Tag Archives: feeding tube awareness

Happy Tubie-versary!

Today marks 3 years since Braxton’s very first surgery, which was to place his G-tube.  Braxton was just 2 weeks old and still in NICU when it was placed.  You can read all about the Day Braxton Became a Super Tubie from last year’s post.

We have come a very long way in 3 years.  I still remember everything about the day we were told he would need a tube and the day of surgery. When his button was first placed, we honestly had no idea how long Braxton would need his tube and the doctors could not provide anything other telling us he would need to have it “long-term.” We have had many struggles with eating over the past few years and we are very grateful that Braxton has had his tube all this time.  His tube has allowed us to feed him even when he is sick, give him medicine when needed, and make sure he gets the nutrition he needs to gain weight in a healthy manner.

Braxton climbing in to his chair getting ready to eat!

Braxton climbing in to his chair getting ready to eat!

Braxton is finally eating by mouth, something we weren’t sure if he’d ever really be able to do.  He is eating about 30-40 ounces of pureed foods every day! He gets about 1100-1300 calories per day and we supplement with a multi-vitamin to make sure he is getting everything he needs nutrition wise.  We haven’t had to use his tube for food in quite some time, which is a magnificent feat! Braxton even tells us when he is hungry now, which is HUGE for a tube-fed child! Because children with feeding tubes are usually kept on such a strict schedule, they do not know or understand what it means to be hungry.  Braxton still does not speak, but he will “tell us” he is hungry by going over to his feeding chair, climbing in, and he will sit there until we notice him. If it’s not quite fast enough for him he will start to whine/cry to let us know “hey! I’m really hungry over here!” He’s eating every 2-3 hours right now and his schedule was every 4 hours before, so he is really understanding what food is and what it means to be hungry. He truly enjoys eating now, and that is fantastic!

We still use Braxton’s tube for fluids because he isn’t quite drinking anything by mouth yet.  We have been working on straw drinking in therapy and he has drank up to an ounce! We’re working on different flavors and increasing that volume.

So, we truly know now that Braxton will not need his tube forever, but it’s still not going to be taken out soon.  We want Braxton to be fully drinking on his own and eating “table food” before we remove his tube.  We are making significant strides in the right direction.

Braxton, Super Tubie!

Braxton, Super Tubie!

The other day, I saw a post on the Feeding Tube Awareness Foundation’s website about an interview with siblings of children who are tube-fed and found their perspective very interesting! Since special needs and things like tube-feeding really effect the whole family, the FTA group brought in this sibling perspective.  This inspired me to talk to Aileen about her brother’s tube and see what she knew and what she thought about his g-tube.  I recorded the conversation and thought it would be great to share in honor of his tubie-versary!









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

Feeding Tube Awareness Week 2014!

FTA Week 2014This week is Feeding Tube Awareness Week!! I have not been as diligent this year in writing as I was last year, but that doesn’t mean that FTA Week is not important, because it is! We proudly celebrate our tubie love.  Since I did not keep up with the daily topics, I’m going to do one post to catch up for the week. This will help me keep my answers short and sweet (ha, right!?)

Let’s do this.

Day 1: Share your Feeding Tube Awareness Week video and story.  

We did not make our own video this year, but we were a part of the video created by The Oley Foundation which celebrates people of all ages with feeding tubes! The theme for this year’s FTA Week is “Nothing Can Hold Us Back” which is clearly evident in this video.  Enjoy!

Most of you know our story, but if you are new, the short version is that Braxton aspirated at birth so it was not safe for him to breast or bottle feed.  Aspirating means that you are swallowing fluid in to your lungs instead of your stomach.  Braxton also had very poor coordination and low muscle tone in his face so he simply could not eat enough to sustain his weight.  At 2 weeks old, Braxton had surgery to have his G-Tube placed.  He quickly began to thrive and finally was sent home from the NICU the next week.  We have worked very diligently with our Speech Therapist on feeding and we are just now, at 2 and a half years old, seeing real success.  Braxton is eating pretty much all of his food by mouth now and we are only using his tube to give him water to keep him hydrated and supplementing his feeds just to make sure he is getting the calories he needs to maintain his weight and gain appropriately.  For more information you can read our post from Day 1 of FTA Week 2013 or get the full scoop on the Day Braxton Became a Super Tubie.

Day 2: Share your tips for feeding on the go or in public!

The best tip is: your kid HAS to eat no matter where you are so don’t be afraid to pull out your tube and feed your child! We were so scared in the beginning about what people might think of us or Braxton when they saw us using the feeding tube.  Would they think he was chronically ill or contagious? Would they think we were bad parents? That we MUST have done something for our child to be this way? It took a while for us to be comfortable with public tube feeding, but now it is really no big deal.

We have fed in restaurants, in doctors offices, while on a road trip in the car, at the park, anywhere! We always made sure we had the supplies we needed and we kept a few extra in the car, just in case! We were given a backpack from our medical supply company when Braxton first had his tube and required a pump.  It was easy for us to set up the feed and just go about our business.  We could go to the mall or the zoo and his backpack would hang on the stroller as the pump ran.

In the beginning, Braxton’s feedings were about an hour long and eventually decreased to about 20 minutes.  If we were going to be out long enough for two feedings, we kept the 2nd feed cool in a lunchbox or lunchbag with an ice pack.  We bought a portable bottle warmer for the car so that we could heat his food up on-the-go.  Many times, we would arrive at a restaurant and ask them to bring us a cup half-full of hot water and we simply placed the bottle in the cup to heat up.

Always plan ahead.  Think about where you are going and what you will need. An extra syringe? An icepack? An extra feeding bag? A change of clothes just in case the food doesn’t stay down? Make a checklist if needed, but eventually, you learn exactly what you need!

Day 3: Show how tube feeders can do what they love to do.

This was another thing I was worried about when we first got our feeding tube.  I wasn’t sure exactly how this might affect Braxton’s development.  I remember asking the doctor if he would be able to learn to crawl or have ‘tummy time’ since his tube was right in his abdomen.  The doctor assured us that it would not be a problem, and it surely wasn’t! Braxton didn’t crawl until he was about 15 months old, but once he figured that out there was no stopping him! Braxton quickly began crawling lightning fast.  One minute he was in the living room and the next he was in the kitchen pulling tupperware out of the cabinets.   We also worried about bathing and swimming.  I asked if we needed to cover his tube every time he bathed or avoid the swimming pool.  Again, the doctors assured us that he would be just fine.  So far, Braxton has not been limited in any way because of his tube.  He is thriving!
Here are some pictures of Braxton just being a regular kid!

Day 4: Share how you and your family cope with the challenges of life with a feeding tube. What has made the journey easier?

Support! We became involved with a local support group and met other families whose children are also tube fed.  Seeing and truly understanding that we weren’t alone was a big help to us.  Connecting with virtual support was also helpful.  Groups like the Feeding Tube Awareness Foundation really helped us understand that we were not the only family with a child who needed a feeding tube.  We have really learned to love and appreciate the tube for a number of reasons.  When Braxton would get sick often, we didn’t have to worry about him dehydrating or not eating because we could simply feed him with his tube and adjust the speed as needed.  Using the tube for medicine has also been helpful, because making a child take medicine by mouth is no simple task! As we learned more and met others the ‘stigma’ went away.  Now, Braxton’s tube is as much a part of him as any of his limbs! At the end of the day, the tube kept Braxton alive and we are forever grateful for that.

Day 5: What are your tube feeding hopes and dreams for you or your child in 2014?

Yummy in my tummy!

Yummy in my tummy!

Well, of course, we hope this is the year we have a tubie graduate! Yes, we are thankful for his tube and we have learned to appreciate it, we would love for Braxton not to depend on it so much.  He has recently made some really amazing progress eating by mouth and we are so excited! The next step is getting Braxton to drink by mouth.  We are working on straw drinking from a cup and so far Braxton is doing well.  He has drank up to an ounce of water in therapy taking small sips from a honey bear type sippy cup.  I tried some apple juice and Braxton was not a fan! We will need to work on flavors and temperatures before we can get graduate from the tube.  I’m very happy with the success Braxton has made and cannot wait to see what he accomplishes this year!


Day 6: Share the tubie love! Share pictures of you or your child living life to the fullest. Today is about living and loving life.

This one is easy.  Just glance through any of our photos on our Facebook page and you will see that nothing holds this kid back! Braxton is so full of life and love and happiness.  His joy simply pours out of him and into the lives of others.

Day 7: Share your favorite Feeding Tube Awareness Week post, photo or video.

I think I just did! I was not able to keep up with the daily topics this year, but I think this “catch up” post is perfect for FTA Week.  This captures all of the incredible things Braxton has been able to accomplish because of his tube and shares our story.  Thank you to all of the people who shared our photos throughout the week and our posts from last year.  We are looking forward to an awesome year!

FTA Week 2014



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Filed under Kids and Family, Life, Special Needs Child

The Day Braxton Became a Super Tubie

Since Braxton’s 2nd birthday I’ve been reflecting back on the past 2 years and the journey thus far.  Part of me is re-living every single day all over again and the other (larger) part of me is celebrating every day and the wonder that Braxton is. It’s all very bittersweet. I was also asked to write a guest blog post for another site about our story thus far and I thought it would be a great opportunity to write through many of the emotions I’ve been having lately.  However, when I went to submit my piece I found that the limit was 3 paragraphs and I had written well over 6 pages about the last 2 years.  I’ve been thinking about sharing the piece I wrote here instead, but then I thought instead of sharing it in it’s entirety, I will share it in pieces as I go through each of those early days again.   I didn’t start this blog until Braxton was about 13 months old, so there is a lot about his early days that I barely touch on in most of the posts.  While it will be good therapy for me, it will also be a good opportunity for you to see just how far Braxton has come and get to know him even better.

Logically, I’d start from day 1, but today, I’m remembering the day Braxton had his very first surgery at just 2 weeks old.

2 years ago today Braxton had surgery to have his G-Tube inserted.  I vividly remember everything about that experience.

Here is Braxton with the NG Tube

Here is Braxton with the NG Tube

Braxton had failed several trials with a feeding team who reported his poor oral tone made him difficult to feed.   A swallow study was also done and the test revealed that Braxton was aspirating everything he was drinking.  Each time he swallowed, the liquid filled his lungs instead of his stomach.  As this was very dangerous to his health, Braxton was being fed through a naso-gastric (NG) tube, which is a tube that goes from his nose straight to his stomach.  This of course made sure his food was going where it was supposed to.  Within his first week Braxton was able to regulate his blood sugars since he was getting his nutrition through the NG Tube. He was also gaining weight since he was actually getting everything he needed, and he was regulating his body temperature on his own as well. Each of these a critical step in Braxton being allowed to go home.

One morning, we walked in to see Braxton and the nurse stopped us almost immediately and told us the doctor needed to speak with us.  She paged him and we visited with Braxton as we waited.  When he arrived, I remember the doctor explaining to us that Braxton had reached 3 key goals that had to be met before his release.  The final piece was feeding.  Due to his failed feeding trials and the aspiration revealed on the swallow study, the doctor sat us down and discussed our options about feeding so that we could finally take our son home. The first option was sending him home with the NG-Tube and bringing Braxton back to work with the feeding team.  He went on to say that he really didn’t think this was ideal because an NG-tube was only meant to be temporary and based on reports from the feeding trials, Braxton was really going to need a lot of work.

The doctor showed us how the button would be placed through the skin to the stomach.

The doctor showed us how the button would be placed through the skin to the stomach.

Then, he told us about the Gastrostomy Tube (G-Tube). He drew a picture to explain it to us and told us this would be the best option so that Braxton could get the nutrition he needed and be released to work on feeding at home.  If the NG-Tube was temporary, in my mind, the G-Tube meant permanent.  I remember the fear we both had thinking Braxton was going to need this forever. It was also the first instance of realizing that Braxton would be different forever.

We went home that day and I researched G-Tubes and tried to wrap my head around it all.  I could not grasp the idea of a feeding tube.  What would it really look like? How exactly would we feed him? I felt it would all be so cumbersome and we’d never be able to go anywhere and if we did, everyone would see his tube.   I was mortified.  Would we look like failed parents? What would people think? What would they say? How would he be treated? I think those thoughts scared me more than the thought of the tube itself.  I could not find a single reason NOT to have the tube placed, and if it was really what would be best for him, it felt like it was the only thing to do.

The next day, we returned to the NICU and spoke to the doctor and had him explain everything again. One of the nurses also called someone to come and give us more of a hands on demonstration.  I remember the nurse bringing in “G-Tube Gina.” It was a doll they put a feeding tube on.  The nurse showed us exactly what the G-button was and the extensions and explained the procedure.  We felt a little more at ease about moving forward with the procedure, but still  we were scared about having to handle it all.  Within a few days, everything was set with the pediatric surgeon to come in and do the surgery.

Monday, July 11, 2011 we arrived at the NICU to see Braxton before his surgery.  We met with the pediatric surgeon and he again took the time to explain the procedure.  He would make a small incision below Braxton’s belly button and insert a small camera to guide him.  He would then have to cut through his belly to his stomach and insert the button.  It was a relatively simple procedure, but to a frightened mom and first time dad they may as well have been cutting off a limb.  I remember sitting with Braxton after he received the anesthesia and not being able to hold him.  The nurse told us he needed to be relaxed and that we could only hold his hand and no soft strokes or gentle touches.  We sat with him until it was time to go. I wasn’t able to go with him.  He was again wheeled off away from me and I just had to sit and wait.

The G-button

The G-button

The surgery really didn’t take very long at all.  The doctor came back up and reported that Braxton had done well with the procedure and the team was brining him back up and we’d be able to see him in just a bit.  I remember going back to the NICU room and seeing Braxton just waking up from the anesthesia.  The nurse showed us the button and went over some instructions on how to use it and how to clean and care for the button.  We were handed a folder with pictures, information and instructions.  Braxton’s feeds had been slowed down and with the new placement of the button we had to work our way back up to full feeds.  He was only given a very little amount every couple of hours to make sure he was able to tolerate the food plus the balloon taking up space in his tummy. The recovery time was 2 weeks.  However, instead of keeping Braxton the whole time, they told us they would keep him for the first week and then let us finally take him home.  The first week was critical in the healing of his stoma (the hole in his stomach around the tube) and it was very important the tube did NOT move at all or be wet.  The nurses were able to keep an eye on him and keep him from getting infected and the surgeon was easily able to come over and check him out each day.

Every day we visited they should us how to set up the feeding pump and how surprisingly simple it would be to feed Braxton.  A few days after surgery a representative from a medical supply company came to the hospital to actually give us the equipment we would take home and show us how to use it.  I was so nervous and scared learning about everything.  Joseph had already gone back to work so I really had to pay attention because I was going to have to teach him too! The learning curve was steep, but fortunately I did learn what I needed in that first week to be able to take Braxton home finally.

Looking back as my present self I can’t help but chuckle a little bit.  If I could go back to that time knowing what I know now I would laugh at myself and all the worry and stress that I had during those first couple of weeks.  Yes, it’s very scary when people start throwing terms around that you don’t understand, but it is really all going to be ok.  If I had told myself then that in no time you will be an expert I would have never believed it.

Braxton just hanging out with his tube

Braxton just hanging out with his tube

Braxton’s tube is now such a NORMAL part of our life I don’t even give it a second thought. When I run down the list of medical symptoms and equipment I often forget to mention his feeding tube because his tube is as much a part of him as his arm or his leg.  It’s funny when we see a different doctor at the pediatrician’s office and I have to run down a quick summary for them and then they lift his shirt to listen to his chest and say, “Oh, he has a feeding tube?” And I’m like “Ohhhh yea I forgot to mention that…oops” I forget that it’s different. As worried as I was about Braxton being different forever, I’ve now come to see absolutely no difference it all.   It’s just the way life is.  It’s our normal. His feedings have become second nature to us now and I never would have thought that sitting there in that chair 2 years ago as the doctor told us Braxton needed a G-Tube.

2 years later, we are pretty much experts with using his G-tube, caring for it and troubleshooting when necessary.  We’ve come a long way as parents since then and Braxton…well, Braxton is a completely different child than that little boy I held in the NICU.

Braxton began to really thrive after having his G-tube placed.  He gained weight a little too well and there were lots of adjustments in the beginning trying to find the right amount to feed him.  It was a little different trying to get the right sense of what he needed.  Typical kids will tell you when they are hungry and they eat until they are full.  A tube fed child doesn’t really know what it means to be hungry because they are kept on such a schedule.  There were days we had many appointments and we were an hour or two late with his feed and Braxton was just content.  No crying or fussing from being hungry or anything.

I didn’t realize it then, but his tube saved his life.  Without a feeding tube we would have taken Braxton home and continued trying to bottle feed him without success.  He wouldn’t have gained any weight.  Worse, he probably would have swallowed so much in to his lungs that we would have lost him.  I know now, his tube saved his life then and continues to help him live every day.  We are working very diligently with a speech therapist to get Braxton eat or drink anything by mouth, but having little success.  If he didn’t have his tube he would be completely malnourished and who knows what would happen. The alternative is definitely not something I like to think about.  Instead, I see a happy little boy who is indeed superhero like in every way since his first day in this world.  Braxton is a Super Tubie. A term coined by the Feeding Tube Awareness Foundation for all tubie children surviving and thriving thanks to their feeding tube.

Happy Tubie-versary, little man!

Super Tubie, Braxton

Super Tubie, Braxton


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

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!


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

FTA Week, Day 6: Outreach

Today’s Topic: Outreach, what are you doing to doing to spread awareness?

In addition to our daily posts, Tuesday, we had the opportunity to visit our local news station to share our story. If you missed that, check here.

Tuesday's Interview

Tuesday’s Interview

I have to say that I absolutely did not expect the response we have received. My goal was to help promote Feeding Tube Awareness, and while we seem to have accomplished that, it seems to have meant so much more than that! I wanted to share our story so that whenever we feed Braxton in public, we could do so without the ugly glares from people wondering what the heck we were doing. None of it was for fame or any kind of notoriety. Since the newscast aired, we had almost 800 views that day and days later we are still getting quite a few. A number of organizations also shared the story on Facebook, so we received much more coverage than just locally. I’ve received countless e-mails and facebook messages from families thanking us for sharing our story, thanking us for giving kids like theirs a voice, thanking the news station for putting our story on in the first place, thanking us for giving them hope, for inspiring them to continue on their journey. Needless to say, we have been deeply moved by the response. This is all so much more than we ever expected. I honestly don’t think of us as doing anything extraordinary. I feel like most parents would rise to the challenge and do whatever it takes for their kids. But if by us living our “normal” life brings you any kind of hope or inspiration, I’m greatly humbled and glad that our story could be that for you.

A couple days after our news interview, I was contacted by an online publication in the UK to do an interview for their site, Success Circuit, which shares inspirational stories from all over. You can see that interview here: Braxton’s Journey – A Story of Young Bravery Many thanks to Michelle of Success Circuit for contacting us for the interview, and working quickly to have it published on their site.

We have had quite the journey thus far with many ups and downs. We’ve been physically, emotionally, and spiritually broken. Somewhere along the way, something changed. We gained acceptance of our situation and learned how to make the best of it. All you can do is take it day by day. Don’t get so consumed with the future that you forget to live in the present. Thank YOU all for reaching out to us and sharing your own stories with us. Thank you for showing interest in our story, I hope you continue with us on this journey. Never lose hope. And remember that you are not alone.

Never Lose Hope

Never Lose Hope



I promised a Q&A blog today, so here are a few questions we’ve received this week:

  • How long will Braxton need the feeding tube? Honestly, we don’t know. Braxton was doing so well eating by mouth and just regressed when he got pneumonia and started vomiting every feed. It’s been about 5 months since then and we are starting to see some progress with oral feeding, but certainly not enough to remove the tube. As long as Braxton is happy, healthy and growing we are glad to have him keep the tube. We are actively working with a fantastic speech therapist, and I’m confident he’ll get there one day, I just have no clue when that is.
  • Are there any activities he has to avoid because of the tube? NOPE! He can do anything within his abilities. We either remove the extension tubing or tuck it in his shirt so it doesn’t get caught on anything while he is crawling around, but there really are no limits because of the feeding tube.
  • How often do you change the button? The G-Tube has to grow with Braxton. We follow-up with his pediatric surgeon about 3 months after we change to a new button. In the beginning, we changed sizes quite a bit because he was growing so quickly. Now, we’ve had the same size for about 6 months. As he gains weight the button needs to be changed. The length of the stoma is the only thing that changes. The doctor orders us a new button with a longer stoma so that it reaches all the way to his stomach.
  • Do you change it yourself? We do actually. The Mic-Key button can easily be changed at home. The next time we have to do a button change, I’ll be sure to make a video and share it with you. The first time we had to put the button in was pretty scary because we pulled it out 😦 The good thing was that we got it out of the way early so we learned what needed to be done.
  • How do you make his food? I need to do a video for this too. Since we switched to the blended diet, we are now able to feed him real food. I was using pureed baby foods at first and still do, but I’ve also started to buy regular chicken and beef, boil it and then puree it in our blender. I freeze the meats in ice cube trays and then put the cubes in freezer bags until I need them. I do the same with fruits and veggies. For our other posts on the blended diet, click here.
  • Does Aileen help you? One of Aileen’s hopes was to feed Braxton with a bottle. That’s the first thing she wanted to do when I told her I was pregnant. When Braxton came home on the feeding tube, we had to have a different conversation. I explained to her that Braxton needed a special way to eat and we found other ways for her to help. At first, she helped me pour milk in to the feeding bag, later I taught her what to push on the pump so she learned to start it and knew how to stop it when it started beeping. Now, I do let her help with the syringe feeds, but ONLY under my supervision. I definitely don’t expect her to feed him all by herself. It has been quite the balancing act this whole time finding ways to keep her involved so she doesn’t feel left out since Braxton requires so much of our time. She’s been awesome though.
  • Was it hard to learn how to use the feeding tube? Surprisingly, no. It was just a lot of information. There is a steep learning curve when it comes to tube feeding, but it’s something that has to be done often, so the repetition really helps you learn what needs to be done. We have been able to teach our parents and even my grandparents!

I think that’s all the questions we received, I know we’ve put a lot of information out this week, so I thank you for reading! If you do have any other questions about feeding Braxton, we’re happy to answer. Just ask!


Tomorrow is the last day! Sometimes You Just Have to Laugh: Tubie humor

For all Feeding Tube Awareness Posts, click here!

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