Family and Friends

 

There aren't just medical staff on the NICU wards, of course there are other parents, family members and friends. 

To start this blog, I want to say a huge thank you to our parents. They visited us regularly, bringing food to keep us going, gifts and news from 'normal' life outside of NICU and generally looked after our welfare. We are fortunate that our parents do live close enough by to support us like this. Also, a huge thank you to our wider friends and family who visited us in NICU, met Evelyn, kept in touch via texts reminding us you were thinking of us and loving us all. Not everyone we love live close to us, thank you all of you who kept in touch and kept us in your hearts. I know Evelyn touched all your lives.

The thing about NICU, and I suppose other children's wards, is that there are loads of other families around, families that are like your own and families who are not. There was such a diversity of people in that one ward, people from differing cultures, religions, ethnicities, and just general lifestyles differences. Something that I remember occurring to me while there was how NICU was a human experience, it didn't matter who you loved, how you loved, what you believed, how you lived, in NICU we were equal. We were all touched by the lives of our poorly babies and were trying to make sense of our reality and look after our babies.

Thing is though, we are all human. NICU beds, particularly in the intensive care wards, were very close together. You could not choose who your baby was next to. Obviously, for the babies, it didn't matter, they were babies. However, as adults we have our values and prejudices. We have people that we are happy to leave our children around and those we are not. Outside of NICU we more often than not have a choice of who spends time around our children. In NICU we do not. Unfortunately, there were a number of parents that Evelyn's bed was next to that made me so uncomfortable. The thought that they could be anywhere near my baby girl without me present made me feel so anxious. This was always bound to come up and sorry if this offends anyone, but a large number of those parents smoked. The toxic substances from smoking stay on your hands and clothes. So many parents I knew had just been out for a smoke would be so close to my baby girl. She had one lung; you can imagine my fear. On another occasion, near the end of Evelyn's life, family members were visiting the incubator next to Evelyn. One of the family members was clearly ill and would even cough away from her grandchild but in the direction of Evelyn, or one of the other babies in close vicinity. On that occasion I went straight to the nurse and asked for her to be removed, never understanding what she was thinking coming into such a sensitive area potentially carrying an infection.

NICU is a very stressful environment for parents (prize for stating the obvious? Thank you). Some people's psychology leads to very erratic and destructive behaviour, which often is apparent on the ward. Some shout at the staff, some shout at one another. When in the high dependency unit, Evelyn was next to a premature little baby. Her father was extremely vocally abusive towards his partner. The nurses did have words with him and threatened him that he would be removed, and I never saw that he was abusive to them. His erratic nature was so disturbing for me. The thought that he could be so close to my daughter when I wasn't there. Just to even go to the toilet was agonising for me.

But, there were some amazing parents and family members on the ward. I got to know many people and we were able to support one another. Just to be able to speak to people who understood the stress of being in NICU. Some parents had other children so couldn't be with their baby as much as I could. I remember a little baby who I only saw got visited once in my 4 weeks of ICU for the second time. That broke my heart. I made friends with a family who had twins, 1 had been discharged from NICU while the other remained, but then had become poorly and ended up in paediatric ICU. Imagine having 2 babies, one in NICU and one in PICU. I was always in awe of those parents who had had multiple births. Twins and triplets, often split for bed space and would find themselves having to go from room to room to spend time with them. Parents who had twins and one was poorly, once was healthy and discharged. Parents who had had a premature baby still on oxygen, but discharged, coming back into NICU as their new baby had also been premature. You started to try to support new parents coming into the unit, offering advice that you learned.

The thing about NICU is you have no choice. You know that you need NICU, you know you should be grateful that NICU exists and that it is free within the NHS. I am so grateful for it. However, I want to share how hard it is that you are not in control of who is around your baby, sometimes you are happy with who is close to you, sometimes you are not. It is this lack of control and choice that can add to the trauma of the place. We were all parents in the most stressful and traumatic of situations, wanting the best outcome for our children. As far as I am aware, most of those parents that I did find solace with had happy outcomes. Their children graduated from NICU. Evelyn did not, NICU was her home and a part of me remains there. I have no other memories with her which is why NICU obviously plays such a role in her story. This was our family and her life.