Mother’s Day on the NICU – Nicola’s story

Nicola gave birth to her daughter Edie at 23 weeks and was told she had little chance of survival. Here, she talks about what it was like to spend Mother's Day on the unit, and how connecting with her own mother helped.

As Mother’s Day rolls round again, I find myself in a reflective mood and a little emotional. I felt the same way on the anniversary of my hospital admission and my daughter’s first birthday and I have heard that this is a common side-effect of the NICU experience.

My daughter Edie was born extremely prematurely on 2 February 2017 at the University Hospital Wales in Cardiff. After going into spontaneous labour at 23+4 weeks gestation, she arrived weighing 580g with little hope of survival.

When Edie was first born, one of the few things I remember thinking was that Mother’s Day would be very difficult. In an attempt to protect myself, I looked for red flags in advance; future days and occasions that would be particularly difficult so that my husband Dave and I wouldn’t be surprised by them. It wasn’t that I was being negative but we were told by doctors that Edie’s chances were very slim. Looking at her it was easy to see why.

She was born 17 weeks early and I already started to prepare myself for a Mother’s Day without a daughter.

At two weeks old, doctors began to discuss whether it was time to discontinue Edie’s care. We were taken into a quiet room where the news was broken to us. It was the worst day of our lives. Thankfully, Edie managed to turn a corner but her journey was not plain sailing by any means.

On Mother’s Day, Edie was seven weeks old and had come off life support and had progressed from bipap to high-flow oxygen. She had reached 1kg and even though her situation was very serious, it wasn’t being measured minute-to-minute any longer. I began to notice that doctors and nurses would talk about her in the long-term and discuss her future with more confidence.

Being on the NICU can be terrifying and often upsetting but being there on Mother’s Day made things ten times worse. It is a day that traditionally is set aside for outings with children and time at home together. Instead I found myself resting my forehead against the incubator with alarms ringing in my ears worrying about my daughter’s life as my own mental health suffered.

One of the consultants on the unit had begun to notice the emotional strain I was going through. I wasn’t eating or sleeping properly and spent hours and hours at the hospital every day. The consultant urged me to do something for myself, pointing out that Edie would be a patient for a long time yet and that my current routine would not be sustainable. I knew he was right and so decided to spend a few hours on Mother’s Day with my own mother.

Dave and I took my mum to lunch and it was lovely. I knew that she was suffering too. Like me, she was heartbroken over Edie but she was also deeply concerned about the health of her own baby – me. Becoming a mother helped me to understand how much my own mum loved me and it added a different dimension to our relationship. Being thrown into motherhood in such a traumatic way meant that I loved being able to spend a few hours with Mum because I just needed to be the child again.

During the meal, Dave presented both of us with a framed photo of Edie, my mother and I, taken the first time that Mum had seen Edie out of her incubator. It was so thoughtful that both of us were left in tears. In a strange way, it was the perfect afternoon. We laughed and chatted and forgot about our worries for the first time in ages. All three of us loved Edie with all our hearts and had been in dire straits with her but were now able to see a way through the darkness. At that lunch, we felt the happiness that can only be felt after you’ve been truly sad.

When I returned to the NICU, I felt revived and knew that I was lucky to have her here – even if it was at the hospital instead of at home. As I approached the incubator I saw a card propped on the top of it along with two photos of Edie. Seeing the card made me want to cry. I didn’t expect to be so touched by such a simple gesture from the nurses. You see, the thing about a NICU is that it’s not just a place where poorly babies are cared for - it’s a place where the staff go above and beyond to make you feel like a part of a family.

Every doctor and nurse who I came into contact with for the rest of the day made a point of wishing me a happy Mother’s Day. To hear it said aloud was strange but wonderful. I was someone’s mother – something I never thought I would be.

A nurse placed Edie on my chest and we snuggled up together for the rest of the afternoon. There was no better way to spend it.

Mother’s Day on the NICU will be different for all of us. We can all agree that it’s not somewhere we ever thought we’d be or want to be. I know that many mothers will be reading this not knowing what the future has in store for their little one. For me, I stand by the idea of making an extra effort to connect with your baby on that day – even if it is just saying a few words or touching their hand. That moment of connection will freeze in time and be yours forever.

To all the mums spending their first Mother’s Day on the NICU and to all those who have made it home I wish you a Happy Mother’s Day. I feel your struggle but I want you to know you are doing an amazing job. To the mothers who little ones are no longer with them don’t forget this day belongs to you. You are warriors. We all are.

To read more about Nicola's journey, you can visit her blog

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