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What Does Rosie Eat?

Check out those arm rolls 😍

We joke all the time that Rosie has the healthiest diet of anyone in our house… but it’s NO JOKE! Rosie receives a diet of what I call “real food”- meat, veggies, fruits, juices, dairy-free milk, occasional GF grains. We blend a combination of these things and put them directly in the tube at meal times. When we were learning how to care for Rosie and feed her through the tube, we were told that nothing except medications and formula could go into the tube. 

Being that Andrew and I are both avid rule followers (we met working as RAs in college, so yeah, we uphold the rules) as well as people pleasers, we felt obliged to listen to this instruction. However, very early on, I strongly felt that we would not be feeding Rosie a diet of formula for the foreseeable future as we were instructed. 

Let me stop here and say that there is absolutely nothing wrong with formula for nutritional purposes. I believe that most parents are doing everything they can with what they’ve been given. I very much have a “you do you” approach to parenting in general and feeding your child is no different. I would never, ever judge a parent who feeds their child formula via G-tube or by mouth. For us, though, the blended diet is best. This post is to show how and why we feed our daughter the way we feed her. I’d also like to add that a blended diet is the exception, not the standard in tube-feeding, but many parents are searching for ways to feed their child without formula and are coming to blending and finding success in many areas. We are blessed to have a handful of people caring for Rosie (her pediatrician and cardiologist, the two I care most about) who support her blended diet and we are thankful for that. 

It Started With Breastmilk

Nothing makes you feel more helpless as a parent than to see your child in a hospital bed needing around-the-clock care from medical professionals. Nothing makes you feel more inadequate. My child was suffering and it felt as though there was nothing I could do. The one thing I could do was provide her the best nutrition possible, her mother’s milk. I exclusively pumped for the first year of Rosie’s life, six months of that being in the hospital. I would pump around the clock. I would power-pump. I would set a timer and leave Rosie’s bedside only to provide her with this super food. That was my primary job while we were there. I know this was meaningful to her overall wellness while she endured such an unimaginable fight for her life.

Given that I was providing Rosie with the best possible nutrition I knew of, when we got her G-Tube I couldn’t imagine transitioning her to a diet of mostly sugar and corn syrup for the foreseeable future. The good news was, Rosie was leaving the hospital at the age of about seven months, so breastmilk was all she’d need for a little while. There wasn’t any rush for us to decide what she would be fed via tube for the long haul.

In short, my philosophy was (and still is) that if I’d allow her to have it by mouth, I’d put it in the tube. So around the age of 10 months Rosie was introduced real food via her tube. My milk supply was decreasing and I wanted to be sure we had a variety of food she tolerated by the time I ran out of the freezer stash. Of course, I was extremely careful and introduced foods one at a time, as many would if they were feeding their child the old fashioned way. I talked to several other parents with tube experience and without. I felt very comfortable with my plan. Around 11 months, I reduced the amount of breastmilk she received to about half of the day’s calories, the other half coming from the foods she’d shown that she tolerated. This was basically a systematic wean off of milk and onto real food. The week after her first birthday, I ran out of breastmilk and Rosie was fed 100% real food.

A Word to Parents of Tube-Fed Warriors

This was right after starting the blended meals at around 11 months.

I followed my gut the whole way. When you have a child who is constantly being called “medically fragile,” has been through hell and back, and is still fighting for her life in many ways, it can be very easy to feel like your maternal instincts are taken away. Dear parent of a tube-fed heart warrior, I’m here to tell you that you still have those important maternal/paternal instincts, even if they aren’t being heard or respected and even if they look at a lot different from other parents‘. A lot of maternal instinct revolves around food. Heck, mom’s know when they hear their kid’s “hunger cry!” Its amazing! This instinct can definitely still be used when your child has a G-Tube.

When you leave the hospital with a tube-fed child, there is a tendency to treat them like they are still a patient. My advice is yes, do what you have to do for a period of time after you’re discharged. Keep the schedule like clockwork and be half nurse/ half mom. That is necessary to make sure your kid is getting what they medically need. But many of us will get to a point where we feel more comfortable and then I think we should loosen up as much as is medically safe and appropriate. One time I was talking to mom whose daughter was getting a G-Tube and she asked me about what to do if her daughter was due for a tube feed during the hours they were at church. Having had a few months of this life under my belt, I told her you simply feed your child after church! She was worried they wouldn’t be able to attend because of the tube. This seems silly, but it’s not. The tube life tends to be incredibly regimented like clockwork, so your life can tend to revolve around the tube schedule. The truth is that unless there is a medical reason for that strict schedule (and sometimes there certainty is!) you can give yourself some grace and simply make sure your kid is fed, like you know you will. If you’ve ever fed a toddler by mouth, how many days have you had in which you’re like “Did he eat anything besides cheerios, a banana, and some french fries off the ground?” Case and point. Your tube-fed child likely doesn’t need a feeding schedule that demands to-the-minute accuracy. If you hear that cry and think “I think she’s hungry… but her next feed isn’t for another 45 minutes…” FEED THAT BABY! Don’t go overboard, but just give the volume equivalent of a snack. Early on I was so afraid of getting off schedule with the tube feeds and meds that I didn’t allow myself to just be a mom and follow the cues as I saw them. Don’t allow this tube to rob you of your maternal instinct OR of your entire family’s joy. 

We’re Not Looking Back

The Lord gave me the will to go against the status quo on this one. I was terrified of messing up, but I have zero regrets in the steps I took to feed Rosie real food. 

I should note that I wasn’t left out in the cold on this. I have a local friend who also feeds her daughter a blended diet and she was a huge help in the transition. I called her about fifty times to double check that I was doing it right and I remember the day she said, “At some point, you just have to DO IT.” And I did! I also had a great RD from the CVICU who answered a lot of my questions. She was supportive of blended diets and helped me make a few decisions early on. On top of those two in-person supporters, I connected with a huge group of caregivers on Facebook who were all blending food for their loved ones. This gave me more information than I needed to move forward with our plan.

Since starting the blended diet journey I’ve had the privilege of answering the questions of a few new G-Tube moms. It’s an understandably scary step to take, but real food is totally worth it. I’m so thankful I had the opportunity to give back the support I was given so early on. If you ever have any questions, reach out and I’d be happy to answer them.

Disclaimer: Please don’t hear what I’m not saying here. I am not a medical professional, only a parent doing what I think is best. Consult your doctor before making changes.