More than meds
So. Back to the hospital where we were part way through our 2nd stay, pinning all of our hopes on the small cocktail of drugs that Miss Dotty Mae was now having to take up to 3 times a day to battle her Reflux.
The course of treatment seemed to split the crowd in that some of the nurses clearly didn’t think that she had Reflux and were leaning more towards epilepsy or something else neurological as the diagnosis. We would talk to just about anyone that came into our room to check in on Dotty (& us, the manic parents) and some of the nurses would admit that they hadn’t seen such extreme reactions come from Reflux before. We were confused and worried but we were none the wiser and chose to trust the consultant that was leading her case. The way I saw it, it was worth a try. If the drugs didn’t work, then it’s wasn’t Reflux but if they did, then we’d finally have a way of helping her. As it happened, we saw results quite quickly and thankfully she seemed to be responding positively to the medication. She was still having her ‘fits’ but they were happening less and less each day and she was sleeping more, which was a huge relief.
It’s about now that her Doctors and I started negotiations about when we would go home.
Doctor: “Mum, if you’re comfortable with the idea of going back home, we are happy that the medication is working and can arrange for Dotty to be discharged as soon as you’re ready…”
Me: “I’m not comfortable or ready.”
This brief conversation happened almost exactly the same way, every morning for three consecutive days.
It wasn’t that I didn’t want to leave, I just knew that it wasn’t going to be that day…or the next day…or the next day.
Sure we would have to go eventually but I was apprehensive. The past few weeks had shaken me up a bit and I needed time. Time to ask more questions, mainly around what we should do if and when she had more ‘fits’ at home. The Doctor had already said that she’d still have them now and again and that we should bring her straight back if we were worried or if anything changed in terms of the length of time they lasted or if her breathing or movement altered in any way.
“And what if they don’t change?… What do we do then?.. Do we just accept that she has these ‘fits’ and that’s that?”
I’m not sure we ever got a straight answer to that question but we left knowing that if that were the case, all we could do is comfort her and watch her to document what was happening. Understandably it took me some time to get my head around the fact that this was the way things were and that we were going to have to man/woman up and deal with it. We couldn’t (and didn’t want to) stay in hospital forever and eventually we decided that it was time to get busy and work out what else we could do as parents to help her in our own environment.
I packed up our things (in about 15 minutes) and sat patiently on the bed with my sleepy girl, ready to be collected by my family later that afternoon. My sisters, Frankie & Bob and my step-mum, Chez came to get me and stayed with me once we were home until Mark could get back from work that evening. They were amazing and helped us settle in, making us food, cuddling Dotty, feeding her and chatting to me to make sure I was ok before they left.
It’d be an understatement to say that I was a tiny bit anxious but now that we were home, I was looking forward to trying to get back to some form of normality and for Dot to be in a more cosy and nurturing space. I hadn’t realised how much I’d missed our nana blanked filled haven until we were sitting on our couch, drinking tea and scoffing mini eggs, discussing what I was going to do with my time in the next few days.
Of course, I’d already decided what I was going to do. I was obviously going to make a spreadsheet! I was ready to research the hell out of how we could conquer Reflux and make plans and lists and more plans on how to go about it. BUT I couldn’t do it on my own and I knew just the person to rope in to help me. Cue Auntie Rach. No not my Auntie! Dot’s Auntie, Mark’s sister, Rachel. A mum of two who’s a double whizz at researching ALL baby related products.
Ever find yourself thinking “oh I wonder what the best bottles are to get for a baby”, or “does anyone know the brand of that highchair that looks all cool and Scandinavian?” or “how long can you leave a wet nappy on a baby before if really starts to smell?” She will know the answer. Not only that, she’ll whatsapp you a link, a reference or a photo within seconds of you asking. If anyone was going to know where to start on what Reflux gadgets to try and buy, it was Auntie Rach.
I’d come to the conclusion that there were 3 areas we should try and tackle;
- Keeping her upright. The Doctors told us that lying her flat was a no no, especially after feeds and that propping her up would be better in combating the acid flowing back up her Oesophagus. (Thus keeping her ‘fits’ at bay)
- Helping her sleep. She was more likely to have her turns when she was overtired so anything that might comfort her or sooth her to sleep was something I wanted to look at.
- Monitoring her at night. How were we going to get a wink of sleep now that she wasn’t hooked up to machines that would alarm if something were wrong?
We got to work and narrowed down which items to go for and then I had a right old spend up on Amazon and the likes. I hadn’t a clue if any of it would work but it made me feel good, like we were doing something and not just relying on her meds. It also meant that after lord knows how long, I. WAS. SHOPPING!
So what did I buy for our little refluxer? Well I’ll tell you…
Yep. My baby slept in a hammock. I can’t tell you how much I loved this bad boy and how much it changed things for us. I was a tad dubious to start with but once we put her in it, she looked so adorable and peaceful that I fell immediately in love. It stood next to my side of our bed and if she stirred in the night, I gently rocked it to send her back to sleep. She definitely slept more in this and it did the perfect job of keeping her upright enough to ease her Reflux.
I was looking for something that would play music and make pretty patterns on the ceiling to use as a ‘sleepy-time’ cue and this little beauty worked a treat. I used it until the she was around 18 months old and she loved it. (The lullabies sent me to sleep too)
The bouncer we used at the hospital made her look much less helpless and more alert so one of these was top of my list. We went for this one because it looked cosy, it vibrated and I liked the little lion thingy hanging from it. (My husband looks like a lion. One of his nicknames is Simba.)
Now this was what I’d call a PPP (Panicked Parent Purchase). It was the closest thing we could find to what we’d been used to relying on in hospital. It’s basically a clip that you pop on to baby’s nappy to monitor their heartbeat and if anything irregular occurs, it alarms. We used it once. As she was sleeping next to me and I had a camera monitor that I’d stare at in between sitting up and checking on her every 15 minutes, it felt a tad overkill. The idea behind the purchase was sound but the reality was that I wasn’t going to sleep much anyways so it was a bit of a waste of money for us.
Confession – I didn’t buy these on my little shopping spree. We bought them when we were pregnant as Simba (I’ll stop now!) wanted a whizzy one. I remember saying something like “we don’t need one with a camera on it. It’s over the top…”. Haaaa hhaaaaaa. Can you imagine me WITHOUT a camera on it? Even now at 23 months old, I’d be camped outside her room in case she farted and needed my help. These my friends, were a life saver and I still stroke the monitor from time to time in true appreciation of it’s ongoing support.