By Joanne Meadon
Tube dependency: Lily was diagnosed with a feeding aversion, and this story is about how we overcame that. It’s really important to ensure that the reason for not feeding orally is identified by a health professional.
When Lily was seven weeks old and she was admitted to the intensive care unit for congenital heart disease; a nasogastric (NG) tube was inserted so that she could be fed, as she’d struggled to feed properly for two weeks and was struggling to thrive.
At first, I remember feeling relief – relief that she wouldn’t be dehydrated or starving any longer.
Shortly after Lily’s first open heart surgery, we tried her with a bottle (having previously fed via both breast and bottle), but she wouldn’t touch it. The nurses suggested she may be too tired, and to try again another time. We did, many times, but when Speech and Language Therapy (SLT) got involved, it turned out that Lily had developed a feeding aversion because she associated feeding with drowning.
We were trained to feed Lily by gravity down her NG tube by the nurses in the hospital, and we began two hourly feeds there. We were discharged on three hourly feeds, and honestly, I hated it. I could no longer breastfeed Lily and tried her with a bottle as often as I could muster up the courage (because of the tube dependency she would scream and turn her head away). With weeks and weeks of SLT input we tried different milks, different bottles, milk flavourings, different timings, different people feeding her, letting her go hungry, water in the bottle, open cup feeding, milk thickeners, omeprazole… You name it, we tried it. It became clear that Lily wasn’t ever going to drink milk orally and she had to continue to be NG tube fed until she was fully weaned.
To add insult to injury, for months and months Lily would seem to vomit up the majority of every NG tube feed and it was exhausting. The prep, testing the PH of her tummy, the hour-long feed, the flush and then… she’d vomit it all straight back up. We tried high calorie formula to reduce the volume, omeprazole for acid reflux, different feeding positions, and finally milk thickener which meant she now had to be fed via a pump rather than gravity fed. This was slightly better as you could carry the pump in a backpack if you were out, but generally, it was soul destroying. I’ll never forget the beeping sound of an occlusion on that pump! She was gaining weight very slowly though, so we kept at it. But I cried almost every day because of it, and I felt like I was being robbed of a ‘normal’ maternity leave.
As the months passed, Lily became stronger and was able to sit. Soon enough, the vomiting stopped which helped. Then she gained weight quicker, which meant we could drop the 3am feed, which also helped. In fact, she started gaining weight a little too quickly…(but I wasn’t mad!)
Weaning though, was again a trial. Lily wouldn’t accept anything in her mouth, whether it was a spoon, a finger, a baby puff crisp; she had decided that feeding was bad and she wasn’t going to do it. I was so disappointed every time I tried her with a puree or puff crisp and she clamped her mouth shut or cried. Then I cried. Then back to the shops I went hunting for something else she might like.
SLT advised to try Lily at least three times a day with food and let her explore the tastes and textures, and realise that food can be quite nice, but by herself as she didn’t trust me (again, devastating). So, this is what I did. We bought her a little camping chair with a tray and I sat with her numerous times a day letting her get messy with purees, porridge, yoghurt and all sorts.
Everything I ate, I ate in front of her making ‘yummy’ and ‘mmmm’ sounds with a big smiley face, feeling like an absolute idiot, but trying to convince her that eating was lovely.
I also bought a free flow spout beaker and let her play with it at all times, even in the bath, to realise it wasn’t scary.
Every hour I’d hand her a melty stick or puff crisp and let her have at it. After that I’d hand her a beaker of water and let her try it. At first, she dropped it, looked away, fell asleep, anything that meant she didn’t put it in her mouth.
I strongly believe that it was very shortly after Lily could sit unaided that she began to take an interest in food. There are theories that say this is one of the very first steps to feeding – I’m no expert but I think it’s to do with confidence. Suddenly, she couldn’t get enough puff crisps, she glugged down water, and she started putting her spoon in her puree and putting it to her lips! I was delighted!
Lily started nursery at nine months old and by this point had replaced all but two milk feeds (with the dietician’s approval) with meals. All the staff got fully trained, but only needed to give her one milk feed, and we gave her one at night before bed.
We asked nursery staff to try feeding Lily her food with a spoon but if she refused, to give her the spoon and let her try herself to realise it wasn’t scary. She rarely protested being fed, unless she just wasn’t hungry, in which case the staff stopped and tried her again later.
We carried on offering Lily food six or seven times a day and she began to eat more and more of it as time went by.
We removed Lily’s tube at 12 months old and we haven’t looked back. She eats three meals and numerous snacks both at nursery and at home; she’ll be fed or she’ll feed herself, depending on how sassy she’s feeling that day.
Of course, she has her ‘off days’, like any baby. Especially if she’s got a cold or a sore throat. She still won’t accept milk, in fact she won’t accept any liquid other than water or medicine, but I can handle that to not have to NG tube feed her!
Our tube dependency story will hopefully show parents who are starting out NG tube feeding, or are in the thick of it, due to a feeding aversion, that it can get better, and patience really is the key. If you have a dietician and SLT options available, make use of them. And most importantly, try not to be too disheartened. Tube dependency is hard, but it’s not impossible to overcome.
If you are experiencing tube dependency or any other issues you would like support with, join our heart parent Facebook support group to talk to other heart parents here.