Heath was 14 months old and 21 lbs 14 oz (9.89 kilos) when he started his wean. He did wonderfully and is now an enthusiastic eater! Doing a home-based intensive wean along with two other Seattle families was one of the most moving, inspiring, and joyful things I've ever witnessed. I decided to write down as much detail as I could about the wean not because it is a recipe to follow -- there is more than one way to do this, and every child needs different kinds of support -- but because we learned so much along the way and there might be tidbits here which could benefit another child.
So, here's how it all went down....
I. Phases of a Rapid Wean
First we established that Heath was a good candidate for a rapid wean. He was healthy, had passed a swallow study, and Markus had watched video of him interacting with food. His clear interest in mealtime communicated that part of him wanted to eat, even though food, spoons, and eating situations made him a bit nervous. Markus evaluated his medical history with an eye toward understanding the oral trauma he experienced in the hospital. We decided to set a treatment goal of allowing Heath to become a 100% oral eater if he chose to.
A few days before Markus arrived in Seattle, he sent the below reduction plan. We started by reducing Heath's tube meals 10% per day for five days. First we reduced his breakfast by half, the next day we eliminated it. The third day we dropped his part of his morning snack, and the fourth day the rest of it. The fifth day he got no food until lunchtime, and then received only half his lunch. Each day we tracked Heath's mood, our mood, Heath's weight and temperature, and any oral fluids or foods consumed. (There wasn't any real food consumption, but some tasting and water drinking.)
You can click this image to see the reduction phase in more detail.
Heath did not seem to notice the calorie reduction at all for the first 2-3 days. If anything, he seemed more comfortable. His once-daily vomiting began to abate. On the fourth and fifth days, he drank more water. He also had periods of crankiness, as did the other two kids who weaned with him. He played with and tasted food, but didn't eat anything in quantity.
c) Intensive Phase
On the sixth day, Heath received no nutrition or fluids via tube. He was intently focused on food. He really enjoyed games that involved tasting and rubbing his face in food, but was not yet serious about eating. He drank milk for the first time from a sippy cup and laughed hysterically about it. We thought he was almost there.
On the seventh day (two days without tube food or fluids), Heath started to get serious and glum. He drank loads of water from his sippy but began to avoid all contact with food. This was the beginning of the "identity crisis" point. A part of him realized that change was coming, it was monumental, and it had nothing to do with his former self: he was a non-eater, hungry as hell, in a world of food. He played some, snuggled a lot, and dissolved in tears every so often. It sucked.
On the eighth day (third day with no food), he stopped drinking from his sippy in the late morning and seemed to float away. He just wanted to be in the front carrier and snuggle. There was no hint of a smile and my heart was breaking for him. Markus Skyped with his partner Martina Jotzo in Germany and they discussed what to do. Some kids in this condition are on the verge of a breakthrough, and to feed them via tube will send a strange mixed message - "You are facing a choice you alone can make, but we aren't sure you can do it, so here's some food." At 2 p.m., we decided to feed him 100 mls of nutrition (Bright Beginnings toddler formula, 30 cals/oz), and 20 ml. each hour, plus some fluids, and he came back to us right away, regaining color and smiling his usual smiles. We did the right thing, and the message we sent and I think he received was, "You aren't alone in this. We won't let you float away."
On the ninth day, we met with our pediatrician and came up with a sustainable plan to support Heath while he gathered strength for another run at the problem. Heath would get 10 mls nutrition and 10 mls Pedialyte per hour, and 200 mls of each via pump overnight. If he didn't drink 250 mls during the day, we would give him the difference via tube. Heath seemed tired but amiable, didn't do much during Baby Picnic, and we worked with puppets to act out the drama of not wanting to eat.
On the tenth day, Heath became an eater and he hasn't looked back since. At 11 a.m. Baby Picnic, he began to bite, suck, pulverize, spit out and swallow bits of Veggie Straws. It wasn't the amount he ate or the skill with which he did it, but the total lack of hesitation and extreme focus that characterized this breakthrough. He didn't go back to drinking lots of water, which surprised me, but Markus said a dropoff in drinking can happen when a new eater is concentrating all their efforts on gaining oral skills.
We continued to support Heath until Day 13 with:
- 10 mls formula/10 mls. Pedialyte per hour
- 250 mls water total over the daytime (whatever he didn't drink)
- 200 mls formula/200 mls Pedialyte overnight
Heath's oral food intake went up day by day. Less and less came out on his bib and more went down the chute. We never counted calories but eyeballed what he was getting. We phased out the daytime formula and Pedialyte by Day 18. From Day 18 until weight gain was on track he would get:
- 250 mls water total over the daytime (whatever he didn't drink)
- 200 mls whole milk/200 mls Pedialyte overnight
Markus spoke to our pediatrician before he flew home on Day 19, explaining the maintenance plan above and the expectation that Heath would begin to gain soon. The supplementary milk and fluids would be phased out as Heath's weight and oral fluid intake rose. Markus was available via e-mail and Skype for special questions (What if Heath got sick and stopped eating? What if he didn't gain? When should we take out the gastrostomy button?). We would continue to see the pediatrician regularly and update her on Heath's weight gain, mood, developmental progress, and general health.
Here's what Heath's weight did during the first three weeks of the wean (click to enlarge).
There's weight, and then there's weight. What is your child losing? Water? Fat? Muscle? The majority of what's being lost in the intensive phase is water, which is quickly and easily replaced. Next to be lost is fat, then muscle, then nutritional stores in the liver (which helped human beings survive when our diets were seasonal and our winters were rough). According to the Graz research, most tube weaned kids regain their weight within 4-6 weeks, not nearly enough time to deplete muscle and nutritional stores significantly.
This chart shows the calories Heath received via tube during the same time period (click to enlarge):
He made his eating breakthrough when he was well supported by tube nutrition (but had looked down the barrell of true hunger and thirst.) As his oral intake increased, we dropped his tube calories, and he finally started to gain his weight back. An important lesson that I learned was that there was no need to obsess about how many calories Heath was consuming orally -- all we had to do was weigh him.
Our goal was not to let Heath lose more than 10% of his original starting weight. Once he lost that much, we gave him what it took to maintain him there until he started eating. After he started eating, we responded to his gradually increasing oral intake by dropping his daytime tube calories and just supplementing with 133 calories of milk at night. He maintained his weight there, and then began to gain. Once he reaches 9.5 kilos, we will think about dropping his night milk altogether. Work with someone who has helped kids phase out supplementary tube nutrition after becoming eaters to see what's best for your child. A lot of this is intuitive and there are no magic numbers -- if your child is happy and gaining, it is safe to drop a few tube calories and see if he or she maintains his weight then gains again.
A wonderful book that helped me undertstand and relax about growth charts, etc. is "My Child Won't Eat!" by Carlos Gonzales. I got it through the library.
Hydration is the most important weaning component for your pediatrician and medical team to monitor. Your kid will not starve during the intensive phase of a wean, but he or she could become dangerously dehydrated. Educate yourself about isonatraemic dehydration or hypovolemia, which means loss of both water and electrolytes.
We all get a bit dehydrated from time to time, and we may have experienced dry lips and mouth, less urine output, and low energy as a result. When your child receives little or no fluids (except what they can consume orally) during the intensive part of a wean, the body will draw water from the tissues to maintain homeostasis and your child may experience seriously unpleasant symptoms you yourself never have. Invisible symptoms include headaches, insomnia, visual disturbances, dizziness or being just plain out of it. Video of Heath on Day 8 shows what this looked like for Heath. It was his dissociated state of mind, more than anything, that made us realize he needed some hydration and nutrition in order to power up for the fight. Giving it was not a failure or a capitulation! In Heath's case, it was necessary to help him re-gather his strength for the huge leap it took for him to become an eater two days later. (His two weaning buddies, Kai and Rosie, didn't need this boost and both started eating 24-36 hours after the intensive phase began. Some kids can take eight days to make the leap, in which case giving supplementary food and fluid is crucial.)
The most dangerous sign of dehydration is NO WET DIAPERS. You should be changing three decent sized diapers (more than an ounce and better two or three) (minus the weight of the diaper), per day. I told myself if I didn't see a good diaper for twelve hours I would call our pediatrician and give Heath 100 mls of Pedialyte via tube immediately. Because Heath kept drinking and peeing throughout most of the intensive phase, this didn't happen.
If you see the following signs, remain alert and keep looking for wet diapers.
- You can pinch a skinfold on your little one's tummy to see how fast it rebounds, or unwrinkles. If the wrinkles persist, this is a sign of dehydration.
- Dry lips, a bit reddish in the center and whitish at the borders.
- Capillary diffusion -- when you press the skin, does it take a long time for the blood to run back to the spot you pressed so the white disappears?
- Cold hands and feet (keep your bub warm during the wean).
- Diapers have a strong smell, somewhat ammoniac. It is best if you have an experienced diaper reader.
- Urate crystals in the diaper, or "brick dust":
We saw this diaper two days after Heath was most dehydrated. I found this confusing, but Markus explained that once we rehydrated him, the fluid flushed out a little clod of urate crystals that had formed two days before. Heath had plenty of good diapers on the day we saw this brick dust so our pediatrician was not concerned. If we had seen it on a day with light or no diapers, we would have given Pedialyte right away. Note: if your child is dehydrated, it's important to give a solution that includes electrolytes such as Pedialyte. Straight water can actually make the condition worse by further disturbing the electrolyte balance.
You can save some money and make your own Pedialyte! Maria writes: "I read lots of articles, but settled on this one. I use honey, but would use sugar for kids under age 1. The homemade version allows us to avoid preservatives and unnecessary additives, especially since it's just going in through the tube and taste doesn't matter....The baking soda can be used to treat acid indigestion, which is great for reflux kids too. The homemade version doesn't have potassium, but I suppose you could supplement with a little potassium citrate if you're worried about it."
Heath, Kai and Rosie were not much interested in drinking water or anything else during the wean or afterward. As of Day 25, all were still receiving supplementary fluids through the tube overnight or a bit during the day. Heath got 250 mls Pedialyte overnight and 20 mls per hour during the day, so he never felt fully satisfied and would continue to want to drink. By Day 45 he was drinking all he needed on his own, both milk and water.
Heath now drinks anywhere and anytime, from a sippy or open cup (messy!). But when first learning to drink, he did most of his sipping at a special "Drinking Window" in the kitchen where he could choose what vessel he wanted to drink from. At the end of the day we washed out all the containers and re-filled them the next morning. Some of the spouts on the sippies were customized with scissors to make them flow more easily. I tried to keep the milk in the fridge since he likes it cold!
It's hard to remember, but it helps to keep approximate track of the fluids your child drinks by mouth during the wean, if any. This helps you know how much to supplement by tube.
Minumum hydration requirements: There are widely varying guidelines out there. Here is the page in the Merck manual which gives three ways of calculating how much fluid your kid needs, one almost twice as high as the other! Under normal circumstances, our ped recommends that Heath have 36 mls of fluid/hour, so 864 mls (29 ounces) over 24 hours. Even that seems like a lot! Some of the moms on Tube Fed Kids Deserve to Eat say that their child never drinks much but continues to wet diapers and feel fine because the foods they eat contain lots of water. Graz tells parents to count wet foods as fluid, so 80 mls of applesauce or yogurt counts as 80 mls of fluid.
Markus and our ped both recommended monitoring diapers' weight and odor and looking at Heath's mood and energy level as the main way of checking for dehydration. I tried to do both: know the approximate amount of fluids Heath was getting and ensure that he was happy and playful, had color, and was working on developing and learning like a normal child.
The nemesis of the tube-weaning child! All three kids suffered from some constipation during the wean. A by-product of dehydration at first, it can continue as little digestive systems adapt to processing totally new foods.
We gave 1 teaspoon of Miralax in water at night whenever we hadn't seen a little action for a day. We used glycerin suppositories if this didn't do the trick. We didn't wait any longer than 1-2 days to treat constipation because it is possible for serious impactions to build up.
Around Day 21, Heath started to be his "regular" self on his then-diet of black sesame cereal, oatmeal, bread and butter, Nutella, and PB&J.
I had no idea what Heath would eat before we started the wean. Since he had never been an eater, drinker, or breast feeder, it was almost impossible to imagine and surreal to see when the day finally came. To my surprise, he started off eating crunchy Veggie Straw snacks -- not purees or special "baby" foods.
In his first ten days as an eater, Heath ate Ritz crackers, hummous, Nutella, cheddar cheese, sorbet, mashed potatoes, diner pancakes with butter and syrup, crescent rolls, Mum Mums, gravy, egg yolk, baby oatmeal with butter, syrup, and cinnamon, mashed yam, Newman's Own sandwich cookies, carrot soup with pesto and sour cream, pizza, salmon and chicken. Number of gagging episodes: two, and they were very brief and undramatic. It's astounding what he and his weaning buddies were able to do "learning on the job"!
Heath thrust about half the food out with his tongue for the first few days, but I tried to relax, knowing this is a protective strategy for beginning eaters learning their way around a mouthful.
If you are told that your child must gain oral skills before tube weaning, seek another opinion from a seasoned rapid weaning expert who sees your child on video. Always rule out dysphagia (aspiration risk, which would rule out a wean) but not having eaten doesn't necessarily mean your child can't eat. If your intuition says the biggest oral-motor challenge is inexperience, then your child likely has what it takes to eat hidden away in a secret toolbox. Even children with severe neurological problems can and do eat efficiently.
Heath's favorite foods and nutritional staples (three weeks into the wean) are from the Asian grocery! (Thank you so much, Maria.) Greenmax Black Sesame Cereal and Torto Sesame Paste Powder and Torto Peanut Paste Powder (can't find this one online) are amazing! The cereal is lower in sugar and higher in nutrients, but all have lots of fat and decent protein. I mix them up with 1/2 and 1/2, not water. You can also mix in fruit and veg purees or ricotta cheese!
Bright colorful dishes for Baby Picnic and mealtimes are fun! The white one below is a non-skid model made by Boon and the suction cup bowl is by Munchkin, both from Target. The red silicone squishy bowls are from REI, for camping.
Heath finds the bendy, orange and blue utensils by Boon easiest to feed himself with. The one with holes on the bottom is a Sassy feeder, which I thought was so clever, but it seems a bit unwieldy. He will use the toothbrush soaked in water to "brush" after a meal, in imitation of us. I think he would use a grown up toothbrush too, which might be more effective!
Do you like being pressured to eat, or eat more? Me either. Offer once, twice, at a respectful distance, then back off and wait a bit. Enjoy your own food, genuinely, and your hungry baby bird will notice and explore when the time is right.
Do you like to be spoon-fed or feed yourself? Do you like the spoon coming in fast from below or nice and slow from up above? Be as observant and respectful as your wean-muddled brain can manage.
Do you like someone picking out all your food for you? Indulge your novice eater in his or her favorite new foods and worry about the AAP food pyramid later. Let your brave hero revel in the splendors of Nutella or whatever they love best for a time. Learning to eat begins with the joy of it! (I suspect Heath focused on fats and carbs in the beginning because he was putting his weight back on. Veggies and fruits are so low in calories they wouldn't help much with that, and became more appealing later.) Based on the Graz research, it takes 4-6 months for tastes and eating habits to even out and start to reflect a child's long-term needs and wants.
Do you love Stage 2 baby foods? I can't say I do. Choose good, rich tastes and nice textures that you imagine your child will love as much as you do.
Do you like tense, glum, silent meals or get-togethers full of good laughs, warm eye contact, and laughter? Make sure you have food and drink for yourself and keep talking, singing, or just calmly engaging. If Junior is eating at all, celebrate that fact instead of tallying up calories or worrying that he doesn't want any green beans today.
By the way, Heath gave up the Veggie Straws he started with once he found other, more satisfying foods that tasted good. (Too bad I bought up the whole stash at Whole Foods! )
VI. Baby Picnics
Heath and his weaning buddies Rosie and Kai all made their big eating breakthroughs at our daily Baby Picnics (or Play Picnic, for older kids)! These wonderful affairs are easy to stage in your own living room and will give weaning (or pre-weaning) kids a perfect environment in which to engage with food in a "just for fun" way that is less adult-dominated than mealtimes or spoon-in-the-face therapy. The rules are simple:
- Let kids lead the way. (Don't suggest foods or holler, "Taste this, sweetie!" If Junior tries to feed you a pickle dipped in marshmallow cream, say "Thank you" and enjoy :-)). If a child ignores the food and wants to wander away or play with toys, that's fine.)
- Resist the urge to interfere or control. If a child needs help doing something from a motor perspective, offer help, but remain in the background. Have a cup of coffee in hand to keep you busy.
- Add to the fun. Play nice children's music, use colorful cloths and dishes, and show off your food tossing or whipped cream spraying skills at an opportune moment.
- Gather data. Don't write it down, but take careful note of what your child is doing, looking at, enjoying, worrying about, etc. Members of your child's weaning team can gather valuable data by seeing what he or she does at the picnic, and how this changes over time. Your SLP might have great observations about how your child is chewing and swallowing, if they are at that point.
- Wait, watch and wonder. I love this beautiful motto, which I believe originated with Marguerite Dunitz Scheer of Graz, and which applies to the entire miracle of self-regulation weaning.
You can throw a baby picnic with as few as two children. Heath and his friend Caroline picnicked together a couple times a month for a long time before the wean, sometimes skipping breakfast that day so the food wouldn't turn them off. Picnics are also relaxing and fun for parents and a good time to share ideas.
I was fascinated to learn that in Germany, a developmental psychologist plays a crucial role on a child's weaning team (and in the decision to place a tube in the first place, but that's a different story.)
The shrink spends far more hours one-on-one with a weaning child than the feeding therapist or medical doctor, who might not see him or her daily. Having worked with Markus and glimpsed what inner Rubicons Heath had to cross to overcome trauma, ambivalence, inner conflict, and confusion, it is now clear to me why the psychologist is so important. For kids with oral trauma in particular, becoming an eater is more about a perilous shift in identity than it is about a technical accomplishment in the mouth. I wrote about this from Day 7 on, and it was the most unexpected aspect of the wean.
I suspect someday the brains of weaning children will be scanned using PET imagery or something similar so that the functional transformation from eater to non-eater can be observed in the brain. (Basal ganglia? Hippocampus? The whole kit and caboodle?) I think we'll be surprised at the depth and interconnectedness of the transformation, which touches so many aspects of who we are.
When you are supporting a child through the intense and miraculous process of tube weaning, imagine with all your might what it is like for them. Be present. Convey a healing, supportive message. Keep looking for the special key that will help your child.
Markus has over a decade of experience working with over 400 weaning children in both clinical and home environments. He used different approaches with Heath, Kai and Rosie. I only saw him work intensively with Heath, a sensitive 14-month old with a passion for puppets and toy tractors. We used these elements of Heath's play universe to act out before him the conflict he was agonizing over (see Day 9): "Do I want to eat or don't I?" We came at this from a different angle by showing Heath videos of himself eating and drinking early in the process, when it was "just for fun," and eating in front of mirrors.
With Kai, a two-year old who went through a lot of anguish over his decision to eat, Markus used entirely different approaches, giving him time to sit in his tent alone and consider his choice. Kai overcame immense inner resistance to unleashing his inner eater. (He soon resembled a human wood-chipper, devouring mountains of crunchy snacks with extreme prejudice!)
Rosie, a sweet china-doll of two, was silent and quiet as she lingered at the threshhold of real eating. Markus managed to enchant her on the second or third day of the Intensive Phase with a special porcelain demitasse cup made "just for princesses." It was glorious to see her to accept this magical object, drink down three servings of milk, and never look back.
You know your child better than anyone. Be inventive, be creative, see what's working and what's not. Seek advice from a developmental psychologist about how the world looks through your child's eyes, at his or her age. If you can't find a good one, use what your intuition and expert knowledge of your kid to come up with your own ideas about how best to support, embolden, and care for him or her during a very heroic journey.
Sigh. I swore I would never be one of those parents who breaks out the DVD player whenever Baby is feeling out of sorts. It's bad for their brains! Their bodies will atrophy! How could I??
Err, press "Play"?
TV can be used in different ways in feeding therapy. During behavioral therapy, it is sometimes used as reward (or withheld as negative reinforcement). During self-regulation therapy, it is seen as a tool to give kids a break from the exhausting mental, physical, and emotional tasks they are working so hard on. The Teletubbies were our companions on the road to Foodville. They were especially helpful on the very hard days of the Intensive Phase, when our little freedom fighter just needed a breather.
On the upside, Heath really improved his skill managing mouthfuls and decreasing his tongue thrust (i.e., swallowing more) while zoning out in Tubbie-land, perhaps because he wasn't over-thinking or trying too hard. He also ate more while watching TV. Both of these things happened because TV quieted down anxious and unproductive inner voices. On the downside, TV became part of his life and he asked for it more often, especially when tired and grousing, for a few months after the wean. On balance, I think TV was a cozy pitstop during a very exhausting endurance event.
Are you wondering, "How Can I Help My Child Wean?"