Warm greetings to you tube-feeding parents out there!
It is a hard road at times, but I hope that you will discover as much as we have along the way -- your resilience, creativity, persistence, and sensitivity to your child will grow and grow.
I learned most of what I know about tube feeding and weaning through the grapevine.... From other parents and inspired specialists who were willing to try new things, question the standard advice, and toss something new in the blender. I am especially indebted to Dr. Markus Wilken, who flew all the way from Germany to Seattle to help Heath become an eater. (He now works in the US part time. Email his partner Jennifer Berry for details: firstname.lastname@example.org) For a variety of medical reasons, not every tube fed child can or should eat, and in these cases the tube is a lifesaver and a godsend.
What follows are tidbits we have gathered along the way which may be of help: informational resources, tips on tube feeding, stoma care, dealing with vomiting, tube weaning and posttraumatic stress.
This is by no means a comprehensive list of tube-feeding and tube-weaning resources, but here are a few things that have helped us.
- Research, Articles, and Abstracts
Prevention and treatment of tube dependency in infancy and early childhood
Standardized tube weaning in children with long-term feeding-tube dependency: Retrospective analysis of 221 patients
Discontinuation of tube feeding in young children by hunger provocation
Stress levels experienced by the parents of enterally fed children
The psychosocial impact on parents of tube feeding their child
- Online Support Groups
Tube Feeding Tips and Lessons Learned
When you bring your dear child home from the hospital with a tube, it is likely you will get a piece of paper that tells you how to care for the tube itself and something else from the dietician that tells you how much formula or pumped breast milk to feed your child over what period of time. And that's about it. But you will soon find that tube-feeding is an art and not a science!
A g-tube site will need to heal and you may struggle with redness, soreness, and granulation tissue. We were able to keep Heath's site ouch-free by cleansing it once or twice a day with a solution of 2 drops eucalyptus oil to 20 ccs water. We just squirted a bit of this on a q-tip and swabbed it gently. Then we put a 2x2 split gauze around the button and secured the open end with a bit of soft paper medical tape. (We didn't tape any of the gauze to his skin.) If there was redness or soreness, we mixed a bit of Desitin with some antibiotic ointment and applied this under the 2x2 gauze with a q-tip. No mess, no fuss! If the site looked good, we just used a bit of Desitin now and then. Eventually, it healed enough that we didn't need the gauze or goo.
Next, you may find your child starting to retch, gag, or vomit during or after meals. He or she may not tolerate much volume in the tummy. You may be told your child has reflux and be prescribed medication. And this may be appropriate and helpful, as it was in Heath's case for some time. But be aware that tube feeding itself feels strange to little bodies and sometimes they reject the feeling of tube feeding, or of high-calorie formula that sits in the stomach. Try to find a GI doc or therapist who has actually chosen to have an NG tube placed for a day in order to know what tube feeding feels like. It can be a long and frustrating road to find out what works best to bring your child relief. Some therapists believe that vomiting must be resolved before a child can eat; this may or may not be true in your child's case -- in Heath's case it was not. Markus established that tube weaning reduced the incidence of gagging and regurgitation by about 90% among a group of 27 children who were medically cleared for tube weaning. GERD (reflux), however, is so painful that a child will not be a candidate for weaning until it is resolved. It will require a lot of research and conversation with your medical team to come to the right determination for your child.
We found that switching from an electric feeding pump to a hand-held 60 ml. syringe made a lot of difference. Although it seemed like a step backward to use such a low-tech method, we soon realized that it felt much better to Heath. We could watch his cues and slow or speed the rate of delivery accordingly. We could pull the food back out if it seemed like things were headed for urp-ville. And it felt more like we were feeding our child rather than a robot. He could still tolerate a bolus or two at night on the pump if we felt like, oh, sleeping. And the vomiting got a little better.
Once Heath was about six months old, we started adding blended foods to his diet. This is not hard to figure out -- I just looked at the American Academy of Pediatrics recommended guidelines for feeding a child of his age and tossed those things in a blender with enough water or milk to make them go through the tube easily. We used a Beaba Babycook steamer/blender to make Heath's food for quite awhile, but we got two or three extension set clogs when blending chicken. The Vitamix company gave us a great medical discount on their monster blender, which does a much better job truly liquefying food. Just call the company at 1-800-848-2649 and they will give you a fax number where your doctor can send a note stating why the Vitamix will benefit your child.
To unclog the extension set, we use the back of a table knife, running it along the tube like curling ribbon over the sink and rinsing well (when it's not connected to Heath, obviously). A needle in the hard plastic end of the extension set can help dislodge a piece of food stuck there. In the worst case scenario -- a clog in the button itself -- I admit I have gone Nancy Drew on its ass and used the rounded, plastic tip of a bobby pin to gently push the clog through. It works like a charm and beats a visit to the ER, but don't say you heard it from me!
Here is a decent book about making blenderized meals, if you need some inspiration, but you can do well going by the AAP guidelines and getting a reality check from a common-sense dietician who supports your choice to feed your kid some real food. Sadly, some are really uncomfortable with this and will continue to suggest different formulas because this makes it easier for them to track calories and nutrients. I have nothing against formulas that are easy on kids' tummies, and we supplemented Heath's diet at times with Bright Beginnings Soy Toddler formula.
Another thing that may help decrease or stop vomiting: a prescription from your child's GI doctor for a low dose of an antihistamine called periactin. This helped Heath. It is also an appetite stimulant, but that side effect wears off after a couple of weeks. A little girl we know has found relief from a special anti-anxiety medication called amitriptyline. Both drugs work by relaxing the muscle tone of the GI system and soothing the hair-trigger impulses that can start a vomit in motion. Massage and hot packs on the tummy may help a bit, but when it comes to powerhouse vomiting, you may need to bring in big guns, i.e., a drug.
Or the healing effects of time. As Heath became able to sit more upright we noticed an improvement in his digestion.
Constipation can bring vomiting, so watch out for hard, formed poops -- you might try to encourage more fluffiness through diet or a mild laxative (1 tsp of Miralax in water does the trick. I have heard coconut oil from Super Supplements is effective too.) -- ask your GI doc about this.
Be alert to overfeeding. Double and triple check the recommended calorie counts from your nutritionist with your pediatrician and other parents. If you child is pleasantly plump, do not feel you must stuff every calorie into them at the expense of their comfort. Work closely with a common-sense pediatrician on this one.
We noticed that when we didn't give Heath 15 mls. of strong ginger tea with each and every meal, he vomited more! We boiled-then-simmered several slices of ginger in three cups of water for 20 minutes. We added some Chinese herbs given to us by Heath's Chinese doctor as well to calm his tummy. This odd concoction really did seem to help -- our GI doctor recommends ginger as well.
There is also a form of pediatric acupressure called Shoni Shin you might be able to find in your area. We get low-cost treatments at the Seattle Institute of Oriental Medicine.
When your little one is vomiting, be as calm as possible. Offer steady, calm eye contact. You might find that the firm pressure of your hand on his or her solar plexus offers support during retching. If your child gasps for air or appears unable to breathe for 10 seconds or so, it may be laryngospasm, a side effect of stomach acid hitting the vocal cords, which clamp shut in response. It is not dangerous but it is upsetting for the child and parent. Sometimes blowing gently in Heath's face helped him get his breath during a spasm.
Tube weaning can also bring an end to vomiting. Our little friend suffered from multiple vomits daily -- up to 15 at one point. Once he weaned from the tube, the problem vanished. Markus' research supports this outcome (as soon as he publishes this data I will link to it above). It was true for Heath as well. Before weaning: one vomit daily. After: Zero.
The best thing you can do when you are grappling with the complexities of a new tube is join a support group, either online or in your area. The Oley Foundation Forum is a wonderful place to ask questions about tube care. The Blenderized Diet Yahoo! Group is great for information on giving your kid real food. Tube Fed Kids Deserve to Eat is a place to find information on choosing when and how to help your child wean, the weaning process, and life after weaning. If there isn't a support group in your area, consider starting an online group and asking your therapists and doctors to refer other tube-feeding parents there so you can all connect locally.
Not every tube-fed child can or should become a 100% oral eater, but many can if given proper medical and psychological support. Here is some more information about Tube Weaning.