Tag Archives: feeding tube

Feeding Tube Awareness Week

Big sister and Brax :)

Big sister and Brax ūüôā

Tomorrow kicks off Feeding Tube Awareness Week! I contacted our local news about running a story, and they invited us to come in to do a live interview in studio! Many families, like us, have no idea about tube feeding until they themselves are faced with the decision. ¬†¬†So, I’m thrilled to have the opportunity to share our story and help raise awareness for tube feeding. In preparation, we made a short video about our G-tube experience that we are sending the news station before our visit. ¬†I also wanted to share it with all of you who may have always wondered, but were afraid or didn’t know how to ask about how we feed Braxton.

 

 

For all our Feeding Tube Awareness posts click here!

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Our Blenderized Trials

So I gave you a little background as to why we wanted to start a blenderized diet and where to find info if you are looking to start as well. ¬†We have now been working on this for about a week and I’ve seen IMMEDIATE improvement!! Braxton has not vomited once!! [Might be a little premature to call this a success since the corn starch thing worked two weeks before it fell apart, but I’m hopeful this will work!] Speaking of work….holy cow! A blenderized diet is SO MUCH WORK! I’m officially more disciplined than I have ever been. ¬†You thought our medical binder was a big deal? Pffttt. I have a journal keeping track of our recipes and what worked and didn’t work, I’m counting calories, checking labels, creating and updating spreadsheets, scheduling time to make Braxton’s food, and somehow managing at least a few hours of sleep. ¬†Several other parents have this down to a science, and I’m sure I’ll get there eventually, but for now it’s a lot of work.

We do have a prescription from our doc for “Compleat Pediatric,” which is a blended diet formula available commercially. ¬†Since a lot of it is still processed and it has added chemicals and whatnot I opted for the homemade route. ¬†There is NOTHING wrong with using the formula, my speech therapist and GI both highly recommended it and said it was just as nutritious, I just thought I’d try the homemade route instead. ¬†We have it on hand for the days I can’t make the homemade blend or for traveling, but I’m trying really hard not to give in yet!

Currently, it takes me about an hour and half from start to finish (including cleanup) to mix Braxton’s food and put it in containers for the next day. ¬†I haven’t started making very large batches and freezing as we’re still working out the kinks so to speak. ¬†Don’t want to store a lot that we can’t use! So this week, we’ve tried 3 different recipes that I will share with you. ¬†As a reminder, I’m using already pureed jars of baby food until I get this down and then I’ll try using fresh/frozen fruits and veggies. ¬†I’m also using a regular blender instead of a high speed blender. Right now it is working just fine for us ūüôā Lastly, Braxton was feeding orally prior to starting this diet so we’ve already introduced most foods so didn’t need to do the normal introduction process. ¬†Since he’s already been introduced to many foods I’ve had a little more freedom in changing recipes around.

Trial 1

Here’s our first recipe we tried (along with some pics for clarification)

  • 2 C Mixed Grain Gerber Infant Cereal
  • 7 ounces Happy Naturals Squash Baby Food
  • 5 ounces Gerber Green Beans Baby Food
  • 4 ounces Happy Naturals Pears Baby Food
  • 4 ounces Happy Naturals Applesauce
  • 2.5 ounces Happy Naturals Beef w/Gravy Baby Food
  • 16 ounces 8 ounces Water
  • 16 ounces Whole Milk
  • 4 teaspoons Olive Oil
  • 1 Tablespoon Karo Syrup
  • 15 mL Lactulose [This is a prescribed laxative from his doctor, we added it just to make sure he didn’t get backed up]

Some notes about this recipe: The original recipe called for 16 ounces of water, as I started mixing this in my blender, my blender got full awfully fast so I decided to just use half the water since it didn’t add any calories anyway. ¬†Also, this being my first attempt, I made a big mess! I also mixed everything started portioning out bottles and realized I FORGOT TO ADD THE CEREAL!!! Geez louise! An hour into it and I screwed up. I poured all the bottles BACK into the blender and added the cereal then re-portioned out the feeds. It was very messy. Pretty sure I lost a few ounces of this mix. My first attempt took at least 2 and half hours to figure everything out. At the end I seriously questioned this whole process.

Here’s some nutritional facts about this recipe:

Nutritional Facts on 1st Recipe

Nutritional Facts on 1st Recipe

Here are a few pics from my first trial…

Here’s how the feedings go:

With his previous feedings we had to feed Braxton over an hour and a half on his feeding pump. With this diet, it’s a little too thick for the pump (could add water to thin and use pump) so we decided to use our syringe to feed him instead. ¬†This part we took pretty slow at first. ¬†We gave him 2 ounces of food from one syringe over about 5 minutes. ¬†I waited 5 minutes and gave him about 15mL of free water to wash out his tube and get some water in him. ¬†I waited about 15 minutes and then did this same process again until the feed was gone. ¬†Our first feed took about an hour just because we wanted to make sure he wasn’t going to throw it up all over us. ¬†He didn’t. ūüôā Not only did he not throw up, he tolerated 10 ounces actually because of the extra water. ¬†WAY more than he ever has. We’ve worked our way up now and I can feed him in about 15 minutes. ¬†I do 2 ounce increments of food until the feed is gone and then give him 2 ounces of water. ¬†What’s with the water?? Our body requires a certain amount of water to stay hydrated. ¬†While he is getting his nutritional needs, he still needs water to balance out the diet and keep his body working regularly, so we give him at least 2 ounces with every feeding and offer some between feeds as well. ¬†As this has been my main focus, I haven’t worked on oral feeds too much yet, but as I’m getting the hang of this we will definitely work on it!

Trial 2

So the first trial took for-ev-er and I made a huge mess. This one is gonna be better! Ha, took less time and I made less mess, but definitely not figured out yet. ¬†Here’s the recipe I used for this batch:

  • 2 Cups Mixed Grain Gerber Cereal [I did NOT forget to add it this time! – Ugh but don’t add it first, blend takes forever!]
  • 4 ounces Happy Naturals Sweet Potato Baby Food
  • 4 ounces¬†Happy Naturals Squash Baby Food
  • 4 ounces¬†Happy Naturals Vegetable Turkey Baby Food
  • 4 ounces Gerber Apples & Cherries Baby Food
  • 4 ounces Gerber Pear Baby Food
  • 2.5 ounces¬†Happy Naturals Turkey w/Gravy Baby Food
  • 8 ounces of water
  • 16 ounces Organic Whole Milk
  • 4 tsp Olive Oil
  • 1 Tbsp Karo Syrup
  • 30 mL Lactulose [no BM the past 2 days so we doubled the dose since this makes enough for 2 days]

Notes for this round: This makes A LOT!! Perhaps I lost more than I thought on the first batch. ¬†I portioned out enough feeds for 2 days and STILL had enough to freeze! Think I came up with 64 ounces from this feed. ¬†Decided that next time I’ll use NO water to try to decrease the volume it makes and increase the calories per ounce. ¬†Oh, and don’t put the cereal first, takes too long to blend. I had to use a rubber spatula to mix it in all the way. Oh, and the volume was way too much, I had to pour the mix into a large mixing bowl and use our stick blender to finish it. ¬†Worked well, but just a lot – portioned some into our Baby Bullet to help pour into the bottles and make less mess! ūüėČ No pics, mostly because they all would have looked the same! ha!

But, here are the nutritional facts for this one:

Nutritional Facts for Trial 2

Nutritional Facts for Trial 2

Trial 3

Things are getting better each time around! Taking less and less time as I figure my way around everything. Here’s the recipe we used. ¬†[If you’ve noticed, they are all pretty much the same, I’m just trying out different fruits and veggies]

  • 2 C Mixed Grain Gerber Infant Cereal
  • 6 oz Gerber Broccoli and Carrots w/ Cheese Baby Food
  • 6 oz Gerber Mixed Veggies and Turkey Baby Food
  • 8 oz Gerber Apple Blueberry Baby Food
  • 2.5 oz Happy Naturals Turkey w/Gravy Baby Food
  • 16 oz Whole Milk
  • 4 tsp Olive Oil
  • 2 Tbsp Karo Syrup [Tummy troubles, so increased the amount]
  • 30 mL Lactulose

Notes for this round: If you noticed, I did not include any water in this recipe. Mostly because it thinned the mix out so much and decreased the calories per ounce so Brax hadn’t been getting the calories he needs to maintain/gain weight. ¬†We decided to supplement by offering water between feeds.

Nutritional Facts for this recipe:

Nutrition Facts for 3rd Recipe

Nutrition Facts for 3rd Recipe

** Other Notes **

I have been e-mailing my recipes and notes to our dietitian so she can help track Braxton’s progress and offer me some guidance as this is all new to me and I am not anywhere near being an expert on this stuff. ¬†I heard back from her today and she told me we’ve been doing ok, but with the recipe I’m using she felt it was too much cereal for Braxton. ¬†Baby cereal is fortified with iron and very constipating so might be too much for him to handle. ¬†She gave me a few other recipes to try instead. ¬†[They are pretty similar, so I’m not too deflated about the progress we’ve made] I’ll be trying those this weekend. ¬†For now, I’ll leave you with the additional recipes she gave me.

Recipe #1: Easy to Make

  • 12 oz whole milk
  • 213 g strained chicken (3-71 g jars of baby food)
  • 1 small jar (113 g) strained peas
  • 1 small jar (113 g) strained carrots
  • 3.5 oz strained peaches
  • ¬ľ cup sugar
  • 2 Tbsp. canola oil
  • ¬ľ tsp. salt
  • Add all ingredients to blender. Blend well, until about the consistency of¬†milk or formula.
  • Calories: 925, Protein: 43 g, Carbohydrate: 104 g, Fiber: 6 g, Fat: 40 g,Volume: 1000 cc = 1000 ml (~33 ounces), 28 kcal/oz

Recipe #2: Low Cost

  • 16 oz reconstituted instant non-fat dry milk powder (2/3 cup non-fat milk
  • powder + 2 cups water)
  • 1 scrambled egg (cooked well)
  • 1 cup enriched macaroni (cooked tender)
  • ¬Ĺ cup mashed yam
  • 1 cup apple sauce (sweetened, canned)
  • 2 Tbsp. corn or vegetable oil
  • Prepare milk, egg, macaroni, and yam. Add all ingredients to blender.¬†Blend well, until about the consistency of milk or formula.
  • Calories: 955, Protein: 31 g, Carbohydrate 135 g, Fiber: 7 g, Fat: 34 g,Volume: 1000 cc = 1000 ml (~33 ounces), 29 kcal/oz

Here’s a spreadsheet of recipes based on the calorie goal you are looking for:

Spreadsheet based on calorie intake

Spreadsheet based on calorie intake

Until next time, Happy Blending! ūüôā

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Filed under Blenderized Diet, Family, Kids and Family, Life, Special Needs Child

G-Tubes: A Blessing and A Curse

G-Tube

This was after his hand surgery, but you can see the button and extension in the picture.

We had a lot of family and friends over this weekend and naturally, questions about Braxton arose. Nothing bad, but just makes me think more about the little miracle we have. ¬†Braxton has had his G-Tube since he was 2 weeks old and I remember very clearly how daunting the idea was. ¬†Now, almost 17 months later I have found so much that I love about Braxton having a G-Tube, and so much that’s not so great. We often get asked about him having his tube and how difficult it is, whether or not it bothers him, and so much more. ¬†For us, this is “normal,” for others, it’s new territory. ¬†Joseph has even said he hopes all our children need tubes..jokingly of course, but we’ve grown so used to it over time and have realized several advantages. Here are just a few things I’ve found I like and some that drive me nuts!!

A Blessing

  • First and foremost, medicine – have you ever tried to get a child to take medicine?! If so, you are well acquainted with the wrestling match that ensues. ¬†If not, allow me to enlighten you… No matter how “awesome” you make it seem or how much you flavor it, any kid sees a syringe or cup full of medicine and they’re out of your sight faster than you can blink. If you’re fortunate enough to catch them, you literally have to pin them to the ground sometimes and make them take the medicine! Maybe not always, but more often than not this is how it goes down. ¬†With the G-tube you lay him down open up the medicine port and push the medicine in followed by a little water to make sure it’s in the tummy. ¬†No screaming, no wrestling, no tears…yay! Definitely my favorite thing – especially since Braxton has been on medicine since birth basically.
  • Set it and forget it – With the G-Tube we can feed Braxton anytime, anywhere, and on the go. ¬†We don’t have to wait to run an errand or go to an appointment because of feeding time. ¬†We simply hook up the pump and Braxton feeds on the way. ¬†Actually pretty convenient. When he was younger we had continuous feeds overnight [we fed him over the pump slowly for 6-8 hours] We’d set his pump to only feed him a few milliliters at a time so that 4 ounces lasted about 4 hours. When the pump beeped that the feeding bag was empty we poured in another 4 ounces and set the pump again. From the beginning, I think this helped Braxton sleep through the night because he was constantly fed, and mommy and daddy got plenty of sleep since we were literally awake 5 minutes while we set up the 2nd feed of the night. Thankfully, we didn’t have too many sleepless nights due to feeding every 2 hours.
  • Sister can help – from the moment I found out I was pregnant Aileen was dying to be able to hold Braxton and feed him a bottle. ¬†Once we got the tube I thought her dream would be crushed, but we found other ways she could help. I’d let her help pour the milk in the bag, and even showed her what button to push to turn the pump on and off so now can run over and turn the pump off when it starts beeping or even do it in the car while I’m driving.
  • Always eating – Braxton gets his entire feed all the time. [With the exception of the vomiting spells he was having] Braxton is on a set calorie intake so we know exactly how much he needs to be able to gain weight in a healthy way. ¬†Some kiddos won’t eat when they aren’t feeling well and end up dehydrated. When Brax isn’t feeling well he may have bouts of vomiting, but we can always dilute the feed with pedialyte and/or run the feed a little slower to make sure he still gets it. We don’t have to adjust the feeding schedule just because he’s asleep or anything like that. He eats on time all the time.
  • Easy to learn – Sure, it was pretty scary at first and I can’t tell you how many times there were gaps of air in the tubing because I just couldn’t figure out how to set it up correctly, but it was very simple to learn and we’ve been able to easily show others how to use it without any issues.
  • We can still play. – While Braxton is eating we can still play and interact with him. Sometimes I’ll sit him in a chair with some toys in front of him on a small table and I can work with him while he eats. ¬†No jumping or spinning, but we can still have fun. ūüôā

A Curse

  • Beep, Beep! – I dream of that dang beeping sound! When the feed is finished the feeding pump will beep to let us know and we can turn it off. No big deal huh? Well, sometimes the pump beeps for no reason! It will say “No Flow” or “No Food” and the clamp on Braxton’s extension is clearly open and the bag is clearly full of formula but still it’s beeping. ¬†Usually it’s that there is some small kink in the line, piece of food got stuck in the tubing, or the sensor has something blocking it. ¬†There have been times that I “fix it” lay back down for bed and the SECOND I get comfortable…BEEP, BEEP, BEEP!!! Oh man, had a few nights that this went on for several hours…our pump was almost smashed with a hammer and thrown out the window!
  • Leaks – Go to pick up Braxton and his shirt is completely SOAKED! Not from spitting up, but because the extension came loose, the balloon lost water, the medicine port opened and leaked all over the floor, or the tube came loose from the extension! Talk about a big mess to clean up.
  • It pops out!! – I still remember the first time the button popped out balloon full and all. We were so scared. I quickly remembered the steps the doctor told us regarding how to put the button in, but I’d never done it before. It was either try to do it or rush to the ER 13 miles away and risk the hole closing and needing surgery again…I tried and I got the button back in just fine. Braxton cried because of course it hurt having it pulled out, but we were able to console him. ¬†Scary for sure, but glad I figured it out.
  • Medical Supply Company ¬†– We can’t just pick up an extra bottle or pump or bag at the grocery store. All the supplies for feeding HAVE to go through a Durable Medical Equipment (DME) company and ANY changes have to be authorized and it’s nothing that happens overnight.
  • Ball and Chain – Now that Braxton is mobile, it’s becoming increasingly challenging to get him to stay still for a feeding. ¬†We still have the pump over 30 – 45 minutes and anyone can tell you getting a toddler to sit still more than 2 minutes is impossible. ¬†Braxton will crawl across the room with the tubing stretched tight in the 30 seconds it takes to throw something away. We’ve had to sit him in a chair with lots of toys to try to keep him content, but I don’t think that will last much longer!
  • Clothing! – We had so many cute outfits we bought before Braxton was born that he couldn’t even wear! ūüė¶ Anything with a zipper was out of the question because it interfered with overnight feeds, couldn’t have him connected and zipped at the same time unless of course we cut holes in the outfit. ¬†I also have to have him in onesies as wearing plain t-shirts I’m afraid of the button getting caught on something and coming out. There is adaptive clothing available, but some of it is pretty pricey and there is plenty that works instead for now.
  • Daycare – Fortunately, we found a daycare that isn’t designated as “special needs” but is willing to work with us and learned to use the G-Tube and they’re just amazing. But finding childcare is very difficult. ¬†The moment I mention feeding tube everyone turns us away. ¬†Since we’ve moved I found no one in the area to care for him, so we’ve stayed at the daycare by our old house. It’s a little out of the way, but I love them and Braxton is happy there so we’re happy. I just fear moving further away…hopefully we don’t have to anytime soon.

I’m sure there are many other things I could add, but I’ll think of them later..This is simply our own experience with a G-Tube so feel free to share your own in the comments! I’d love to read some of your pros and cons of feeding tubes ūüôā

 

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