A Book for Tube Fed Children

We love this book-"My Tubey: A day in the life of a Tube Fed Boy". J and L love sitting down and listening to the story. L always has to pull up his shirt and show his tube when we read it. This book came about because a mom (Rhiannon Merritt-Rubadue) wanted a kid's book for her toddler who was tube fed. The toddler was starting to notice that no one else in her family had a feeding tube and there were no books written for kids about children with feeding tubes. She didn't get to writing it immediately as she was busy with a tubey toddler and siblings but her idea remained active in her head. In 2011 she wrote "My Tubey: A Day in the Life of a Tube Fed (Boy/Girl)". I love that she wrote a book for a boy and a book for a girl. We found out about this book from a support group we were attending for parents of special needs children. The book hadn't been published yet but we anxiously waited until it was for sale and got it as soon as it was available. The boys were too young to really understand what it all meant at that time but now they understand and like hearing the story.

J asking questions about one of the pictures showing a bolus syringe and feeding pump.

 L loves to sit and look at pictures.

She is currently writing several more books including:

• There's More Than One Way to Eat
• Bye-Bye Tubey: It's Time to Remove My Tube!
• My Tubey Goes to Preschool

From what I can tell none of the new books are not out yet but looking at her facebook page there was a comment stating that she is working hard to get the first book finished and it should be out in September. I am looking forward to seeing and getting the Bye-Bye Tubey book whenever it gets published. I pray we get to read it to L to prep him for getting his tube out soon (like within the next 2 years).

Take a look around her website there are several different thing to point out:

There is a link to her Amazon store where you can purchase her books

There is a little photo gallery that she shows some pictures from first NG to tube being taken out. Her quote is "I hope these pictures are a comfort to you as you may see your own tube feeding life mirrored back!".  My FAVORITE picture is about half way through where mom and daughter are sitting on the floor and both are covered in formula throw up. It is my favorite because the first year L had his feeding tube that was our daily normal until he got his GJ tube. Glad that we aren't the only ones!

There is a feeding tube resources page. I will be posting about some of those sites at another time along with some other cool sites I have found!

My second favorite picture on the website is on the "Contact Us" page. It is the mom holding her little girl and reading her a homemade book about getting her tube out. I love it because it is such a simple thing to do--make a quick fun book--but I would have never thought about making L a book. This mom has lots of imagination and a drive to make it happen! I envy those creative types that can bring a dream into reality. I can dream but when I wake up it is left behind and quickly forgotten. 

You can go to the My Tubey website or you can also click on the tab above for our Amazon store to find the books.

Review: Feeding Essentials Kiwi Backpack

I had been following this company's Facebook page for a while. They are cheaper than the super mini backpacks and a lot cuter. When a mom was selling her gently used Kiwi backpack we decided to buy it and give it a try. It was a cute navy backpack with robots on it. It came with the optional matching padded shoulder straps too. We tried it on L a couple times and here is what I think:

1. The quality of fabric and the durability of the backpacks are great. I don't know how long the previous mom used the backpack..there was significant fading and some wear spots...but the seams and all stitching was still strong and intact. This company knows how to make a durable pack. GREAT!

2. The additional padded shoulder straps were nice. They added a little comfort to the straps for L when his feeding bag was full of formula. GOOD!

3. This backpack also came with the additional chest straps. Here is where I get to some of the negatives of the Kiwi backpack FOR US. There are many people who love them for their child but it wasn't for L. The straps fit him good but without the strap pals (padded straps) the straps tended to dig into L's neck and shoulders especially first thing in the morning when his bag was heaviest. The additional chest strap was great to help us keep the backpack on L but it wasn't fixed to a certain site and would slide up and down the straps. We could never get it to stay where we wanted it too even after multiple strap adjustments. Another negative to the chest strap was that it bunched/wrinkled the shoulder straps and the shoulder straps wouldn't lay flat. I did some google searches and a majority of the pictures of other kids wearing the Kiwi backpack have the same issue. L was always pulling at the straps to try to make it feel better and would get frustrated with it. NOT SO GOOD!

 Notice how the straps wrinkle at the site where the chest strap are located. No matter how we adjusted we could never get them to lay flat. Maybe if they were sewn and in a fixed location.....




4. The size of the backpack is great. It is small and thin and easy for little kids to wear. The pump sits in the top zipper pouch and the feeding bag sits below it in the Velcro pocket. The only problem with the size was that there wasn't enough room to put our emergency supply bag in it like we could in the super mini.  There is a little pocket to put stuff in but it was too small and easy for little hands (Like L's twin brother J) to get into. The weight distribution was an issue for L. He is used to the majority of the weight being lower in the bag and he could never got used to it sitting higher. He would try to lean over to pick something up and the backpack would slide up, hit him in the head, and make him fall over. L never really complains about wearing his backpack but usually after 45min of wearing this backpack he would ask for it to be taken off and if you said no he would try to take it off himself.   
Actual Size: GOOD        
Weight Distribution: Not for L        
 Extra Storage Site/Size: BAD

 Top flap open to reveal the plastic sheet that allows for pump screen and buttons to be seen. That compartment is accessible through the top zipper.

 The storage area is between the robot fabric and the fabric that covers the feeding bag compartment. Not much room to put our supplies and since it is on top it is easy for curious brother to get into. Also there isn't extra room inside the feeding bag area to put supplies.

 This is the opening to the area that the feeding bag goes into. It is hard to get the bag into and also the Velcro piece to hold the bag on is very short. It is good quality Velcro that still holds strong even with a overfilled 500ml bag! One thing that I didn't talk about was that getting the tubing to the feeding pump and making sure it wasn't kinked was a hassle too.

 My hand is the the area that the feeding pump goes. Sorry I didn't use the pump but it was busy feeding a little boy! The top of the bag has a zipper opening for the pump and the clear plastic piece to see the pump.





 For us it wasn't the best pick for L so back to the drawing board we went. We keep it around because you never know when you will need an extra backpack and it is acceptable for an emergency backup backpack! I think if we had started with this backpack that L might not have had issues with it but since he was used to different straps and where the weight sits he didn't like it. Check out the site. There are more features and helpful AND cute products I didn't talk about but it is a company worth supporting!

Here is their website and a link to videos on Facebook showing how to use/load the backpack:
http://www.feedingessentials.com/
http://www.facebook.com/photo.php?v=501840457096

L's First Backpack for EnteraLite Infinity feeding pump

L got his feeding tube when he was almost 17 months old and changed to a GJ tube when he was almost 2. Because the GJ tube feeds the intestines (bypasses the stomach) you have to do continuous feeds. We needed a backpack that he could wear for 10 hours during the day. The backpack that came with his feeding tube was huge for him. It was almost as tall as he was so we searched for a backpack that would fit him. We found a super-mini backpack on Amazon that was made for the EnteraLite Infinity pump that L was using. The problem was that it was 80 dollars. We live on one income so that was a lot for one little backpack but L needed it so we scraped some money together and bought this one. We thought the blue and grey was cute and better than just the plain black. At that time there was also a red Hawaiian backpack that hubby thought was too girly. We got the backpack and it fit him perfectly. It took him some time to get his balance adjusted but after a couple days his backpack was a part of him. His little backpack didn't even slow him down. He put it on about 8 am and wore it until around 4 pm when he got to run around without it on for a couple hours before bed. At bedtime we would hang the backpack on the knob of the dresser right next to his crib and his pump would run all night.

L wearing his super mini backpack

L's first day of school wearing his super mini backpack

Fast forward 6 months....His backpack started coming apart at the zipper seam and pulling apart. We were a little disappointed that it had only been 6 months and we were already having to buy another backpack but considering he wore it every day all day long we were okay with getting him another one. We bought a solid black one this time from the same company on Amazon even though the solid black was $100 now. Not even 2 week into wearing the new backpack it started falling apart. We were mad! How could something so expensive that is made by a medical company that knew that kids were wearing this backpack just fall apart after 2 weeks? Well we returned it to that company and after some angry emails we got our money back. Luckily we had a friend whose child had a feeding tube but didn't need the super-mini backpack anymore so she gave it to us. It was amazing at the quality difference between that older one and the one we just returned. It was heavier duty with thicker fabric and the seams were strongly reinforced. It was like the company making the backpacks decreased the quality of the backpack over time while increasing the price. Ridiculous! We also found someone giving away their backpack on Facebook so we had 2 good backpacks and those lasted us until last month. When we looked to see how much the backpacks were currently running we found prices between 75-130 dollars. We decided to try a couple different backpacks and I will tell you about those another day! Here are some pictures of the old backpacks and the good and bad of the super-mini backpack:

The back pack has a front zipper so you can access the pump easily and elastic to hold in place.

You can see that the bag (500ml bag) sits a little above and behind the pump. The location of the pump and bag disperses the weight evenly.

Behind the feeding bag is a little mesh pocket that we use to have our emergency items in case we need them. We keep a 5ml syringe, roll of tape, NG tube, armband (from a hospital admission) with his information on it, extra GT button, drain sponge, and extension tube. Sounds like a lot but it is pretty compact.

The backpack has a "chest" strap that is really helpful for when your stubborn 2 year old gets mad and thinks the way to defy you is to take off his backpack! Even if he gets his arms out of the shoulder straps the chest strap keeps it from falling and possibly pulling out his tube. The problem with this strap is that it is very low and sit right on his GJ tube which can sometime cause irritation. One of the backpacks we got from Facebook had the straps cut off so we had to tie the extra length on the shoulder straps together. He can't get the bag off when we do that so now he will drop his pants. Another story for another time!

The Good:  Velcro strap that fits around the bag and there is a hook for extra support to keep the bag lifted up and prevents lines from getting kinked.

The Bad:  The velcro wears out very fast and most of the time comes undone but the hook keeps it from falling down. The newer bags are a little harder to hook as the holes to hang the bag with are more compact than they used to be and there isn't a really easy spot to clip the hook anymore.
 
The next two pictures are of the bag that the zipper has fallen apart on. You can see that the thread that holds the zipper to the backpack seam has come undone and the zipper actually separates from the bag. Once the zipper starts separating from the seam it makes it really hard to zip up and usually starts damaging the zipper. At that point there isn't much you can do with the bag. J likes to play with them and put his matchbox cars in them. Both worn out bags are in the toy box! The bag that we returned had issues with the seams. They were poorly sewn and came apart but the zipper was still intact. The only good thing about that was that we were able to use safety pins on the seams until we quickly found a replacement bag.

         

*Something to remember--always have a back up bag! You never know when you will need it. It always seemed we were on a trip when the bags fell apart.

*Also remember that you can click any of the pictures to see it larger and in more detail!

L and his feeding tube

L has a Mic-key GJ Tube (a tube that bypasses his stomach) that provides all his nutrition because he will not/cannot eat enough to keep himself alive. L didn't get his tube until he was 16 months old and we had tried everything we could and followed every advice we could to try to get him to eat and gain weight. Getting his feeding tube was something we knew had to be done but we waited until we had exhausted every other idea before we consented. He started with a Gastric Tube (GT) that put formula into his stomach. He couldn't keep the formula down and was tiny because he couldn't gain weight so we switched to the tube that bypassed his stomach. He started gaining weight and became a happier healthier boy! This is the short side of the story.

We struggled with his eating, weight gain, reflux, vomiting, and many other things until he was almost 2 years old. He will have had his GJ Tube a year in August and even though life is easier, we still have our struggles. L still won't eat and only drinks about 1-2 ounces of fluid (usually water) on a good day. He is in therapy at his daycare and S L O W L Y takes little steps toward our goal of getting rid of his feeding tube. We are about to do one of the last tests to check him for something that may be causing his swallowing problems. After that we are going to really push eating and drinking and maybe do an intensive feeding program. I will say that one thing hubby and I both agree on is that if L has to be tube fed his whole life, we are okay with that. He is a miracle little boy who has an amazing story of God's healing in his life. With all that "could have been" we are so thankful that this is his only major lingering issue. There is so much more that I could write about but it would take months to get it all down!

There are many things that hubby and I want to use this blog for: sharing our thoughts, saving you money, sharing yummy recipes, and technical stuff I have no clue about! I also want to talk about what we go through with a son with a feeding tube. There are very few resources/information for children with feeding tubes and we want to share what we find. The more people that talk about it, the more attention it will receive, and more resources will become available! Even if you don't have a child with a feeding tube, chances are you will run into someone who does or a friend of a friend will surface that could use information. I hope that we can become a place where people can turn to for information!

I LOVE MY TUBIE AND HIS TWIN!

-R