My sister, loving my Betty…..

James was introduced to Ian, a good friend of mums, he was also there the night we arrived in Southampton.  Ian is a technician on the NICU and knows everything there is to know   about all the equipment.  Ian also helped James with parking tickets and general day to day things that we needed to know but we wouldn’t had it not been for Ian.  He was also just a friendly face.  He explained the breathing machines to James one day and that was really helpful.  It was just nice to have familiar faces around the place and we were lucky to have that.

When I first went to the house (that’s what I’ll refer to the Ronald McDonald house as throughout this blog) I was in pieces, emotionally and physically.  James carried all the heavy stuff in, the breast pump which became my loyal companion and the suitcases.  We were there for the long haul, we knew that.  The House was like a premier inn.  Clean and spacious.  But the first time I went there I kept my head down.  My body was aching and my head was gone.  I got in the lift, pressed the button James had told me to and when the doors opened there was a big Fijian man standing there.  He must have asked me where I was going and he took the bags I had and placed them in our room.  I had no idea who he was and he me.  But that was the start of the House.  Every single adult in the House had a seriously sick child, either in PAH or in Southampton general hospital.  We were all going through hell.  There wasn’t lots of chatter but we talked, smiled, made our meals, drank our coffee, and shared milk/bread/cereal.  It was like an adult student accommodation.  We all kept it clean and helped each other wherever we could.  It was a sanctuary in many ways. 

I asked James to bring me make up.  I needed to have a routine, I needed a little control.  I could get up and put my make up on.  At least that was a slice of normality.

Our routine became slick.  I would express around 3am, call the ward at 4am, shuffle around, do nothing, text Kim in the hope she was on nights and I remember texting her so she must have been on nights (Kim does not communicate at night otherwise!  She sleeps more than bears do in the winter) wake James up and then head to the NICU to see Betty.  The walk from the House over to where Betty was being treated was gloomy at best.  Once we left the House, there was a very short walk, through some higgledy piggaldy corridors and then into what I refer to as the tunnel. 

It’s a long corridor, with dim lighting, that stretches from one side of SGH to the other.  It’s like the M27 in rush hour.  People are on their way to work mostly, they’re all walking at pace, fast, and how I like to walk under normal circumstances.  But in the condition I was in, I was holding people up and I’m sure they didn’t notice me as they pushed passed.  But I was there, hobbling along that busy corridor, day after day.  You can genuinely see the light at the end of that tunnel.  That’s when I would increase my meagre pace.  I was getting closer to my little warrior.  I wanted to be there before the night shift went home so I could catch the handover, even though I had spoken to Bettys nurse at 4am.  We would see the night staff, say hello to our little angel and then go for a coffee.  We were lucky to have a team of excellent nurses in the intensive care unit.  They’re all band 6 or 7 which means they are experienced and have undergone special training to work in the intensive care area.  Betty had a whole nurse all to herself every day in the ICU.  This enabled me to feel comfortable to leave Betty so that I could eat, express, sleep.  Nonetheless it still took a good five minutes or more for me to say goodbye to Betty, to tell her how much I loved her, that I was so proud of her, that she was a strong little girl and she was my little sausage (sausage became my nickname for Betty!).  James would wait patiently for me to complete this ritual before leaving the room.  I did this because I feared that she would die when I left and I wanted her to know how much I loved her just in case this happened. 

Mum was there a lot and my sister Lisa came as much as she could, but she was big and waddling and she had a long drive to get the PAH.  I remember feeling surprised that she was visiting so much, considering how shit she was feeling herself (remember she was also pregnant and was due June 26th).  Mum joked that she was in the right place should she go into labour!  I remember thinking, oh please do, then you’ll have to stay here with me, however selfish that sounds, I wanted my big sister.  I never have before, not really and not like that.  She was an extension of my mum so having her there made me feel safe, protected in some way.  Even though Lisa is short, she is my big sister and regardless of any squabbles, she would look after me.  Her eldest daughter is like me and I have always found it funny that my sister, who has always been good, well behaved and probably my parents favourite, had a daughter with as much sass and attitude as me! Now in chapter two I spoke about my sister being pregnant at the same time as me and how that made me feel at the time.  Well, as the pregnancies all progressed, it turned out to be a blessing.  Comparing notes with two other people who were pretty much as pregnant as me was a great help and I started to look to the future.  Three cousins all the same age growing up together was a good thing and it was exciting.  I no longer saw the other pregnancies as a threat to my baby and I embraced them.  My sister was the guru, she’d done it twice before so we tended to trust her opinions and advice. 

When Lisa visited for the first time, she looked at Betty as if she was a normal healthy baby.  I can remember the look in her eyes, she looked proud and happy.  She didn’t look sad or scared and that was exactly what I needed from visitors.  I told mum to tell family that visited that I did not want to see them cry.  They would have to hold their shit together until they left because I couldn’t handle my own emotions let alone other peoples.  The other part of this was that Betty was my little baby girl.  To me she was perfect.  So the thought of people looking at her and crying would have been really difficult for me to handle.  For this reason I put a ban on all visitors except immediate family.  Fluff was included in immediate family because she is the person I am closest to in the world.  Rachel came too because when Fluff told her my news, she was desperate to see me and to show me the love that I needed.  Sadly, my other best friend Kim is a big cry baby!  I love her dearly but James reminded me that she would cry which would make me cry and I was doing more than my fair share of that as it was, so I kept my NICU circle very tight.

The first week was a blur, and it was after this first week that I was advised to get a little diary to write everything down in.

James didn’t need a diary.  He was composed and together as usual.  I was shown the expressing room, and was given my kit which contained two funnels, caps and tubes to attach to the expressing machine and bottles.  The expressing room became a place I would go to just to take a breath.  Sometimes I would go there to sleep, although that isn’t what it’s there for!  It was a place where many conversations took place.  Strangers sharing their stories and asking about each other’s babies.  I’m not always good with new people so it took me a while to get the hang of this.  We had met a couple whose baby was in the ICU with Betty.  They were lovely, calm and kind. 

Their little warrior was born the day after Betty and she was 26 weeks at birth.  This couple also stayed at the House and we would often see the dad in the kitchen at the House, sterilising the expressing kit.  That was clearly a job that was delegated to all the men, James was chief steriliser in our room too!  In the interest of privacy I will refer to this couple as A (mum) and B (dad).  They had another child, I think she was about 4 years old and when she visited she would put on a little doctors uniform and quietly play while A and B split their attention between their little fighter and the 4 year old.  They were decent people, I think through my job I have a sharp sense of good and bad people and I make my mind up quickly, these two were good and I took comfort from the little conversations we had.  At the weekend the House often had some activities for the families so we would see the little girl with her face painted from time to time.  Although our babies had very different problems, they were there, next to each other, fighting.  And it meant that the four of us (parents) were connected in our new world. 

I would sit next to Betty’s incubator (which was an open one) and express there. A would do the same.  Like most women I imagine, I no longer cared if people saw my boobs.  They were just things that produced milk, they were no longer a secret part of my body.  The thing about expressing when your baby is sick, is it is all you can do.  So you do it.  I was starting to nail it, I was producing about 200ml per boob every 2-3 hours and the nurses were always really complimentary of our efforts.  I would label the bottles, date and time and pop them in the fridge in the ICU.  The milk was gathered and taken to the unit milk kitchen, another department on the unit that is worth its weight in gold. 

Betty was fully ventilated at the beginning so all I could do was a little mouth care with my breast milk.  I would get a cotton bud, soak it in my milk and wipe around her mouth carefully.  This was as intimate as our contact could be.  But I felt a sense of delight that she was getting at least something good from me.  The other contact we had was a containment hold which is simply placing one hand on her head and one on her feet, apparently it makes them feel secure and it feels ever so slightly like a cuddle.  Not the first cuddle I had hoped for, but a cuddle none the less.  There were different types of nurses and I’ll talk about them more in a separate chapter, but one in particular explained a lot to me about the contact I could have with Betty and what it all meant.  She explained it as being very primal.  She spoke about babies being able to hear us and recognise our voices, she advised against stroking and suggested various ways in which I could feel closer to my little baby girl.  For me, this closeness was something I was craving.  I wanted to be connected in whatever way that I could be and so I asked James if we could give her my surname.  James agreed without hesitation, he understood why I needed Betty to be a Woolridge and so she was given my name and it did help me feel closer to her and it still does.