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].
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.
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!