After weeks of struggling with a nutritionist that refused to budge from her recommendations, I made an appointment with Will's pediatrician. I prepared a lengthy case with multiple talking points on why we felt using Will's feeding tube didn't make sense anymore. Fortunately, all I had to say was "If we can all get comfortable with Will's weight being low, then I think he can maintain it by eating on his own." His pediatrician immediately agreed. I didn't even need the tissues I had close by in case the conversation got so upsetting that I ended up in tears.
It was a good time to start because Will had just entered the 5th percentile for weight, and you might remember that he is almost always in the less than 3rd percentile for weight.
How did we do it?
We just fed him. We stuck to the basic schedule he has always had and still offered food and drinks in the way it was ingrained in us. Meals at 8am, 12pm, and 6pm. Snacks at 10am and 3pm. I still add extra calories to food whenever I can, but the kind of foods he eats are typical of an almost 3 year old.
How did it go?
The first week was awful. Periodically we give him a week-long break from his appetite stimulant because he develops a tolerance. The break helps it work better. He was due for that break the same week we made a change. As a result, I think he lost 2.5 lbs. He looked sickly but we stuck with it. If the new plan was going to fail then we needed it to actually fail. That was my complaint about the way we had been feeding him - it was a constant exercise in keeping him from getting too small, without knowing IF he would actually get too small. Also, the definition of "too small" is a vaguely defined phrase.
When he started taking the appetite stimulant again every day things looked better. He literally looked better so we just kept at it. Sometimes we would chant "Eat! Eat! Eat!" or use other creative tactics. We didn't check in with the doctor for a month. I actually don't remember what his starting weight was vs. the 1 month checkup weight, and I think that's the point! I'm very grateful that his doctor didn't want us to keep a calorie count. It was her idea to be very free about how we went through our day. He is still what people would consider skinny but his height is good.
I'm so grateful to his doctor because she also was cooperative with my request that we not give Will anymore Pediasure. This is the formula with complete nutrition he has had since he stopped getting breastmilk and preemie formula. I don't like Pediasure. I don't have a good reason to not like Pediasure, but I just don't. It's thick, it's sweet, and it's just a weird and unnatural thing to feed your child. Will's doctor clarified that Pediasure and his feeding tube were actually two separate issues - since often children with low weights drink Pediasure for the calories. All I could say to that was "But I hate the Pediasure". So she said to go with milk! What a difference it makes to be heard!!!
In that first week with very little eating and lots of weight loss, not only was the missing medication for appetite a factor, so was milk. Even though he has had plain milk several times with seemingly no problems he just wasn't drinking very much of it. So the solution was to mix it half and half with Pediasure. We had the huge month's shipment anyway so we might as well use it up. That has worked really well for him. It feels more like a weaning and the extra calories are nice too.
At the one month mark, Will's doctor felt it was going so well we could proceed with the same plan. When I told her we were mixing the milk with Pediasure, she said he may be having the same problem with milk many kids do - they just don't like the taste. She suggested we try easing Will into it by offering it consistently. So every day at lunch he drinks plain milk. How much? Who knows! I haven't kept up with it. It has been tempting to micromanage it, especially when you are TRAINED to do things in a precise way for a long time. But I relish not having to measure (or keep syringes and extensions washed for that matter)!
Eventually we hope he likes milk enough to stop the Pediasure completely.
What is the deal with Will's appetite?
I don't know. But I can tell you this, it's still not great. Eventually we will try withholding the stimulant.
What happened to Will's nutritionist?
Who knows?!?! She never contacted us voluntarily, we always contacted her when it was time to make a change. Now we have guidance from another source so there has been no need for her. I have to say that Registered Dieticians have difficult jobs and a lot of knowledge that I can't begin to grasp. (I was shocked at the amount of math they have to do!) Obviously they have helped Will. But we have not had access to any on a local level that were willing to listen to me. In the beginning, they didn't need to listen to me because I didn't know anything about Will's health or what was best for him. Following their plan closely in the beginning was not a mistake, but since their plan eventually stopped being what was best for him I'm glad we decided to go with another opinion.
How much does Will weight now?
I actually don't know! 25 lbs probably? He is weighed weekly at his nursing/daycare but I haven't asked what it is lately. Since the doctor doesn't want reports between his appointments with her I don't either. I feel sure he is again in the "less than 3rd" percentile. But his development in almost every other way is very good so I am fine with that. Before I had that proof that these other areas were good I cared more about weight. But his brain and body are clearly getting enough nutrients now.
On to other fun things!!
*Halloween - Will is going to be dressed as Superman.
*His favorite morning and afternoon activities are spotting school buses, ambulances, and fire trucks. We count the school buses and sometimes he starts over once we get to three. I don't know why.
*He is a good listener. We have warned him to be careful around our dog so often that he will frequently approach her and announce, "I'm going to be careful with Peaches!". All he wants to do is put his hands in front of her face so she will lick them...but after the 8th time she is usually tired of that game.
*Third Birthday - Will is excited about his birthday this year. He often mentions the "three candles" that will be on his cake. He likes for us to remind him that we will sing the Happy Birthday song to him and then he will get to blow out the candles.
Pretty soon we will have a THREE year old!!
