The feeding starts out just like any other. Slide Annie into the high chair against her will – she’s hungry, but not that excited about sitting. Push the tray back to hold her in and toss a few rice krispies on the tray to keep her busy while I get her food. Bananas? Check. Special textured spoon? Check. Feeding tube and syringe? Check. Carton of Boost? Check. Cellphone/timer? Check.
I unzip her jammies and get the tube attached fast, tucking her onesie back into the open gap made by the zipper so that the button coming out of her stomach – to which the tube is now attached – is at least covered up. Leave it exposed and she’ll be tugging at it curiously, acting completely nonchalant about how disturbingly far she can pull it up and outward. I spoon bananas into her mouth and she does a really good job keeping her tongue where it’s supposed to be, which is inside her mouth. For a long time she’s looked like Gene Simmons at a baby food party when it’s time to eat. You hold out the spoon and her tongue would come all the way out and down to her chin. I thought it was a sign of how excited she was to eat actual food, but it turns out that it just means she doesn’t have great muscle control. So we’re working on that in her weekly speech therapy (aka, eating therapy).
Today though, that little pink tongue is staying mostly inside and I can see it mushing the food around in her mouth. We’re making progress, so I feel less irritated by driving an hour each way for a weekly 30-minute appointment. Ten mouthfuls later she’s tired of bananas, so we move on to the Boost. I attach a 60 mL syringe to the end of feeding tube, pour in a little over an ounce of vanilla flavor pediatric nutrition drink, release the lever clamping the tube and….nothing. The liquid won’t move because Annie is mad. Mad about sitting. Mad that I won’t let her play with my cellphone or the open container of Boost on the table. Mad just to be mad, for all I know. So I sing, I talk, I tap on the tray, and I tap on the top of the syringe and finally the liquid begins to flow. This is the part I hate about the feeding tube – if she poops or laughs or grunts or basically does anything much more than sit quietly the liquid won’t go down. It might even come back up, which sometimes is just plain gross.
I give her three minutes between doses. Three minutes to slam stuff on her tray and throw rice krispies on the floor while I work on my breakfast and her stomach absorbs the liquid that I am pouring directly into it. I used to wonder all the time what that must feel like, if it feels like anything at all. I can’t imagine having food go right into its destination without the process of chewing, swallowing and generally doing what your body is supposed to do. If it feels weird to her I have no real way of knowing.
This week Annie has a cold and the amount of snot that pours out of her nose in the hour or so after she gets up in the morning is astonishing. Her big sister calls it a Snot Oh-Tack, and it is. If snot were gold I’d have a new tiara every day. All this snot means that Annie has a mean case of post-nasal drip. You know how it is. You sleep all night. You get up and it starts flowing. Annie’s swallowing problems have always meant that she couldn’t cough it out effectively. She’d have this little half cough, and you’d hear the congestion rattling around her upper airway and want to cough HARD for her, just to get it out.
Lately though, she does cough hard. So hard she makes herself throw up. This newfound coughing ability has coincided almost perfectly with the transition from formula to Boost. She’s 18 months old now, 14 “corrected” as they say. This means she’s ready to move on from formula. But with the feeding tube, you still have to A) feed her liquid and B) feed her something that has enough nutrition. Her neurodevelopmental specialist and dietician – Annie’s got more people than Oprah – chose to move her to Boost. This seemed like a miracle solution to me because it was less liquid volume with more calories.
With a feeding tube, you are required to feed on schedule. This means that you’re never really sure if the person is actually hungry or not, and you winding up feeling like you’re force-feeding them. But for Anne every calorie counts. She’s making progress on the growth chart, but they’d like her to pick up the pace. The challenge with the formula was that I had to give her so much in order to meet the desired calorie count that she would, literally, push it back up or throw it up. That pretty much sucked, so I was giving her less. I mean, who wants to do that to a child? She’s been growing fine. She’s been developing relatively on track given her teeny weeny beginnings. But now she’s old enough and not quite big enough that it’s time for a change. So, Boost it is.
I thought the transition was going fairly smoothly. Except that she got this cold right around the same time. For the past two weeks we’ve had more than one occasion where I’m almost done feeding her and she starts to cough. This is almost always after I’ve wiped away copious amounts of snot from her nose, and I know she’s most likely trying to clear her throat. She coughs up a great big hocker of saliva and you-know-what. She pauses. She coughs. And then she coughs some more and the whole dang meal I just gave her is pouring all over the high chair tray, all over her pajamas and onesie, oozing into the buckle of the chair, and then, if I don’t move fast enough, Annie is slapping at it like a baby duck in a puddle of water. Only it’s banana-vanilla scented mush and I’m going through half a roll of paper towels trying to swab it up before her whole body is coated.
Fifteen minutes later she’s had a bath (during which she remained standing the entire time because, apparently, sitting is so three days ago), the clothes and high chair seat cover are in the wash, the tray is clean and, most miraculously, I am clean too. I’m also in a mental panic. Why is she throwing up so much?! Is it really the post-nasal drip and the resultant cough that are bringing this on? What if it’s something else? And if it IS something else, what the heck is it?
Her grandmother thinks it’s the Boost. Or more accurately, she thinks it’s the amount of sugar in the Boost that’s disagreeing with Anne’s system. I know this because she cornered me the minute I walked in the door last night to show me the nutritional information on the side of the Boost carton. Even though I know she operates primarily from a concern for Annie’s wellbeing I wanted to scream at her, “WHAT DO YOU WANT ME TO DO?” Am I supposed to just stop feeding this to her? I’m pretty sure the two specialists who recommended this product know a thing or two about appropriate nutrition for children.
I, on the other hand, know only that there is so much I don’t know. I don’t know why Anne has a swallowing problem. I don’t know if it’s bad for Anne that the Boost has the amount of sugar it does. I don’t know if that amount of sugar is a lot or just a normal amount for that kind of drink. I don’t know when she’ll stop having ropes of snot come sliding down her upper lip or when she’ll learn to crawl safely down the stairs.
This is where the contrast between life at home and life at work comes into stark relief. At work our schedule might be crazy, every client may be in emergency mode and every deadline may seem to be a domino in an endless parade of cascading things to do. But it’s all manageable. Predictable. I know what to do and how to do it.
At home and with my children, I can only hope I’m getting it right. Sometimes you are lucky enough to gather evidence that you’re doing it right, like when the teacher tells you that your daughter stood up for a friend who was being bullied, or you hear your children courteously saying thank-you for something without a single reminder or even the slightest nod from you. In those moments you feel like something is getting through, and that maybe you know a little bit of what you’re doing after all.
But most of the time? I’m just making it up as I go along. When it comes to Annie this kind of winging it is a little scary. It seems like there is so much less room for error. However, I can’t stay worried for long. She is a joyful, funny, active and bright little girl who has defied statistics at every turn of her growth and development. I choose to have faith that it will all turn out okay in the long run.
P.S. As I was writing this post Anne’s doctor’s office called in response to my somewhat frantic voice mail after this morning’s puke fest. The reason they prescribe Boost and the reason it has the amount of sugar in it that it does is because it’s intended to help them gain weight. Just so you know.