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Sunday, February 24, 2013

Vanilla Elecare

Raya has never been a formula drinker. The reason she got an NG tube at 2 months old was because she was not tolerating or growing on breastmilk so she needed an easy-to-digest, relatively hypoallergenic formula. It smelled (and I'm sure taste) absolutly horrid, so she refused to drink more than a small portion of each of her 8 daily feeds. When she switched to Neocate Infant 2 weeks later, she drank it a little bit better but was having so much reflux, vomiting and general discomfort that she still just wasn't interested in drinking formula. We have never pushed her to drink her formula because we have felt like there was no benefit in fighting to get her to drink unpleasant tasting formula when there's a perfectly good tube to feed it to her through, and that the pushing from us should be towards eating solid food. Not everyone agrees with that sentiment, including the dietitian who lectured me for most of an hour about not putting blenderized food through the G tube (which we weren't really even doing) and pushing her harder to drink formula. The people who disagree with us have also not been in our shoes with our daughter, so although they may be educated on dealing with children who have feeding difficulties, they don't know Raya. I've been asked why we don't try to get her to drink flavored formulas or the other hypoallergenic drinks, and the honest truth is that Raya really has not been interested in those things and when you're trying to undo psychological damage from years of disordered feeding, some things aren't worth the fight.

Since Raya went elemental almost a month ago, she has missed eating the things she was used to eating. I didn't realize until yesterday that she is also missing another little ritual that we've had. For a good portion of the 2 years that she was on vanilla Peptamen Jr., our routine was that I would say, "Raya, will you get me a bag for your backpack please?" and she would get me a pump bag. Then while I opened the pump bag, she would run to the cabinet where we kept her cartons of Peptamen and bring me 4. Sometimes it took her more than one trip, but it was something she always wanted to do for herself and wouldn't let anyone help her with. She would shake them and set them on the counter for me. After I poured the formula into the pump bag, I would set the empty cartons on the counter and she would pick them up and drink the last few little drops that were left in them. Even I will admit that just a few drops of Peptamen tastes pretty good. It was our little ritual for probably a year, maybe more, and it's not the same now that we're back to Neocate.

She still brings me the pump bag, but since we're using powdered formula, I mix it in a big container, pour it into her pump bag and then put the rest in the fridge. It's just not the same. Honestly, it hasn't bothered me too much that she hasn't been under my feet and grabbing at the containers every time I'm filling her pump bag for the last month. What I didn't realize until yesterday though, is that she has missed tasting her formula every day. While I was filling her pump bag yesterday morning, she came in the kitchen and said, "Mommy, can I taste formula?" I didn't know quite what to say. I haven't been brave enough to taste Neocate on purpose. There were some accidental tastes back when we were using it before but we won't go into that. Anyway, I know Neocate doesn't taste good and especially to a little girl who is used to tasting very sweet vanilla Peptamen. I let her taste it anyway though. I poured about 5ml into a cup and gave it to her. I wish I had a picture of her face, and subsequent pictures of the formula dribbling out of her mouth, followed by me wiping the rest out of her mouth with a towel. It was cute but sad but cute.

After we had cleaned the slobbered teaspoon of formula up, I asked her if she wanted to try some vanilla formula. To my surprise, she nodded her head "yes." I guess she's really missed those little tastes. A friend had brought over a can of vanilla Elecare last week, so I got it out and mixed up a little bit. I really didn't expect her to want more than a taste, and would not have been surprised if she had spit that out too. She was very quiet and skeptical, but gave it a try.
To my surprise (and delight), she cautiously and thoughtfully drank the first 2 teaspoons that I put in the cup. (ps the cup was a scoop out of Donny's empty container of protein powder. great cup for a 3 year old who takes her beverages 2 teaspoons at a time.) When she had finished that, she softly and quietly asked for more. She ended up drinking 20ml (4 teaspoons) of vanilla Elecare before putting the cup down and telling me she was done. She thanked me for the "yummy vanilla formula" and went off on her merry way. Later on in the day, she had another small sip, and today I think she's had almost a full ounce. It doesn't seem like much and is really a drop in the bucket compared to her daily caloric needs, and I'm trying not to get too excited about it, but it really is exciting. Why? Because it was HER choice. SHE asked ME to give her some vanilla formula, and SHE has asked multiple times since then for more tastes.

The fact that she was being so quiet and calm about it spoke volumes to me. The majority of the time, she is not a quiet child. She makes her presence known. The only times Raya is quiet are when she doesn't feel well, when she's concentrating on something she's trying to do, and when she's thinking really hard about something. I wish I could hear what's going on inside her head at times like that. She was being very thoughtful about tasting the Elecare. She knew she wanted to taste it, but I could see that she was having to push herself to overcome her fear.

We are now in a unique position with Raya that I didn't ever expect to be in regarding food. (not that I ever expected any of the unique positions we've been in regarding food...) We've gone through so many phases with her and eating, but now we are finding ourselves in a place where she is no longer allowed to eat and she is realizing that she actually does enjoy eating certain things and that she does miss it. She has never had ANY interest in drinking anything but water. The sips of Peptamen that she would take were fractions of a teaspoon. Now that she is taking small quantities of vanilla Elecare at her own request, I'm hopeful that we could start introducing her to the other elemental options that are available, like chocolate Neocate and the different flavors of Splash. I really don't care if she ever drinks significant quantities of any of them, I'm just glad to have more options to let her try when she wants something to eat.

There is a part of me that wants to feel very optimistic about Raya going full speed ahead with eating once we're able to let her have food again. I think if we were to let her eat, she'd be blowing her old self out of the water right now. Not being allowed to have food has helped her to realize that she wants it. However, there is another part of me that knows too much to give in to that optimism. It's not that I don't HOPE she'll be a more enthusiastic eater when she's able to, but realistically, putting food back into her diet is going to be a very slow process. We haven't even started that process yet. Unfortunately, food allergies are not the only thing we're up against here. We're also dealing with the issue of delayed gastric emptying with solid food. Even if the foods she eats are not things she reacts to, there is still a problem with getting her stomach to move them through efficiently. We've seen the ill effects of this problem recently and have no way of knowing what the effects will be in the future when she starts eating again. Knowing what her little body is up against makes it hard for me to allow myself to be overly optimistic about her eating, but it does my heart good to know that her desire is there now. Who knew she'd ever be so happy about vanilla Elecare!

1 comment:

  1. Go Raya!!!! Making this choice is a big deal! Once, my son asked for some tomato soup I was eating. He got his own spoon from the drawer and I gave him a tiny bowl. He put the spoon into the bowl, jammed it around then picked it up. And looked at it. He was very quiet, his forehead was furrowed and he was concentrating hard on that spoon. He brought it to his lips (without touching), then backed his head away and scrutinized the spoon even harder. I believe he wanted to try it but something held him back. I still celebrated because he was making an effort. It's the little things :) And I think you should be excited about Raya's drinking - even if she stops, she still did it today on her own will. The desire is there, even if it gets buried beneath the medical stuff. That is cause for celebration.


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