Tag Archives: g-tube

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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Feeding Tube Awareness Week Gets Media Coverage

Today, we had the opportunity to visit our local KXAN Austin News to talk about Feeding Tube Awareness Week and a little about our journey. Here is the link to the story and video from KXAN:

I am so grateful to KXAN for inviting us in the studio to share our story. The entire staff from the front desk receptionist, the anchors, and the newsroom were so incredibly nice and made the experience a bit easier for us.  We were so nervous! There is so much more I could/should have said, but time was limited and my brain was in shock as soon as I realized this was really happening!

And I am totally and completely moved by the outpour of love and support from our family, friends, and even complete strangers who have shared our story.  WE are incredibly blessed to have Braxton in our lives.  And as Joseph mentioned in the video, we are better parents because of him.  Thank you for reaching out to us and for all of your kind words and messages.  I hope that you continue to follow our story and share it with anyone who may be on a similar journey because it’s a true blessing to feel like you aren’t alone.

For all Feeding Tube Awareness Week posts, click here!

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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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FTA Week, Day 2: It Takes a Village

Today’s topic is all about tubie resources and support!

I truly love this digital age that we live in! The internet has been extremely helpful in finding all kinds of resources  and support throughout this journey.  Facebook is increasingly instrumental in connecting everyone as well.

At first, we had one of the nurses in NICU take us in to a conference room and give us a crash course on how to care and use the G-Tube.  We had the chance to ask questions and practice with G-Tube Gina haha a doll they have to show parents all about G-Tubes. Upon discharge we  had our Home Health Agency to help us with the G-Tube, they taught us how to clean it and use the feeding pump and came once a week to check the site to be sure it wasn’t infected and to answer any questions we had.  We also saw the pediatric surgeon a few times for follow-up and he explained to us how to change his button if it ever came out, how to properly clean the site, and signs of infection to look for that would require us to come back in.

After that, it was sink or swim time.  We definitely felt alone at the beginning.  We timed all our outings around Braxton and stayed home quite a bit because we were unsure of feeding him in public.  As we were able to decrease the time he was on his pump, we spent a little more time out and about and were able to feed him discretely using the pump and backpack the Supply company provided us.  I remember lots of stares when we were out in public whenever we would set up Braxton’s feeding.  It was really uncomfortable for us and we ended up trying to hide it as much as we could.

After much online searching, I finally found the Feeding Tube Awareness Foundation, and that was the first time I really felt like we weren’t alone. Despite the many doctors appointments, I can’t recall ever seeing any other tube fed children (even though I know there are many).  I found their website and then their Facebook page, and the reality hit me that there were so many kids who needed tubes.  Their facebook page is extremely informative and active.  Parents are welcome to post questions and a few of the admins answer questions the best they can and also re-post the questions they may not have a complete answer for to the group for any of the other members to answer.  Not all the questions are of a medical nature either.  It can be anything from how do YOU include your child at family meal times, are there any products that would make your child more comfortable, to what is the best way to increase speed of feedings.  I’ve had several questions answered by other parents, and I’m so thankful for this resource.

The FTAF website has also been extremely helpful.  Not only did it help me realize we weren’t alone, I realized how much fun it would be to “dress-up” the tube site and that there was no need to be ashamed.  They have a page devoted to helpful products for tube feeding.  There are custom backpacks that can be made with any kind of fabric to truly personalize the tube feeding experience, there are special pads that go around the button that are much nicer than using gauze, there are belts that can help protect the button when wearing shirts that don’t button at the bottom, special adaptive clothing, just so many things that are actually made by other parents!  Necessity is the mother of invention, and so many amazing moms not only take care of their tube fed child, but take on the task of putting their talent to use to help other tubie families!! So incredible.

These resources and this amazing support group were really instrumental in helping us as questions arose that didn’t require a doctors help.  Even ideas on dealing with the stigma of tube feeding in public.  We grew thicker skin and acceptance of the situation and took control.  Our kid had to eat, so we stopped being so discrete in public.  Still very aware of the stares, but realizing that they weren’t all stares of hate or disgust, but possibly people wondering what exactly what we were doing because they’d never seen it before.  I wish more people would ask questions instead of just staring.  Staring is extremely rude, and it bothers the heck out of me, if you are curious, just ask! I’d much rather educate you than try to discern whether your stare is just plain rude or if you’re actually curious.

And THAT is EXACTLY why Awareness MATTERS!!!  This is why this week exists! So many people have no clue about feeding tubes, so I’m incredibly thankful for the efforts of the Feeding Tube Awareness Foundation being put forth to help educate the broader public about each of our situations.  The more people know, the less alone people feel and the less stigmatized tube feeding will be for everyone.

Tomorrow’s topic: “Been there, done that.” – Help for new tubie families.

Also, be sure to tune in to Austin’s KXAN at 12:40 pm for our live in-studio interview all about Feeding Tube Awareness Week!

For all Feeding Tube Awareness Week posts, click here!

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