Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

Feeding Teddy part 2

on January 23, 2013

You may recall my experiencing some level of frustration with our nutritionist over Teddy’s diet. Add formula. Switch to formula. Formula, formula, formula. What about food, since he’s certainly old enough for food? Sure, I can feed him food orally, but anything he eats orally is just “extra” on top of his minimum amount of breastmilk. We don’t count it.  And when I asked over and over about putting food thru the tube, the answer was somewhat the same. First, that’s crazy and second, sure, you can put some jarred baby food through his tube, she supposed, but it would be extra. It wouldn’t count.

Now, I love pumping. (ha. hahahahahahahaha.) Ok, I’m happy to pump for my Teddy Bear. Willing, at least. But I’m not going to do this forever. Also, I want Teddy to be treated like a normal kid as much as possible. And normal 1 year olds are consuming food. Whether he eats orally or not isn’t relevant. I want to move him to a blenderized whole foods diet for his daytime feeds.

I’d prefer to do this with the supervision and approval (and maybe even help?) of our nutritionist. And even though the first nutritionist moved and we have a new one, it doesn’t seem that I’m really going to get the input that I was looking for. And I got tired of waiting. I pushed on this for over 3 months. Since the day I first syringed some peas into his tube in the hospital. (ok, he was on dialysis, manual passes, and we had largely finished our training, so that would put it at… Octoberish.)

So whatever. I’ll do it without professional help.

I am not an idiot and I have managed to a) keep Teddy as healthy as can be expected  b) not kill my other two kids  c) never poison anyone. I made myself an absolutely kick ass spreadsheet (which I have tinkered with endlessly – I heart spreadsheets). I’ve come up with a bizarrely wide variety of recipes. I’m having fun.

I spent the time between October and the end of 2012 introducing Teddy to various foods one at a time like you do with regular babies, and now I’m making blends, while still introducing new foods.

I started with replacing the calories, fat, protein, and general nutritional profile of 1/8 of his daily breastmilk intake with food blends. That went pretty well.  In December, the nutritionist wanted me to give him an extra 100-200 calories every day, as well. She suggested meat, though since we had JUST cut down his protein supplement because his BUN was reaching unacceptable levels, I decided to just stick with coconut oil for an extra 120 calories every day (per T) (and no potassium).

Then I got mastitis and my supply TANKED and I got a little desperate and I bumped him to 1/4 of his daily calories coming from food. On the same day that I tried a new blend with chicken (a new food) and oatmeal (which I was iffy on whether he tolerates it). Idiotic, yes. Desperate, remember? He puked all day. He stopped pooping. His blood pressure went up. I declared myself a failure. Vomiting with kidney kids can quickly get serious, because they dehydrate so easily, so I was genuinely worried that I had actually managed to screw him up and kill off his kidney and we’d end up on hemodialysis because I was an idiot.

I backed off, moved away from chicken and oatmeal, and went back to 1/8. He pooped again a few days later, showed a FANTASTIC weight gain, and his labs on the 31st looked great. So I didn’t screw him up too terribly much.

I had PLANNED to tell everyone what I had been doing at our appt on the 31st. And then I just didn’t. I kind of just didn’t (a bit like Cinderella in Into the Woods, I decided not to decide), and I kind of decided to wait until we had a bit more experience – and success – under our belts.

Fast forward to present day, I’m regularly doing 1/4 of his daily totals as BD (half of his daytime intake). I want to move him to all breastmilk overnights and all food days, but I’m not going to rush it and I’m not going to go there without approval from our team. We’re going to hold steady where we are and continue to add more foods to his diet to give him a better nutrient profile.

Next week, I’m going to think about switching from my current method (3-4 different blends each week, switching daily) to just making one large and full of goodness blend and giving him the same thing every day. Ultimately, he’ll get just as much variety, without my having to make so many different recipes each week.

Because he can’t tolerate bolus feeds, I make Teddy’s blends in our BlendTec and I make them VERY smooth and runnier than I would if I were pushing them in. (“pushing them in” = using a syringe and pushing food into his tube.) I modify his bags following the instructions here, though I don’t use the gravity set up, I actually just use his pump. The new nutritionist was telling me he’d HAVE to tolerate bolus feeds since you can’t do BD through the pump, but that’s really not true at all. Even the instructions that came with the pump talk about how to do BD with the pump, and the Food Safety instructions she gave me talked about it, too. Just use an ice pack to keep it cool, and you’re good.

Re, our first nutritionist. Honestly, the more I think about it, the madder I am that I wasn’t more aggressive with her when Teddy was still nursing a little. I think it was ultimately a losing battle, but our nutritionist certainly didn’t help, and almost certainly hindered. Anything he nursed was “extra” and didn’t count towards his daily totals. So I had to stuff him with more breastmilk than any other kid his size would have ever eaten voluntarily, and then if he wanted to nurse on top of that, it was fine. Yeah – like he was going to want to nurse on a full stomach! Ridiculous. I mean, seriously. You could not have PLANNED to sabotage a breastfeeding relationship any more thoroughly if you were trying.

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3 responses to “Feeding Teddy part 2

  1. 😦 I’m sorry about the breastfeeding. That does sound like sabotage. We had the “you can nurse her, but the second she starts to get anything, pull her off so she doesn’t aspirate” so you can guess how long she wanted to do THAT with no reward. 😦 Wish I would have just gone for it and seen what happened. *sigh* Oh, the things we wish we could do over.

    On the happy side, I’m sooooo glad BD is going well for him! Yay! You’re doing such an incredible job. I think you’re doing great at getting him as healthy as possible now and that can only help him post-transplant. Hang in there!

    • Steve parker says:

      What a tremendous amount of energy and commitment you are putting into all of this. Keep up the good work. Uncle Steve

  2. Abby says:

    That same bs about nursing being extra on top of h er tube feed is what killed my and Liv’s nursing relationship, too. I still am sad thinking of what she and I missed.

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