A lot of the students Izzysbusy works with are keen to discuss experience of neonatal intensive care. Isaac lived NICU life for over 110 days initially, week after week with some time at Manchester and some at Preston. Isaac’s experience is the only one that matters really, not ours as parents or family but sometimes the insight seems useful so here goes.
3rd September 2010 about 5.45pm was when I landed on Mars, or NICU if you’d rather call it that. The twins were about an hour old and had been whisked away straight from being born. I remember saying to Lyns that I was going to go and see them and having absolutely no idea what awaited. It had been a thoroughly weird hour anyway, I have little memory other than that Lyns was in recovery and I was in a tight fitting set of surgical scrubs that would have given way had I exhaled or crouched. I remember going into NICU and it being like when Sam Tyler wakes up in the 1970’s in Life on Mars – I understood vaguely what things were, enough to function, but I was aware that I was floating through the conversations on the way along the corridors like I was drunk. It was just too much, far too much for my head to absorb “they’re in Room 5”, “there’s the parents room”, “wash your hands here, here and here” and so on. Thoroughly drunk without having touched a drop – that’s unless the alcohol based hand spray had pushed me over the limit!
Going into Room 5 I remember one thing initially – the heat. So, so hot in there because of the incubators and equipment. I made a mental note that followed for the next 6 weeks, T-Shirts only in there. I was then introduced to the nurse looking after Isaac and Ethan. I remember her first words ‘they are doing well’, that was genuinely all I really needed to hear, just that they were battling.
I went to Ethan first, not that he had a name at that stage but it was him! I remember thinking ; how small is he?! It was his arms and legs that got me, they were like little strands of spaghetti, just bone and skin. Not an ounce of flesh let alone muscle. Ethan already had that look in his eyes that he still has now ; that he’s willing to go along with what they were doing but not for one second longer than he needed to because he was ready. Ready to hit the world head on. He still has exactly that look – even when chilled out there’s a sparkle that is ready to lead to mischief at a moments notice and a strong will that is near impossible to anchor. So, skinny and scrawny but ready to go, just having a chill out for a few days then he’d be good to go – his look said as much.
I then went to Isaac, again he had no name at that stage. There was little discernable difference at that stage from Ethan, he was a tiny bit (8oz) bigger and a little less like a skinned rabbit. Ventilated and asleep are my first memories. I remember his nurse saying that he’d taken longer to stablise than Ethan but that that is often normal anyway. After a few rushed photo’s I went back to Lyns to show her. I remember Lyns being on a maternity ward and there being a nurse who conveyed (seen as it was by then about 8pm) that it was the end of visiting and sighing loudly and tidying chairs around me. I remember wanting to rip her head off but thinking that I was too tired to have an arguement. The day had drained us. Lyns was recovering from major surgery and I had had the single most emotionally charged day of my life. I left about 9pm having checked on the boys again and remember the long walk from the NICU to my car ; still a late summers night with sunshine but the most mixed emotions I remember ever feeling. I should be happy for having the boys, I should be concerned about Lyns, I should accept that the boys are’nt with their mum, I should just go home and chill out and enjoy being a dad. What I actually did was get in the car, put XFM on and then about a mile into the 26 mile run ‘Wires’ by Athlete came on and I cried. Cried like a baby. The line ‘first night of your life, lay there on your own’ got me, and still does now. It’s not natural that mum and boys should be 200 metres apart in a hospital. I knew how upset Lyns would be and how I was powerless and it hit me. I came home, and went to bed.
Day after I was there at 8.00am ready for visiting, and had a fantastic (if only sarcasm worked in text) breakfast in the RMCH canteen. I had an odd conversation with another dad in the area waiting for the maternity ward to open ; he had twins born the day before like me but pretty much at term and they’d said he could take them home on day 3 ; I remember thinking ‘lucky sod’ and him moaning about how much sleep he wouldnt get. I’d forgotten about that until just writing this! I saw the boys first thing and there was a bit more concern about Isaac’s lack of effort to get off ventilation. Meanwhile Ethan was now breathing alone and spoiling for a fight, if only he could find a challenger. The plan was to put Ethan in room 6, next door to 5 (amazingly) as he was doing well so it meant 2 boys in 2 rooms. They wouldnt be together again until late December about 14 weeks later. Anyway, it happened and so it was, the next however many days popping between rooms in NICU.
As i’ve said in other blogs, the boys followed different tracks ; Ethan to getting home after 2.5 weeks and Isaac remaining poorly. Often me at the side of one incubator and Lyns at another. I became pretty adept at doing ‘cares’ – mouth swabbing, nappy changing through incubator sides (like something off ‘Im a celebrity’ where your hand to eye coordination is impossible), giving NG feeds – basically doing what I could for the boys which was almost nothing.
In NICU we met some amazing nurses. The explanation I sometimes give is that when you go into any public sector team you’ll find people would want to do do things right, and people who want to do the right thing. Some people master both, but either on their own are useless. The people who come in work and are only concerned about doing things right and never taking a risk will rarely be the ones who make the biggest difference. The ones who want to do the right thing go the extra mile (a cliche in itself) but are not bothered about whether they appease management – they are in the job to do right by the people they work with. Isaac had several of these ; people who would risk annoying consultants by bringing them back to review Isaac, the sister at Preston who would bounce into the room singing and wearing a Christmas hat….people who make a difference.
You may think that the person wearing a christmas hat and singing is horrific and such bad nursing practice – i’d have to disagree. NICU is pure emotion. Undiluted heart on your sleeve anxiety and stress from walking in until you take a healthy baby home. Emotionally charged is a way to put it but it’s nowhere near strong enough. The little actions to lighten it , to make us laugh, to divert us from the anxiety and worry meant so much it’s amazing. As did Isaac having a male NICU nurse at Preston – from a dad’s point of view he was a hero, someone capable of helping my precious bundle but also who would have a blokes perspective. I wont name him but he was, and is, an amazing nurse. Just the ability for him to be laid back, to be doing for Isaac what I couldnt do meant so much and he clearly had a great relationship with Isaac.
The elephant in the room for NICU is always communication ; when it went well it kept us in the loop but when done badly it was devastating. From the SPR who abjectly said ‘the genetics doctor has been and seen him, they’ll write with an appointment’ (we didnt even know Isaac had been referred to genetics!) and the nurse who walked over on her first shift with Isaac and said ‘hasnt he got a small chin’ there were dozens of times where I thought ‘if only you’d thought about it for 10 seconds before you came over to us’ but they rarely had. There were others who took the time, explained, understood the importance of filtering what they thought and these people will stay with out memory for life.
115 days. That’s a long time for anyone, We can only hypothesise about the effect on Isaac of that time, most of it spent fighting for his life. From my perspective I know that in 3 months I changed so much. I used to think I had problems ; work, money, whatever. What September – December 2010 showed me is that the problems are nothing, genuinely. There is always something bigger for me, always will be. When work stress is piling up I can always say with confidence that i’ve handled worse and survived.
Overall NICU was a massively positive experience ; the support for both boys was amazing. The benefits were not in the policies and procedures of NICU though , they were in the people. Without sounding a bit ‘on my soapbox’ I just wanted to point out that the excellent qualitative outcomes of having good support are harder to evidence than the number of closed cases ; but from a patient experience perspective I know which matters most.
Well, diatribe over. I guess I may have given you some thoughts about NICU and what matters, hopefully. As always, thanks for reading.