I feel at this point I should introduce you all properly to the people that played an enormous role in this journey of ours.  When this all happened I didn’t know what was ahead of us so I just shut down.  I removed all social media from my phone and I selected specific people to do all of my communication.  Now obviously there was mum, and she had strict instructions not to disclose ANY details to anyone, just to say that my baby was poorly and having treatment.  I know this would have been hard for mum because she knew so much and she also knows a lot of people, all of whom were deeply concerned for all of us.  But I didn’t think about that, or care to be honest. 

The others were: Fluff; Kim; Boss (my boss whose name I won’t use but will refer to as Boss!).  That was enough to cover all the people I know.  I remember speaking to my cousin Dan over text.  He lives in Los Angeles and is a physicist, so I could tell him details about Betty’s condition and he would be able to read a little and just get it, without any drawn out conversations about what if’s etc.  As a scientist, I just felt as though he would take the facts and just process them but would talk to me normally, no sympathy of sad eyes (because I couldn’t see him!).  I also felt I owed it to him to keep him in the loop as he is so far away, he likely feels somewhat helpless in such situations. 

I think I text my boss to give her an overview.  I called her from Southampton and it may have been a weekend as she was working a shift and she left the main office so that she could speak privately to me.  I hadn’t told any of my colleagues anything and I had started to get messages of ‘good luck, not long to go now…’ and I didn’t know how to respond.  So I didn’t.  I blocked the numbers of anyone that contacted me.  I waited a while, although I don’t know how long, before I told Boss that she could let the team know that I had had my baby, her name, that she was poorly and that I did not want anyone to contact me. 

I learned some months after that an email had been sent to the team to give them this information.  The news spread and an old friend that I went to uni with contacted me.  She asked if I was ok.  I replied to her, she’s an old friend and she would have been worried, I didn’t want that.  But she didn’t hassle me, which was perfect.

I actually also managed to complete my NMC revalidation whilst living in Southampton and Betty being treated!  I knew I was due to revalidate in September 2018 and the NMC are very unforgiving if you fail to do so.  The last thing I needed was to be struck off (basically fired from nursing forever!) so I completed the online form from my phone and I called them to make sure I had completed it properly.  Luckily my boss and I had completed all of the paperwork early in the year, thank god.

So then there was Kim.  Kim is connected to all of my forensic friends, she’s the cry baby I spoke about earlier in the blog, but she was the chosen one.  My forensic friends are a group of girls that I met and worked with in forensic psychiatry which sounds a lot more interesting than it actually is.  We talk everyday on our group chat and so I carried on, a little less, but I wanted to maintain a normal persona.  The reason for this was that Katy, one of the girls, was due to take her nurse prescribing exam on the Thursday of that week and I have been there and done that exam.  Any distraction from receptors, ethical considerations, dopamine pathways, half-life numeracy, adverse drug reactions……the list goes on, would potentially really fuck things up for Katy.  I did not want my situation to make her mind be anywhere other than in that exam, passing it, so that she could start to get her life back!  Anyone that has completed the V300 nurse prescribing course will know what I’m talking about.  It is hell!  But it is so worth it once completed and Katy is on the master’s pathway, she needed to pass this module.  So, I called Kim. 

I remember telling her not to react.  At all.  Because I knew if I didn’t give her very clear instructions, she would cry and insist on coming to see us.  So I told her I had a daughter.  I told her she was very sick I told her she had hydrops.  And actually, had I known more at the time, I would not have shared this with her.  But I did.  Kim said ‘ok’ a few times and then we ended the call.  I have learned since that she kept schtum until after Katy’s exam.  And then she called Katy, told her, and then they shared telling the others. 

Fluff came first, naturally, she’s the identical twin I never had!  Even though we are the most different people you could ever meet!  From our appearance to our whole outlook on life, we are polar opposites!  But I basically harass her into staying my best friend, so it’s her tough luck! I text Fluff the day Betty was born.  I don’t remember the text but she has kept it for me for this part of the blog.  And so I will share that message with you all:

“So……weird day.  Keep between you and Paul as friends and most family not aware.  Emergency C section this morning.

We have a daughter.  She is not very well and I don’t wanna go into details on text as it’s upsetting and stressful etc.  I’ll call you later tho.

She was born at 11:06 today and taken straight to neonatal ICU.  She is currently not breathing for herself and the poor little thing is swollen as fuck.

I feel weird.  I had a baby and she was taken away immediately.  Me and James just been to see her and she has improved.  We just have to hope she keeps fighting.

I’ll call you later when things are more settled here.  Currently being tested and injected to fuck as they wanna know what happened to baby/why it happened.

James has been amazing but both of us are weeping messes!”

She read that to me a couple of months after it was sent and naturally I cried.  The bit that stands out most is that I say she was taken away from me.  And that haunts me constantly. 

Fluff was put in charge of logistics.  She allowed me to have all my amazon orders delivered to her house and then she would deliver them to me at the Southampton NICU.  When we had to leave the unit because another baby was having surgery (they operate on the babies in the NICU.  I think so that they don’t have to move them and risk destabilising them) I went to Fluff’s house because she lives in Southampton and I couldn’t bear to be far away from the hospital.  Fluff never hugged me, she knows me too well.  She came to visit, she washed Betty’s muslins and when she could wear clothes, she washed those too.  She was head of logistics and anything practical and she did a sterling job!

My Uncle John is someone that I am very close to, I lived with him for 5 years when I moved to Portsmouth and we are good friends.  It was strange not talking to him, but I could not face explaining anything to anyone and that included people I am close to.  My uncle visited and like my sister and dad, he looked at Betty like she was a normal healthy baby.  He didn’t even seem to notice the tubes and wires.  We went for a coffee after his visit and I felt like he didn’t understand how sick Betty was.  But it wasn’t that at all, it was just that he genuinely thought she would be absolutely fine. 

These people made things easier for me.  I could text or call, demand and be as needy as I liked.  It’s funny in a way that Fluff is the soft one of the two of us.  She is nice to everyone, doesn’t judge, would loan out hundreds of pounds and would never dream of asking for it back (this example is based on fact!  Although it wasn’t me, I always pay her back).  We have different views on most things except musicals.  We both LOVE musical theatre and were in a performing arts company when we were younger.  Fluff can sing, I can’t.  I can dance, Fluff can’t!  I think our careers have influenced us, having worked in forensic and adult mental health, I have seen people at their worst, I have seen what people can do to each other.  Fluff works for a big (very big) business and she works with nice people.  Don’t get me wrong, her job is stressful and hard going, but just in a very different way to mine.  I would spend a Sunday morning rolling around the floor trying to restrain a large man in order to medicate him to help him feel better and not want to kill us all.  Fluff will have to do a presentation to lots of people all around the world, being judged on her every move.  So we both know stress, but it just presents very differently.  ut when we are together it feels like the rest of me is there.  It probably sounds strange, and me and Fluff never say we love each other, but we do love each other.  And without her I am not me.  If I am in a foul mood because James farted, she will just laugh at me.  If she thinks I am wrong, she will tell me.  She knows I will always do what I want to do, what I feel is right regardless of her views.  But I always want her opinion, because it matters to me and she matters to me.  In every birthday card I have ever received she has drawn a penis (Cousin Dan also does this!)!  Fluff is just the perfect fit for me and even though I am a constant burden to her, I know she can’t live without me……!  I am the needy one, which is odd because I am the hard one.  I am comfortable with confrontation if it’s necessary but Fluff cringes at the thought of it and will do everything in her power not to offend.  Me on the other hand, I say what I see.  And being a mental health nurse, I can’t help myself from diagnosing people where I see a clear issue which Fluff finds annoying!  Probably because I have never diagnosed her, because she doesn’t need it (yet!).