As part of Feeding Tube Awareness Week (February 9-15) I want to do my part by sharing Aly’s story, including the events leading up to getting her feeding tube, her week-long hospital stay and surgery, her recovery, and how she is doing now.
Aly’s growth has always been on the slow side, but it didn’t become an area of concern until her first birthday. She had been on infant formula and drinking bottles every three to four hours like a newborn. She did not eat baby food very well because she had trouble manipulating the food in order to swallow it. She worked with a speech therapist once a week on eating strategies, but nothing was helping. She resisted it and was not interested in spoon feeding at all. Before we moved any further with solid foods she had a swallow study done. She did very well with it. She was capable of swallowing and wasn’t aspirating or having acid reflux. Her struggles were more with properly using the muscles in the mouth that are responsible for eating. I never realized eating was a motor skill and how much work goes into eating until she was in therapy. Aly has several neurological factors that have worked against her in regard to her motor skills. She has brain malformations, including white matter deficiency, a thinned corpus collosum, and microcephaly. All of these things affect her motor skills (fine and gross) and have caused her to have global developmental delays.
At that time, Aly was close to her first birthday. At her one year checkup, her pediatrician decided to put her on Pediasure instead of going straight to cows milk since she needed the extra calories, vitamins, and nutrients. He prescribed her three cans a day, which was 24 ounces. There was never a day from that point up until getting her feeding tube seven months later that Aly ever ate 24 ounces in one day. In the beginning of her being on Pediasure she was doing okay with the amount she was drinking. She had even gotten up to 13 pounds. During that time, she was teething and having issues with ear infections, which affected her eating. She began to drink less and less. She had an appointment set up with a GI, but we couldn’t get in to see him until October.
In mid-August, she started seeing a feeding therapist in Starkville at Kids Therapy Spot since we were moving to Starkville so she would be closer to her school. In the beginning of seeing the feeding therapist we were focusing on spoon feeding techniques, but it soon became apparent we had bigger issues to tackle, which was her formula consumption and technique. We had to start back at the beginning. She was having trouble with early eating techniques, such as suction on the nipple – which caused a lot of formulas to spill out over the sides of her mouth. I spent two weeks holding her cheeks every time I fed her. She had also gone from drinking six to seven ounce bottles to barely drinking three to four ounces every three hours. Some days I had to feed her one to two ounces every hour around the clock. It was a very frustrating and stressful time. She just wouldn’t eat. I didn’t understand why or what I was doing wrong.
When Aly saw the GI in October, she weighed 13 pounds 5 ounces. She had been the same weight for months. The doctor said she wasn’t too far off the weight she needed to be for her height to weight ratio. She needed to gain around three more pounds, according to the doctor. At the time, he wasn’t concerned about her size. He knew her medical history and neurological impairments, and explained to me that children with microcephaly or other neurological impairments have delayed brain growth and are typically smaller in size. Everything starts with the brain, he said. That made since to me, I guess. Her head circumference was 41 cm at the time. That is the typical head circumference of a 3-6 month old. Her head circumference is now a 42, but is still drastically behind what is expected for a child her age (20 months old). Since Aly was having trouble consuming enough ounces of Pediasure, he switched her to a higher calorie formula that she could drink less of but get just as many calories. At the time, I didn’t really realize what that meant or how much it would affect her and send her on a downward spiral.
The consistency of the Boost 1.5 cal is much thicker and higher concentrated than what Aly was accustomed to. The first few bottles I gave her were straight Boost, but I soon realized she couldn’t handle it because she would throw up after feedings. I started mixing it with the Pediasure, but she would still gag and occasionally throw up. I would mix half and half, but I could still never get her to drink more than four ounces at a time. She started to become constipated and wasn’t having as many wet diapers. I gave her water a couple times a day and Miralax, but she was growing more and more intolerant of the new formula. She started to have an aversion of the bottle and would gag and cry at the site of it. During this time she was not eating baby food at all, because getting the calories/vitamin/nutrients in her was more important – and I just didn’t have the time since I was feeding her around the clock. The two months that she was on Boost 1.5 cal was our lowest point with her eating. Her weight continued to go down. At the beginning of December she weighed 12 pounds 8 ounces. Just a week later at her follow-up GI appointment she weighed 11 pounds 5 ounces. The week leading up to that appointment, Aly had gotten severely constipated – the worst it had ever been. She went over a week without having a bowel movement. I called the GI and they told me what to give her. I had been giving her Miralax daily, but since that wasn’t working I gave her Milk of Mag, as well. During the time she was constipated she would hardly eat anything. She was miserable.
On December 12, the day of her follow-up GI appointment, she had two blow-out diarrhea diapers that morning. She looked very sick and out of it. I gave her a bottle, but she threw it all up. She could hardly keep her head up. She was very weak and not acting like herself. I knew I needed to get her in to see her doctor right away to discuss other options since the Boost 1.5 cal was only making matters worse. On the way to the appointment she started throwing up. She was very sick when she go to the doctor’s office. She weighed 11 pounds 5 ounces – down a pound from the week before and two pounds from two months prior. I was in tears in the room waiting for the doctor. I had gotten used to seeing her number go down, but this was too much to handle. She was 18 months old and only weighed 11 pounds. I knew we had to do something or how could Aly keep going at this rate? She wasn’t eating and was losing weight. Her little body couldn’t take much more. Before the doctor even said the words, I had it out of my mouth, “It’s time for a feeding tube.” A feeding tube was never something we discussed with any doctor since she could eat orally and wasn’t in danger of aspirating. We wanted to give her a chance to gain on her own, but we no longer had that option. This route was the only way.
Aly was admitted into Blair E. Batson Children’s Hospital in Jackson on December 12 for dehydration and for her feeding tube surgery the following week. We consulted with the surgical team and the GI about what the next few days would entail. I had very little time to process what was going on and even less time to accept it. I had learned many months prior to roll with the flow and expect the unexpected. I did have a moment of feeling down, but I knew I had to be strong for Aly – and that is exactly what I did, what we did. We were by her side the entire time. Once they got Aly rehydrated, they put an NG tube down her nose and into her stomach to see how she would tolerate tube feedings. She had this for a few days before her surgery. The NG tube was a nightmare. It was pulled out twice and came out on its own twice. Having them reinsert it each time was more than unbearable. Every day Aly had nurses taking blood, checking vitals, and replacing IVs (only once because she ate through the tape and pulled it out). She was on edge and out of it most of the time. I hated seeing her go through that, but I knew in the longer run it would all be worth it.
Her surgery to have a G-Tube Mic-Key button placed was on December 17. They performed the surgery laparoscopic. Her recovery time was only two days. We were out of the hospital on December 19. That’s when the real adventure started. They sent us home from the hospital with the Kangaroo pump and the supplies we needed for a month. The company representative was supposed to tell us how to properly work the machine, but I was the one to show her how to turn it on. She said it was a new brand she had never worked with. So pretty much we had to educate ourselves on how to operate the pump when we got home. We weren’t even told how or why to vent her tube when we left the hospital, which was a very crucial step they left out because Aly’s stomach was bloated every day for the first week. She was in a lot of pain and discomfort. We finally read about venting her tube, which is basically letting the air and gas out of her stomach when it gets bloated. Bloating and gas is common after any surgery (so we learned) and it eventually went away with time.
Six days after surgery, which was the day before Christmas Eve, Aly’s G-Tube came out! I had read about the possibility of something like this happening, but I never imagined it would happen so soon after it was put in. No one at the hospital even told us what to do in case this happened. So needless to say it was a mini-crisis. We got through it and she was fine. We had to take her back to the Children’s Hospital in Jackson since it was so soon after surgery. They had to do an X-Ray to make sure it was put back in the right place. The G-Tube came out because the balloon that holds the Mic-Key button in place busted. This was a malfunction of the button. The balloon is filled with water. We will be taking Aly back to the surgeon’s office on April 3 to change her button and tube. I’m hoping to learn how to change the tube out during that visit so I will know what to do in case it ever comes out again and so that I can replace it at home when it needs to be. I still have a lot to learn, but this whole process has been a learning experience.
Aly had a couple rough days after getting the new button, but things started to get better soon after. Over time the soreness and discomfort improved. Now, almost two months post-surgery, she is doing great. I can move the button from side to side and it doesn’t even bother her. She has also started to get back onto her stomach. She is careful not to put full pressure on it just yet. I let her do what feels best for her. This has actually encouraged her to get on her knees and elbows more. It took a good six to seven weeks to get our Aly back. Those several weeks were very hard to bear, but we all stayed positive and looked toward the future.
At Aly’s check-up with her pediatrician on January 28, she weighed 15 pounds! She was up four pounds from where she was the day she went into the hospital. Aly had never been past 13 pounds. I had only been accustomed to seeing her weight either stay the same or go down; so I was extremely excited to finally see progress. She started to fill out in her face, legs, and little belly. Everyone started noticing the weight gain; and for once when someone commented on how much she had grown, I could actually feel happy about it because it was true. She hasn’t been weighed since January 28 because I don’t want to get too obsessed up with scale – I want to focus more on her being happy and healthy. We will be weighing her monthly during feeding therapy.
For the first time ever, Aly is consuming three cans of Pediasure daily (24 ounces/720 calories). She drinks six ounces three times a day at four hour intervals through a bottle and gets eight ounces overnight through her tube on a pump. I hook her up to the pump between 8 and 9 p.m. and she stays on it for 12 hours. She also gets 120 ml of water a day. I give her the water through her tube using a 60 ml syringe (twice a day) and gravity bolus it into her stomach using the tube. This is not a feeding, but rather a water flush. The great thing about Aly’s feeding tube is that if/when Aly is having an off day with eating – whether from a cold or not being up to it – I can feed her through her tube, insuring she gets her calories in for the day.
Aly’s feeding tube has taken the pressure and stress off of eating for both her and I. She gets 33 percent of her caloric intake during the night while she is sleeping. I now do not have to worry if she is getting enough to eat because I can always give it to her through her tube if she doesn’t take it by mouth. We can now focus more on spoon feeding and self-feeding. The feeding tube is what allows Aly to grow and thrive. I used to have the wrong impression about feeding tubes, but after learning more about all the different reasons for them and how much they help a wide variety of children, my opinion has changed. For many children, it is their sole source of nutrition. Most causes behind needing a feeding tube, such as severe acid reflux, aspiration, and food aversions are invisible conditions. Raising awareness and educating the public about feeding tubes is what will promote acceptance and understanding. These children should never feel ashamed of their tubes, whether they have a scar, a temporary tube, or will have a permanent feeding tube. Nothing can hold our “tubies” back. Because of their tubes, they will have a full and happy life – and that is something to be proud of!