Tag Archives: tube feeding

FTA Week, Day 7: Tubie Humor

FTA Week Flyer

FTA Week Flyer

Today’s Topic: Sometimes you just have to laugh: Tubie humor – we all have those funny tube feeding moments, what are yours?

Laughter really is the best medicine.  Many will learn about our story and think “Oh man, they have it rough” and wonder how we carry on.  Braxton is so happy and full of life, love and laughter – so is our home.  Joseph is probably the funnier one of the two of us and he definitely makes it his job to make sure we are laughing.  I can remember some of our most difficult times during our NICU stay or at the first genetics appointment (genetics can be pretty scary) and there was Joseph cracking jokes.  As much as I wanted to be sad, mad, or anything but happy – I couldn’t help but smile and laugh.  He may have the gift, but sometimes funny just happens around here. Especially when it comes to feeding Braxton!

  • Nothing funnier than shooting food across the room.  When we feed Braxton with the syringe, sometimes a little air gets in and to get it out, you turn the syringe upside down so the air is at the tip and you LIGHTLY press the end of the plunger until the air is all out.  Welllllll….sometimes if you push too much, food shoots out and gets all over everything! I’ve shot food from the kitchen across the living room and yes, even up to the ceiling.  I was feeding Braxton once and went to get air out of the syringe and ended up shooting food in the air and naturally, what goes up must come down…it landed all over Braxton.  Poor kid had food streaked across his face and in his hair.  As frustrated as I was, I just had to laugh as I reached over for the wipes to clean him off. [Actually, this has happened multiple times…oops]
  • When I started the blended diet I made some pretty stupid mistakes. The first time I got through the ENTIRE blending process and started measuring out the bottles.  On my third one I realized I didn’t even add the infant cereal to the blend.  I had to pour all the food back in the blender, add the cereal, blend and then re-measure.  Geez louise!
  • I also thought it was a good idea to prepare Braxton’s food while I was half asleep.  The recipe calls for 2 tablespoons of olive oil.  I had the measuring spoon in one hand and the oil in the other…I tipped the bottle of oil to measure out what I needed annnnnd tipped a little too far and there was oil all over the place.
  • If anyone heard some of the things we say in our house they’d think we’re crazy – “Welp, we fed the bed again.” [Braxton’s tubing somehow detached – or we never attached it – and got formula all over the bed….ugh], “Braxton, come here so I can tuck your tail in!” [Trying to catch Braxton to tuck his tubing in so it doesn’t rip out, “Ugh I wish you had a g-tube!” [Fighting Aileen, our non-tubie, to take her meds and secretly wishing she had a tube so I could avoid the fight], “Braxton is leaking all over the place!” [medicine port opened up, or forgot to clamp the tubing and the port opens and gets food all over], “What do you mean there’s no flow!?” [Yelling at the feeding pump for giving me an error message when I KNOW the clamp is open and there are no kinks in the line..oh, wait…actually, I never opened the clamp.] the list goes on….we’ve found ourselves saying some pretty odd things
  • Trying to troubleshoot why you can’t push food through the tube and you check the line, reposition the child, check the line again, press the syringe, check the line again and finally realize you never opened the clamp.  It’s also fun when you forget to open the clamp, push on the syringe and the pressure shoots the extension off and formula splashes back at your face. *sigh* yes, it’s happened. More than once.
  • Me: “We really should donate this formula that we aren’t going to use anymore.” Joseph: “Hellll nahhh, we need to be prepared for the Zombie Apocalypse” — haha we’ll all be living off Compleat Pediatric Formula if that ever happened.  We’ve got quite the stock pile now.
  • Driving all the way to the babysitter’s house, go to give her a refresher course on how to feed and say “so you connect this red tip to this extension — where’s the extension? Ughhhh we left it at home.” Driving all the way back home and back to the sitter…”Ok let’s try this again.” — I have extra supplies stashed in the car now.

I’m sure there are more, but you get the idea.  You can always find a reason to laugh even in the most difficult situations.  Don’t underestimate the power of laughter, and more importantly don’t be afraid to laugh through a tough situation.  It’s often difficult to see how this could be funny later, but trust me, it will be.

Braxton and I thank you for all of your support.

Braxton and I thank you for all of your support.

Thank you all so much for following along with me this week during Feeding Tube Awareness Week!! I appreciate each and every one of you who shared any of our posts and helped to bring awareness about feeding tubes! We can help to raise awareness all year long though! Please continuing sharing our story and the resources we blog about, you never know who it might help.  If we can help even one person along this journey, then we are completely grateful.

For all of this week’s post, click here. Happy Feeding Tube Awareness Week!

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FTA Week, Day 3: Help for New Tubies

Today’s topic is “Been there, done that” where current tubies are encouraged to share advice to those who are new to tube feeding.  So, here are a few pieces of advice for anyone new to the tubie world.

First and foremost, I’d want new tubies to know YOU ARE NOT ALONE! Not only is that this year’s FTA Week theme, but it is probably the most helpful advice I can offer.  Knowing that there are others out there in your situation is one of the most helpful realizations.  I encourage new tubies/tubie parents to find local resources.  Join the Feeding Tube Awareness Foundation’s facebook page and look for others in your area.  It took me far too long to realize that finding others who understand is important for your own mental health.  As parents, we often forget to take care of ourselves because we are so busy taking care of and worrying about our children.

That brings us to the second tip, take a deep breath and take care of YOU! An over-stressed, tired, sad, scared parent is NOT helpful for a child.  Your child needs you awake and refreshed. Don’t be afraid to take a few minutes to yourself!

Third, everything IS going to be okay! Entering the tube feeding world can be extremely overwhelming, but no matter what you think, you WILL get the hang of it, you WILL learn how to do it all, you WILL be able to teach others, you WILL inspire others, you WILL become the expert! You might even come to love the tube! We certainly have.  I blogged about our list of pros and cons, take a look.

Fourth, (this one comes from Joseph) pay attention! The tube definitely takes some getting used to, so be careful to pay attention and know where the tube is at all times.  About 2 months after we came home from the hospital, Braxton was connected to the feeding pump laying on our couch.  Joseph went to sit next to him, and unknowingly sat right on the extension tubing and pulled the button completely out…balloon and all.  Braxton cried a little, and then we saw his shirt was soaked with milk.  As we moved his blanket, we realized what had happened.  The doctors told us what to do, but we still panicked.  I finally got a hold of myself, took a deep breath, and remembered what the doctor told us about putting the button in.  I deflated the balloon, softly pushed the stoma back into the hole on Braxton’s belly, slowly added water to the balloon, and then sat and hugged Braxton until he stopped crying.  We felt horrible.  After a few minutes, Braxton was just fine.  There was no blood or anything, and I think we were more scared than Braxton was.  I would add to not be so hard on yourself if it does happen.  You aren’t a bad parent, it can happen to anyone! We learn from mistakes…if you aren’t screwing it up, you aren’t learning!

Fifth, don’t be afraid to ask questions. Ask the doctors, ask other parents, send questions to FTAF.  You don’t know if you don’t ask.  Not just about tubes, but don’t be afraid to question your doctors.  If the doctor recommends a formula or procedure, don’t just say okay.  Ask why it’s necessary, what they are looking for, what your other options are, and if something doesn’t sound right don’t be afraid to challenge them on it.  YOU know YOUR child best! Always remember that YOU are the only advocate your child has, so don’t be afraid to stand up for them.

Tomorrow’s topic: “We Can All Use A Little Help” What we want friends and family to know about tube feeding, and how to be supportive.

For all Feeding Tube Awareness Week posts, click here!

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30 Days to Make a Habit

They say that for something to become a habit, you must do it for 30 days.  Well, we are well over 30 days of trying out the Blenderized Diet and it is very much a habit now! This is by far the best decision I’ve ever made for my child.  He is tolerating the volume and the feeds extremely well. Braxton is doing so well with the new diet.   My only regret is that I didn’t start this sooner!  I was extremely overwhelmed when this all started, but once you get a handle on everything and find something that works, it’s really very easy.

I’ve found a couple recipes that really seem to work well for Braxton, and they are easy for me to keep up with.  I’ve started to make my own fruit, veggie, and meat blends too.  Jarred baby food gets a little expensive, so buying whole fruits and meats makes a lot more than what is available jarred.  Little by little I cook the meat or steam the veggies and then blend them up and freeze them.  I’ve used ice cube trays to save one ounce portions that I can easily thaw and add to the blender and even saved baby food jars to put my blends in.  I prepare Braxton’s blend nightly for the next day.  The blend is usually enough for about a day and a half, so every couple days I do get a break 🙂

Instead of posting each recipe and picture of nutrition facts, I’ve created a Google Doc that I can share with you all instead! If you are looking for recipes or need any nutrition information you can visit my spreadsheet here.

Braxton is even eating now!! Yayyyy!! I accidentally left his feeding success off our last post..yikes! It’s still a very slow process, but we are getting somewhere with him now.  Braxton is consistently taking about an ounce of food whenever I offer it to him.  We’ve tried pureed baby foods again, but I’ve also started trying other things like yogurt and pudding to see if he has a preference for different textures or flavors.  He wasn’t a fan of chocolate pudding *gasp!* I told him there was no way he was my kid if he didn’t like chocolate pudding haha He really seems to like Baby Yo’s Peach Yogurt though and he has been actively eating that when offered.  I’m so happy to see him making some progress with eating.  Hopefully we can get him back to where he was at with eating and move toward having his G-Tube taken out.  One day.  For now, we will keep working with him and celebrating all the little successes, because one day we’ll look back and truly realize how instrumental those were for him.

It’s exciting to finally post so much good news!! Brax has been a little under the weather this week, but overall he’s doing so well! We even have a slow couple of months coming up.  Aside from daily therapies, we don’t have very many doctors appointments coming up. Woooo! A break! Haha I was preparing our calendar for the next couple of months and was very surprised to see that we only have 1 appointment this month AND next month! Sadly, I sat and stared at the calendar for a good while thinking that I had missed something! Hopefully, I haven’t.  Until next time…..here’s Braxton 🙂

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More Blending Fun

I am very amazed at how well this Blenderized Diet is going for us.  Braxton is tolerating the new diet SO WELL! All of our issues with his vomiting have truly stopped.  I’ve accidentally fed him a little quickly and made him throw up, but I’m pretty sure that was a too much, too fast kind of thing and not an intolerance issue.  And call me crazy, but I really do think his hair is growing and getting thicker and shinier.  I read that that could happen, but I did NOT expect to see it so quickly! It’s been about two weeks  and there is already some positive differences.  I’m so excited for Braxton! It’s still a lot of work, but it’s getting easier and taking less and less time to get everything ready for Braxton’s feeds.  Seeing the amazing differences it’s made is all the motivation I need to continue forward with this.  I’m all for whatever makes my kid happy. 🙂

Since speaking with our dietitian I have tried a few other recipes for Braxton’s blenderized diet.  I’m still trying to find one that works for us – mainly making sure we have enough calories and all the necessary nutrients in a blend to maintain a healthy weight gain for Braxton, but we’re close! All of the blends are pretty similar and I’ve just changed out the kinds of fruits and veggies we use.  I still want Braxton to be able to try a variety of foods.

We’re also still working on oral feeding, since that IS the ultimate goal here.  Braxton is much more tolerant of feeding attempts now.  I’ve been able to get him to eat anywhere from half an ounce to a full ounce at one feeding, and he’s even taking some milk from a sippy cup!! Yayyy Braxton! Progress is definitely being made.

Braxton always reaches out to the bottle when I shake it so I let him hold it and he put it right to his mouth!

Braxton always reaches out to the bottle when I shake it so I let him hold it and he put it right to his mouth!

I put a little milk in a sippy cup and let him try it

I put a little milk in a sippy cup and let him try it

Braxton drank about half an ounce of milk from a cup!

Braxton drank about half an ounce of milk from a cup!

The dietitian sent me a few different recipes to try since she felt the initial one we were using had a little too much cereal for Braxton, so I tried out a couple that sent.

For our first few trials and recipes, see this post.

Trial 4

  • 12 oz Organic Whole Milk
  • 7.5 oz Happy Naturals Chicken w/ Gravy Baby Food
  • 8 oz Happy Naturals Carrots & Peas Baby Food
  • 4 oz Happy Naturals Peach, Rice & Banana Baby Food
  • 1/4 cup Sugar
  • 2 Tbsp Vegetable Oil
  • 1/4 tsp Salt

This recipe made about 36 ounces, which is enough food for one day.  We tried this recipe for a few days changing out meats, fruits and veggies but it was very thin and I think the added Sugar aggravated Braxton’s symptoms of Dumping Syndrome, because we did have some gagging and retching with this recipe. And he vomited once, so I added corn starch to the feeds and he did ok after that, but some gagging still.

Nutritional Facts for Trials 4-6 which used this recipe

Trial 4 Nutrition Facts Trial 5 Nutrition Facts Trial 6 Nutrition Facts

For the last trial I doubled the recipe to try to cut down on the amount of work for myself.  Also, my mom was reading our first posts on starting the blenderized diet and about needing a high speed blender (we weren’t ready to invest in one yet since we were just starting out), but she and my dad decided to go out and try to find one for my birthday/Christmas present [joys of having a birthday near Christmas].  She went to Sears, but when she asked for the Vitamix or Blendtec, they told her they didn’t carry it, but offered the Ninja Kitchen System, which they said was comparable. It has a similar design to the Blendtec Blender with the four sided blending container. It came with a 72 ounce container so I decided to test it out and make a big batch.  I still used already pureed baby foods, so maybe not a real test, but volume wise it worked great!!

Thanks mom!

Thanks mom!

Large capacity container

Large capacity container

Since Braxton was gagging even with the Corn Starch, I decided to try a different recipe suggested by the dietitian.  She gave us a spreadsheet with one recipe based on different daily calorie needs.  I started out with the 1,000 daily calorie recipe.

Trial 7

  • 1/4 Cup Gerber Mixed Grain Infant Cereal
  • 5 oz – Happy Naturals Beef w/ Gravy Baby Food
  • 4 0z Happy Naturals Carrots Baby Food
  • 4 oz Happy Naturals Applesauce
  • 1/2 cup Simply Orange Orange juice
  • 2 cups Organic Whole Milk
  • 1/4 Cream Half & Half
  • 1 Egg Cooked Scrambled – VERY important that the egg is cooked well!
  • 2 tsp Vegetable Oil
  • 1 Tbsp Karo Syrup

This recipe includes the infant cereal like our very first recipe, but it’s significantly less so hopefully easier on the tummy.  With Dumping Syndrome, Braxton does better when his foods have more complex carbs/sugars that take longer for his tummy to digest, so I decided to try this recipe.  This recipe made about one days worth of food and the calorie per ounce was less than previous recipes, but it still ensured 1,000 daily calories.

Nutritional Facts

Trial 7 Nutrition Facts

For the next one, I made a double recipe because we had a couple busy days ahead and I didn’t want to be up too late mixing food.  Basically the same recipe, but here’s what those nutrition facts look like.

Trial 8 Nutrition Facts

And finally, yesterday’s mix I decided to try out the 1,200 calorie mix.  Braxton had his 18-month checkup and he weighed 25 pounds 15 ounces, which is slightly less than he was when we started this diet, so I need to increase his calorie intake to make sure he’s gaining weight.  Here’s what the 1,200 Calorie recipe looks like

Trial 9

  • 1/4 cup Gerber Mixed Grain Infant Cereal
  • 2.5 ounces Happy Naturals Turkey w/Gravy Baby Food
  • 2.5 ounces Happy Naturals Chicken w/ Gravy Baby Food
  • 6 ounces Gerber Turkey w/ Rice & Veggies Dinner Baby Food
  • 4 ounces Happy Naturals Prunes w/ Apples Baby Food
  • 1/2 cup Simply Orange Orange juice
  • 2 cups Organic Whole Milk
  • 1/3 cup Cream Half & Half
  • 1 Egg Cooked; scrambled
  • 1 Tbsp Vegetable Oil
  • 2 Tbsp Karo Syrup

This recipe made about 42 ounces and is a little closer to the calorie per ounce goal we are aiming for.  Braxton really needs to have a blend that is about 30 calories per ounce since that is what the Pediasure was.  I’m thinking we my need to add in a feed daily, or find some more calorically dense foods to blend in.  The increased calories here only really increased the volume and not necessarily the calories per ounce.

Nutrition Facts

Trial 9 Nutrition Facts

When I started with this recipe, I blended the egg with a little milk separately in our Baby Bullet Blender just because I wasn’t sure if the Ninja System blender would blend it up smooth enough and I didn’t want chunks of egg floating around. WELLLLL, my grandma came in to show us how to make tamales and when it came time to shred the pork and chicken, I decided we could use the Ninja System blender and holy cow! It was amazing!! It blended a little TOO WELL for tamales.  I’ll definitely be buying whole pieces of chicken and putting this blender to good use blending up chicken and portioning it out in our stash of baby food jars we are starting.  Pureed baby food meat is close to a dollar a jar and although it’s not much, it adds up quick!! Some of these recipes call for 2-3 jars! That’s almost $20 bucks a week! I’ll try out some homemade meat blends and get back to you.  Until then….happy blending!

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Beginning a Blenderized Diet

Yayyy, Everyone is on board with Braxton starting a blenderized diet!  We saw his GI last week and spoke with him and a dietician about making the change and the doctor felt it was a great idea to change Braxton to a Blenderized Diet since he was having so many problems with the formula.  GI is also sending Braxton to have another abdominal ultrasound and Upper GI Scan to make sure that nothing in his anatomy has changed that is causing the vomiting and also to be sure he hasn’t developed a hernia because he has been vomiting so much.  We’ll do that next week, for now we are working on the new diet.

What is a Blenderized Diet?

A blenderized diet is essentially blending up REAL food into a liquid consistency so that we can still feed Braxton through his G-Tube.  With this new diet we could basically blend up anything we are eating and feed it to Braxton instead of that icky formula.

Why a Blenderized Diet?

There’s no definitive you HAVE to do this for your child answer out there.  Every parent has the right to choose how to feed their child.  We decided to give a try because Braxton has such a hard time with the formulas we have tried.  For one, how would you like to be on a liquid diet? It just didn’t make sense to continue to make Braxton stay on a completely liquid diet.  We want to maintain some sort of “normal” with him, and “normal” 18 month olds are already eating hamburgers and hot dogs! While we aren’t blending up hamburgers and hot dogs just yet, you get the idea.  We want Braxton to start having REAL food.  My research has shown me that several other parents started for the same reasons we have: formula intolerance, vomiting, gagging, retching and so forth – almost all of those parents said those issues stopped almost completely on the blenderized diet.  It also helps kids to be able eat by mouth faster.  A lot of parents have said their children are more willing to try oral feeding once they start with a blenderized diet, and at the end of the day, THAT is the goal! We want Braxton to learn to eat by mouth so we can eventually take the G-Tube out.  Other reported benefits include faster hair growth, healthier skin and nails, and better intestinal health.

Getting Started

There is a TON of information out there! Here are a few sites I checked out to gather some information:

  • Blenderized Food for Tubies – They have a fb group and website with a searchable forum. Lots of getting started tips and recipes from other parents.
  • Feeding Tube Awareness– All things tubie! They have a page of links and info on getting started as well
  • You Start With a Tube – A man WITH a feeding tube started this site and has a book “Complete Tubefeeding” Which is another great resource  Complete Tubefeeding
  • Mealtime Notions – “Homemade Blended Formula Handbook” Everything you need to know about homemade formula

After reading everything and talking to our GI and Dietitian I decided on a simple recipe to begin with until I’m comfortable moving up to more elaborate recipes.  Also, many will mention that you need a high speed blender like the VitaMix or BlendTec Blender (both companies offer discounts if you are purchasing for medical reasons). We do not have a high speed blender, so we are currently using our regular blender or our hand blender.  So far it’s worked just fine since we are using already pureed foods.  If this is something that works well and we have success with we’ll look into the high speed blenders.  No point in spending $400 for something if it might not even work! The point is, don’t be discouraged to try if you don’t have one of these blenders.

Here is the starter Recipe I used: (Said it was a 1,000 cal recipe, but I came up with a different figure) Following this recipe exactly also yielded about 60 ounces of food! o_O I’ll explain more in the next post about adjustments

  • 2 Cups Mixed Grain Infant Cereal
  • 12 oz Vegetable Baby Food
  • 8 oz Fruit Baby Food
  • 3 oz Pureed Meat
  • 16 oz Water
  • 4 tsp Olive Oil
  • 1 Tbsp Karo Syrup

With any of the recipes you find, you can use any fruits and veggies, but you have to follow the regular guidelines for “normal” oral feeding babies. You should introduce one food at a time for 3-4 days before switching to the next just so that IF there is a food allergy it’s easy to rule out what food caused the allergy. Since we’ve already gone through that process when Brax was eating by mouth, we have been able to mix foods pretty easily.

Our trials will be a separate post, just wanted to put out some info on the new diet we are trying.

Happy Blending!

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