How Bliss support groups helped me - Lucy's story

Lucy's Story Hero

Our NICU journey is five weeks that I will never forget…

Emily was born nine weeks early in October 2014. A complete shock after concerns that she could be a Christmas baby (funny to think looking back that we were worried about something as insignificant as that). We still don't know why she was born prematurely.

We were very lucky that Emily was born healthy but small at 3lbs 11oz. It was difficult not being able to hold her and seeing her delicate body covered in wires and tubes. The regular beeping of the monitors when her heart rate or oxygen levels dropped kept us constantly on edge, and seeing her tiny feet covered in bruises from where blood was taken daily was heartbreaking. When I left the neonatal unit I would see mothers being wheeled from the delivery suite with their babies in their arms, and dads coming up in the lifts with their car seats. I felt jealous that it wasn't us and that we had missed out on some of the things that might be taken for granted, like changing the first nappy or having friends and family over to visit us at home. Nonetheless, I was determined to make the most of the first few weeks of Emily's life, no matter what the circumstances. So much so that, although it was very hard, I also look back on that time now with some fondness. Staff at the hospital endeavoured to make us feel comfortable on the unit, kept us updated on Emily's progress whenever we arrived and told us how we could get involved with her care.

She lost over 20 per cent of her body weight in the first couple of days and getting back to her birth weight was a slow process as she would often bring up her feeds due to reflux and an immature digestive system. I would spend all day on the unit with her, being involved in caring for her as much as possible, but I still felt guilty going home at night and was worried that she wouldn't know who her parents were.

The provision of a Bliss Nurse in the hospital was really valuable as her focus was on supporting families with babies on the neonatal unit. She gave us advice on how to develop the parent and child bond, such as doing regular 'kangaroo care' and placing knitted squares in the incubator that I had worn next to my skin.

After four weeks of expressing several times a day I was finally able to start breastfeeding Emily and we were able to bring her home at 4lbs and 5oz. However we soon realised that the challenge of having a premature baby doesn't stop when you leave the hospital. For a long time afterwards people would stop us in the street assuming that Emily was a newborn baby. We were constantly worried about how much weight she was putting on and found ourselves wishing that she could do some of the things that other babies of the same age were doing. We had to wait 15 weeks until we got a hint of a first smile, compared to the average six weeks of babies born full term.

Thankfully the support from Bliss has continued. Their range of booklets and publications which we were given in hospital has helped us with settling in at home and answered our questions about a range of issues. Not only this, but our local Bliss Nurse, Julia, helps to run a family support group for parents whose babies have been in the local NICU. It has been a great opportunity to spend time with other mums who have shared similar experiences and understand what it's like to have a premature baby. The group has also provided us with the chance to meet with specialist healthcare professionals to give advice on issues such as weaning.

Emily will be six months old next month, and while she still has some catching up to do, she wouldn't be where she is today without the dedication of Bliss and NHS staff.

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