Warning - if you have a dislike for details regarding food, reflux, puking, gastrostomy tubes and such, skip this post. If bits of medical information fascinate you, read on.
As I mentioned a couple of days ago, Whistle has had a few appointments with a feeding team at a children's hospital in the bigger city. The feeding team is a trio of specialists: a dietician, a psychologist, and a speech therapist, in connection with a GI doctor. (We've been told that occupational therapists handle the part of feeding to the mouth, and speech therapists take over with the mouth, chewing, swallowing and such. Also FYI - for some kiddos, if you miss the 'window of opportunity' for the transition from nursing to oral feeding, sometimes kids develop texture and taste sensitivities, and have psychological reactions to the sight or thought of food. Then, even though there's no physical reason they can't swallow, there are many other factors that come in to play, and eating is a struggle for a lot of reasons.) For Whistle, reflux has always been a major stumbling block. When he came to us at 14 months old (and only 10 lbs, 6 oz), he was being g tube fed 24 hours/day, with a very specialized formula. It seemed like the formula came up as fast as we pumped it into him. (His weight would verify that - one of our newborns was almost the same size. I won't say whom, in order to protect her identity, since she's a blogger). He had a Nissen fundoplication surgery to stop the vomiting, and from then on he was able to keep his food down better, and we switched to Pediasure (think Ensure for toddlers). From that point on, he began to grow. He did continue to have some retching and vomiting, though, and he began to connect the feelings in his stomach with pain, and food became a negative thing for him. He was tube feeding overnight, and had problems almost every morning between 4 and 8, when his stomach was the most full. It was not fun. We tried new formulas, new rates of feeding, and other tricks of the trade, but never could find the right combination. He'd eat a bite or two of spicy or crunchy food, but that was it. Last fall, he went back to eating nothing at all by mouth, and his stomach hurt much of the time.
We heard about this feeding team, and decided to make an appointment with the GI doc who works with them - the first step. For no good reason, it took months and months to get beyond the doctor and in to see the team. In the meantime, we discovered that he did better with a specific formula that is more concentrated that Pediasure (Resource Just For Kids), and when we switched to Resource Just for Kids without fiber, it was wonderful!!! The pain gradually went away, and we saw his appetite returning. Then we were ready to see the team, and hopeful that they could help us over the next hurdle.
Once we actually saw them, they set right to work! Before the first appointment, our local speech/feeding therapist helped us record Whistle's history: what we've tried, what worked, what didn't, and questions from her and from us. She went over all that information with one of the team members by phone, then faxed it. When we arrived, they were well-prepared. They talked to Father and I, and then watched Whistle eat from a hidden viewing room. They said they had no expectations, just wanted to know what a meal looked like for him, so we pretended like they weren't watching (you know how easy that was!). When we left, we had a plan! We were already doing many of the daily things they suggest, but some are new, and some we needed to be more faithful with. One change is to move some of the g tube feedings to meal times to help his feeling of fullness. The most valuable thing they are offering is their expertise on the balance between cutting back on the formula and continuing to grow, plus instructions on how to help him discover the normal feelings of hunger and fullness, and what they mean. We had not seen anyone before who was comfortable with cutting back his nutritional formula, but this group has experience with feeding challenges, and monitors it closely. All things have come together at the right time, and we're seeing successes!
We're not seeing the light at the end of the tunnel yet, but we at least are going forward down the track, and up to this point it's been 2 steps forward and one step back, so we're encouraged.