Tag Archives: feeding tube awareness week

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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FTA Week, Day 1: Show the Love

FTA Week Flyer

FTA Week Flyer

Feeding Tube Awareness Week is here! FTA Week started 3 years ago by the Feeding Tube Awareness Foundation in hopes of raising more positive awareness about feeding tubes.  Currently half a million people in the United States REQUIRE the use of a feeding tube, and that number is expected to rise by at least 8% over the next 3 years. Notice the word REQUIRE. You may have recently heard about the latest diet trend on an episode of 20/20 that people are trying.  This diet can be very dangerous to your health and is NOT at all what feeding tubes should be used for. You may have also heard of someone you know having a feeding tube put in because they are in a coma or very elderly and no longer able to eat on their own so they have a feeding tube inserted.  What you may not know, is the increasing amount of CHILDREN who require the use of feeding tubes on a daily basis. If you are like us, then you had no Earthly idea what a feeding tube was or why it was needed until either you were faced with the decision to have one placed in your child, or until you met us.  Not only are so many people are unaware of the countless medical conditions that could require a feeding tube, but they are also unaware that children can lead perfectly “normal” lives as well.  This week I’ll be blogging daily about our experience based on the topics for the week set forth by the Feeding Tube Awareness Foundation.

Today’s topic: “Show the Love” – Share our Tubie Rockstar video and tell your story.

Each year the FTA Foundation puts together a video slideshow to kickoff FTA Week.  The slideshow stars countless “super tubies” and even tubie graduates! I now present to you the Feeding Tube Awareness Video for 2013 [and yes, a very special super tubie near and dear to our heart is in this].

OUR STORY

Many of you that have been following for a while know our story, but I will share with you a little more background specifically about why we chose to have the G-Tube placed and a little more about daily life with Braxton and his feeding tube.  [For the full background, including the other issues Braxton faced, check out our post The First Year]

Also, be sure to check out the video we made!

When Braxton was born, it was immediately apparent that something was not right when I tried to breastfeed him.  When the nurse first brought him to me, I could not get him to latch on properly. When I was finally able to get Braxton to latch on he started coughing and seemed like he was choking.  At first I thought he just wasn’t ready to eat, but the nurse was very concerned and took him to the nursery where, I later learned, they tried to formula feed him by bottle.  I was really pretty upset by this because I had my heart set on breastfeeding and no one ever asked if it was ok to give him a bottle or formula. After several failed attempts, the neonatologist reported that Braxton seemed to lack the suck-swallow-breathe reflex.  He basically was unable to coordinate drinking and breathing at the same time.

He later had a Modified Barium Swallow Study (MBSS) performed. An MBSS is a radiological procedure where a small amount of barium contrast is mixed in with formula and Braxton is then x-rayed as he drinks and a radiologist and speech therapist monitor the liquid as it goes down so they can determine where the problem is.  For Braxton, it turned out that he had a very poor suck reflex and couldn’t even swallow much, but the little that he did swallow was going in to his lungs instead of his stomach.  This is called aspiration.  Aspiration can be extremely dangerous because the lungs fill up with liquid therefore decreasing the amount of air available to breathe; it is essentially drowning.  I was devastated to miss out on the bonding experience of breastfeeding, because as long as Braxton was aspirating there was no way I could breastfeed him.  I began pumping instead because it was important to me to provide that nutrition for my son.

Braxton with the NG Tube

Braxton with the NG Tube

Once we knew Braxton was aspirating, the doctors decided that he would have a Nasogastric (NG) Tube placed and they would continue working with a feeding team in NICU to see if they could help him feed properly.  There were still several other issues that needed to be checked out so we were unsure how long his NICU stay would be, but were hopeful that he would at least feed on his own.  After 3 different attempts at feeding with a feeding team, they determined that Braxton was showing no improvement with his coordination to feed properly.  As everything else was somewhat stabilized, Braxton was able to regulate his own body temperature, his blood sugars had normalized, and he was gaining weight, although he had no clear diagnosis, there was no reason for him to remain in NICU.  The neonatologist began to talk to us about sending Braxton home and we discussed our feeding options. Our first option was to send Braxton home with the NG-Tube.  The Dr said he recommended this to patients whom he thought would only need the NG-Tube for a short period of time.  I was terrified of this option.  NG-Tube placement is absolutely critical. I was so scared to learn how to put the tube in.  You have to get the tube up the nose, down the throat and into the stomach.  There is a chance you put the tube in the lungs instead of the stomach, so there again that risk of drowning…basically, if not placed correctly I could kill my own son. Thankfully, we had another option.  Because Braxton had not shown improvement with the feeding team and he was aspirating, the doctor thought it best for him to have a Gastrostomy or G-Tube placed.  This also scared us.  Braxton would have to be put under anesthesia to surgically have the tube placed.  Here he was a week old and I already had to decide whether or not to put my son through surgery.  After much research and talking everything over with the doctor, we decided to go ahead and have the surgery.

The morning of the surgery we came in to visit Braxton before they took him away.  We held our precious son and talked to him and kissed him hoping that everything would turn out okay.  We waited and spoke to the anesthesiologist and the pedi surgeon performing the procedure and they explained everything to us.  We were told the surgery would be performed endoscopically, which meant a small camera would guide the surgeon as the tube was placed. Braxton would have a small cut underneath his belly button where a camera would be inserted.  The doctor would then cut into his abdomen and into the stomach using the camera as a guide. Once the cut was made correctly, the G-tube button was placed and then his stomach was stitched up around the button to heal over the next 2 weeks.  The procedure was actually pretty quick, but it felt like the absolute longest thing ever.  We waited in the NICU waiting room until the surgeon came up and told us that Braxton did very well during the surgery and the team would be bringing him back up for us to see.  When we finally got to see him, he was still waking up from the anesthesia, so the nurse took the time to show us the g-tube and go over the care and cleaning of the site.  Recovery time would be 2 weeks.  During the first week, the button had to stay taped down and we had to be very careful not to rotate it because it could tear the stitches.  We had to let the site close up a little so the button fit snugly.

Normally, children stay in NICU the entire 2 weeks of recovery.  The doctors let us go home after the first week.  We had a Durable Medical Equipment (DME) company bring us all of the necessary supplies and help us set up a monthly order that Braxton needed so he could feed.  They should us how to use the pump and all of the other supplies as well.  Before we were discharged, I got to “room-in” with Braxton.  I stayed overnight with him at the hospital in a private room, where I would be able to try everything out on my own.  A nurse came in periodically to check on us and see if I had any questions.  She helped me set up his first feeding and was there if I had any questions for the remaining.  That first night went pretty well, so I just waited for the ok to go home.  We were finally discharged, but we were completely overwhelmed.  Thankfully, the doctors discharged us with a home health agency who would send a nurse out to us to help monitor the recovery and make sure we learned to properly use the feeding tube.  Joseph and I learned pretty quickly how to feed Braxton, and after just a few weeks, we no longer needed the Home Health agency to come out.

Now, 19 months later, we are pros 😉 Braxton still has the G-Tube. We actually ruled out aspiration in September after he left the hospital.  We had been working with a speech therapist and she determined his coordination had improved quite a bit, so she sent us to have another MBSS done to see if it was safe to progress with oral feeding. The MBSS showed NO signs of aspiration! So we were given the green light to go ahead and feed him by mouth. He made significant progress with our Speech therapist and was drinking 4-5 ounces at every feeding and even eating pureed foods 3 times a day for about 4 months.  He developed pneumonia and was unable to keep any food down.  Because of that, Braxton developed a severe oral aversion where he did NOT want anything to eat by mouth at all.  A couple months ago we switched Braxton over to the Blenderized Diet, and he’s improved significantly.  He is keeping all of his feeds down now, and he is even eating a little bit by mouth again.  Eventually, we hope that he can have the tube removed, but for now, we are so thankful he has been able to survive because of it.  Joseph and I are both okay with Braxton having it however long he needs it, whether it’s another year or several years, whatever keeps our little boy healthy.

Day-to-day life isn’t all that different with a feeding tube.  Braxton has been able to be in daycare and all the teachers have been trained on how to feed him.  He currently receives 8 ounces of our Homemade Blended Formula 4 times a day.  Often, tube fed children do not fully understand what it means to be hungry.  They just know that they get fed no matter what.  Braxton has to stay on a schedule so that he continues to gain weight appropriately.  He never cries because he is hungry. We have had to feed him late because of a doctor’s appointment, or he had to be fasting for a procedure, and it does not phase him one bit to be without food.  If we waited for him to tell us when he is hungry, he might not ever eat.  Therefore, we keep him on a set schedule so we are certain he is eating and receiving all the nutrients he needs.  We can feed him when we are out and about, so we aren’t confined to our house just because of the tube.  Braxton is able to play and crawl and do anything any other 19 month old can do and the button doesn’t fall out or bother him is he crawls across the floor.  Initially, I was scared about him learning to crawl because I thought for sure him scooting across the floor would hurt his tummy, but it doesn’t.  When I hold him, I don’t feel the button poking me or anything.  It can be seen under his shirt, but it usually doesn’t get in the way of anything.  So, although Braxton may need a little extra help feeding, he’s just like any other kid.  🙂

Tomorrow’s topic: “It Takes a Village” All about tubie resources and support.

For all Feeding Tube Awareness posts, click here!

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Feeding Tube Awareness Week

Big sister and Brax :)

Big sister and Brax 🙂

Tomorrow kicks off Feeding Tube Awareness Week! I contacted our local news about running a story, and they invited us to come in to do a live interview in studio! Many families, like us, have no idea about tube feeding until they themselves are faced with the decision.   So, I’m thrilled to have the opportunity to share our story and help raise awareness for tube feeding. In preparation, we made a short video about our G-tube experience that we are sending the news station before our visit.  I also wanted to share it with all of you who may have always wondered, but were afraid or didn’t know how to ask about how we feed Braxton.

 

 

For all our Feeding Tube Awareness posts click here!

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