122 days in neonatal care - Katrina's story

Katrina 1

Katrina's daughter Sienna was born at 26+3 weeks. In her story and own personal letter to Sienna, she shares her experience of being a single parent with a baby born prematurely.

My little girl Sienna was born spontaneously at 26 + 3 weeks, weighing 2lbs 1oz on 27 August 2019. The medical team had no idea what the cause was that made me go into labour.

Sienna was taken straight from me and sent to NICU. She kept catching little infections and I couldn’t keep track of the amount of times the panic button went off. When she was about two weeks old, she started to become really ill - she wasn't taking feeds, she was constipated, her belly was distended, and she was having X-rays and scans pretty much almost every other day. Nothing would show up so no one knew what was causing it.

Then, about four weeks after she became ill, at six weeks old, the doctors said that Sienna wouldn’t survive unless they operated on her. So the next day, on Saturday 12 October, she went down for emergency surgery. 20 centimetres of her bowel was removed because it was dead, as well as a hernia that was found in her intestines.

Sienna came back with a stoma and the nurse would come in and help me change it and care for it. For a while, she was doing well and she moved up to the high-dependency unit, but then we started having problems with the stoma - she got really sore and it started leaking.

On 12 December, she had her stoma reversed, earlier than planned. She was just short of four months old.

We were in hospital for a total of 122 days and finally got home on 27 December 2019. Luckily, I was able to stay at Saint Michael's Hospital in Bristol, thanks to Cots for Tots accommodation. It meant that I could go and see Sienna whenever I wanted to.

When Sienna was in the hospital I was a single parent so that was difficult in itself, but I made lots of friends with babies in the NICU too, who all had similar stories to me. I'm still in touch with a lot of them now. I was also lucky to have lots of support from family, friends and the nurses and the doctors were really supportive as well. I also saw a therapist to talk about my worries, which helped so much.

My main advice to other parents would be to talk to other people on the ward because chances are they're going through something similar.

It was stressful watching other families and babies come and go home before we did. Because we were in NICU for so long, a lot of the time Sienna and I would have been there for months before families arrived and stayed a lot longer than them. It felt like one step forward and two steps back a lot of the time. I would think we were making progress but then something happened and we were back in intensive care, or she would have to go back on a ventilator.

The other piece of advice would be don't sit next to the hospital bed all day. If I stayed at the hospital for too long, the nurses used to tell me to go and get a bit of fresh air, which I think like a little parents need to de-stress and take time to themselves.

Sienna is really well now. We are possibly looking at her having ADHD and autism, but she does dance and gymnastics, which she loves. She has been discharged from all her hospital appointments, including her surgeons and physiotherapist, apart from one regular appointment for asthma.

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A letter written from Katrina to her daughter:

To my beautiful daughter, Sienna Rose,

Today marks four years since I started to go into early labour. I am so sorry your entrance into this world was so full of chaos and loud noises. Bright lights, and wires. I felt so guilty after your birth, and I still do at times.

The one thing I wanted was to protect you, but at times I feel like I failed. I couldn't hold you when you were born. Instead, I watched you get taken away from me all too fast, whilst I was taken to a ward and put with other parents with newborns who could take care of their babies, whilst you were hooked to wires.

I stayed with you all day, every day. 122 days to be exact, even when all I could do was stare. I remember getting sore hands from washing them too much, every time I entered or left the room. I watched as you had apnea and Brady episodes and the nurses had to press the emergency buzzer to get some help as they couldn't bring you back to life.

I watched you have heel pricks and medicine and long lines put into you and feeding tubes changed, taking one step forward and two steps back. I watched as I saw parents nurture their babies when they were crying, longing to hear your cry for the first time.

I watched as surgeons put you to sleep when it was time for your operations. I watched your pain all over, wondering how someone could go through so much more than the average person in their lifetime.

The thing that hurt the most was watching other parents come and go with their little bundle of joy, wondering if it would ever be our turn. But you pulled through everything. You amazed me every day and you still do.

When I did get to hold you, I was afraid to move, in case I hurt you or knocked a wire. I couldn't hold you all day. I had to let your strong body rest in between cuddles. I cried every time I left you. When you were in high dependency, I wasn't staying at the hospital. It was harder to see you but I still did, every day.

Eventually, our day came. You came home. You make me so proud. You are so strong and brave. I didn't realise how strong I was until you showed me.

You may have been 2lbs 1oz when you were born at 26+3 but thank you for being my hero! Thank you for giving me hope!

Love Mummy xxx

Katrina 2