Overcoming fears about feeding – Liz’s story

When I found out I was pregnant, I had lots of plans of what it would be like when our baby arrived, which included breastfeeding. But all our plans had to change as my daughter Josie didn't want to wait until her due date of New Year's Eve to see the world. She was born 16 weeks early at 23+6 weeks.

Seeing how tiny and fragile she was, the thought of touching, let alone feeding her terrified me. In the couple of days leading up to her birth, I didn’t even think of giving her my milk. All I could think about was the birth itself and hoping she would survive. So, I probably wouldn’t have expressed if it wasn't for the amazing midwife at Royal Bolton Hospital who helped me to hand express within 30 minutes of Josie being born and gave that milk to Josie not long after.

The midwife gave me a pack which had an expressing diary and two bonding patches in the shape of love hearts – one for me and one for my little girl. When she was born, Josie’s heart patch was bigger than her head – it’s still in her crib now as a reminder of how far she has come.

After a while of hand expressing, I started to use a pump. I expected lots of milk to come bursting out, but that certainly wasn’t what happened for me, partly because I felt so stressed and nervous. I kept trying to express as much milk as I could for six weeks, but it upset me a lot that I couldn’t produce enough for her. This tiny person weighing 1lb 6oz needed feeding up and I felt guilty that I couldn’t give her what she needed.

My partner Paul and I were encouraged to be involved with tube feeding straightaway. But it was a daunting prospect, so we asked Josie’s nurses to be with us for the first few feeds to make sure we didn’t hurt her. It also felt scary having to aspirate her tummy to make sure the tube was in the correct place and she had digested the milk.

When Josie was six days old, the feeding tube slipped somehow and perforated her bowel, which meant she needed emergency surgery. The operation went well and she began feeding a week later. But after that, I was incredibly nervous about the feeding tube moving.

When one nurse saw how anxious I was, she told me that the best thing I could do for Josie was to try to relax and just give her cuddles. It had been a few days since I had last held her. So, at 10 o’clock at night, this nurse found me a hospital gown and put Josie on me for some skin-to-skin. I remember sitting there until almost midnight cuddling my beautiful daughter.

We learned that the feeding tube was set to a specific number and what volume the aspirate should be before feeding. The nurses would ask how Josie’s aspirate was and they would help with checking her tube to make sure it was safe to feed her. If I was ever in doubt, they were on hand to help. Over time, tube feeding became second nature to us.

As she grew bigger, there started to be talk of offering Josie a bottle. I was really looking forward to this, but I was nervous at the same time. Because it was such a big and busy Level 3 unit, I felt lost and alone when I was trying to feed her a bottle. At times, her saturation levels and heart rate would drop, which would make me panic and I would become too scared to continue feeding her.

Two nurses in particular offered us some support, sitting with us as much as they could, watching Josie's saturation levels as I fed her. They showed me how to stop Josie being overwhelmed with the flow of milk by tilting the bottle lower when her oxygen levels dropped.

My partner Paul didn't feel confident about feeding her a bottle at first. He can be heavy-handed at times and he was worried that, given she was so small, he might hurt her. I would sit close by him when he was bottle feeding Josie so I could watch the monitor and let him focus on Josie. Paul was much more confident in tube feeding Josie so if she didn't drink all her milk from a bottle, he was happy tube feeding her the rest. Josie loved having time with her daddy and I was so proud of him.

Things really started to click with Josie’s feeding when we were transferred to a smaller unit at our local hospital, where I felt more supported. I’ll never forget one nurse who pulled up a chair one day while I was feeding Josie and asked if she could try for a minute. She sat Josie upright and Josie drank a full bottle, with very few drops in her sats (oxygen saturation levels). That hands-on support had been just what I needed. I thought I would know instinctively how to feed my baby, but actually I needed to watch someone do it, because it scared me so much when I saw her saturation levels drop.

To parents who are starting to bottle feed a baby who has been solely tube fed, I would say: take your time. I found that preparing her bottle, getting comfy and feeding her would take a while. It is important not to rush the experience. I thought Josie would take to the bottle much quicker, but it’s important to remember that premature babies need to learn to suck, swallow and breathe. It is a lot for them to coordinate!

I would also say: ask for help as much as you need to from the nurses as they are not there just for your baby’s medical needs but also for things like feeding. The more support and guidance you receive, the quicker the feeding tube can come out.

Josie has just turned one, loves her milk and solid food. Her dad and I will be forever grateful for all the love, support and care we received from the three hospitals in which Josie stayed. The nurses and doctors are so special and saved our baby's life.