Thursday, February 12, 2015

#MiniSprayPal 2.0's Feeding Tube Journey


You may have noticed on our Spray Pal social media pages that we've been talking a bit more about #minispraypal 2.0's gtube lately.  It's interesting because I feel like I used to talk about it a lot more, but now that we've been feeding him this way for almost 3 years, it has just become second nature and I don't really notice it as much!  But, it's definitely a big part of who he is and a huge portion of our family routine with him, so I'd like to share a little bit about Ryan's gtube journey in honor of Feeding Tube Awareness Week 2015.

For those who don't know, Ryan was born a micropreemie at only 25 weeks gestation.  He was in the NICU for 7 months after he was born, and in that time he had numerous procedures and breathing episodes that required him to be intubated.  In fact, he was on the ventilator with a breathing tube for the first 6 weeks of his life as he fought against the odds to survive and grow.


As you can imagine, having a tube down your throat for an extended period of time can cause some long term damage.  Vocal chord damage, weakened airways, and oral aversion are pretty common side effects of long term intubation.  So, while we did work on both breast feeding and bottle feeding with him while he was in the NICU, he just didn't have the lung strength at that point to coordinate the suck, swallow, breathe routine needed to take a full feed.  So after 7 long months, our only option for bringing him home to continue his recovery was to give him a feeding tube so that he could take in the proper amount of nutrients and calories to help him grow.  There are so many reasons why someone might need a feeding tube.  This is just Ryan's story.

Luckily, since he did a swallow study and didn't show signs of aspirating, we are able to continue working with him on eating foods orally at home.  He currently receives 2 hours of Occupational Therapy (OT) each week and she works on a variety of things, but the focus for him is mostly on oral exercises and eating plus fine motor skills.  It's been a long journey and I wish I could say we're seeing progress in leaps and bounds, but our guy likes to keep us on our toes.  He'll jump forward one week and then take 5 steps back the next depending on a variety of factors including mood, whether or not he's sick at the time, etc.  But he does chug water like a camel and he is getting better at taking small spoonfuls of a variety of soft foods. 

I had opened this blog post up to questions on the Spray Pal page, and I'd like to address a few of them here:

1.  "Does he eat with his mouth now that he's older?" -Amy P.

I sort of hit on this answer above, but I'll expand a bit here.  Ryan does try foods by mouth, but it's a slow learning process for him.  As a result of his intubations he has an oral aversion and a very sensitive gag reflex.  So if we give him anything slightly chunky or solid, he typically pushes it out or chipmunks it into his cheeks or tries to swallow it whole which causes him to gag and throw up.  So we work a lot on exercises that train his tongue to push the food to his teeth for chewing.  Then we have to train him how to chew and so on.  So he's not like the typical toddler who sees food and wants to grab it and put in his mouth.  He's the opposite!  But, he hasn't met a toy he doesn't like to explore with his mouth first, lol.  And just as a disclaimer: this is Ryan's story...there are numerous people with feeding tubes who just can't eat by mouth for other medical reasons.



This was taken over a year ago, but his respond to solid foods is still pretty much the same now that he's a bit older. ;)

2.  "I always thought feeding tubes required some sort of medically specified food that you buy pre-made. I never knew you made it.  I'm curious what you give him, how often." -Sonia L.

I'm glad you brought this up as I forgot to mention it earlier!  We often get asked about what we are feeding Ryan.  During the first year, I pumped for as long as I could and built up a freezer stash, so he was getting fortified breast milk up until he was almost a year old.  Once I ran out of milk, we switched to formula, but no matter which brand or variety we tried, he always seemed to be more constipated and refluxy.  When he turned one, they wanted to switch him from formula to pediasure to continue to help his growth.  I wasn't really comfortable with the ingredient list on that, so we met with his GI doctor and a nutritionist because I had been doing some research on blenderized diet for tube fed babies, and I really wanted to try it.  Once we made the switch to real food, his constipation issues immediately cleared up.  He still had a lot of reflux issues so we had to play around with elimination diet to figure out what blend recipe worked best for him and what didn't.  The nice thing about blended diet is that you have complete control over what is going into his body.  If he's starting to get constipated, we can add certain foods or juices that will help.  If he's getting sick we can add more foods with vitamin C.  When we have leftovers from our meal, we can add it to his blend so he eats the same foods we do.  I swear he actually eats better than we all do because we can be sure he's getting the right balance of proteins, nutrients, liquids, etc.  We've been making him a fresh blend daily for the past almost 2 years and I wouldn't have it any other way!
Big sister helping make Ryan's daily blend.


3.  "What goes in his mix?" -@ItsyBitsyNecessities

We can vary the recipe based on his daily needs, but our basic recipe is: oatmeal, eggs, green veggies, carrots, a banana + other fruit,  honey, raisin bran, beans, bread, yogurt, milk, almond milk, and water. We may add a variety of other things if we have some healthy leftovers for example.  Sometimes we sub out some of the carbs for potatoes, the eggs for other proteins like peanut butter or meat, orange juice if he seems like he's getting a cold, etc.  There's a great page on Facebook that helped us out A TON when we were getting started with this, if you or someone you know is interested in switching to a blenderized diet, be sure to check them out (and talk to your doctor and a nutritionist first!!): https://www.facebook.com/foodfortubies. One other thing I found super helpful when making the switch was this youtube video:  https://www.youtube.com/watch?v=6aukCU-sFhg
This morning's blend before adding liquids. :)
A blend from almost a year ago.  Some variety, but not much has changed! ;)
If anyone has any other questions about Ryan's feeding tube or blenderized diet, feel free to leave them in the comments below and I'll try to answer as best I can. Thank you for taking the time to learn about feeding tubes and

3 comments:

  1. Thanks for sharing a glimpse into your everyday!

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  2. Very informative! Thanks for the info on blernderized foods :) ~ Sara (itsy bitsy necessities)

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