If there is one thing I will be remembered for from our time in the NICU's, it will be for being an outwardly anxious jabbering wreck..
Far from subtle, my immodest approach to managing my anxiety never failed to set a challenge to those trying to reassure.
The problem I had was, I had a really hard time believing that the 'good' days really were good days and it wasn't until the bad days that I realised quite how good the good days were!
For example,say Smidge was having a good day then the doctors comments would be cautiously positive.
However, I'd still struggle to accept that they were unable to commit to anything more, and would always be angling for a brighter prognosis.
The conversation would always return to how they felt she was doing at the current time and would always end with me asking if they were sure about what they had just said and even worse still, if they were sure that they were sure!!
From their experiences of me,they would never know that sometimes they actually did get it right. Sometimes I went home and rested a little easier because of the conversations we'd had.
But just what does help to build the trust between a Doctor and a Parent in the NICU setting? Here's what helped me.
Overcoming class divisions
Breaking down the social class barrier is one of the first but most important steps a Doctor can take. It's no secret that these consultants types are clever, or that they spend immense amounts of their time in training and education. Thus it impressed me greatly when they would introduce themselves using first name terms. The temporary sacrifice of the title 'Mister' or 'Doctor' was a small but significant gesture and one that promoted mutual respect and understanding.
One Doctor I met wore scrubs to work instead of her own clothes and looked more like a nurse than a consultant but she never made an issue out of it or highlighted the differences.. Comfort over ego. It's the way to go in my opinion.
Equally though, I feel it's important for a doctor to retain a certain amount of
nerdiness.professionalism. One SHO spent fifteen minutes talking to me about fashion and although she made some good points and arguably her shoes did rock, it didn't raise my confidence in her as a Doctor.
Little and often to begin with
Despite have visited the ICU beforehand nothing could have prepared me for how ridiculously overwhelmed I felt in those first few visits. The equipment, monitors and staff all seemed to merge in to one big blurry confusion.
So for me, keeping medical information to a minimum to begin with was a good call, it gave me a chance to focus on the baby, recover from the shock and puke up from the morphine.
I could really write a whole post on this singular issue alone but in short, most Doctors will give parental involvement a whirl but some are more skilled at it than others.
A good example of involving the parent is by making sure they are told what the next steps are with regard to the treatment plan,what the potential difficulties are and the possible ways in which these may be overcome (before anything actually happens)
This approach helped to prepare me, gave me something rational to go home and think about and enabled me to join in on monitoring my babies progress. The result? I felt happier for understanding when Smidge had taken a step forward and less disappointed if she took a step backwards.
A bad example of involving the parent is by saying something like 'So Mum, We are going to prescribe Phosphate to manage the conjugated Jaundice, any questions?' Er yeah... congregated what?
A conversation about conversations
When Smidge was in intensive care I was permanently on edge, my mind was always racing and I used to worry that if something was going wrong I'd be the last to know. One day a Doctor took me to one side and she said this:
'I know it's hard for you and you are going to be worried, this is a worrying situation. At the moment however I'm not worried. So how about this, If I am worried, then I will find you and I'll tell you and you can worry too. If I tell you I'm not worried then you can try to relax'
Some weeks later she came to me and said:
'Okay, I want you to know that I am a little bit worried and we are going to transfer her so she can be kept a close eye on by the surgeons . I think it is likely that she will need an operation at some point' With that she put a her hand on my shoulder and said 'If you can think of any questions,any questions at all just come and find me'
I found it much easier to put my faith in her after that.
Drawing a line
Being anxious as I was, there was no end to the questions that invaded my mind. Looking back I don’t think I was doing myself any favours going over and over the same old ground, trying to understand things I could never truly understand as I just didn’t have the knowledge and the background.
Once, just before we were transferred for the fifth time, I was at the end of my tether, my anxiety had reached an all time high and I felt angry,frustrated and tired. After half an hour of being in the firing line the consultant put his hand on my shoulder, looked in to my eyes and said 'Leanna, I'm going to leave you now. I think you need to get some rest. After that if you have any more questions then please get back to me'
After my waters broke I was a touch on the panicky side. I found it really hard listening to the doctors talk about what was going to happen next.So I decided to bring on board a paper bag, mainly as a deterrent but also because breathing in to it really helped me to manage my stress levels which were sky high.
I have a little smile to myself when I remember the paediatric consultant coming in to see me to discuss survival rates.
On leaving he turned to me and said, 'I won by the way'
'Won what?' I said.
'Oh..I had a bet with the previous consultant that I could make you breathe in to that paper bag less times than he could!'