Tag Archives: feeding tube awareness week

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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Simply click to vote! It's THAT easy. Then feel free to browse some other really great mommy blogs. Thank you!

Simply click to vote! It’s THAT easy. Then, feel free to browse some other really great mommy blogs. Thank you!

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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 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

 

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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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FTA Week, Day 5: I love my tubie!

We love our tubie!

We love our tubie!

Today’s Topic: Valentine’s Day, I love my tubie! 

Well, that just goes without saying, of course we love Braxton! We’ve also grown to love his tube.  Yes, it was very scary and overwhelming at first, but now it’s really just second nature to us.  I love everything that it stands for.  I remember very well sitting in NICU and my stomach turning as the doctor explained the G-Tube.  Joseph and I went home that night confused and mad that he was going to have a feeding tube. As far as either of us knew kids weren’t supposed to have tubes.  I did some research and slowly began to accept the idea (well, whether I did or not, he was going to get it) and I also realized it was the best thing for him.  19 months later and everyday I’m thankful for the G-Tube and I know without a doubt it was exactly what he needed.  When he began eating by mouth we were so excited that he may have the tube out not too long after his first birthday.  Then he got pneumonia and we were back at square one, devastated.  All of his progress, down the drain. But what if he didn’t have the tube? What if he was eating fine and got pneumonia and stopped eating by mouth? Without the tube, he would have lost so much weight and been so unhealthy.  Since we had the tube, he was still able to receive some nutrition, he received all of his medicines, extra fluids, everything he needed — the tube saved his life – again.

It’s quite the paradox, the g-tube. It’s both a very big deal and also not a big deal at the same time.  In the grand scheme of routines and adjustments it’s no big deal now that we know what we’re doing.  It’s nothing to grab a syringe and feed him after we’ve tried pureed foods.  No big deal to ask for a glass of hot water when we are at a restaurant so we can warm his feed up.  No big deal as formula shoots across the room during a feed.  It’s just the way it is, it’s our “normal.” On the other hand, the fact that without it, Braxton would not be doing so well is a VERY big deal! This little 2-inch button and 6-inch extension is saving his life everyday! Braxton is 27 pounds! He’s followed along the 75th percentile for weight for quite some time, so there is no doubt that little man is healthy.  And with the switch to the blenderized diet, he is even happier and growing even more than before!

Braxton really has taught us so much along this journey.  Not just the medical stuff either, he’s taught us so much about ourselves.  We didn’t know we had it in us to be the parents we are today.  There really always is a blessing in disguise in situations like ours.  And every day we are thankful for our tubie.

Tomorrow’s Topic: Outreach Spread the Word, how are you spreading the word about FTA week – I’ll also be posting a Q&A based on questions we’ve received..if you have your own, please feel free to leave them in a comment! 🙂

For all Feeding Tube Awareness Week posts, click here!

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FTA Week, Day 4: We Can All Use a Little Help

FTA Week Flyer

FTA Week Flyer

Today’s topic is “We Can All Use a Little Help: What can friends and family do to be supportive, what do you want them to know?”

The Feeding Tube Awareness site actually has a really great outline for Friends and Family of tubies.  Worth a read! 😉

We have been very fortunate thus far to have such an amazing support system in place.  Our friends and family have been great, so when you guys read this, give yourself a pat on the back! And THANK YOU!

Some pointers for others who have family members or friends with tubes:

You may have to be assertive when you offer help.  – For us, I think it’s safe to say Joseph and I both don’t necessarily like to admit that we need help, and we also don’t want to feel like a burden, so when you ask, we’re probably going to say no.  If you really want to help, just do it.  “Show me how to feed Braxton, you go take a hot shower.” I think there are a lot of people out there like this, so if you really mean it and want to help just do it.  There are lots of things you can do. Actually, Mommies of Miracles put together a handy guide of possible “gifts” and many are just ways to help.  [Please don’t all run out and do them all at once.  Seriously.  We really do feel supported. I just want to put the list out for anyone else who comes across the page, but may not know how to help others]

Ideas on how to help caregivers

Ideas on how to help caregivers

Our tubie isn’t going to break. – It’s easy for some people to feel like they have to be gentle with a tube-fed child so they don’t rip the tube out or cause discomfort.  Now, I’m not saying to be careless or just yank the tube out, but many kids can tolerate “normal” playing.  Take your cue from the parents.  Fortunately, Braxton is just a regular little boy and I foresee more hospital visits for little boy things like broken bones and stitches than we’ve had so far for his condition.  haha There’s no stopping him when he gets older.

Be mindful of our schedules. – Don’t be offended if you invite us out and we say no. It’s not that we don’t want to hang out with you, but it really does take A LOT to work out qualified babysitters.  It’s hard finding a good sitter for “typical” kids, so finding one who can properly feed and care for Braxton is even more difficult.  Our parents live out of town, they are the ones we trust the most and they know all that Braxton requires.  For the most part, they can’t just get here at the last minute (so, if you invite us an hour before the event, don’t count on us being there – we need a little notice) Don’t give up on us though! If we can actually plan something out, we’re more than happy to go out or have dinner with you!

Have a willingness to learn.  – We are so fortunate that our family has a true will to learn all about Braxton and all that it takes to care for him.  It really means a lot to have people who WANT to learn and be more educated.  Again, thanks to our awesome support system.

Stand up for us. – The world is quickly becoming a frightful place full of hatred and fear of the unfamiliar.  Braxton and other tube-fed children are not monsters. They aren’t aliens.  They are regular kids with real feelings.  If you see someone teasing a special needs child/person, using the ‘R’ word (retard), spreading animosity — remember Braxton, remember the people you know whom you love and care for.  More importantly take it as if it were YOUR child.  What would you do if someone was being disrespectful of your child? Don’t be afraid to take the opportunity to stand up for us and educate the person.  True, that some people will never change or understand, but how do you know they won’t if you don’t try? Also, take the time to educate your own children about accepting people of all abilities.  Children are much quicker to learn, accept, and move on.  Teach them young so that when they are older they can pass that on to their own children.

Thank you again to our family and friends, you guys have been awesome and we really can’t thank you enough!

Tomorrow’s topic: Happy Valentine’s Day! I love my tubie!

For all Feeding Tube Awareness posts, click here!

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