To Drill or Not To Drill A Hole in Her Gut

Last night I dreamt that Fiona walked. Just stood up and toddled around, nearly a foot taller than she really is. The dream was all fog and blurry vision, but just like that, she walked.

In waking life, Fiona is nowhere near walking. She still prefers lying flat on her back, arms fisted, eyes staring at the ceiling. She’ll pull herself up to sit, grab for something, lie back down. Gravity is her ruler. Against it, her willowy body has trouble putting up a fight.

Everyone’s talking calories. We have met with a nutritionist, a dietician, a GI doctor. We have talked with her pediatrician and her feeding therapist and her early interventionist. Fiona is not taking in enough calories. I know because I add them up each day in a little book. A friend of mine gave me the book for my own writing. Instead, it’s filled with calorie tallies. As is my brain. I know by heart the calorie counts of all the foods Fiona likes. Slice of wheat bread, 100. Jar of sweet potatoes, 80. Jar of peas, 50. Stick of mozzarella, 80. And on and on. Today we are at 210. It is 3 pm. We might make it to 600. This is how I count the day’s progress: in calories.

A nutritionist from Burlington drove three hours to see us. Her conclusions: we are doing an amazing job. We are doing everything she would recommend. We are doing all that we can.

You can’t force her to eat, the pediatrician says.

No, but you can force the food into her through a tube.

And so the question: does she need a tube? Her body is a willow tree. She grows long but never wide. Three-month pants still fit her waist, even as they don’t go past her shins. This is typical for kids with Wolf-Hirschhorn. String-bean-shaped, I call her. But is she getting all the nutrition she needs? Would she have more strength if she could get more? I tend to her string-bean body all day long. I dress her and change her diaper. I adjust her body’s positioning so that it’s ideal for her development. I offer spoon after spoon of food. Most of the time, she refuses.

This person says we need a feeding tube. That person says it’s not worth the risk.

This person says, from a nutritional standpoint, there’s nothing to lose by getting a feeding tube. That person says, for every child that takes well to the tube, there’s another one who has complications. So far, no doctor says it’s time for the tube.

You need to eat, we say all day long to her. When I leave the room to meditate, Justin’s voice cuts through the closed door. You need to eat, I hear from my cushions. I inhale, repeat my prayer word, exhale. I don’t pray to ask for things to be different. I pray to accept them as they are. And still, You need to eat. If we have really hit our limit, if it’s evening and we’ve already tried six times that day and already offered hundreds of spoonfuls and already know that today’s tally in the little book (the book that was meant to house my writing but instead houses calories) reports a dismal day, we say, You need to eat, or we’re going to have to drill a hole in you. We don’t say this to be mean. We say it because it’s true.

Actually, I don’t know if surgery for a g-tube requires drilling. It probably doesn’t. But the tube seems that gritty to me. That crude.

Last night I dreamt she got up and walked. Today she nearly cries when her physical therapist picks her foot up and sets it down a few inches in front of her. She wavers. She has no balance. She wants to sit down. She wants to succumb to gravity.

Has there been any talk of a g-tube? the physical therapist asks, and I sigh, and sense that if she were the doctor, she’d order one stat.

fiona in rifton


4 thoughts on “To Drill or Not To Drill A Hole in Her Gut

  1. As the mom of a child with a rare genetic syndrome, one who has had a g-tube since he was 6 weeks old, I can only offer this. My son wouldn’t eat by mouth. We were lucky to get an ounce of formula in him at any given time. We tried everything but it came down to keeping his NG tube or placing the g tube. I felt like such a failure. I was unable to do the most basic of parenting responsibilities – feeding my child. It turned out to be the best thing we could have done. I stopped obsessing over his intakes, stopped beating myself up over his unwillingness to eat. I hated that damn tube right up until I started loving it. It has allowed him to live and thrive and I’m so grateful for that.

  2. We have very recently been in a similar situation with Mia. She will turn three in January, weighs just shy of 17 lb and has put on less than 2 of that in the past year. With such little reserves and winter virus season upon us, Mia’s eating, or lack thereof, began to consume us.

    I can’t be sure what started the decline (virus/new baby/change in routine/who knows?!?) but Mia’s eating became so bad over the course of a couple of months – with spitting and head turning, often eating/drinking nothing over the course of an entire meal, that we had the same multi-disciplinary meeting a few weeks ago that you described. The upshot of which was that Mia was referred to the surgical team for consideration for a g-tube. Oddly, the week after this meeting, Mia turned a corner in the opposite direction and, out of the blue, started eating again. We still struggle with fluids, and have had to revert to puréed‎ textures, but she is getting those much needed calories. We have been advised to keep our appointment with the surgeon to hear what he thinks, but it looks like, for now at least, the g-tube decision is back on the shelf.

    I hope you find a way to ease the stress on everyone involved in making sure Fiona gets the nutrition she needs – I know how very hard it can be.

  3. Reading this gave me a big lump in my throat and brought tears remembering it all, every bit of your current situation is so familiar to me. It was not very different for us…the notebooks (which I still have) full of detailed logs of calorie intake, calculations off the side scribbled all over, the charts we wrote for ourselves that calculated calories of everything he ate, Brodie’s pediasure bottles were 240 calories a piece and we knew by heart the total of each multiplier of 240, 1-6 (the number of bottles he might drink in a day) and if at the end of the day we didn’t reach our goal of 1000 calories I would wake him in the middle of the night for another feeding. There would be days and weeks on end that we couldn’t reach that number and it was the most helpless defeated feeling in the world. I would go weeks on end making no social plans because I was so consumed with just getting enough sustenance in my frail little boys system… it wasn’t just counting calories it was how long the meals took and the patience it required to persevere in the hopes of being successful with a few bites, even if it took making 3 different meals for his dinner, and then if he was sick the dropper method of getting pediasure in him even after he was 2 years old. I have to admit I crumbled under the weight of it all, it brought depression and anxiety down on me with a vengeance and I wasn’t able to turn that around without medication, because it was like a fight-or-flight adrenaline-pumping way to live life around the clock for such extended periods of time. I don’t regret any of it, it was part of the learning curve for us…if we hadn’t gone to that extent we would have never made it to the other side of understanding we reached that calories didn’t impact Brodie’s growth and development in any way we hoped it would. Our experience led us to the belief that we would begin focusing purely on nutrition (plus it helps that Brodie still likes to drink a bottle of pediasure 3 times a day) and on a more holistic picture of what food and mealtimes and self-feeding could mean for him and our family. Brodie gets enough calories and feeding issues are dramatically eaiser now but still I structure my days around his meals, what and where we will eat to give him the opportunity to have time for each meal and time to learn chewing skills, and to try new foods, his meals take a very long time still and involve not just eating but constantly learning and working on slow-to-acquire skills like self-feeding and less mouth defensiveness, and tongue control and how to chew….You are doing an amazing job as Fi’s parents. Know you are not alone. Know that this tortuous process right now where you are deciding what to do will absolutely soon lead you to enough information and intuition for you to make a decision about it that feels right for Fiona and for your family and she is going to be ok whichever route you decide to pursue. She is so lucky to have such an enriched world to grow and learn in and be tremendously loved and supported in, what a beautiful world you are carving out for her. In all the discouraged and defeated emotions you are going through right now I see so much beauty and richness in the experience and life you provide her and that is an amazing thing. Keep the faith, it does get better. I am happy to tell you it even gets a lot more fun:) in spite of the special needs and heavy emotional issues of WHS we contend with, it gets a lot more fun! Brodie turns 5 in may. He weighed 19 lbs. when he turned 3 and he weighed that for a year, and then gained a couple lbs over the course of a couple months and weighed that for maybe 9 months before gaining more…that has been our normal. The growth spurts don’t correlate to anything we can see like calorie intake, general health, or anything other than his genes. I’m sorry I hijacked your blog comments to write way more than I intended to. Loved the post, and loved the picture of Fiona with the walker, she looks radiant really and looks to be thriving.

  4. My daughter Ryan, has a feeding tube that we had been trying to phase out for the past year and instead we are now using it six times a day because she has slipped in her growth. She is 28 mos. old and she got the tube when she was six months old. She has had numerous surgeries and has a fundelplication/nissen and a TEF/EA repair related to her GI/ENT stuff and brain damage and epilepsy, related to her cognitive delays. I am happy to answer any questions that you have. I was and am a reluctant tube feeding Mom myself. I really enjoy your blog and your grace with your daughter.

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