October 9, 2017:
Hello! This is the first in a series of emails I’ll be sending over the next two weeks recapping what we hope will be Jane’s transition from a tube-fed kiddo to an “eater.”
Summing up the past six months of our lives in one little paragraph:
As everyone on this email list (a handful of friends, family, medical professionals) knows, Jane has had feeding difficulties for the past six months. She currently receives about 90% of her calories through an NG tube. One of the most challenging issues we face is that we still don’t know — and probably never will know — why Jane stopped breastfeeding at eight weeks old. After a very long journey full of medical tests, hospitalizations, and NG tube adventures, we have exhausted the medical/clinical route of treatment. Our best guess is that Jane’s eating issues stem from some combination of silent reflux, food sensitivities, gagging, NG tube irritation, stress, and/or a behavioral aversion — and there aren’t really any other tests or doctors left to confirm which one(s) of these is the true cause.
And, honestly, the cause doesn’t matter to us much anymore. The fact that Jane once was an eater, and still is a (hesitant) eater, is proof enough to convince us that she is capable of feeding herself at this point. Paul, myself, and most members of Jane’s medical team have decided that intensive feeding therapy is the best next step for Jane. We are currently working with the Spectrum Pediatrics therapy group to re-teach Jane how to connect hunger, food, eating, and happiness together.
The basic concept of the Spectrum program is this: Get Jane hungry, and she will eat. Hunger (physical component), paired with the awareness of how to “solve” hunger and the eagerness to do so (therapy component), can make Jane eat again. We will be spending the next two weeks carefully weaning Jane off of her tube with the Spectrum team and using hunger as a key motivator for her to eat orally.
Some deep thoughts regarding “the tube:”
Let me pause to acknowledge that I’m aware of how simple — almost insultingly simple! — this strategy seems. Hunger is something so innate that many of us (myself included) wonder how in the world someone could lose touch with, ignore, or not understand the sensation of a growling and empty tummy. It’s almost unbelievable to think that a kid won’t eat. Most of the people on this list have had to actually witness a mealtime with Jane in person to understand what we mean when we say she “doesn’t eat.” (And what we mean is that she does not eat.)
I would have to open many bottles of wine and type many more emails detailing why and how Jane’s relationship with food and hunger has become so complicated. As I’ve expressed to many of you, we have a very love/hate relationship with Jane’s tube, which simultaneously solves and worsens her feeding problems by delivering calories devoid of effort from Jane. We hope that reducing Jane’s dependency on the tube will help simplify her perspective on eating. We hope that she will be a tube-free, happy kid who knows what hunger is — and how to solve it.
The good news is that we feel like we’ve made a lot of progress in recent months. We’re confident that Jane has what it takes to become an eater. At present she has a neutral, or even positive, relationship with food. Six months ago she would cry if held in the breastfeeding position and wouldn’t open her mouth for a bottle. Her oral intake was close to zero. Today she shows interest in eating both solids and milk, and does take in a few calories by mouth. She no longer cries when held in the breastfeeding position and plays with her bottles and sippy cups. Whereas she used to seem to dislike eating, now it seems like she just doesn’t understand it. Jane usually drinks 2-4 ounces of breastmilk through her sippy cup every day and about 1/4 cup of solid foods. These amounts are a far cry from the recommendations for children Jane’s age (something like 20-32 ounces of milk and 1-2 cups of solid foods), but they’re better than nothing! We are encouraged by Jane’s interest in food and feel like a hunger “push,” coupled with therapy and guidance from the Spectrum team, can help her rekindle her desire to eat orally and improve her relationship with food.
If we didn’t do this, then…
Although Spectrum Pediatrics has something like a 90% success rate of weaning kids off their tubes, we can’t be absolutely sure that this program will work for Jane. However, like I said earlier, at this point in our journey it’s clear that intensive therapy is what Jane needs — and, really, the only option we have left. Without this program, our “prescription” for getting Janeoff of her tube would basically be to cross our fingers and hope that she grows out of it over time. Multiple doctors have shrugged their shoulders, seemingly unconcerned that our baby doesn’t have the desire to eat, and told us to keep tube feeding Jane until she simply “grows out of it.” Her test results are normal and she’s trending positively on the growth chart, they say. So, why be alarmed?
Again, this seems insultingly simple to me. I’m alarmed because our daughter did eat, and now she doesn’t. I’m alarmed because we don’t know why she doesn’t eat. I’m alarmed that she recently started vomiting after her tube feeds. I’m alarmed that she shows no signs of hunger. And I’m probably most alarmed at the thought of a scary future: Continuing to feed Jane through a tube for months, or even years, to come while we wait for her to “grow out of it.” If Jane cannot learn to eat on her own soon, we will likely have to replace her nasogastric (NG) tube with a gastrostomy tube, which would be surgically inserted into her abdomen. As you might have noticed, I’m sending this email at 4 a.m. and do not get much sleep. This is why.
Where’s your happy place?
Another reason I’m up at night is because I wonder where Jane’s “happy place” is when it comes to appetite and bodyweight. When you feed a baby through a tube, you don’t get much feedback regarding fullness (other than vomiting, which isn’t great feedback at all). This makes it very difficult to know whether you are overfeeding your baby, underfeeding her, feeding her too frequently, or not feeding her often enough. Additionally, different recommendations from nutritionists and doctors on how much and how often to feed Jane have made it clear that there is no “one size fits all” nutrition plan for an infant.
Without Jane’s input to guide us, we have obviously leaned more toward overfeeding her rather than underfeeding her through the tube. Because, like any parents would, we want our daughter to grow — and, for better or for worse, are constantly monitoring her position on the growth chart. Just as a data point for you to have, Jane was born at the 2% mark for weight, was at the 5% mark at two months old, and then jumped to the 25% mark shortly after her NG tube was inserted around 3.5 months of age. Obviously we are thrilled that Jane has grown thanks to her tube feedings, especially since she was hospitalized with a “failure to thrive” diagnosis due to a plateau in weight gain when her feeding difficulties began. At the same time, though, Paul and I have always wondered if we’ve overfed Jane through the tube to the point where she’s above her natural, “happy” spot on the growth curve. Was her body designed to be at the 25% mark, or is she more content somewhere else on the curve? Without hunger cues to tell us, we don’t know.
And so hunger is where this program begins. On Wednesday we began the “hunger induction” phase of the Spectrum tube weaning program, gradually cutting 10% of Jane’s calories delivered through her tube every day for five days. We started by reducing her night feeding session, and then eliminating it entirely. Next was breakfast — first cutting a few ounces off of Jane’s tube breakfast and then eliminating her breakfast tube feeding entirely. On Sunday Jane received 50% of what she usually receives through her tube (13 ounces of milk instead of her usual 27). Although it’s definitely not fun to put your baby on a diet, Paul and I hope that this short-term intervention will reduce Jane’s dependence on her feeding tube and encourage her to eat on her own for the long term.
Some more specifics on the program:
First, Jane is allowed and encouraged to orally eat and drink as much as possible during the hunger induction phase and all other phases of the program. We continue to offer Jane solid foods and milk from her sippy cup 4-5 times a day. As of Sunday, we have not seen any major increases in Jane’s oral intake, but there have been a few moments she’s seemed more interested in eating. Over the past day or two, she’s decided that she loves to eat whatever and whenever Mom eats — and as a result has snacked on bread, soft pretzels, eggs, ricotta cheese, mac ‘n’ cheese, hummus, and cookies! Good thing I always seem to be eating…
Second, it goes without saying but I’ll just say it anyways: We are monitoring Jane very closely during this time. We even have Grandma here as an extra set of eyes! We talk with the Spectrum team every day, monitor diaper output, and are watching for any signs of dehydration. So far, Jane has been her usual happy self and we have not noticed any red flags. We are also giving Jane Pedialyte to help keep her energy and hydration levels up.
Third, we carefully researched other programs and talked to parents and medical professionals before selecting the Spectrum program. If you really want to know more about tube weaning, here are some of my favorite resources:
The end, for now!
And that’s my update for now! Tomorrow we journey to Alexandria to start the weaning phase of the program with daily in-person support from therapists. We are feeling confident that Jane is going to ace this and be tube-free soon. I’ll check in again soon with an update. Wish us luck!