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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!

Enjoy!

 

 

 

 

 

 

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Wordless Wednesday: Sweet Laughter

I know the idea behind Wordless Wednesday is to show a picture that “speaks for itself,” but this video of Braxton totally counts too, right?

Braxton is pretty much always wordless, but you can always count on him to make you smile without having to say a single word…

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Typical, Yet Far From Typical

Big Good Morning Smile from Brax

Big Good Morning Smile from Brax

Here lately, Braxton has made some significant progress.  As he is getting older, he is “catching up” on some things, yet far behind in others.  I catch myself thinking, yup that’s what a toddler is SUPPOSED to be doing.  Or saying things like, boy it’s like we have a real toddler around here! (Obviously, he’s real, but he’s not at all been a typical toddler until recently) Braxton will be 2 years old next month (I can’t believe it!), but developmentally, he is still at about 10-11 months I’d say.  For instance, he is crawling fantastically and pulling up to stand and trying to cruise, which is typical for a 9 – 10 month old.  Once he really starts walking, I’m certain he will make so much more progress.  He’s getting pretty good. Here he is during a Physical therapy session doing some assisted walking…he took 30 steps while I was there for the tail end of the session.

Toys all around him.

Toys all around him.

Braxton is also doing really great with exploring his environment.  One minute he’s at the patio door and the next he’s in his therapy room with all the toys in the middle of the floor.  Yup, typical toddler leaving a path of destruction behind him.  For a long time, Braxton just sat next to us, slept, and pretty much did nothing. We’d play with him and there was no registered emotion.  Now, I walk in to a room and he’s pulled toys off the shelf, emptied toy bins, and crawling over to another toy and playing all on his own.  When we sit and play with him, he is actually quite interactive and will laugh and smile the whole time.  Especially when sister plays with him. He likes to pretend to knock her over and when she exaggerates the fall, he thinks it’s hilarious.  The sound of laughter fills my home and heart.

Are you talking to me?

Are you talking to me?

Braxton now also knows his name.  Just one other thing we don’t realize actually has to be learned.  I would call him all day long and get nothing in return. But a toy goes off and his head whips around. At first, I figured he was being a typical toddler by ignoring mom and only paying attention to cool toys, but it’s just taken some time for him to learn we’re talking to him and not the wall.  In the past couple weeks, I have called his name and he turns around with a big smile on his face. Or if he’s across the room, he turns around, sees me, smiles real big, and crawls as fast as he can over to me.  It’s the sweetest thing, but it’s been a long time coming.  I never thought it’d be almost 2 years before he understood much of anything.  He knows his name now, and that’s huge.

Another typical toddler thing he’s doing is dropping things on purpose and then crying dramatically to sucker mom into picking him up.  I have sat and watched him literally stick his pacifier over the edge of the play pen, swing it around, and then throw it.  He then stares at it, and then goes in to full on crocodile tears and drops to the floor just to make sure mom knows he’s really upset.  I just laugh.


Braxton is doing so well and I just love watching him develop.  Each and every accomplishment is celebrated in our home.  I am often so overwhelmed with joy that I just cry thinking of all the things he is doing that no one ever thought he’d do.  I’ve read the reports, I’ve talked to our therapists..they were all really worried at first, and so were we. And now, we all rejoice with his progress.  He never ceases to amaze us with his courage and determination.  Some days, in some moments, he’s just like any other typical toddler, although in reality he is behind and  so far from typical.  One thing is for sure, he is one extraordinary little boy who is going to continue to defy the odds and surprise us all.

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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 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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