Tag Archives: feeding difficulty

An Unexpected Setback

Braxton had a follow-up Swallow Study today and we got some unexpected news.

A few weeks ago we followed up with our Sleep Doctor/ Pulmonologist and I mentioned to the PA that Braxton had recently started making a strange noise while he was eating, like he was clearing his throat and then swallowing his food. I didn’t think much of it until we were at the appointment and something told me I should tell the doctor about it, considering Braxton’s history of aspiration (swallowing liquid into his lungs). The PA was concerned enough to talk to our main pulmonologist who decided we should order a new swallow study. She also listened to his lungs to make sure they were clear, and they were.

Here is a video of what we were seeing:

 

We didn’t make any feeding changes and I made sure to talk to our Speech and Occupational Therapists, we were all stumped. Our Speech Therapist thought it could have something to do with all the ear trouble we have been having this summer since the ear and throat are all connected. It would certainly make sense if swallowing was hurting his ears and he was trying to relieve the pressure or whatever it is he was feeling. He still seemed to be swallowing normally and wasn’t showing any signs of aspiration, so we continued with our current feeding regimen.

IMG_2347Today we finally had the swallow study. I went in not expecting much of anything, but we may have a new issue to worry about.

During the test the speech therapist and the tech kept saying they saw Braxton regurgitating the food which is part of the reason we are seeing multiple swallows and the throat clearing. There were also a couple instances where it appeared he *might* be aspirating again. He was surprisingly calm and cooperative the entire time, so aside from the Barium not being so tasty, he did exactly what we would see at home. Once completed, we sat in the waiting room while the speech therapist and tech reviewed the recording to discuss their findings and recommendations with us. It took much longer than it has in the past.

 

The speech therapist finally came out and let us know that while she is not able to give us an official diagnosis, what she was seeing appeared to be an esophageal dysfunction. When you eat, your esophageal sphincter opens to allow the food to pass and then it closes so that air does not enter. Braxton’s upper esophageal sphincter is sometimes opening properly and other times it is opening and closing before his food gets to the esophagus. And there are times that the esophagus regurgitates the food which gives him trouble with swallowing. She also noted that even when everything works properly he is taking two or more swallows per bite.

So, now we need to figure out what exactly is going on with his esophagus. We’re looking at some kind of structural anomaly that we haven’t seen before. The speech therapist said she’s never seen what she saw today with Braxton. She also called in another radiologist who also said she’d never seen this. (Of course! Braxton has always been quite the medical mystery).  The plan for now is continue with oral feeds, but she was insistent that we proceed with caution since we don’t know what is really happening. We will need to cut back on his food and give him smaller bites since he did seem to tolerate that better than the larger bites. She will also be making a recommendation for us to get back in to the Aerodigestive Clinic so that our ENT, GI, Pulmonologist and a Speech Therapist will all be able to see him at the same time so we can all discuss what’s going on and formulate a plan.

I’m really not sure where we go from here, but obviously, this was not the news we were expecting. This could explain why we have had some difficulty getting Braxton to move up to thicker foods and different textures. Cutting back on feeds will certainly be a setback we didn’t expect. But, like all things, I know we will make it through.  I hope we can get some answers and clarity very soon. And to think I almost didn’t even bring it up to the doctor!

I am doing my best to stay away from Dr. Google today and patiently waiting for a follow-up with our doctors. Braxton and I enjoyed some time outside this afternoon on his new swingset. His sweet smiles and laughter filled my heart, and for a moment all was right in the world.

 

IMG_2346

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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 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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30 Days to Make a Habit

They say that for something to become a habit, you must do it for 30 days.  Well, we are well over 30 days of trying out the Blenderized Diet and it is very much a habit now! This is by far the best decision I’ve ever made for my child.  He is tolerating the volume and the feeds extremely well. Braxton is doing so well with the new diet.   My only regret is that I didn’t start this sooner!  I was extremely overwhelmed when this all started, but once you get a handle on everything and find something that works, it’s really very easy.

I’ve found a couple recipes that really seem to work well for Braxton, and they are easy for me to keep up with.  I’ve started to make my own fruit, veggie, and meat blends too.  Jarred baby food gets a little expensive, so buying whole fruits and meats makes a lot more than what is available jarred.  Little by little I cook the meat or steam the veggies and then blend them up and freeze them.  I’ve used ice cube trays to save one ounce portions that I can easily thaw and add to the blender and even saved baby food jars to put my blends in.  I prepare Braxton’s blend nightly for the next day.  The blend is usually enough for about a day and a half, so every couple days I do get a break 🙂

Instead of posting each recipe and picture of nutrition facts, I’ve created a Google Doc that I can share with you all instead! If you are looking for recipes or need any nutrition information you can visit my spreadsheet here.

Braxton is even eating now!! Yayyyy!! I accidentally left his feeding success off our last post..yikes! It’s still a very slow process, but we are getting somewhere with him now.  Braxton is consistently taking about an ounce of food whenever I offer it to him.  We’ve tried pureed baby foods again, but I’ve also started trying other things like yogurt and pudding to see if he has a preference for different textures or flavors.  He wasn’t a fan of chocolate pudding *gasp!* I told him there was no way he was my kid if he didn’t like chocolate pudding haha He really seems to like Baby Yo’s Peach Yogurt though and he has been actively eating that when offered.  I’m so happy to see him making some progress with eating.  Hopefully we can get him back to where he was at with eating and move toward having his G-Tube taken out.  One day.  For now, we will keep working with him and celebrating all the little successes, because one day we’ll look back and truly realize how instrumental those were for him.

It’s exciting to finally post so much good news!! Brax has been a little under the weather this week, but overall he’s doing so well! We even have a slow couple of months coming up.  Aside from daily therapies, we don’t have very many doctors appointments coming up. Woooo! A break! Haha I was preparing our calendar for the next couple of months and was very surprised to see that we only have 1 appointment this month AND next month! Sadly, I sat and stared at the calendar for a good while thinking that I had missed something! Hopefully, I haven’t.  Until next time…..here’s Braxton 🙂

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