Life with a heart child is challenging in itself. But sometimes we get an extra challenge in the form of feeding issues. Feeding issues are not uncommon in babies that have had such a traumatic start to life. In our case, James was a month old before he started breast-feeding. Initially he took to it quite well and everybody was happy with him. He then contracted a virus (Influenza A) which made him very sick. He was too tired and congested to feed effectively and in my opinion this was the major cause of him requiring the naso-gastric tube long term.
Although nobody wants their baby to have a naso-gastric tube, sometimes it actually takes the pressure off parents in the sense that you don’t have to stress over how much they’ve drunk each day. Will they be hydrated? Will they gain weight? If your baby goes home with a naso-gastric tube, some of the following tips may be of some help.
I would like to preface this document by saying that the content herein is not professional medical advice or opinion, but that from a mother of a child with a CHD.
Changing the Tube: Firstly, consider changing the tube yourself if you are not already. Some people may never be comfortable with this and it is by no means a pleasant experience. But what made up my mind was the thought of making a trip to the hospital in the middle of the night to have another tube placed if James pulled his out (and he did pull them out). I also felt that if anybody were going to put the tube in, his own Mother would probably be much gentler than others that do it as part of their job every day would.
Use a second person to help place the tube. Make sure this person understands fully what is about to happen so they can help you best. My husband would hold James’ head still whilst pinning down his arms for me. That gave me two free hands to feed the tube in, check it’s position and get the taping done.
It is best to change the tube once a week. Try to choose a day when there is somebody else home to assist. Perhaps a weekend is best.
Taping the Tube: An important aspect is the taping of the tube. By the time your baby goes home you’ve probably got the hang of the tapes but I must say it was an ever-evolving art for us. As James grew and so did his dexterity, we found ourselves faced with the challenge of taping down a tube so there was no way little fingers could get under it. We would use Comfeel or Duoderm directly on his cheek (see the reason below) and place the tube down over this, fixing it with Tegaderm. I would cut the Tegaderm to shape so that I could tape all the way from over his nose, firmly down in the crack at the side of his nose, all the way up his cheek and up to the top of his ear. I would then take the tube down behind his ear and fix it with a couple of pieces of Fixomil/Me-Fix behind his ear. That way, waving arms would never accidentally pull the tube. And intentional fingers couldn’t get a grip on it without reaching behind the ear and even then, it was fixed down firmly.
Using the Tapes: I was advised there was a suspected risk of Bell’s Palsy in children with an NG tube. The nerve that is affected in Bell’s Palsy runs across the cheek in the same place as the tube is placed. Although there is no evidence of this occurring, it is best to avoid the risk altogether. Duoderm or Comfeel can give the required cushioning between the cheek and the tube and they are much kinder to the bare skin than Tegaderm. There are other fixing tapes but none that stick as well as Tegaderm. In younger babies, they don’t need to be stuck down so well but once you’ve had a baby pull out a tube, you want to stick it down well.
If before the tube is due to be replaced, the tape starts lifting, it is best to re-tape it before little fingers can get underneath. I had some tubes that had five or more layers of tape on them as each one lifted. But I didn't want to risk an unnecessary tube re-placement.
Litmus Paper (Check the Tube Position): Always check that the tube has been correctly inserted into the stomach, with Litmus paper. This verifies the presence of stomach acid when drawing back a stomach sample. Some people check the tube placement with a stethoscope but our Care Manager in Melbourne said that a mis-placed tube (in the lungs) makes the same sound as a tube in the stomach.
Tucking the Tube Away: During the day, between feeds I would tuck the tube down the back of his clothing. This kept it out of the way very well. Otherwise he wanted to chew it and tug at it. However, during the night it was best to leave it accessible so I didn’t have to disturb him for tube feedings. I would tuck it between the buttons of his nightwear.
What Size Tube?: Use the right size tube for your baby. They may start on a small tube (size 6) but as they get bigger they can have a larger tube (size 8) which makes the feeding process much quicker.
Feed Speed: Some babies need the feed to be given very slowly so as not to vomit whilst others can tolerate a quick feed.
Feeding Pumps: Some parents use a Kangaroo Pump overnight. I have no experience with these. Some professionals feel they are unsafe. If a child pulls their tube or it moves and the feed continues, it could potentially pump into their lungs.
NG Tube & Tape Supplies: Your local hospital may supply all your tubes, tapes and syringes for free. We never paid for any of these things but I did have to ask for them.
Feeding Equipment: Try every type of teat, bottle, cup etc you can within reason. There are some very good crosscut or fast flow teats for the lazy drinkers and some slow flow teats for those that have trouble swallowing. I used every shaped teat on the market and then moved to spouts. James could drink from a spout but chose not to.
Don’t forget to try a straw with the older baby. At 8.5 months old, we tried James with fruit juice poppers. We would put the straw in his mouth and squeeze the box until he got fluid in his mouth. He started sucking the straw the same day we introduced him to it. We were concerned about him drinking only juice but in the end the Paediatrician said juice orally is better than milk in the tube. It was a challenge to get enough dairy products into him in the form of solids to ensure his calcium intake but it was much better than keeping the tube. The day before he turned nine months old, on the advice of the Paediatrician, we removed the tube and it never went back. Sometimes, when the baby is old enough, the only way to get them to drink is to make them really thirsty. But this is a risky procedure and must be done under the supervision of a Paediatrician or nurse. If you look for all the signs of dehydration though, it can be done safely.
James has never drunk milk and still lives on juice as his only fluids.
Night Feedings: If you have to tackle night feedings, be sure to take a book or something to try and keep you awake. When your baby is sleeping soundly and you are really tired, it’s easy to fall asleep whilst feeding and spill a syringe of milk all over their bed. Make up formula in advance. The last thing you want to do is mix up a bottle in the middle of the night. If you are expressing then make sure there is always a bottle ready when you need it.
Expressing your Milk: If you are expressing your breast milk then you are doing the very best you can for your baby. In the hospital your milk will be fortified with calories, carbohydrates, fats and protein. Some women can successfully express their milk whilst feeding with an NG tube for many months. Others never really have much success. What is important though is to get appropriate help (especially in the hospital). Lactation Consultants can give you help with the breast pump and tips on increasing your milk supply if it is not sufficient. Electric Breast Pumps can be hired through your hospital for use at home.
Help, Support & Guidance: Speech Therapy can also help with feeding difficulties. Find out through your Paediatrician what help you may be entitled to. Some states offer free therapy through the state-run services. You can have a Speech Pathologist work with the baby regularly and you can also attend Multi-discipline Feeding Clinics with a Physiotherapist, Occupational Therapist, Speech Pathologist, Paediatrician and a Dietician.
Ask for support. Talk to your Paediatrician, Cardiologist, Clinic Sister or anybody else that can give you direction with getting rid of the tube.
A Dietician at your local hospital may also provide you with lots of information about your baby’s nutritional needs (frequency, type and volume of feedings). It is not uncommon for heartkids to struggle with weight gain. Your Dietician can help you with ways of maximising calorie intake per feed.
Support groups are a great help in these situations. Whether you join online groups and email your questions to receive dozens of responses from parents going through the same things you are, or whether you join a formal group locally. Don’t be afraid to ask questions and try different things.
Oral Feeds: It is very important to continue with oral feedings despite requiring the NG tube. Always offer the oral feed before you put the milk through the tube (if the baby is awake). It is important to capitalise on any hunger the baby may have. Don’t worry if you can’t offer the milk orally every time. But if your baby is doing really well, then the more they drink themselves, the closer you are to taking out the tube.
Always encourage the solids intake. Sometimes poor drinkers will be great eaters and they can get all their fluid needs through solid foods. Custard can be made with formula. Cereal can be made with formula several times a day. Fruit Gels and yoghurts are another great source of fluid. So too are ice blocks (formula, juice or water).
Drinking Whilst Asleep: I’ve heard of others that feed their babies orally whilst the baby is asleep. For some, the only way they can drink without tiring is whilst asleep.
Bonding with your Baby: You can still bond with your baby whilst giving a tube feed. I would get myself all set up with everything I needed for the feed then sit in a comfy chair giving my baby a cuddle just the same as if I was breast-feeding and then tube feed that way. We could still look at one another and talk this way.
Flushing the Tube: Flush the tube with cold boiled water (5 – 10ml) after every feed or medication. That way you keep the tube free of milk and make sure the full dose of medication makes it to the stomach.
Reflux: If your baby suffers with reflux (this is not uncommon) it may help to feed the baby in an upright position or even whilst the baby sleeps. With an older baby not requiring feeds exactly to the clock, you can time it with their naps. I did this quite successfully with James.
Elevate the baby’s bed too if they suffer with reflux. An elevated bed also helps with their circulation after the BCPS.
Try thickening the feeds. This can help enormously but it does make for a very slow feed through the tube. Thickener is available from most Pharmacies.
Altering the Feeding Schedule: It is possible to alter the feeding schedule of the older baby but always check with the Clinic Sister or Paediatrician. Usually, the total fluid intake for the day is more important than the exact time they get the feed. When trying to get James to eat and drink, we slowly cut down on the daytime feedings and gave the balance during the night. This way he was hungrier in the day and would respond to that hunger.
Allergies to Tapes/Sore Cheeks: Some children have skin allergies to the tapes. James would have very sore, red cheeks. We always left the tube in one side for a week giving the other cheek maximum time to heal. There were times when a steroid cream was also required (see your GP) to help repair the skin. At the very least, use plenty of good moisturiser (see the Pharmacist) on the cheek that has no tape. And use tape remover (available through the Chemist) to loosen the adhesive rather than just ripping it off.
A Break from the Tube: As much as we love our babies, tube or no tube, it is nice to have a break sometimes. This is much harder with the younger baby but as they get older, give them a few hours break before putting the new tube back in each week. This makes a great time to get professional portraits done too. I’ll never forget the day we fed James then removed the tube and took him to the Hunter Valley for lunch. It actually felt odd to not have people staring into the pram. I wanted to tell everyone just how special he was since it was no longer obvious.
Always Travel with a Spare: Keep a spare tube, tape and Litmus paper in the nappy bag. You never know when you’ll be out one day and they’ll pull out their tube.
People asking Questions: We will all experience the questions or glances of well meaning friends and strangers. Some days I thought I would scream if one more person asked, “What’s wrong with him”. Other days, I welcomed questions. I was proud to tell people just what a fighter my little boy was. It’s good to have a standard response that you feel comfortable with. You can always elaborate if you wish. I would always have preferred somebody ask me what the tube was for than just stand there staring. And when you are asked the question, “How long will they have to have it”, don’t strangle the person asking the question. I always responded with, “He’ll have it until he learns to drink enough”. Or “He won’t go to Kindergarten with a tube”.
Medications: Give medications orally sometimes. It’s important that the baby learns to take these and the tastes (albeit unpleasant) become familiar. You’d hate to get them drinking and pull the tube out only to find they won’t take their necessary cardiac medications.
Gastro-Intestinal Disorders: Make sure you seek advice if you think your baby is having trouble swallowing or digesting their feeds. Sometimes gastro-intestinal disorders occur in these children.
Thickening Feeds: If your baby is having some trouble swallowing then try thickening their drinks. Thickeners are available from most Pharmacies.
Conclusion: Just have faith that one day your baby will lose their tube. Whether it is when they are 1 month, 3 months, 6 months or 12 months, they will learn to eat and drink on their own. Some children may need a Gasterostomy tube (a permanent tube in the tummy) but it appears that in Australia, if the child is making some progress with solids and/or fluids orally, doctors are reluctant to place this type of tube. It does require a General Anaesthetic and is a surgery in itself. Sometimes however it is the best thing for the child and life with a Gasterostomy tube is certainly easier than a naso-gastric tube although I have no actual first hand experience. And a gasterostomy tube can always be removed when the child is eating and drinking on their own.
If I can be of any further help or support, please do not hesitate to contact me by email: firstname.lastname@example.org or by telephone: 08 9361 1314
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