We are preparing Elsie to do an intensive home-based tube weaning this summer. It has been on my mind nearly constantly for the last several months as we have researched and made plans. I have found myself asking myself why exactly I want Elsie to be weaned from the feeding tube, and these are some of my thoughts.
I can handle blending her food. This part I actually like the most about her feeding tube, knowing that I am blending good, wholesome, nutritious food specially for her. Yes, it is expensive, as I try to buy fresh produce as well as foods that are high in calories but that are also nutritious, such as avocados, nuts and seeds, and dried coconut strips, just to name a few. Yes it takes a lot of extra work and planning on my part, to make sure that we have enough blended food on hand for her every single day. Yes, we have to bring her specially blended food with us if we are going to be away from home for more than a few hours. Yes, my children tend to run from the kitchen when I turn on our amazing high-powered blender because it is incredibly loud blending up roast beef and frozen vegetables. But we can handle it.
I don't love the staring and strange looks we get from people when I feed Elsie in public, but I can handle it. I don't love feeding Elsie while we're at the zoo, and getting stares from grown ups who should know better. I don't love feeding Elsie at McDonald's, and having a ten-year-old child stand staring with her mouth gaping open, staring at us for a good 3 minutes or so. Whenever possible, I try to feed her before we go out to avoid the stares, but we can't always do that. I know that people don't get it and are trying to figure out what exactly I am doing to Elsie when I feed her, and they don't mean any harm. I don't love Elsie being a subject of curious, staring eyes while I feed her through her tube, but I can handle it.
I don't love her making huge messes whenever she attempts to eat orally, whether it be at home or at someone else's house or at a restaurant with the family. Elsie tastes food and chews it sometimes, but always spits out the remainder before it can be swallowed. This means she gets spit-out food on her clothes, on the table, on the floor, everywhere. Plus, like most toddlers, often she will have a snack with her as she plays around the house, which is fine, but this means that we have little trails of spit-out food all over the house. Luckily, we have two very nice doggies who take advantage of this situation and are constantly following Elsie around, licking up most of her rejected foods. But when we're away from home, we don't have instant doggie clean up. When we don't remember a bib, or when she rips off her bib after 30 seconds, the spit-out food gets all over her clothes. It's gross, and it's messy. I don't love it, but I can handle it.
What I can't handle anymore is the vomit. I've come to acceptance with the stained clothes and ruined bed sheets. I can deal with scrubbing carpets and mopping floors. I can handle all of that. But my heart hurts for Elsie when she vomits.Throwing up is such an unpleasant experience for everyone nearby, especially for the one whose stomach is doing the food rejection. Can you imagine how it would feel to vomit multiple times a week, every single week for your entire life? It's horrible for her. My heart breaks a little each time she pukes. Every time she throws up, it's that much harder we have to work to get her comfortable with food. Would you want to eat if you were constantly barfing? Would you want to taste new foods if your mouth was used to tasting unpleasant regurgitated food and stomach acid?
Elsie's own sister, who loves Elsie dearly, understandably doesn't want to be around Elsie when vomit is imminent. Evje doesn't like taking baths with Elsie anymore, because of the chance of a "barf'-bath" happening. She runs away and sometimes even screams when Elsie is next to her and throws up. She tells people she meets that Elsie doesn't swallow food and throws up a lot. If Elsie's own sister acts this way, can you imagine how it will be if Elsie is 5 or 6 years old and still has a feeding tube in school? Can you imagine how the other children will treat her when she throws up in school all the time? Nobody is going to want to be around her. No 6 year old wants to be friends with a chronic puker.
The other factor that is closely tied to the vomiting is Elsie's weight gain. I dread going to the pediatrician or any other appointment, knowing that she will be weighed. I hate putting Elsie on the scale and waiting with dread to see what number will pop up on the screen. I hate the feeling of disappointment I get from her doctors and therapists when her weight gain is minimal. Elsie has such a hard time gaining weight, first of all because she was born 17 weeks early, and second because she vomits all the time. I try my best to blend high-calorie, high-fat nutritious foods to help her gain weight, but I can't keep her from throwing it up. I have such a feeling of helplessness whenever she vomits the food I have spent so long researching, purchasing, preparing, and blending.
So how is weaning from the feeding tube going to stop her vomiting, you might ask. Great question. The majority of Elsie's vomiting arises from her gag reflex. After spending 160 days in the NICU with tubes constantly being put down her throat, gagging is what Elsie learned to do when something goes down your throat. She literally does not know how to swallow food without gagging, and consequently, throwing up. She is making very slow progress, and will swallow small amounts of liquids, and occasionally tiny bits of things like yogurt or ice cream. She also throws up a lot when she is sick and has increased nasal mucus in her throat. Once again, she doesn't know what to do with this stuff in her throat, gags on it, and vomits. When she weans from her tube and learns how to eat and swallow, her overactive gagging will decrease significantly. Other parents with children with similar gagging and vomiting problems have reported that their children have completely stopped gagging and vomiting just days after beginning a tube wean.
Those are a few of my somewhat unorganized thoughts. I want to wean her from the feeding tube to help her stop vomiting, which will greatly increase her quality of life. I want to do it because I know it will make her life so much better. I can handle everything else. I want to do it, for Elsie. She is ready, and I know that she can do this, with the right help.
Please help us stop the vomit! Support Elsie's fundraiser at www.gofundme.com/helpelsieeat