Tube feeding at home: what parents keep track of, and why

Many premature babies go home before they can take all their feeds by mouth. A nasogastric tube tops up whatever doesn't go in from the bottle or at the breast. At home, you become the people who keep track of it. This article covers what parents usually write down and why the team asks for it.

One thing first: how to check, place or flush the tube is something you learn from your hospital or community nursing team. It differs between hospitals and between babies. This article is only about the record-keeping.

The plan: ml per kg per day

Hospitals usually express the amount of milk in millilitres per kilogram of body weight per day, then turn that into an amount per feed. A worked example: at 160 ml/kg/day and a weight of 2.5 kg, that's 400 ml a day. With eight feeds a day, every three hours, that comes to 50 ml per feed.

Because your baby is growing, the plan keeps changing. Every few days or every week it's recalculated, often after a weigh-in. So it's worth noting which weight the current amount belongs to.

What to log for each feed

For every feed, a few details help the team.

• Time. Start or end of the feed? It doesn't matter much, as long as you're consistent. Most parents note the time the feed finished.
• Total amount. Everything that went in, by mouth and by tube together.
• By mouth. How much came from the bottle or the breast. With breastfeeding this is harder to measure. Some teams have you weigh before and after, others go by duration or just ask whether it went well.
• By tube. What was left and given through the tube: the total minus what your baby drank.
• Anything notable. Spit-up, hiccups, lots of wind, falling asleep while drinking, being unsettled. A few words is enough.

Why the oral share matters most

The aim of tube feeding at home is usually for the tube to come out eventually. So the team doesn't just look at the total. They look at how much your baby takes by mouth, and whether that grows over days and weeks.

One feed tells you very little. A baby who's tired at three in the morning drinks less than after a good sleep. It's only when you add it up per day that the line appears: 45% by mouth on Tuesday, 60% on Saturday. That line helps the paediatrician, dietitian or speech and language therapist decide when the tube can be weaned.

What else to keep track of

• Diapers. Wet diapers give a sense of how much fluid your baby is getting. Dirty ones say something about digestion. Hospitals often hand out a stool colour card. With pale grey or white, red or black stools, contact your doctor.
• Spit-up. Some spitting up is normal for babies. It still helps to know how often and how much, especially if the team asks whether it's getting worse.
• Weight. Weighing at home usually isn't expected unless the team asks for it. Often a community nurse or the baby clinic does it. Write down the result and the date. Weight is plotted on a growth chart: often the Fenton chart for premature babies first, and later the WHO chart by corrected age.
• Medication. Medicines given through the tube or with feeds, with the time and who gave them. With two carers, that prevents a double dose or a missed one.

Keeping track as a pair

With tube feeding, most parents work in shifts. That makes it important that you both write things down in the same place. A shared notebook by the cot works; so does a shared note on your phones. What matters is that it's clear what the other person did while you were asleep. At handover you want to know in a few seconds when the last feed was, how much went in by mouth, and whether the medication has been given.

What you don't need to do

You don't need to draw conclusions. Keeping a record is about giving the team an honest picture. Whether the amount should go up, whether the tube can come out, and what to do when your baby drinks poorly are decisions the team makes with you. If you're worried in between, call the number you were given at discharge.

Sources and support

• Your own hospital's or community team's instructions. They always come first.
• Fenton TR, Kim JH. A systematic review and meta-analysis to revise the Fenton growth chart for preterm infants. BMC Pediatrics, 2013.
• World Health Organization. WHO Child Growth Standards, 2006.
• Parent organisations for premature babies, such as Bliss in the UK or the VOC in the Netherlands, for contact with other parents.

About Hidje

We logged our son's feeds in a notebook at first, and later in Hidje. For each feed you enter how much went in by mouth, and the app works out the tube amount. Patterns shows the daily total and the oral percentage, and a report lets you bring the overview to an appointment. The plan and the decisions stay with your care team.