Caring for Clara

It was inevitable: caring for a newborn was always going to be exciting, stressful, and completely overwhelming.

Trying to find a routine that leaves enough time to express, nappy change, administer antibiotics, feed, AND remember to go to the loo yourself in between cuddles, let alone visitors, is a struggle for most parents I’m sure. Forget that hot cup of tea right now! Cold tea is a thing anyway, sold by Liptons with peach flavouring.

Got a vision in mind of looking after a newborn now? Time to add in the medical side to Clara that needs taking care of.

First and foremost is the critically important Long Line pipe in the main vein in her right leg. The external part of the pipe is just 2mm thick but it has additional heavy weighted pipes attached to the other end of it. These connect Clara to three pump machines beside her bed that administer her liquid fats and nutrition. This Long Line can occlude – the machine alarms loudly when there’s a blockage of some sort and her essential liquid can’t pass through. Every time it’s been the position of that tiny 2mm wire has twisted under the weight of the heavier pipes that connect to it. The line is occluding increasingly more and more now. Everytime she moves, the pipe moves. Everytime we lift her for a cuddle, we are putting pressure on the pipe. The more Clara kicks, the less the line will survive. It’s extremely important this long line lasts at least another few weeks – you only get one chance in a main vein and after this she’s only got one other leg, and both arms left before the pipe needs to go in via her chest.

Now, add to your vision, a 5mm wide tube coming out of her jejunum (part of the small intestine which sits high up near the stomach). This is Clara’s jejunostomy tube which connects to a bag that collects all of her tummy waste. I empty this bag every few hours and the output is measured. If she loses more than 20ml per kilo per day they add replacement fluids via her Long Line to ensure she stays hydrated and fed. If the bag is still empty after a couple hours then there’s most likely a blockage. This requires a nurse to flush the tube by pushing 5ml of sterile water up her jejunostomy tube and into her bowel. The tube literally comes straight out of a hole in her tummy – it’s very important this is monitored for any external leakage as the stomach waste is very acidic and will damage her skin if left unclean.

Clara has bloods taken often, at least once or twice a day, to check her blood sugar levels and fluid nutrition balance. She detests someone holding her foot more than the heel prick and squeeze itself. That leads to angry leg kicking and therefore repeated Long Line straining.

Clara doesn’t have a spleen which means her body will struggle to fight infection. She’s at higher risk anyway with all of these plastic pipes inside of her connecting to the outside world. It means hand washing and hygiene is incredibly important. I’m a pro at quickly popping on sterile gloves to put barrier cream around her wounds, or when emptying her jejunostomy bag. Our hands have been cracked, dry, and at times bleeding, from so much hand washing. I’m sure we’ll toughen up soon! Plus, finally I’ll start working my way through the 50 hand creams I’ve collected over Christmas the last ten years. We’ve all got at least one Bayliss & Harding gift set lurking in a cupboard somewhere, right?

It’s amazing to think this has become our new way of life so naturally. I’m the girl who left school with a B in Biology GCSE, but the best thing I remember is that you can extract water from a potato to do with something called Osmosis. Don’t ask me why, or how, I just liked the word. I’m much more at home in the library.

All of the above makes us love Clara so much more. She’s taught us more about love, science, and the importance of life than any textbook could teach. Having a baby is life changing for anyone, but Clara has transformed mine in a way I didn’t know possible.

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