There is an odd ‘time warp’ around a neo-natal intensive care unit. There is no distinction between day and night, hours just seem to disappear – the only indication of their passing the nurses bringing in the next set of meds, the next set of obs or being asked if you want to do ‘cares’. In my case though, it was expressing. ‘Ouch, my boobs hurt. Need to express. Must have been about 3 hours that have passed.’ The flourescent lighting and lack of windows mean that there are no shadows or other ambient indications that time is passing either. Because of this, it would be totally unrealistic for me to even guess at specific times for what went on in a day so I’m going to write a generalised list of what happened in order:
Left SSNAP accomodation, this I do know would have been around 8am as we weren’t allowed in at staff changeover which was at 7.30am so there was no point in getting there earlier.
I learned quite quickly to go and get us two cups of tea and steralize the expressing kit before going into ITU. HDU (High Dependancy Unit) was where the kitchen and sterilisers were – this was fondly known by all the ITU residents as HDU – Hostage Detainment Unit because getting in and out again could take over an hour… But mostly, on entering ITU you entered that weird time zone and would find something to occupy yourself with for hours before you realised you’d had no tea and were desperate for the toilet!
Going back into ITU, it was a case of scrub up to the elbows and let the receptionist know what bay you were aiming for so they could check there was no drama with your baby, before you walked in on it and panicked. While at first I thought this was odd and unecessary, after seeing your baby go blue, de sat, brady… etc… it is not something you want to walk in ever, let alone after you’ve been nicely tucked up in bed for 8 hours. Guilt is a massive part of life in NICU.
For me, the next thing was always to go in, pull up a chair, hold Dominics hand and sing to him for a bit. Regardless of whether it was doctors rounds or not. In my world, James could listen to medical bit (after week 1 it was all the same), my focus was on letting Dominic know that mummy was there. I always sang the same 2 songs first. I like to think he knew it was me.
Doctors rounds could sometimes be intimidating – they were a teaching exercise as much as an evaluation and plan for Dominic, which meant there could be 13 people all standing round the bay at once and they were all new… This means that you re-live every moment since birth every single day. Somedays it was good because I understood, other days it was just wearing.
Cares. Now this is an interesting experience. I loved doing cares – changing Dominic’s nappy, quick bed bath, helping hold him so they could change his nest… It was being able to do those normal ‘mummy’ things that all other new parents take for granted. Of course, these were all done under strict nurse supervision as the amount of wires, tubes, probes, long line and surgical injuries mean that changing a nappy is closer to a military operation than anything else. Especially trying to do it with your hands through two holes in a plastic box, and in Dominic’s case – a double nappy origami artwork to cover his urostomy. The first time I was allowed to do cares I was terrified of breaking him or messing up his wires and tubes, after a week though you start getting ‘wire privileges’ the nurses begin to let you take off and put back wires yourself. I am now a qualified ECG lead sticker-on and a sats probe replacer. (Weirdly this all still helps as when the nurses struggle to get readings when we are admitted these days – I can usually make the equipment work).
Missing lunch. A normal part of the day. This is not because you are run off your feet, if anything it is the contrary. Lunchtime is just an illusion in NICU – it is for people that are still aware of the passing of time. It’s amazing how long you can survive on just a cup of tea when you don’t know that’s what you are doing.
Expressing was a major part of my time in the ward. I used to joke about it then, but when we were discharged it became clear just how much milk I’d managed to produce… I really could have fed the entire NICU. I still have 27 bottles to collect from JR and we bought home over 100 frozen bottles on departure!
Sterilsing, back to the Hostage Detainment Unit to lose another hour over a 10 minute job. I began to appreciate my time away from Dom making tea and waiting for the steriliser to go ping – for everything you actively do while sitting next to the incubator, mostly you just sit still staring at your baby. Vibrating from high flow in an attempt to re-inflate a lung… being away from the bedside did give me an opportunity to be me again, and socialise with the other parents doing exactly the same thing.
The Daily Scare. The beeping machines don’t always tell the truth. When you arrive, every alarm makes you jump and completely freak out that your baby is dying. By day 3, you remember to look at your baby, see he is breathing and not blue, and calmly reattach whatever probe has fallen off or not reading my properly.
As babies don’t move very much when ventilated in NICU they accumulate vast amounts of secretions in their lungs which need manually sucking out by the nurse every so often. Unfortunately, it is one of those vicious circle things – the more you clear it, the more is produced so you have to find a balance. It’s a horrible noise to listen to… it’s a constant reminder that your baby is really very poorly.
Watching House. I got most of the way through to season 7. There are over 20 episodes in a season. This gives you some idea of how much House I actually watched / listened to…
Leaving is hard. It never got easier, but it really was the best thing to do at night. It is impossible to be at the bedside 24/7 – you start going completely crazy with lack of sleep AND you don’t heal from labour AND that all affects your milk supply so then you have even more things to feel guilty about. Go home and sleep and do it all again then next day. Time works again when you leave, so you actually get hungry and eat… so you start to heal and feel better… so the prospect of doing it all again the next day doesn’t seem so bad.