By Marissa Khosh 
My second daughter was born with a heart defect. A large hole in her heart made it hard for her little body to grow. Even though I was told several times my milk supply was likely enough, she kept losing weight. There was just too much caloric demand from her overworked heart for her to keep up with how much milk she was taking in.
So we packed our bags and drove to the hospital where she was admitted for placement of an NG (nasogastric) tube. The tube was placed by inserting it through her nose and down into her stomach. After tube placement, formula or fortified breastmilk could be fed directly into her stomach.
It was hard at first to see our 3 ½-month-old suddenly looking the part of a “medical needs” baby. But it was necessary. The NG tube allowed her to get more calories without simultaneously having to burn calories by sucking.
There were some relatively minor consequences we knew would be a possibility. One of those was reliance on the tube for the majority of her nutritional needs.
At 13 months old, she still gets most of her calories from NG tube feeds. Although she still nurses, takes a sippy cup, and eats some solids, she does not know how to eat enough to fill her belly and keep her growing. Because she has not had to do the work to meet her own caloric needs for so long, she no longer knows how to. It makes me sad even to type that.
In addition to feeling sad, I feel guilty. I feel like it’s my fault she can’t get off the tube, even though I know it can be a side effect of an NG tube. I feel like I have failed to get her where she needs to be, just like I felt I’d failed her when she was losing weight—even though I knew then it was because of her heart.
I’m a little sensitive about my toddler’s NG tube. Not because I’m embarrassed by it. Not because I don’t want to talk about it. Not because I mind people asking questions about it.
Strangers sometimes ask why she has tape or a “bandage” on her face. People, especially kids, are naturally curious about it and perhaps also concerned for her well-being.
Sometimes when we’re out in public, people show clear concern for my daughter and her tube. I’ve been warned by anxious bystanders there is “something” dangling in front of me when she’s hooked up to her feed. I’ve been cautioned by worried cashiers that my baby is playing with it. I casually thank them and tell them it’s okay.
I have also been asked some interesting questions about the reason for the NG tube taped to my daughter’s face. I’ve been asked if she has an “owie.” I’ve been asked if she injured her nose. I’ve been asked if she has congestion.
None of that bothers me. I can handle those questions. I have simple answers for those questions that quickly correct misunderstandings or enlighten confusion. But there is one question I dislike very much: “When can she be done with the tube?”
It always drains me and brings up my defenses. When can she be done with the tube? Indeed, I ask myself that question often. Every time it gets caught on something. Every time I have to swaddle her in a towel and insert a new tube while she screams. Every time I try, unsuccessfully, to get her to drink more than an ounce or two of milk from a cup when she should be hungry enough to drink six.
Unfortunately, I don’t have an answer to that question I dislike. The one that feels like my failure. The one that implies the tube is unnecessary, yet somehow still present. I have to remind myself that my toddler’s NG tube is still necessary. I have to remind myself this is not my fault. I have to remind myself she will be off it one day.
I have to remind myself I am doing my best (along with her cardiologist, her pediatrician, her GI doctor, her nutritionist, and her feeding therapist) to get her where she needs to be nutritionally in a way that is healthy and safe.
And that is all that matters.
by Esther Vandersluis 
by Her View From Home 
by Neely Richer 
