NICU Staff

 

I want to start this post by sharing my immense personal gratitude for all NICU staff in St Mary's, but also my gratitude for all NICU staff globally. All the nurses, student nurses, consultants, doctors, surgeons, developmental physios, speech and language therapists, dieticians, administration staff, technical staff, all of you who touched our lives in St Mary's - thank you. Its not just your job when you work in NICU, its a vocation. 

I learned so much from so many of the nurses and support staff. They had to show us how to wash our hands properly to lessen the spread of infectious microbes. I can imagine this is a very difficult conversation to have with an adult sometimes. The fact that you have to manage the parents as well as the babies - all the NICU staff - is no small feat and something I doubt you get enough praise for. You showed me how to do Evelyn's cares - cleaning her in her incubator, changing her nappy, all around the various tubes and wires coming out of her. It was so frightening at times, especially changing her nappy and all the germs that could be present, when she had fresh wounds from surgery. Also, you never expect to have to feed your baby via a tube. The nurses showed us how to do so and left us to be in charge of feeding. The nurses' support in these times was invaluable, they were so kind and patient. 

The developmental physio taught me so much about how to look after Evelyn and her development. I put everything into practice and truly believe that all those methods meant that Evelyn was with us for as long as she was. After Evelyn passed a nurse shared with me that Evelyn had lived longer than any baby she'd ever met that was born with only one working lung. I owe a huge debt to the developmental physio for her knowledge, she knows who she is and is a special part of our little family. The main things she taught me was firstly, and most importantly, kangaroo care; skin on skin cuddles as often as possible and for as long as possible. Also, that a premature baby should only be touched by their parents and rarely by anyone else. The baby is not meant to be in the world yet and should not be exposed to too much stimulation until they are developmentally ready. Premature baby skin is very sensitive, the act of stroking it can be very painful to them. To calm your baby and let them know you are there you should just hold your hands on them. As much as possible premature babies should be kept in the position they would have been in in the womb, with legs and arms more compacted to their body. We ensured that Evelyn was always cocooned in her incubator. Since Evelyn passed we were able to fundraise enough money to purchase over 200 positional aids for St Mary's NICU. Having plenty of these aids means that the nurses are able to concentrate on other tasks rather than having to create towel cocoons. Knowing what I know from looking after Evelyn's development I feel very passionate about providing neonatal babies, and their families, with the best possible equipment to provide this developmental support.

Something to note is the impact of relationships with the staff in NICU. As a parent you are trusting the care of your child to people who you know are fantastic at their jobs, but who on a personal level you don't really know. This is another element of the rollercoaster journey of NICU. Some staff, particularly nurses, you get to know and really like. You come in in the morning and see that one of those nurses, the ones that feel like part of the family, are looking after your baby and you know its going to be a good day. Even more importantly when you get there in the evening, knowing that you aren't going to be there all night, you have to sleep, you come in after the shift has changed and its one of those nurses that you really like. Then you can sleep. Now consider there are hundreds of nurses who work in NICU. On a personal level you won't like all of them. Now imagine in every day life, you've had a baby and normally you don't leave them, or if you do you leave them with a trusted family member or friend. In NICU you don't have that option, you have to leave your tiny baby with whoever is assigned to look after them. Imagine not particularly knowing that person, or you've got to know them a little and don't really like them. Like all nurses in NICU they do an amazing job, but you just still don't feel comfortable leaving your baby with them. Its so hard. Those are the nights you just don't sleep well unfortunately. I don't say this to scare people, I am just explaining how I felt.

I want to finish this blog with a few stories. 

One morning I arrived at Evelyn's bedside to find her very distressed (not massively uncommon and something you get used to). However, this particular morning there was a distinct reason. When she had been lay in her cot, and her tubes had been arranged, her ears were folded over. That must be so uncomfortable. The nurse had looked after her medical needs all night, but this tiny discomfort had been overlooked. I was so distressed as I wasn't there to ensure her every need was attended to. Another occasion something went wrong luckily I was there to spot the issue. Whenever Evelyn had to have a blood transfusion I made sure I was there, so she knew mummy was by her side to support her through any discomfort. I noticed her arm steadily bruising and I believe the transfusion was leaking into her soft tissue. Sadly that nurse was so busy I don't think she'd have noticed for some time, however I was on hand to notice very quickly and the transfusion was stopped. It scares me to think how uncomfortable she'd have been had I not been there. It was very late at night and usually I would have been expected to go to bed by then.

In contrast, there are some beautiful stories of care given to Evelyn. One nurse was telling me how she had had Evelyn out on her knee early one morning. She'd been looking around the room from her knee and very inquisitive, smiling and making contented noises. It was such a lovely thing to be told, but I was also so very sad that I hadn't experienced that moment as her mummy. There was the poor nurse who had literally just come on her shift that had to help me clean up the most explosive poo. We laughed together and she made me feel less alone. There was the nurse who held me after a scare with Evelyn's condition. She put her arm around me and comforted me, making sure I was ok after the ordeal. Then there was that special purple hat, the one that was purposefully picked out by her nurse the day she arrived back from surgery. It was perfect and the nurse had made sure she had picked out the most beautiful hat that suited Evelyn perfectly. All the nurses who wrote special messages to Evelyn. Every day we would ask each nurse that looked after her to write on a little heart shaped tag something about the day. These were hopefully one day going to decorate Evelyn's nursery and we'd be able to share the stories with her when she was older. When Evelyn passed we received so many of these notes from all the nurses. Sharing special thoughts about our precious girl. These notes are such a great comfort to us now. 

There are nurses that I still know to this day and I am honoured to call them my friends. They give me a special lifeline to a life I no longer have, to my Evelyn. Every day that passes is more time since I spent it with her. All the staff members on NICU were a part of our story, our family life. When I visit the Oxford Road hospital campus I feel at home. It was our home and you were our extended family - we will never forget you.

                                                    Copyright Victoria Greenhough