Feeding Babies with Congenital Heart Defects
Naso-Gastric Tubes & Feeding Issues - from Joanne
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.
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.
Replies to This Discussion
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Permalink Reply by The Lobos on -
Feeding challenges for infants with congenital heart disease
Katherine Frontier, MS, CCC-SLP, speech-language pathologist, Masters Family Speech and Hearing Center, Children's Hospital of Wisconsin.
Infants with congenital heart disease (CHD) often have several hurtles to overcome following cardiac surgery. Even with improved cardiac function, one of the most natural, but challenging tasks for infants is reaching safe and efficient oral feeding. Failure to thrive in this population is well documented in the literature; therefore, maximizing nutrition is a primary objective of the medical team. Due to surgical needs, initiating oral feeding is delayed in some populations of infants with CHD. Infants then miss this instinctive period in establishing feeding patterns. Attaining the strength and coordination of sucking, swallowing and breathing as well as the endurance for safe feeding often is a barrier that may delay hospital discharge. Families describe this period of time as frustrating and in some ways more challenging than the surgery itself.
There often are several factors that impede feeding success for an infant with CHD. These include decreased endurance, early satiety and decreased hunger drive and other associated factors. As a general rule, an awake, alert infant should be able to take a full feeding in less than 30 minutes. Infants with CHD often tire quickly, preventing them from completing full volume feedings by bottle. When feeding takes longer than 20-30 minutes, the infant likely is using an inefficient feeding pattern, further expending unnecessary energy. The infant may show hunger readiness cues (crying, rooting, organized non-nutritive suckling) but fall asleep within a few minutes of beginning feeding, preventing adequate volume intake required to gain weight. Often, caloric density of formula is increased to decrease the volume needed for growth and supplemental gavage feedings may be needed to complete volume.
A bedside clinical feeding assessment by a speech language pathologist of the infant's oral-motor function, coordination of sucking, swallowing and breathing will provide valuable information regarding the ability and safety during feeding and allow development of an individualized bedside feeding plan. Heart rate, oxygen saturations, respiratory rate, breathing pattern at rest and during feeding are important physiologic factors to consider. Tachypnea may lead to decreased coordination of sucking, swallowing and breathing. Without intervention, this may lead to swallowing dysfunction. Giving the infant imposed breathing breaks offers the opportunity to pause, swallow and re-organize breathing before proceeding with the feeding task.
Other associated factors may impact feeding skills. Vocal fold injury can be a post-operative problem and may be one potential source for post-operative swallowing dysfunction. Vocal fold dysfunction may influence or prohibit total oral feeding. Vocal quality should be monitored. Gastrointestinal motility, including gastroesophageal reflux, can further complicate an infant's overall feeding pattern. Infants with associated conditions such as Trisomy 21, DiGeorge Syndrome and CHARGE syndrome may have additional complications impeding feeding success.
Investigators at the University of Pennsylvania currently are measuring feeding performance and energy expenditures over the first year of life in infants who have undergone cardiac surgery in the first month of life. This study proposes to "establish which aspects of feeding performance (suck, swallow, breathe coordination, temporal patterning of sucking with meals, suck pressure generation, adaptation to variation of flow rate) are most subject to disruption in CHD infants after corrective or palliative surgery. The results of this investigation could prove useful in determining feeding methods and techniques as well as to further define why infants with CHD have feeding difficulties.
FISH testing for 22q11 deletion often is used indice of feeding issues as many patients with this deletion have abnormal palates that can contribute to feeding problems. Therapeutic techniques including nipple changes, positioning, oral stimulation and/or environmental modifications may maximize efficiency of feeding and safety of swallowing. Ultimate success in oral feeding is best met by a child centered team approach including the family, primary physician, cardiologist, nurse practitioner, speech language pathologist and dietitian. Consistency in following the established feeding plan by this core group of caregivers may contribute to a more timely attainment of oral feeding.
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Permalink Reply by The Lobos on
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Feeding the Neonate with Congenital Heart Disease
Sandy Wesolowski, RN, Pediatric Intensive Care Unit, Children's Hospital of Wisconsin
Infants with significant cardiac lesions frequently are difficult to feed. Therefore, about 50 percent are at risk for failure to thrive during their first year of life, even after surgical correction or palliation of their defect.
Many factors contribute to the poor feeding patterns of these infants, including fatigue, working hard to breathe, neurologic insults and delayed gastric emptying.
Barbara Medoff-Cooper, RN, PhD, at the University of Pennsylvania School of Nursing studied these infants using a bottle with a specially designed nipple for measuring the force generated by infants' sucking force. This device has helped identify specific feeding patterns needed for optimal growth. For example, a normal, full-term infant is able to generate a 300 mm to 400 mm Hg suck for a sustained period, while some infants with an interrupted arch are unable to generate 50 mm Hg even in isolated bursts.
It is important to begin enteral feeding as soon as possible after surgery. This not only maximizes the infant's growth potential, but also has been shown to decrease nosocomial infections.
Infants' weights should be monitored daily and their caloric expenditures conserved. For example, using a radiant warmer rather than a crib will decrease the amount of calories the infant needs to expend to maintain body temperature, thereby increasing the calories available for growth.
The early introduction of a pacifier may help stimulate the sucking reflex and make sucking a pleasurable, satisfying experience for the infant. Also, limiting the time food is given by mouth to the first five to 10 minutes of feeding, then gavage feeding the remaining amount, will decrease the infant's workload.
Delayed gastric emptying also potentiates poor feeding. Optimizing gastric emptying with positioning, as well as with drugs such as cisapride, may be necessary. Reducing the amount of narcotics also will decrease factors limiting gastric motility, but care also must be taken to keep the infant comfortable during the postop period. Tylenol can be beneficial.
We can play a vital role in meeting the nutritional needs of these infants. By closely monitoring their caloric needs and minimizing unnecessary energy expenditures we can promote positive growth and development.
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Permalink Reply by Katie on -
I wanted to add for those mothers who may be in America and reading this, it is not recommended to give a baby juice until the age of 6 months and even then it should be half juice half water and should always be 100% juice (not a cocktail).
Also wanted to add, there are "30 day" tubes that are good for a month, or even longer if you flush them properly.
Also, we have always used a feeding pump and were actually told not to feed with a syringe because a human can not determine the flow rate as accurate as a pump. Pumps are set to the amount and the rate at which it is to go in. It accurately measures the amount and gives the same amount each minute throughout the entire feeding. I don't recommend leaving a baby unattended while on a pump, though. And, believe me, if the tube comes out you will know...your baby will scream because they will be getting all wet and their belly will not be getting full. And, it is extremely difficult for a tube that is inserted properly to move into the lungs... the x-ray technician showed me once just how difficult it is. The tube would actually have to come back up all the way into the back of the throat and then move over into the airway. It would take force.
Also, it says to always encourage solids intake... only if your child is old enough and has had a swallow study to make sure they are not going to inhale the solids. Make sure you ask a doctor first.
We have tube fed since the day Auriana was born 6 months ago. She can not take a bottle because her mouth is too small and even a preemie size bottle nipple will fill her mouth and cause her to gag. Just wanted to share what I have learned from this experience.
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Permalink Reply by The Lobos on
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Feeding Your Infant With Congenital Heart Disease - From The American Heart Association
http://www.americanheart.org/presenter.jhtml?identifier=4885
Feeding your baby is challenging and rewarding. Feeding provides nutrition for your baby's physical and mental growth. It's also an opportunity for you to love, touch and communicate with your baby.
When your baby gains weight steadily and is content and thriving, it's reassuring and rewarding. But if your baby has congenital heart disease, you may have to use different feeding methods. A baby born with a heart defect may not gain weight as rapidly as other infants, despite your hard work and persistence. This Web site provides information to help you cope with your baby's feeding needs.
Your Baby's Growth
If your baby has a congenital heart defect, it means the heart or blood vessels near the heart didn't develop normally before birth. Often the term congenital heart disease is used to mean the same thing.
Healthy babies usually double their birth weight between four and five months of age. A baby with a congenital heart defect may grow more slowly during infancy and childhood. Growth often varies according to the type and severity of heart disease. An eight-ounce to one-pound gain in a month may be an acceptable weight gain for a baby with a heart defect. Infants and children with congestive heart failure or cyanosis (blueness) tend to gain weight slowly.
Congestive heart failure occurs when the heart muscle is doing extra work and can't easily meet the body's needs. It doesn't mean that the heart "fails" to beat. Congestive heart failure is usually treated with medicines that help to strengthen the heart muscle's pumping and get rid of excess fluid in the body. Babies with congestive heart failure may grow in height but gain weight slowly.
Some factors related to congenital heart defects that can interfere with growth include:
- rapid heart beat
- poor appetite
- greater caloric needs associated with a heart defect
- decreased food intake due to rapid breathing and fatigue
- frequent respiratory infections (bronchitis, pneumonia)
- poor absorption of nutrients from the digestive tract
- decreased oxygen in the blood (hypoxia)
A baby's growth also may be influenced by hereditary or genetic conditions. The most common reason for poor growth is that the baby isn't taking in enough calories or nutrients. But even if your baby seems to drink enough formula or breast milk, he or she may still gain weight very slowly.
You don't need to try to weigh your baby often at home. Babies gain or lose weight from day to day since their appetites vary. Your baby's pediatrician or cardiologist will weigh your baby with each office visit on the same scale, usually once a month. These weight measurements will show how well your baby is growing.
How To Feed Your Baby
Before your baby was diagnosed with a heart problem, you may have already decided to either breast- or bottle-feed. Both these methods work well for babies with heart problems, but it's important to be flexible about your feeding method. Some breast-fed babies may require nutritional supplements. Some babies with heart disease may also require feeding supplements of formula or breast milk through a feeding tube. These ways to feed your baby will be discussed in the next few sections of this article. Healthcare professionals will help support your decision to bottle- or breast-feed your child. Flexibility in feeding schedules and methods is important for children with congenital heart disease.
Breast-feeding Your Baby
You probably decided how you were going to feed your baby before he or she was diagnosed with congenital heart disease. You may have wondered if you'd be able to breast-feed your baby. Not only can you breast-feed, but breast milk will actually benefit your baby.
If your baby is diagnosed with a congenital heart disease either before or immediately after birth, you probably won't get the opportunity to nurse your baby at delivery. You'll need to start pumping your breast within the first 12 to 24 hours after birth to maintain your milk supply. You should use a hospital breast pump and pump every 2-3 hours for the first week. Once your milk supply is well established, you can decrease pumping to 4-5 times per day. You may want to consider renting an electric pump for home use (see Appendix II).
If your baby needs surgery after breast-feeding has been established, you can pump your breasts to maintain your milk supply during times when your baby is hospitalized and can't nurse.
How will breast-feeding help my baby?
Breast-feeding offers many benefits. Breast-feeding creates a special closeness between you and your baby and is the best nutrition for your baby. Breast milk is the perfect food for your baby's growth and development needs; it's easier to digest than formula and also contains antibodies that help your baby fight infections.
Isn't breast-feeding too much work for my baby's heart?
The "work" of breast-feeding is actually less than the "work" of bottle-feeding. Sucking, swallowing and breathing are easier for a baby to coordinate while breast-feeding. The amount of oxygen available to your baby is greater while breast-feeding than bottlefeeding. Your baby's heart rate and breathing are more normal during breast-feeding. Compared to bottle-fed babies, breast-fed babies with congenital heart defects grow better.
How can I keep up my milk supply when the baby can't breast-feed?
You'll need to pump at the hospital and at home. If your baby is a newborn, you'll need to pump 8 to 12 times a day (every 2 to 3 hours). If your baby is older, you'll need to pump as often as the baby was nursing. Remember to drink at least 8 glasses of fluid a day.
How long will I have to wait before I can breast-feed?
Depending on your baby's cardiac and respiratory status, it could be several days to several weeks after surgery before you can breast-feed. Sometimes after surgery, babies are fed through a feeding tube. Your baby can get breast milk that you've pumped through this tube.
What can I do if my baby falls asleep every time I try to feed him or her?
Often after surgery your baby will remain sleepy and may not seem very interested in eating. The more time you can spend at the hospital holding your baby and offering the breast, the sooner your baby will learn to breast-feed. You may need to watch for feeding cues. These are signs that your baby is ready to eat, such as body and mouth movements, eyes opening and bringing hands to the mouth. Babies feed best when they're awake but before they're crying. Some babies need to be unwrapped and stimulated by gently massaging their feet or back to awaken them for feedings.
Will my baby need any formula supplement?
To increase your supply, nurse your baby more often. If your baby is too weak to suck or isn't interested in nursing, you can continue to pump after offering the breast and give your baby expressed milk by bottle or tube. Your baby will be able to receive all the benefits of breast milk even if he or she isn't breast-feeding.
Once my baby is breast-feeding, how can I tell if he or she is getting enough?
Your baby is probably getting enough milk if you're nursing 8-12 times a day, the baby is latching on well and you can hear the baby gulping and swallowing. Your baby should have at least 6-8 wet diapers per day. A consistent weight gain will also tell you that your baby is getting enough milk.
If you have questions or need help with either pumping or getting the baby latched onto your breast, contact a lactation consultant. Before you're discharged from the hospital, the lactation consultant will watch you breast-feed your baby to make sure it's going well.
Formula-feeding Your Baby
Before your baby was born, you may have already decided to bottle-feed. This method may provide a little more flexibility, particulary if your child remained in the hospital for treatment after birth. Bottle-feeding also allows the baby's father and other family members to become more active in feeding the baby. Breast-fed babies may also receive formula supplementation through bottle- feeding at home or in the hospital. Healthcare professionals will help support your decision to bottle- or breast-feed your child. Flexibility in the feeding schedule and method is important for a child with congenital heart disease.
Babies with congenital heart disease typically do best when fed more often and on a demand schedule. They tend to tire quickly during the feeding, so frequent feedings tend to work best. Initially, feeding your baby every two hours may be best, and you may find that you need to wake your baby at night several times to feed until he or she is able to tolerate a larger volume of formula less often. Some infants do best with a combination of breast- and bottle-feeding. (Please refer to breast-feeding section.)
How much is enough?
All infants are individuals, and they vary in how much formula or breast milk they take per feeding. Try not to compare the amount of formula or breast milk your baby takes to the amount other babies take.
The goal for feeding an infant with congenital heart disease is consistent weight gain. Most babies gain 1/2 to 1 ounce of weight per day. However, babies with heart disease tend to gain weight at a much slower rate. The pediatrician and cardiologist will assess your child's weight at each visit and make recommendations regarding the feedings at that time.
Babies with heart disease may not be able to tolerate a large volume of formula. They also tend to require more calories to grow than the average infant. Each ounce of formula or breast milk usually contains 20 calories. Your doctor, nurse or dietitian may recommend increasing the amount of calories in the breast milk or formula by adding a supplement if your infant is growing slowly. (See "Ways To Boost Calories")
Avoid giving your infant water, because water has no calories. You may give juice to your baby after four months, but it shouldn't replace formula. Formula or breast milk is still the best way to meet your baby's caloric needs when solid food or juice are started, because milk has more calories than most solid foods or juices. (See Appendix III for high-calorie baby foods.)
Choosing a Formula
Commercial formulas (Carnation Good Start, Enfamil, Similac, etc.) are made as nearly like breast milk as possible. You and your baby's healthcare provider can decide which formula is best for your baby.
Choosing a Bottle/Nipple
There are many types of baby bottles and nipples you can buy. It may take several trials with various bottles and nipples before you find the one that works best for your baby. Some babies with heart disease have difficulty feeding from a regular nipple. You may want to find a soft type of nipple or make a larger hole in the nipple to allow the formula to flow more readily. Small holes in the nipple make it harder for your baby to suck and he or she may swallow air, which may result in vomiting. You can enlarge the hole in the nipple by inserting a sterilized sewing needle into the hole and "tearing" the hole open a little. The nipple should then be boiled for about five minutes in a pan on the stove and allowed to cool completely before it's used.
Tube Feedings
Some babies with congenital heart disease may not take in adequate amounts with breast-feeding or bottle-feeding alone. These children may require additional feeding using a nasogastric (NG) tube. This nasogastric tube is placed in the baby's nose and passes to the stomach, and formula or breast milk is delivered through the tube. This makes the feedings go easier and also requires your baby to gain more weight. Other methods of tube feeding include gastrostomy tube (GT) or jejeunostomy tube (JT). These methods involve placing the tube surgically into the stomach (GT) or intestine (JT). Your healthcare team will determine the best method and feeding schedule for your baby and you.
© 2012 Created by The Lobos.
