First: Scarlett's MRI was clear! Her brain is looking very good now that her shunt is adjusted, and she checks out well. We changed her g-tube Mic-Key button for the first time, and it looks good, too. We don't go back to see neuro-oncology for TWO months, three if we are feeling comfortable enough to wait that long. All good!
Now...We have made a major change in Miss Scarlett's world. It's huge, revolutionary for us, and yet so simple it seems silly to even talk about it.
Now...We have made a major change in Miss Scarlett's world. It's huge, revolutionary for us, and yet so simple it seems silly to even talk about it.
Food.
Real food! No, she hasn't started swallowing more than a few bites. However, we are getting real food into thanks to her g-tube and a frighteningly powerful new appliance.
If you've been following us for a while, you know the trials and tribulations of Scarlett's diet. Before she was born, we said she would never have formula. When she was born, she could not latch properly, and overzealous, under-trained postpartum nurses pressured us into giving her formula within a few hours (she did fine as soon as I saw a lactation consultant and got the appropriate assistance). We struggled to learn to breastfeed for the first 2 months, then were forced onto formula when she was first hospitalized for the tumor and stress won over my milk supply. Then, around 5 months old, chemo had her so sick, she could not keep anything down, so she got an NG tube (nose to stomach). We kept trying to get her to eat, but slowly, she lost her feeding skills and was relying on the tube for the majority of her nutrition. A year later, she was given a surgically-placed g-tube, through which we have been giving formula. She enjoys eating a narrow selection of crackers, dried fruits and other dry snacks, but is not yet able to swallow liquids, and avoids cold things like the plague. We have seen occupational therapists, feeding therapists, gastroenterologists, nutritionists and no one really knew what to do. We have been trying to incorporate more oral motor exercise, encouraging her to chew, bite and mouth things, but very little has changed in the last year. Recently, we began looking into intensive inpatient feeding therapy programs that might help her.
We have been resigned to the idea of formula for the last year. With the hospitalizations and chemo, we just didn't have the energy to do much else. Formula did the job, and was an easy enough solution to her diet. When she got the g-tube, cans of Pediasure were provided by her insurance; cases are delivered to our doorstep - you can't beat that convenience. It is considered complete nutrition, and is labeled as "medical food". She could survive on Pediasure for years.
But that's it: just surviving. It's not thriving. Her most elemental needs are met, but she is not making much progress. She has gained almost no weight, and has not gotten much taller in 6 months; she still fits clothes she wore on her birthday in October, and her feet are smaller than average (just barely in an infant size 4). The primary ingredient of Pediasure, corn maltodextrin, is mainly used in making candy; that just feels wrong, especially after a year of chemotherapy. There are enough doctors involved to tell me that she is fine, that she is still on the growth curve (around the 5-10th percentile - the same as when she was born, but lower than 9 months ago.) They all agree that she should "stay on the lean side" while she is trying to learn to crawl and walk. They're the professionals - we do what they recommend.
Unfortunately, Pediasure is missing a major dietary need: fiber. There is a special formulation that has it, but not in the cases of cans stacked under her crib. We began adding fiber supplements to her feedings, but it was not really doing the trick. We added laxatives, which helped, but were not a good permanent solution. She was uncomfortable, and we were frustrated.
After surgery earlier this month, Scarlett was sick. No one was sure why, since there were so many factors (anesthesia, pain medication, inter-cranial pressure) to blame. She threw up many times a day, and we had trouble keeping any fluids in her. We tried a few different formulas, added nausea medications, more laxatives, and kept adjusting. She finally stopped a few days after we got home, but I was done. I had had enough of the smell of formula, especially formula that had been vomited up. It is the worst smell ever, and I was tired of it. I was ready to do something new.
A few days ago, I decided to try something. I took some baby food and thinned it out with formula, then put it through the tube. Scarlett didn't seem to notice any difference. The next day, I did it again and by that evening, her digestive system had regulated itself with no additional medications or laxatives. I knew I was on to something.
I started to investigate g-tube diets, and found a wealth of resources. Blended diets are common for people who cannot swallow, and there is a lot of support available online. The first few blogs I found discussed their reasons for changing over from formula, often after years, and I heard much of my own reasons in theirs. Learned some of the basics of blending for g-tubes, resources for nutrition information, and tips for clog-free feeding.
There is no real limit to the foods that can be fed through a tube - fruit, vegetables, grains, nuts, yogurt, meats, pasta, even dessert. Every mom and dietician has their own recipe they use to give tube-fed people complete nutrition, but the one thing they all agreed on was the need for a high speed blender. We had a regular blender, but it has nothing on the VitaMix. This monster is used in commercial kitchens and restaurants like Jamba Juice and Starbucks. The price was not budget-friendly, but we felt strongly that this is what we need to do for Scarlett, so we found a refurbished model (complete with a full warranty and cook book) and bit the bullet. It arrived two days later, and I have been a blending fool ever since.
Thanks to very impacted practices, we can't get in to see her GI doctor for a few weeks, so I am doing my best to match the nutritional value of Pediasure with real foods. We have been using Nutrition Data to calculate what we've been making, but I keep thinking that other parents don't do this. If your child eats normally, you don't calculate every meal's calories, protein, carbohydrates, fat and water. You do the best you can to give them a wide variety, encourage them to eat more vegetables and watch over time to see that they are growing appropriately. This is the approach I am taking until doctors (or Scarlett's system) tell me otherwise. So far, I have been very adventurous with foods: sweet potato, avocado, spinach, pumpkin, pears, apples, tomatoes, banana, peaches, whole milk yogurt, coconut milk, peanut butter, strawberries, blueberries, oatmeal, quinoa, mango, black beans - anything we have around the house or that looked good a the store, I have blended (and most of these things she has tasted before, so I am not too worried about food allergies, though I am watching for that). Every batch it a little different, and we are freezing containers to have on hand for the week. The VitaMix pulverizes anything I give it, and makes it so smooth that it doesn't require any straining - it goes through the tubing without a problem.
It's too soon to see much change, but I am optimistic. Other parents report seeing healthier skin, hair and nails after a few weeks. Many with kids like Scarlett, who are medically safe to eat but don't have the oral motor skills, say they see improvement in a few months, and wean from the tube after a while. The sensation of real food being digested (tasting in burps, etc. - gross, yes, but important) goes a long way toward encouraging normal eating. Her occupational therapist was thrilled to hear we were going to try this.
