This week wasn’t quite what we had planned. On the to-do list was pumpkin picking, play dates, and more.
Unfortunately, Monday didn’t start too well. We – and in the end it was all three of us – weren’t going to be going to any pumpkin patch anytime soon after all.
Clara usually sleeps through the night. But Monday night, Clara had four really loose dirty nappies between 3am and breakfast. So strange. After that she seemed fine, if a bit cuddlier and clingier than usual, she ate well and didn’t have a fever, so despite having had to cancel morning plans we decided to carry on with the day as otherwise intended.
Half an hour away from home, just two miles from said pumpkin patch, Clara randomly threw up everywhere in the car. And it was A LOT. It wasn’t stopping so I quickly pulled over onto the grass verge of a golf course entrance and raced around to get her out of the car seat and help her clear her mouth. I lifted her out of the car seat, resting her on my leg and she emptied her bowels all over me. We looked a right pair.
Getting hold of Clara’s Gastro nursing team for advice was (as usual) impossible, the doctors surgery had closed for lunch, where else could I turn for advice? Luckily, we were on our way to meet one of my best friends who has totally understood Clara medical journey from the get go. With a very special baby girl of her own, she’d understand my concerns beyond that of a regular parent. A quick phone call and we agreed A&E was the best place to be.
As always, paediatric A&E was brilliant. We were seen quickly, examined thoroughly, lots of questions asked, and Clara captured more hearts. Clara had one bout of diarrhoea there – a very good example, literally up her back and pure water. But she was tolerating feeds and lapped up some baked potato and beans. So we went home again, having been told to treat Clara with a very low threshold. If the diarrhoea continued, or she vomited again, we had to go back in and expect to be admitted.
We got home and Clara had her usual bottle. Followed by four immediate bouts of diarrhoea and another spectacular vomit. She was so covered, I had no option but to bath her before we could go anywhere. Having been a long term inpatient before, it luckily didn’t take me very long to throw together a few bags of essentials to get us through.
This time, back in A&E, we were admitted into a room and Clara had an NG tube fitted before she was administered rehydration fluids. We were then admitted onto a ward in the Children’s Hospital and there we stayed until Thursday. As you can see below, Clara felt quite at home:
Once everything had been set up, Clara slept well that night. She had no monitors attached or fluids running, our wonderful nurse Carol (a family favourite) would just check her occasionally using a portable heart rate machine and temperature probe.
When Carol works, you know you’re in safe hands. So usually I’d sleep well too, but I woke up at 1am and was desperate for it to be morning. I felt so sick, I didn’t even want to lie down. I managed to get back to sleep but I woke regularly. By 6am, the sickness had hit me too. I just about made it to the sink across the room.
Dean came up to the hospital as soon as he was up and about and took over caring for Clara whilst I napped when I could on the parent bed. It was a horrible feeling I could only liken to the time years ago I had (proper!) flu. Your bones hurt, your joints are painful, your muscles feel unmovable. Eating and drinking was off my menu.
Dean’s sister came and played with Clara in our isolation room so Dean could take me home and pack a bag for him to stay the night back at the hospital. I slept just over three hours with the heating on, a number of blankets, and so many layers of clothing. I woke up hot, but definitely felt like I’d sweated the worst of it out, and I hadn’t been sick since the morning. Then I got the call – Dean was ill too, and by the sound of it a lot worse than me. So after a quick shower, I drove to the hospital and we swapped places again.
It might sound strange but I was really looking forward to going back. I missed Clara and just felt like I needed to be there whilst we worked out what was going on. Obviously the worst runs through your mind – had her bowel just given up all together? Had I pushed her with foods too soon? What had gone wrong?
What had happened was Rotavirus. Basically a child’s version of nurovirus.
Rotavirus is a viral infection that can cause gastroenteritis. Gastroenteritis is an infection of the gut (intestines) which causes symptoms of being sick (vomiting) and diarrhoea. It usually also causes a fever. [Patient.info]
Rotavirus is a vaccination babies get but it’s not complete protection, sometimes it can just reduce the severity. For babies with compromised immune systems or intestinal problems it can be very serious and require hospitalisation. This is primarily down to the danger of dehydration – which can become life threatening to babies if not treated quickly. Obviously, in the majority of cases, it is easily managed with IV fluids.
As soon as I arrived it felt so right to be there again. Clara wanted a cuddle straight away and it wasn’t long before she fell asleep curled into me. I just felt so much love for her, even more than ever at that moment. Unfortunately, I had to put her back in her cot so she could be connected to IV fluids overnight (they’d put a cannula in her hand earlier that day). Without that, we probably would have stayed curled up all night.
I’ve actually lost count of how many times Clara was pricked for blood. Her poor feet are so bruised now and there are so many small scabs where she was lightly stabbed for blood. Blood sugar tests were done very regularly throughout our stay – it was so important to check she was stable as this can be so dangerous to babies. It was this that indicated Clara needed support fluid with added sugars and salts, and additional bicarbonate of soda fluid, overnight.
Blood gases were also done around three or four times. This involves taking a lot more blood, but still via a heel prick. Once the heel is pricked it invokes a lot massaging and pushing to get the required amount – and it’s clearly uncomfortable. Poor Clara! But again, it’s so important to check the wider picture and did show that Clara was out of sync. By now, we knew it was something viral because of the dark spotted rash that had covered Clara’s legs and some of her arms.
Wednesday was a much better day for Clara. No watery nappies, she hadn’t vomited since Monday, she was just so much happier. She was attached to fluids until 10am but that didn’t stop us playing and moving around the room – having spent six months on TPN, some of which for 24 hours a day, a simple rehydration fluid into a cannula wasn’t going to scare me!
Clara was back on oral feeds from lunchtime Wednesday – and we all know how happy Clara is around food! A jar of Orange and Mango fruit purée was demolished and it wasn’t long before the fish pie and vegetables disappeared either.
We were trialling Clara on a hydrolysed formula without lactose to give her gut as much of a rest as possible. She wasn’t impressed with it, but drank it slowly, pushing it away quite a bit but always accepting it when it was given back to her.
All was going well until 11:30pm. We’d seen the shift change through and caught up with two more lovely nurses, both called Amy, who we’d definitely missed seeing so often. (Honestly it was like seeing long lost friends). Clara was struggling to sleep, clearly fighting it, but I put it down to the excitement of seeing familiar faces again.
And then, after some gentle rocking to sleep, Clara spectacularly covered me in vomit. It smelt purely of hydrolysed formula – an oat smell with the texture of cottage cheese. Amazingly, not a drop ended up on the floor. I seemed to have ended up being covered in the lot.
That was a sign of the night to come. Clara could not sleep after the vomit. In hindsight, we should have given her some rehydration fluid to drink through a bottle, but I didn’t suggest it at the time for fear she’d just vomit again. I was convinced inside (doesn’t feel fair to say gut feeling quite yet!) that it was the result of Clara eating a huge dinner, and two large bottles of new fluid. But it could be the virus. It could be something even worse brewing underneath (remember it was sickness that first gave away Clara was so poorly in the beginning).
It was the hardest night we’ve had for a very long time.
I was petrified Clara would be sick in the night when I was asleep. I needn’t have feared – not only was she not sick again, but neither of us slept at all!
When Clara doesn’t feel well, she wants to be held. This means no sitting down, no laying down, and certainly not putting her down on her own for any reason. When Clara doesn’t feel well but is also hungry – then she’s really upset.
At 4am I finally decided she was hungry and asked for some of her normal milk. Not the stuff that had made her sick. As I always say, as the parent you are your child’s biggest advocate – stand up for them, ask for them. You know them best. Milk wasn’t on the agenda overnight for Clara, but she needed it.
One of the biggest challenges of staying in hospital is not being in control of what you want and when. You need to ask for formula, so they can document it on her records or ask for doctor approval to feed, and it’s stored in a locked room. We only gave Clara 100ml to see how she tolerated – she drank it within seconds and was hysterical after because it had finished. At 6am, she had more and a banana.
Lots of tears were shed overnight, from Clara and I. Me, because I was scared what the vomiting could mean. Disappointed, I guessed it meant we’d be in hospital a lot longer despite her having had such a good day earlier on. I was heartbroken Clara was so upset and I couldn’t seem to help her. I was tired having not slept for more than 40 minutes, and because it was isolating being in a confined hospital room with a crying ill baby. At home, I could have made a cup of tea to at least get me through, we could have walked around the house, sat on the floor and played for distraction – you can’t do any of that in a room just a few metres long and wide. All you can do is walk in a circle – and that’s enough to send anyone mad, especially when you’re having to walk in a circle carrying a 7 kilo baby for six hours. It’s also an isolating experience being in a confined room for over 24 hours with very few people able to stay and chat for long. Because of what Clara had, we weren’t able to optimise use of the play specialists or go in the playroom, or even walk the corridors, like we used to before. Only on the final morning was I able to make an escape for some quick fresh air and vending machine coffee as Clara had been symptom free long enough.
Breakfast had made Clara somewhat happier but she was definitely subdued – exhausted. She’d play if I sat next to her, she’d keep a hand on me for reassurance.
But, incredibly, things soon began to look up.
Why is it our fears and anxieties always seem darker at night?
Clara’s first dirty nappy of the day was a thick consistency – it was looking like the vomit was just a dislike to the new formula after all. They said we could go home that day!
And then she had another bout of Diarrhea which just seemed to feel like ten steps back.
However, her next stool was thick again. Maybe things would be okay after all.
Clara’s Gastro consultant came in and said he’d be happy for us to care for Clara at home. He knew us well, knew we’d be sensible and if at all worried we’d bring her back in, and he agreed with us she’d be much happier in her usual stimulating home environment.
We were finally going home.
During our stay we’d had some really interesting conversations with a lovely dietician. Whilst the first formula we’d tried Clara on hadn’t worked, we agreed to try Clara on a second type of formula that was still hydrolysed but had a little tiny bit of lactose in for good taste, and was much higher in calories than normal baby milk. This formula was prescription only Aptamil Pepti.
It’s recommended that after rotavirus, children steer clear of dairy for a bit to allow their gut to rest. Many even develop a lactose intolerance for a few months after. With Clara however, we’d now stay dairy and lactose free.
It makes total sense – we knew cheese and yoghurt didn’t agree with Clara. We’d never given her cows milk yet, but as she appeared to tolerate normal Aptamil (made with cows milk) we assumed that she couldn’t be dairy intolerant. However, armed with this new knowledge and new formula, I felt ready to conquer weaning again.
It’s early days, but so far so good. Watching Clara drink her first bottle of Aptamil Pepti was hilarious. She was laid in my arms, one of her arms wrapped around my neck, her head thrown right back guzzling away from the bottle as if it was a night out in Ibiza. The nurses laughed at the sight.
I always think something good comes out of something bad. Whilst rotavirus has been very very hard to deal with in my little delicate gut baby, it’s brought a new approach to dairy and lactose management that I strongly feel will be a game changer. I’m actually excited to get on with new recipes for Clara.
Within hours we were home. After dinner and a relaxing bath, Clara slept for 12 hours straight. It was good to be back to normal.