Tubie or not tubie: Izzy’s tube feeding story

16 November 2022  |  Tamsin Kingsley

Last Saturday Izzy had her gastrostomy button removed from her tummy. It’s not a big procedure, was done at home and just left a small hole that will hopefully heal up by itself. However, for Izzy and us as a family it is hugely significant. Izzy has had a feeding tube since a few hours after birth, when her first ng tube was inserted on the neonatal ward.

The truth is that many people didn’t even realise she still had a feeding tube, because she eats and drinks so well. But with it being a surgical procedure to put a gastrostomy in, they wanted to be completely sure she wasn’t going to need it again before they removed it. And now we’ve finally reached that point, I can’t help but reflect on the incredible, traumatic, painful and miraculous feeding journey Izzy has been on. I initially planned to pick out a few memories to share with everyone, but the more I wrote the more therapeutic I found it and so have decided to give you the whole shebang, whether you choose to read it or not! So here are my experiences and memories of feeding; some are significant moments medically, some just reflect the day to day reality of having a child who is tube fed. It’s a fairly self indulgent post purely about our journey, but you never know, maybe it will help you to understand a little more of what life is like for a friend with a medically complex child, or with medical complexities themself….

Our Tube Feeding Journey...

1 hour old

First breastfeed. I’d only stopped feeding Lauren 6 months previously and I immediately could tell this felt different, like she wasn’t sucking as strongly, but I figured I’d just forgotten what it felt like to feed a newborn. However, it quickly became evident that something wasn’t right, as she started struggling to breathe and her colour changed to blue, or ‘dusky’ as they like to call it in hospital…cue medics panicking and removing my baby from me.

6 hours

I saw Izzy again, now in an incubator. At this point she had an ng tube; I can see this from the photos, though I’m not sure I understood at this point what this was. For anyone as ignorant as I was, ng stands for nasogastric tube- meaning it goes from her nose down into her tummy. It is taped to a person’s face and therefore at high risk of being pulled out or displaced, but I’ll come onto that later!

1 day

I started breast pumping. Initially on IV fluids Izzy was slowly allowed very small volumes of my milk down her tube. Izzy was intubated (on ‘life support’) so oral feeding was not an option at this point. Anyone who’s had a baby knows just how important the first few days are in establishing feeding, be that breast or bottle. Some would say she never stood a chance, and I certainly came across healthcare professionals who seemed to write her off as ‘complex needs, therefore always tube fed, non-verbal, non-mobile etc.’. But Izzy was out to prove everyone wrong.

Tubie or not tubie: Izzy’s tube feeding story

3 days

The doctors were able to remove her breathing tube (extubate her), having failed previously. It almost failed again (with her not being able to breath for herself well enough) until our knight in shining armour (Dr Chetcuti) came in the room and suggested lying Izzy on her side. This changed everything for Izzy and is still the best position (breathing wise) for her to sleep in now.

With Izzy breathing for herself again I was now allowed to try breastfeeding under supervision from nurses; it’s a good job it wasn’t my first baby to be honest and I’d lost any sense of embarrassment at being watched while feeding!

From this point until 5 weeks old I tried both breast and bottle feeding daily, with very little success. A few sucks here and a few ml there gave us hope that progress was being made, but more often than not those few sucks resulted in desaturations (oxygen levels dropping) and the need for emergency oxygen to be given.

5 weeks

Videofluoroscopy (video X-ray) showed aspiration on thin fluids (some of the milk was going into her airways). I was told that under no circumstances could I continue to try breastfeeding as this would cause a danger to Izzy’s life. The ‘good news’ was that I could still give thickened breast milk with a bottle. This was devastating for me, as I was still hanging onto the hope that I could have this one ‘normal’ experience with Izzy, after so many others had been taken from me.

Izzy continued to be fully tube fed via ng with daily attempts with a bottle.

2 months

We returned home with a feeding pump and various other related equipment. A monthly delivery was set up for all our tube feeding supplies. At this point I had a 1 year old to look after as well as breast pumping 3 or 4 times a day and tube feeds of half an hour each time 6 times a day. Oh and i was supposed to be doing oral stimulation and trying with a bottle of thickened milk at every feed, which then ended up going down the drain as she had no interest in actually drinking it (anyone who has breast pumped knows how galling that is).

Thankfully we as humans are adaptable creatures, and quickly tube feeding became as normal as any other new routine. We got into a routine of making up the feeds and meds, and using the special backpack that you could put the pump in for out and about. Soon we were feeding here, there and everywhere; in the car, at parks, farms and picnics to name just a few. But it was hard work, to say the least.

Tubie or not tubie: Izzy’s tube feeding story

Our life became consumed with replacing tapes, when the next feed was and what to do when we couldn’t get an aspirate (a small amount of stomach contents pH tested before each feed to ensure the tube is positioned correctly) or the tube got blocked. Every tubie parent dreads turning round to find their child has, once again, pulled out the ng tube, usually in a completely public place and at the most inconvenient of times. Or worse, realising that you yourself are responsible for pulling it out, as happened to me the first night Izzy came home from hospital. I caught the end of the tube on the door frame and just like that it was out. Thankfully I had opted for being trained to replace the tube myself while in hospital, but pushing 20cm of tubing up their child’s nose is not something any parent enjoys, or any baby or child either for that matter.

3 months

Having gone from seeing a Speech and Language Therapist almost daily in hospital to having no input from them at home (due to poor/slow handover between hospital and community teams) we finally got a visit from a Community SALT. She watched as I attempted (as I had done every day) to get Izzy to feed from a bottle before telling me that by trying so hard I had given Izzy an oral aversion and she was no longer to have anything orally. I asked about how long she would be tube fed and she told me it was fairly likely she would always have a feeding tube. She told me about gastrostomies (a tube going straight into the tummy) which was all totally overwhelming to me at that point.

Tubie or not tubie: Izzy’s tube feeding story

4 months

Izzy had always had reflux but this seemed to be getting worse and worse. It felt like there were not enough muslins in the world to protect our carpets (and walls, furniture etc.). It got so bad that when I suspected she was going to vomit I would run to the sink and try and aim her at that to minimise damage. Another source of stress (for me) and pain (for Izzy) seemed to be increasingly painful wind that she struggled to shift. This would lead to screaming that felt never ending, and screaming would often then lead to…more vomiting! Hurrah! Our community paediatrician suggested she may have a dairy intolerance and this was the last push I needed to stop pumping breastmilk. It was becoming increasingly difficult to keep my supply up while looking after both girls, and the thought of having to go dairy free as well just felt like too much. Izzy was moved onto a dairy free formula which seemed to help to some extent. However, the reflux remained bad despite various different meds we tried.

Oral feeding felt like it was moving further and further from a realistic possibility, and the paediatrician sent a referral to surgery for a gastrostomy, along with a possible Nissens Fundoplication (tummy surgery for the reflux).

Shortly after this Izzy started her spate of hospital admissions for bronchiolitis, respiratory virus’ and pneumonias, and oral feeding moved even further from anyone’s minds. The focus was on getting Izzy home and well enough to stay there (many days i wondered if that would ever happen).

9 months

The time finally came for her gastrostomy surgery, but it was not to be. Her oxygen levels were just too low and she ended up being admitted for increased breathing support instead (by this point we were using oxygen at home). This turned out to be a blessing in disguise as the surgeon had decided against the stomach surgery for reflux, which ended up down the line being totally essential and lifesaving for her.

10 months

Worse night of my life. Izzy refluxed and aspirated on the vomit before it came out (thankfully whilst in hospital). She stopped breathing and the crash team were called to come and intubate her. She was rushed up to PICU and I was given somewhere to sleep elsewhere in the hospital. Finally the doctors realised the danger to her health of her having both an unsafe swallow and severe reflux, and two days later she had urgent surgery for the gastrostomy and fundoplication.

Tubie or not tubie: Izzy’s tube feeding story

This wasn’t quite the end to her hospital stays but after a few more admissions and being given Non-Invasive Ventilation for home we finally seemed to break the cycle of constant admissions, just a few days before her first birthday.

1-2.5 years

This was a pretty stable time of getting used to being a family of four actually living at home together, and Izzy was completely tube fed via the gastrostomy. Without the risks associated with the ng tube, we were able to give most of the quantity of milk continuously overnight, and the rest split between three ‘meals’ in the daytime. The gastrostomy button was much easier to manage than the ng tube, and her surgery had sorted the reflux (with the side effect of not being physically capable of vomiting). As always, it wasn’t without it’s issues, with the site getting infected a few times requiring oral antibiotics a couple of times and IV antibiotics once. Everything about Izzy is super flexible due to low muscle tone and hypermobility….including her skin. As she got more mobile she became capable of crawling away from the feed pump while attached to her button, which more than once resulted in the button being pulled out, fully inflated, and Izzy not being bothered at all! Once I remember catching it on her clothes whilst changing her in a tent in the middle of a festival. Out it popped and we had a to carry out the replacement in a field. She likes to keep us on our toes!

The feed pump was another source of endless frustration. Constantly bleeping with error messages due to air bubbles, the thickened feed being too thick for it (!) or just because it felt like waking you in the night one more time. Worse was sleeping through the bleeping due to extreme sleep deprivation, only to realise that your child had missed out on the last 5 hours of their feed due to your inability to wake. Talk about mum guilt! Or of course those times when you go to pick the baby up in the morning only to find them, their clothes and their bed completely drenched in milk, as the tubes had somehow become detached in the night and you’d fed 1 litre of formula to the bed rather than the baby.

Tubie or not tubie: Izzy’s tube feeding story

We were allowed to offer her puree which she seemed fairly disinterested in, but ever so slowly she started to move from a taste to half a teaspoon full, to a full teaspoon, to 2 spoonfuls etc.etc. Once she would have a spoon or two she was able to have more videofluouroscopies done to assess the safety of her swallow. There is no way to explain how ridiculous these test are. You take a child who has eating/drinking issues, sit them in a super clinical looking chair in a super clinical looking room, mix some foul tasting substance with their normal food and try and feed it to them as a technician behind a glass screen instructs you to ‘stop’ and ‘go’, all whilst you look ridiculous in a lead apron. It’s little surprise that for us and others we know these tests have mixed success. But eventually we were able to establish that Izzy was safe to try different textures of food, and just needed thickened fluids (sounds easy until you’re trying to stop her drinking bath or pool water).

Slightly against advice I started offering ‘bite and dissolve foods’ like those melty puffs that look like giant wotsits but don’t taste as good. She showed much more interest in these than the purees but still didn’t bother eating more than a few at a time. I tried to discuss with various professionals that she might take more if she was more hungry, but apparently as she had an oral aversion hunger wasn’t relevant and wouldn’t be playing any part. As she munched away on melty puffs I started to question the oral aversion, and eventually brought everyone on side for trying a more dramatic tube-wean.

2.5 years

We were allowed to try reducing how much formula Izzy received down the tube (without reducing her fluids) for 48 hours to see if this would encourage her to eat more. She went from having 21 scoops of formula a day to just 6. This was a fantastic success and along with some vitamin and calorie supplements we were able to continue with this regime. To put it simply, once we let her get hungry she started eating. I obviously am not advocating this in every case of tube feeding but for Izzy it was the right approach at the right time. A true breakthrough.

Tubie or not tubie: Izzy’s tube feeding story

Really the following 2.5 years were a very gradual journey of increasing quantity and variety of textures and flavours of food that Izzy could cope with and decreasing tube feeds and different food supplements she was having. That’s a fancy way of saying we were trying to make sure that not EVERYTHING that passed her lips was a type of crisp. She was basically weaned onto crisps (the less salty child friendly type for the main part) and then we went from there. When you once thought your child would never eat, you somehow become less bothered about the fact that their diet is less than ideal. And when I say gradual I mean PAINFULLY slow, the type of progress you don’t even notice yourself, but when someone sees her again after a few months they do.

After the success of reducing her food by the tube we tried reducing the fluids as well. She’s not been the most keen to drink but over the last 2 years particularly school have been amazing with encouraging her drinking, achieving more than I could at home, probably with more patience and consistency.

At some point the volumes of fluid down the tube got so low that the pump became pointless as we could fit the volumes in a couple of syringes and squirt them straight into the tube. I wasn’t sorry to see the back of that feeding pump I have to say.

4 years

In my infinite wisdom, when we started weaning Izzy I decided the dairy allergy had been a load of rubbish and she was fine with dairy. It took far too many sleepless nights of Izzy screaming in pain from wind for me to finally think to suggest she may have a food intolerance. The first thing we tried taking out her diet (again) was dairy and it had a significant impact on her wind and constipation. However, she was still needing a large volume of wind removing from her tummy via the tube before bedtime to prevent pain overnight. She was now pretty much oral for food and drink, with just medications and a little bit of water down the tube.

Tubie or not tubie: Izzy’s tube feeding story

5 years

Reluctantly I agreed to try not removing Izzy’s wind from her tummy for a week, knowing full well that this would result in screaming, no sleep and a very grumpy mummy and Izzy. I was wrong. Izzy’s gut had grown strong enough to more efficiently and effectively move the gas through even during sleep and she was able to cope with the change. Following this the only obstacle was for Izzy to take her medications orally. I was similarly skeptical of her ability to do this, but once again she proved me wrong and now reminds me if I forget to get her cocktail of meds out at breakfast. Around this time she was also declared ‘safe’ on thin fluids, meaning she can drink normal unthickened water for the first time.

5.5 years

Today we often watch in amazement as Izzy devours her dinner with more enjoyment and cooperation than her big sister (not that this is much of an achievement some days!). She enjoys a variety of flavours and is always up for trying new foods. Having not used the tube for a few months we got permission to remove it and last Saturday the community nurse came round to do just that. Having been there for 4.5 years, the tract where the button sat is fairly well established, and proving reluctant to close up. But I know that one day in the not too distant future that hole in her tummy will just be a scar, a memory and a small part of her bigger story.

Tubie or not tubie: Izzy’s tube feeding story

For those who haven’t known us through this journey, I’m aware that the the story sounds very much like Dan and I took on all the work and stresses ourselves. The truth of it was so much more community focused. Our immediate families were incredible, from having little Lauren to stay so we could get used to tube feeding at home, to bringing her into hospital to visit mummy and Izzy. Soooo much food provided by my mum and mum in law. But it didn’t stop at family as close friends from church came alongside us and fed us, looked after Lauren at a moments notice or dropped everything to take me and Izzy to hospital. An amazing community nurse saw me struggling and arranged respite care to allow me to have some special time with Lauren. All Stars Childcare welcomed Izzy with open arms along with her feeding tube and pump. It really does take a village to raise a child and we’ve been part of the best village ever, and still are!

Someone recently described Izzy getting her tube out as a ‘miracle’ which felt a bit strange, as I had been thinking it was just the obvious next step when someone hasn’t been using their tube. But then I realised that it is a miracle, not an instant moment of healing but a very slow and gradual miracle journey, with God using various equipments, clever minds and generous hearts to help achieve this long term miracle. This girl, who was tube fed her entire life from 2 hours old, didn’t eat or drink a thing until over 1 year old, was weaned onto crisps, and expected by some to always need a feeding tube, now enjoys a varied diet like any other child. That’s a miracle to me, and we thank God for this and the other obstacles she’s overcome every day. We don’t know what the future holds but are so happy to be tube free for the time being, whilst also being acutely aware that for many children and adults tube feeding is a lifelong reality. This journey has forever made me more aware and sensitive towards those who eat and drink differently, and the amazing life saving reality that is tube feeding. Breast, bottle or tube: fed really is best. It keep babies (and children and adults) alive where they wouldn’t have survived in previous generations. As much as the tubes and machines caused us pain and frustration, the truth is that they saved my baby’s life, and without them she wouldn’t be here today, enjoying her Auntie Ju’s homemade dairy free Rocky Road (see below). With or without a physical tube, Izzy will always be my tubie baby, and I’m forever thankful for all the journey has taught me.

Tubie or not tubie: Izzy’s tube feeding story
Tamsin Kingsley

Tamsin Kingsley

I am a 33 year old living in Leeds with my husband and two children. I am a full time mum and carer to Lauren, 7 years and typical, and Izzy, 5 years with Down's Syndrome. Izzy has complex health needs mostly due to her low muscle tone, and struggles with feeding and breathing, resulting in tons of appointments and hospital admissions. Both children are happy and full of life, and our family all love each other very much.

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