See that little green tube there? In among all the rest that is... The one coming out of her mouth?
That is Ruby, barely a couple of days old and that little green tube (in among all the rest that is) is what we nourished her with, and would continue to use to nourish her, and her sister, for almost 7 weeks of their lives.
when they were first born the tubes went in through their mouths, like you can see above. This was to give room for the CPAP etc to go in through their noses (and other reasons) but once the breathing support had ended those little green tubes went in through their noses instead, and would stay there for weeks. To feed them we would unclip the little cap at the end of the tube, hook up a syringe full of milk (measured out to the exact ml - 5mls for Ruby at this stage but it seemed like alot because just days earlier she had started on 1ml every 8 hours), give it a little push with the syringe, pop out the pusher part and let it drain into her. Hold it higher - it would go fast, hold it low, it would flow slow. Too fast and she would puke, too slow and you would want to stab a fork in your eye as your arm went numb from holding it.
By week 2, Simon and I had this process down. We took turns visiting NICU, and later SCBU, and we would do every feed. We started with Poppy, did her cares while her milk warmed, and then fed her. After that we would start on Ruby. It was all meticulous and jotted down. Two hourly, then Three hourly and finally four hourly before they left hospital.
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This week is Feeding Tube Awareness Week, and although our story of feeding tubes ended a couple of days before the babies left hospital, way back last August, for many people the story doesn't end there. For many people tube feeding becomes a way of life. Sometimes for months, sometimes years, sometimes forever.
To following is a first for the blog - a guest post! This story is from another wonderful multiple mum about her tubal feeding story and one, so far, that hasn't ended. Thank you Rebecca for sharing the story here.
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My identical twin girls were high risk from 13 weeks, they weren't supposed to survive – but they did. Growth of one twin slowly increased whilst the other shot ahead in leaps and bounds, the pressure to terminate our slow grower was immense but we fought for her and she did her best making it to a gestation of 31 weeks 5 days.
Straight after the emergency c section both girls were whisked away to NICU in incubators and put on Cpap and nasal gastric tubes, or 'NG tubes', were placed in their mouths and down into their stomachs. Being so small (1070g and 1770g) they were not big enough to keep themselves warm or eat. So expressed colostrum followed by expressed breast milk was put down the tube to help them grow.
By the end of week one the NG tubes were in their noses, Zoey had issues with breast feeding and wound up being discharged just after a month old on bottles of expressed milk. And at three months old she started breast feeding which went right through till 18 months. A great eater, a great sleeper – a real healthy child despite her tiny start.
Our smaller twin Maya on the other hand was a different story, after a week she went into heart failure but weighing barely over a kilo the best they could do was a patch job and hope she survived to 3kg so they could perform bypass surgery. I had tried a couple of times to breast feed but she was just too small, and after the heart failure it was a strict regime of no oral feeding as they didn't want to tire her and burn calories – they wanted her to grow. Minimal handling meant the only job I really had was expressing and gravity feeding her small amounts of milk and additives laden with extra calories. The tube kept her alive, and despite the ‘patch job’ failing at 1.5kg the second patch held until 3kg.
Once we returned from surgery with her mended heart they gave her to me and said right – feed her. She was three months old and had never learnt. Not only was she not interested, she didn't know how to feed, and the continuous pump feeds meant she wasn’t hungry. One day before discharge she turned blue and stopped breathing. She was resuscitated and they shifted the tube from her stomach down into her bowel creating an NJ or, 'nasal jejunal', tube. This was to prevent her from choking on vomit.
We went home and months passed, the NJ would be pulled out by one twin or another and we spent days all up waiting around in emergency rooms to have it reinserted under Xray. It was painful. The transition to continuous NG feeds were a welcomed gift but suddenly we realised we have this one year old who has never managed to eat or drink. What were we to do?
Getting her Mickey Button in 2011 / GJ button.
At 13 months old Maya was fitted with a 'mickey button' or G (gastric) tube. A plastic button straight into her stomach we could hook her tubes and pump up to in order to feed her. As well as this a surgery called fundoplication was performed where by they tightened the top of the stomach to prevent her vomiting/refluxing. It was so incredible to finally see her beautiful face not covered in tape and tube. We remained on continuous feeding 22 hours a day into the stomach and we had to carry around not only her (and her twin) but a heavy purple pump stand. With crawling babies and little fingers – it got difficult very quickly. But for whatever reason she ate, just puree no milk or anything but she managed to match her sisters intake and we thought there was perhaps an end in sight to our tubie days.
After a few months she broke the fundoplication and started to vomit profusely again. She would choke in her sleep and despite our desperate please for help nothing happened until she aspirated into her lungs and was admitted on oxygen and IV antibiotics with aspiration pneumonia. At this point they decided the only thing to be done was stop oral feeding (which she had done herself) and change her G tube or mickey button into a GJ tube or gastric jejunal tube which bypasses the stomach and feeds into the bowel 23 hours a day.
Maya and her pump.
More months passed and after a re do fundoplication, another fundo failure and a lot of vomit it was decided to stay on GJ tubes and avoid using her stomach. As she has gotten older we have tried hard to encourage eating – her twin is a great role model. But Maya just isn’t interested and chokes freely. She has worn a backpack and towed around a suitcase containing her milk and pump for two years now, feeding 23 hours a day into her bowel. And despite not using her stomach for much for than a nibble she still manages to choke and vomit bile frequently. She now has to sleep with a bile bag on free drainage to empty her stomach as she sleeps so she doesn’t aspirate. They don’t have a lot of answers; chronic dysmotility, gastro oesophageal reflux disease and small intestinal bacterial overgrowth are all mentioned but overall we don’t really understand why she can’t process food properly.
After 219 nights in hospital in nearly 3.5 years doctors are now just looking to leave things alone and keep her hospital free for a year before we look at making any changes like trying to use her stomach for feeds or encouraging oral feeding. It’s hard, especially with twins as Maya still wants what Zoey has – she just won’t eat it which feels shamefully wasteful at times but we try focus on the nibbles she does have. She’s a beautiful ‘normal’ kid with many complexities – cerebral palsy and epilepsy on top of her gastric issues. Our hope is that one day she won’t need her feeding tube to keep her alive, but for the mean time we are happy to do whatever needs to be done to help her grow.
The gear - her backpack suitcase with the pump inside.
Maya is currently GJ fed 23 hours a day; she carries a backpack all day and is attached to a suitcase all night. The pump frequently alarms whether it be kinked tubes from her being so mobile or air in the line from her laying down with the pack. It’s heavy, and it’s irritating and at times I would like nothing more than to run the pump over with my car. Her stomach is drained of bile all night and we have to flush her tubes four hourly through the day to prevent it becoming blocked. A new GJ button means a trip to hospital and hours waiting in ED before the radiologist consultant can get a team together to put it back in. If we happen to need a new one on the weekend forget it – we are admitted on IV fluids and unable to feed her until the week staff are back on Monday. It’s hard, but she is worth it.
Feeding tube awareness week is incredibly important; these tubes keep our children alive in some cases. NG and NJ tubes, G and GJ buttons – we have covered the bases and know how important each method is. All used for different reasons. So never judge a tubie by first appearances, don’t feel sorry for us parents. Because beneath the tape, tubes and plastic my daughter has always been imperfect perfection – and I feel very very lucky to have been chosen to be her mum.
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