Tag Archives: feeding tube

4th Tubie-versary!

Every year, it is hard to think about Braxton’s birth and how long he was in the hospital. In the grand scheme of things, he wasn’t in there very long, but every year the weeks roll by and I realize how much LIFE has happened in 3 weeks and remember just how long it felt then and still feels now. A lot can happen in 3 weeks. Four years ago today would mark 2 weeks that Braxton was in the hospital and it is also the day he had his first surgery to have his G-tube placed.

Seeing Braxton for the first time after surgery.

Seeing Braxton for the first time after surgery.

The day Braxton became a Super Tubie is seared into my mind and every year I see just how much progress has been made. Braxton’s tube was placed because he was aspirating liquid into his lungs and he had extremely poor muscle control. He also had trouble coordinating the suck-swallow-breathe reflex. Drinking meant he forgot to breathe and breathing meant he didn’t drink, or if he breathed while swallowing the liquid ended up in his lungs instead.

The day the G-tube was placed, we were terrified. I remember feeling helpless. I remember arriving to the NICU early so that I could hold him and tell him he was going to be okay (even if I wasn’t completely sure myself), only to be told that I wasn’t allowed to hold him because the anesthesia process had already begun. They wanted him tired and calm. The nurse told me I couldn’t stroke his head or hand. Only firm touches. We stayed with him until he was rolled away and couldn’t follow. I sat in the waiting room putting on a brave face as the fear and tears built up inside. The doctor came up and told us he did great and we would see him soon. The whole procedure was maybe 30 minutes, but it felt like so much longer. Everything in the beginning felt like forever. We finally went back and saw Braxton swaddled up tight and the crash course began.

Four years later, I wish I could go back to myself and let myself know that everything was truly going to be okay.

Anyone who meets Braxton now, would never know there was ever a time that Braxton wouldn’t or couldn’t eat. He eats about 16-20 ounces in less than 10 minutes! For comparison, it used to take 20 minutes to get him to eat 2-4 ounces. The process was v-e-r-y slow, but we stuck with it and our speech therapist helped us through it. Braxton will pretty much eat anything as long as it is pureed. Scratch that, he will eat any of the pre-packaged baby foods. I’ve offered pureed table food like beans and mashed potatoes and he is NOT a fan!

We are working on food chaining again which is how we got him to eat different baby foods. I am trying to add in a little bit of pureed table foods into his meals so that he is used to new tastes and new textures. He can always tell when there is something different about his food. His body tenses up, he shakes his arm and head, and makes a face like he’s just been betrayed. It’s actually really cute. He will get there eventually, and we will keep on working with him.

For now, we only use Braxton’s G-tube for liquids since he still cannot drink on his own. We have been successful in getting him to take a few sips from a straw and an open cup, but he’s not too consistent just yet. He get lots of water and milk via g-tube to keep him hydrated.

Sometimes it is hard for me to look back and sort through the emotions from the early days, but when it comes to his tube I laugh at myself a little because we were so scared for no reason at all. The tube was the absolute best decision we ever made. Braxton has thrived and grown so much. He is doing incredibly well now and hitting milestones left and right. Something that might not have happened if he didn’t have his G-tube.

Another year with the tube, and we aren’t a whole lot closer to having it removed. And we’re okay with that! It’s no longer scary (minus the occasional pulling out of the tube – that is still scary no matter what) or different. We use it in public without shame. We don’t try to hide it anymore. It’s just a normal part of our life. Once he starts drinking on his own and maintaining his weight, we can have that discussion, but for now it will still be a part of him.

I’m so grateful for modern medicine and Braxton’s G-tube! He wears it proudly. ūüôā Happy Tubie-versary, Braxton!!

Braxton, the Super tubie. Strutting his tube proudly. (Photo by Grease Man Photography)

Braxton, the Super tubie. Strutting his tube proudly. (Photo by Grease Man Photography)

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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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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

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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 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! ūüôā

For all Feeding Tube Awareness Week posts, click here!

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