Blenderized Diet for Tube Fed People

I wanted to wrap up Feeding Tube Awareness week by talking about what we feed Teddy.

Most people with a feeding tube are fed a liquid formula.

I believed there was a better option.

First, we kept Teddy on breastmilk for as long as possible, and 100% breastmilk until he was 1 year old. Just like his siblings.

Then, I started him on solid foods. Just like his siblings.

Except Teddy got his food blended up into a liquidish form and put directly into his belly.

It’s entirely possible (despite what your doctors may tell you) to feed a person regular foods through their feeding tube.

Some families blend up whatever everyone else is having. I figure, I’m in 100% control of what he eats without having to worry about preferences or flavor… I’m stuffing him with super nutritious foods! He does not eat what the rest of us are eating. 🙂 (and we eat pretty good… I just prefer Teddy to have a more nutrition-focused diet while I’m still in control of it.)

It’s not super hard. It’s not a super lot of work. It’s not dangerous. As long as it’s blended smooth, it’s not going to get stuck in the tube. There are a million reasons doctors have for not recommending a blended diet, but the fact is that most of them just aren’t familiar with it, and the unfamiliar is scary.

“What if I want to try blended foods, but our doctor won’t let us?”

I chafe a little at this question, to be honest, because your doctor doesn’t have that kind of power.

When I made the decision to do this with Teddy, both his doctors and his nutritionist had been pushing formula for months and months. I asked them what they would recommend I feed him if he were eating orally. Would they recommend I put him on formula? Or at this age (1 year), would they recommend I start feeding him CKF-appropriate foods?

Then, after the answer to that was a bunch of stuttering and stammering, I calmly explained that I had decided to start feeding him regular foods through his tube. I didn’t ask. I didn’t open the floor for discussion. I just told them this was what I was going to do. And after a year of working with me… they possibly knew better than to argue, lol.

We went through three nutritionists after that. Bam, Bam, Bam. Then we landed with Susan, our current nutritionist. We were, at that time, her only patient on a blended diet, but she was willing to learn and follow our lead. 🙂 After a lot of initial uncertainty, she now brags about his diet to her fellow nutritionists (including our old ones, lol), and advocates for them to support other families if they show an interest in blended diets.

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Feeding Tube Awareness Week

This week is ALSO Feeding Tube Awareness Week.

I thought I’d take a moment this week to talk about Teddy’s tube.

Why does Teddy have a feeding tube?

Kidney disease often makes you feel nauseous. Perhaps because of this, or perhaps for other reasons, babies with kidney failure often don’t eat enough. Additionally, Teddy had high-output renal failure, which is a completely nonmedical way of saying that he peed out waaaay more than he should, and his body would literally pee itself into dehydration. To counter this, he required more intake than a typical baby – about twice what a typical baby would get, actually. We tried without the tube for about a month (from NICU discharge at 1 month until he was about 2 months), but during that time, he was chronically dehydrated, he was not gaining weight (and ultimately started losing weight), and our whole day revolved around Feeding The Baby. Or Trying To Feed The Baby. And meds. Forcing Meds Into My Baby. Forcing Breastmilk Into My Baby. Constantly constantly constantly stressing because he wasn’t taking in enough. When our doctor called to suggest it was time for a feeding tube, I agreed basically immediately (much to her surprise, lol). I don’t regret for a second.

Sometimes I wish we’d started off with the tube right away… but I’m ultimately glad we tried it without first. We tried. We failed. But we tried.

 

Why doesn’t Teddy eat orally now? Isn’t everything “fixed” since his transplant?

Teddy never really ate orally. He continued to use a bottle part time for a few months after his gtube was put in, but ultimately came to rely on the tube more and more. Ultimately, I don’t remember when but it was well before he turned 1, he stopped eating orally altogether, and actually developed a pretty intense oral aversion. Kissing him on the lips caused him to gag. Putting toys to his mouth caused him to gag.

He was also vomiting basically continuously during this time. (He’s had very very few days in his life where he hasn’t vomited – and most of the days with no vomits have been days he’s been on TPN – IV nutrition – while letting his gut rest.)

So… Oral Aversion.   Weak Mouth Muscles.     No recollection of how to handle food in his mouth.     Food is legitimately scary to him.

He’s made a LOT of progress since transplant. He is feeling better. He WANTS to eat. He has mostly figured out HOW to eat. He doesn’t gag any more. He puts everything in his mouth. (toys, I mean) But some textures and flavors of foods are still just too much. And some/many foods, he just can’t physically chew and move around in his mouth.

Congenital Heart Defect Awareness Week

This is CHD Awareness Week.

Why, you might wonder, is Sarah putting this on Teddy’s blog?

That’s right. Remember that routine echocardiogram in January? We didn’t find heart wall thickening like we were looking for. We found a heart defect instead.

Teddy has a heart defect called Bicuspid Aortic Valve. (Sometimes it’s called Bicuspid Aortic Disease, BAD, lol.) Your aortic valve (between your heart and your aorta – the giant artery leading from your heart to the rest of your body) is supposed to be tricuspid – with three flaps. Teddy’s has two flaps. So it doesn’t open all the way (making the valve area narrower) and it doesn’t close all the way, either.

Associated with this, he also has stenosis (narrowing/hardening) of his artery, as well as regurgitation (blood flows backwards). It all means that his heart has to work a lot harder than it should.

There’s also a risk of other effects such as aneurysms in the aorta, in the brain, and in the renal veins, as well as renal cysts (which I find interesting). They think that BAV might be related to an underlying connective tissue disorder, as well. And the risk of aneurysms, as well as aortic dissection, isn’t necessarily related to the degree of complications from the valve. (In other words, a REALLY bad valve doesn’t seem to be any worse than a just sort of bad valve.) Another complication is infective endocarditis (infection of the lining of your heart), which is an interesting one because being a transplant recipient puts him at a higher risk of endocarditis,  as well.

This is a relatively common heart defect. The BIG problem is if you have this defect and don’t know it – a good chunk of athletes who keel over suddenly, for example, are found to have BAV or related issues. If you do know you have it, you can monitor for aneurysm development (at least in the aorta and renal veins), and for the stenosis or valve function to get bad enough to require surgery – hopefully BEFORE something happens.

Chances are good that Teddy will need open heart surgery at some point in his life. Chances are also good that this won’t be during his childhood. Most likely not until he’s a teenager or later.

We won’t see cardiology until April, at which point we should have more information. I think it’s a good sign that they didn’t need to see us immediately. 🙂

And because I like to give people more information than they probably want, here are a few scholarly articles on the subject:

This is a general overview of Bicuspid Aortic Disease, with a few pictures.

 

And this:

BAV occurs in 1% to 2% of the population, compared with 0.8% for all other forms of congenital cardiac disease combined. Given that serious complications will develop in ≥33% of patients with BAV, the bicuspid valve may be responsible for more deaths and morbidity than the combined effects of all the other congenital heart defects.7 Although patients with BAV may go undetected or without clinical consequences for a lifetime, the vast majority will require some intervention, most often surgery. The important clinical consequences of BAV disease are valvular stenosis, regurgitation, infective endocarditis, and aortic complications such as dilation and dissection.

http://circ.ahajournals.org/content/106/8/900.full