Family Diaries: Meet Lisbeth and Olive

Lisbeth, mum
Olive, 4-year-old daughter

Could you tell us about your daughter and how she was fed at the beginning?

Olive is four. She is a happy, expressive and sociable soul who loves to be with her friends. She is a total Daddy’s girl. She has quadriplegic cerebral palsy, is a full-time wheelchair user and is impressing us all learning to use an eye-gaze device to play games and communicate.

Her birth was terrible and she was then in intensive care. We were in hospital for three weeks. One of the things stopping us being able to go home was Olive’s feeding - I’d given up trying to breastfeed and she wasn't sucking from a bottle. It was so stressful because she slept a lot of the time, and the speech and language therapist could only come across once a day to check her drinking was safe and Olive was often asleep when she came so the therapist couldn’t assess her. She was fed though a naso-gastric (NG) tube when we brought her home but after a week she started taking a bottle, and a few days after that the NG tube could come out. When Olive was six months old, we started to wean her but she never got past the thick puree stage. She's very little and she had static growth for a while.

In 2020 Olive was diagnosed with infantile spasms and was having horrible seizures all the time. We couldn't go into hospital because of COVID so we had to give her steroids at home. It was difficult because we had a three-month-old baby too, and feeding Olive became completely impossible. She had really bad gastritis due to the medication and it really exacerbated her existing reflux and so she wouldn't eat anything. She spent three weeks crying solidly. Our paediatrician said Olive needed to be referred for tube feeding. We were still unsure - one of the things we were clinging to was that she had all these medical issues but she wasn’t tube fed. I was emotionally attached to being able to feed her, especially since I hadn't been able to breastfeed her.

But the reality was that mealtimes had become horrendous, and they happen three times every day. We were stressed out, trying to feed her anything fattening to get the calories in, and her not eating it. So we agreed to the referral. I had to change my mindset. I felt like I was failing as a mother because I wasn't able to feed Olive in the 'normal' way, or the way that I'm used to. Actually, I would have been failing to not allow her to be fed in a way that’s manageable for her. Once I got my head around that, it was fine. It's just different. We waited until she was off the steroids, then around her 3rd birthday she had her gastrostomy and it changed our lives.

How was the gastrostomy operation and the recovery period?

It felt very alien. Your child going into a general anaesthetic makes you feel nervous, and then learning how to use the tube and make sure it healed properly felt like a lot. We've been lucky that Olive hasn't needed a lot of medical intervention so when we came home with the feeding pump it was the first time we'd had beeping ‘hospital equipment’ in our home. We were nervous about how Olive was going to deal with it because she's aware of what's going on even though she's nonverbal. We attached a tube to a doll and every time Olive had her tube feed, we'd give the doll her feed as well. We were worried we’d get something wrong, and we couldn’t tell how much pain she was in. At the beginning, we’d barely touch her whilst while her feed was on, but it all healed fine.

Olive has a PEG, which means she has a tube attached to her tummy which will last two or three years. Then she will get a button with a water balloon that we will change ourselves. One of our fears was that we would pull it out so it’s good that you can't pull a PEG out.

Who helped you feel like you knew how to use the tube?

I was breastfeeding my six-month-old daughter, Etta, when Olive had her operation, and COVID meant I couldn't go to the hospital at all. So I was at home and George, my husband, was shown how to use the tube by the nurses in the hospital. I learned partly from George and also a nurse came out to show us how to use the tube and the feeding pump before the operation. A couple of community nurses came out to check that everything was healing properly and when I was worried about the site I could take a photo, email it to them, and they'd call with advice. We were well supported.

How do you feed Olive now?

One of the rockiest things at the beginning was balancing out how much feed she can have. If she has too much or the wrong kind she vomits, or another type makes her constipated. But we want her to put on weight. Once this was sorted, everything became significantly easier.

She's fed a high calorie feed three times a day. Olive is fed at the same time that we're all eating, at the table, but she relies 100% on her gastrostomy. Mealtimes had become so distressing that it was a relief to not have to even try to feed her orally. We just switch a button and everybody's happy.

This is not what I thought parenting was. I didn't realise I was going to have to write a spreadsheet detailing what time my daughter was being fed and send that for somebody else to sign off. But you become accustomed to it and it's nice to feel confident making those decisions.

When Etta started eating, Olive started to signal that she wanted to try something, so we give her tastes. At nursery, when her friends are eating, she might have a tiny bit of yoghurt. She knows when we have chocolate, cake or ice cream and we give her a tiny bit off our finger. It's nice for me to see her enjoy that.

We have the feeding pump in a backpack attached to the back of her chair and it goes everywhere with her. It was a big deal the first time we tube fed her at somebody else's house - to remember to take everything. If we need to be somewhere at a certain time we have to time that around Olive's feed. But last week, I took her out on my own for the whole day with all of her medicines and tube fed her in a cafe, and it's nice that we're that confident now. At the beginning I felt like it was so different, and nothing was ever going to be the same. Actually, it's given us more freedom. There are so many elements of Olive's life that we are working on, or that she is working on. Let's make nutrition effortless for her.

Is there anything that you wish you'd known sooner?

The biggest one for me is when our community team were talking about the tube, before Olive’s operation, they were saying we could blend some of our meals and put them down Olive’s tube. That felt quite natural to me. Nobody told me that her type of tube would be too small to do that. I'm still annoyed because I didn't know she was going to be fed with a formula. If somebody had explained we’d have to have a PEG first, while her tummy healed, I would have understood more.

There's a lot of admin with tube feeding. There's never a night off with prepping and cleaning syringes. I find really useful stuff on Instagram - like useful trays for syringes to dry on. There are things that other parents have solutions for that the nurses don't know about.

Olive wears vests that button underneath, because otherwise her clothes ride up every time we transfer her out of her wheelchair, but we need access to her tube. I could only find plain vests that I wouldn’t have chosen otherwise. I ended up buying ones I liked and sending them to someone who could adapt them – he puts a zip across the middle so we can get to her tube. It would have been nice to have chosen some nice clothes for Olive and had them adapted ready for after her operation, but it hadn’t occurred to me. I want her to have nice clothes and I don’t want her disability to take that away from us.

What are your plans or hopes for the future.

I would like to try feeding her blended food through the tube. My husband is less convinced because it's so easy at the moment, and there would be even more admin and preparation for us. I'm aware that that we’d be under a dietitian’s eye again, but I feel like there would be great benefits to Olive’s digestive system and general well-being if she has some ‘natural’ food. Maybe she'll just have a blended snack once a day, or we’d do a bit of both. The tube is now something that we feel in control of and it's been so positive for our lives that I wouldn't change it.