosage.
The Domperidone was increased and the Ranitidine was replaced with Omeprazole. We were told to avoid Infant Gaviscon as this was potentially adding to her constipation and to focus on water, prune and/or pear juice instead. We continued to give her Lactulose to make things that bit easier for her on the rare days she did attempt to fill her nappy. She must’ve been so uncomfortable all of the time, it’s a wonder she stopped crying or smiled at all. What a trooper.
Later that day we were allowed to go home and from then on we stopped calling whatever she was having ‘fits’ and referred to them as episodes, turns and even wotsits. I know. WotsisI was trying to make them sound less scary – needless to say it didn’t’ stick.
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