Where you get things both out of AND off your chest!
Arlo was truly showing off at the moment. It was commented that Arlo was ‘ripping up the rulebook’ it was even mentioned that he ‘hadn’t done his homework and read the rulebook’ as he seemed to be making things up as he went along! When the doctors came to him on their rounds every morning their plan for the day usually started with a shrug and a pregnant pause while they scratched their heads! Arlo had them running round in circles like headless chickens while he made them wait to decide how he was going to play things today and they knew it. He was keeping them dangling by a thread, there was no guessing how he would react, and if you dared to, you were usually proved wrong. Arlo was truly unique and our story was eventful and special to us.
Everyone in neonatal has their own story. Everyone has their own rollercoaster ride to share. And no two are the same.
Most of these stories were expressed in the expressing room.
Neonatal is a constant conveyor-belt, there are families arriving and leaving all the time. New faces mix with the experienced neonatal family. This shift is most apparent in the expressing room.
Let me explain a little about the expressing room…
Effectively, it’s a milking parlour. But instead of rows and rows of attachments in a cattle shed, like you might be thinking, there are only a few seats in a small room with expressing machines next to them. Instead of being herded in like cows and being attached to the machines to suction the milk by a farmer, you come at your own will! You sit down and use your own, sterile, cups to hook yourself up to the machines, and screw the bottles underneath to catch the milk.
But effectively you are milked by a machine, like a cow.
This is a daunting place to go when you’re a ‘newbie.’ A few women sat around, chatting away in the clinical environment that plays at making you feel comfortable in a situation that just isn’t comfortable.
The rhythmical whirr whirr of the pumps as they did their job, needing and suctioning.
You have to get your boobs out, in front of people. I bet even the exhibitionist breast-feeders, you know the ones. The ones who have to feed their baby with full-frontal boob display in the middle of a restaurant or a swimming pool (yes you heard me!) rather than choosing to meet the needs of their hungry baby discreetly, would have something to say about the level of exposure that goes on in that room, because it’s such an unnatural place to be. And to perfectly honest, this can be overwhelming to begin with. As a private person, getting my boobs out in public has never been on my ‘to do’ list. To start with I felt so uncomfortable, sitting in the corner fumbling with the pumps trying to keep myself as small as possible, which always resulted in things getting dropped on the floor or exposing myself further out of awkwardness, while others sat there looking at ease, flicking through phones, chatting occasionally. The thing is you don’t have to look, you just become aware of lots of boobs, boobs everywhere.
This little room in the heart of the neonatal unit seems terrifying to begin with, but very quickly it becomes part and parcel of life. It becomes the room where so many conversations happen. The expressing room is necessity if you’re feeding your baby. That precious liquid is so important, and so is keeping up your supply. It’s not the type of thing that can be done once a day when you get home, it needs to be done every 2-3 hours, day and night, or else you walk around with a couple of rock-solid, tingling, throbbing, leaking bowling balls stuck out in front of you. (Believe me, if it goes over that allotted time- you know. Oh, how you know!) And those boobs may look appealing and fruitful at that moment, but touch, squeeze or accidentally knock and you take your life in your hands! You’ll either get slap across the chops or if you dare to squeeze you’ll get the same result of squeezing the flower on a clown’s lapel!
Other places on the unit, such as the parent’s room are a choice, somewhere you go to grab a quick sandwich, or have a quick coffee, or a quick phone-call. Quick. These moments are sometimes rushed, so very little conversation happens and as much as the doctors and nurses tell you to take time for yourself, the only place you want to be is by your baby’s side.
So the milking parlour, as it was affectionately known, was the place where most conversations happened. Where I was ever-so kindly offered a lift to Asda, (or ‘The Asda’ if you’re scouse) and where the plans were made to take me there; where we offered advice to each-other on expressing tips; where we checked in on how everyone was doing, how their babies were doing that day/hour/minute; where we shared our own incredible, individual stories; where there was mostly laughter, and very little crying (thank goodness, because hugging could be a little awkward!).
No-one in neonatal has ended up there without a story to tell, and the expressing room is where they were expressed!
I remember a lady who had her little girl at 23 weeks; she told me how she laboured fast and unfolded her baby to reveal she had a daughter after she caught her!
A lady had realised she was in labour, and as she didn’t have family close that could drive her to the hospital she phoned an ambulance
in the middle of the night and there wasn’t any available. She then phoned a taxi, getting more and more anxious. Time went by and in agony she phoned back to see where it was. They responded saying they thought she was drunk because she was so distressed but they would send another one! She was only 32 weeks.
One of the lovely ladies I met and became very friendly with had a little one who was born at 24 weeks. He was doing so well in neonatal. Tragically, his sister who was born a year previous didn’t survive. So this made him even more precious.
There were two sets of twins in the unit too. One of the mum’s waters had broken while visiting family in Ireland. Her babies had been born there and were in the neonatal unit there. Once she was discharged they had to pay for hotels to sleep in so they could be near their babies. As soon as the opportunity came up and they were stable enough, they had been returned to Liverpool so they could grow and become strong enough to come home.
The other was sped by ambulance from 2 hours away to deliver her premature twins. She told us about how she had lost a little girl at a few months old to a rare, degenerative medical condition. So this time no chances were being taken and as soon as she showed signs of labour she was whisked to Liverpool where her twins were born.
The thing about twins is they have to be in separate nurseries. I don’t know how these mums did it, splitting their time between two of them. Riding the emotional rollercoaster with one was terrifying enough, never mind riding separate tracks at the same time!
Another mum had a very premature baby and was struggling to express for him, which she found really upsetting. She wanted to do everything she could for him because she had already lost a boy at 19 weeks. She was very upset when talking about him, but said her family don’t talk about him and in her words she said, “I can’t grieve because of religion.”
It was a bit of a blur, but I also remember one of the most premature babies Liverpool Women’s had ever cared for being born before I was there and still being on the unit. She was born before 23 weeks!
Her story really touched me. Her mum spoke very broken English so didn’t speak much, but always had the warmest smile on her face.
I thought about how far her little one had come. She had been on an invasive ventilator for 3 months, that’s a long time to be ventilated, but her little lungs were just not strong enough to come off it. After lunch one day, as I returned to the neonatal unit, I went to the lockers as usual to put in all my belongings and made sure I was ‘bare below the elbow’ to reduce the risk of infection. I smiled at this lady and she warmly smiled back. I went to carry on my way to nursery 7 when she called me back and asked me if I would help her. As I looked back I saw she was writing a card. She explained to me in her short phrases, carefully choosing each word, that yesterday, her daughter had come off the ventilator and had been put on CPAP (which uses puffs of air to make sure the lungs expand rather than being as invasive as the conventional ventilator). Then earlier that morning, the nurses had surprised her and her daughter had improved so much that they had put her onto nasal cannulas instead! What an amazing turn-around in less than 24 hours! She had asked for my help to write the card to the nurses in English. I read her card and understood it completely, first time. If I could read it then so could the nurses. She didn’t need me to tell her what to right in perfect English in my words. What she had written was heartfelt feelings in her own words and it was truly perfect in its own right.
A mother thanking these special nurses and doctors for the incredible work they do day in, day out.
There was also a lady I didn’t actually meet whilst in neonatal. Her son had passed 2 days before Arlo was born. He was in Arlo’s bed before him, I connected our two boys after I leant Rocco’s name. I remember his mum coming into the neonatal unit to drop off some goodies for the neonatal parents. I saw how Rocco growing his wings had affected everyone who knew him and his family, because they were part of the neonatal family and the ripples of Rocco’s death spread throughout the comrades.
I remember every single one of these ladies at some point having a terrifying scare, where something unexpected had happened and their baby had taken a turn for the worst or they were waiting on results of brain scans or to see if their baby’s bowel was functioning properly. Every. Single. One.
That’s one of the things that really got to me while in neonatal, and it’s terrible because people looking in from the outside think they are helping.
And it starts like this…
“I was talking to someone the other day and their friend’s baby was born at 24 weeks, weighing 1lb and their 6 foot 6 now! Massive rugby player, graduated with a 2:1 from Oxford University.”
Brilliant! So did Ethel’s nephew, Brian’s next door neighbour, Marion’s ex-boyfriend and Laura’s twins.
I’ll bet you that you have no idea what their poor parents went through for them to get there. You’ll have no idea about the expressing room chats, the breakdowns to complete strangers on those days when that rollercoaster is skating low to the ground, threatening to de-rail. You have no idea about how many times those poor parents were told their baby wouldn’t make it through the night. You have no idea the times their baby took a huge backwards step after celebrating the slightest millimetre forward. You’ll have no idea that they 6 foot 6 lad had to be resuscitated when his parents thought he was on the home straight, leaving them standing there while he was given the oxygen bag to boost his oxygen levels and a doctor gave him chest compressions. You’ll never know that he had to overcome 2 infections and a bowel operation, and that all 3 nearly cost him his life and his parents their baby.
But he’s 6 foot 6 now…
There is that assumption that modern medicine is a marvel, which it is. It’s assumed that if babies born early are just kept in an incubator till they’re big enough to go home. It’s not a miracle worker, neonatal is so unpredictable. Please don’t assume that every baby is coming home or even that it’s going to be an easy ride if they do. (Don’t get me started on the recent premature baby nappy advert.) Everyone I spoke to had been through so much.
Everyone had had ‘the talk.’ Usually more than once.
Our talk was coming up...
But one place you had to go, come rain or shine, was the expressing room. The place where you know everyone understands how you feel. The place you go to get everything off your chest.
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