Friday, February 10, 2017

Fueling Life

I never knew there was a Feeding Tube Awareness Week (February 6-10) until now. The 2017 theme is “Fueling Life” because feeding tubes make it possible for those unable to eat or drink enough on their own to get the nutrition and hydration they need for life. Half a million children and adults in the United States alone rely on feeding tubes, a number that is expected to increase by eight percent over the next three years. Feeding tubes are not just for those at the end of life, they provide necessary nutritional support for children to live, grow and thrive. There are well over 300 conditions and diseases that can require tube feeding in children."

Liam's feeding tube journey began years ago when he was a wee baby. His height and weight was hardly ever on the charts, but he always followed his own, steady growth curve. We (us and his pediatrician) weren't concerned about his size. He ate fine as an infant, getting enough calories to sustain him. We just assumed that he was going to be itty bitty. Although saying that, his pediatrician said from the beginning "Maybe he has a syndrome that we just don't know about." (He had several other anomalies that made her think so.) It wasn't until he had two surgeries in September of 2011 when he stopped being interested in food. At first we excused it by saying "He must not feel well after having surgery." You know what it's like if you have had a surgery, sometimes you just don't feel like eating. But for Liam days turned into weeks and eventually mealtimes became a nightmare. He would scream and cry even as we would approach the high chair. I found myself squeezing his cheeks together, trying to shovel in the creamiest, full of fat yogurt I could. I offered him anything and everything but he still wouldn't eat more than one or two bites. I didn't understand how or why he didn't want to eat and it was frustrating. He would drink enough pediasure with added DuoCal to satisfy his hunger and stay hydrated, but it wasn't enough to help him grow. Soon, our pediatrician referred us to a gastroenterologist who said that Liam was a perfect candidate for a fedding tube. His height and weight were maintaining but his head had stopped growing. It was time. It was time to help Liam gain and thrive.

I took these shirtless pics just a couple days before surgery to document his tummy pre feeding tube. I remember feeling sad because I knew he'd always have a scar. His perfect body would now have 2 belly buttons. 

Night Before Surgery 

On March 9, 2012 Liam had a PEG (Percutaneous Endoscopic Gastrostomy) tube placed. (PEG involves placement of a tube through the abdominal wall and into the stomach through which nutritional liquids can be infused.) Even up until the minute they took him back to the operating room I was hesitant to do it. I wanted to grab my baby and run. I knew it was a good option but I wasn't sure it was the best option. I didn't want my baby to have a feeding tube. In many ways I felt like a failure as a parent. I felt like maybe I didn't try hard enough. Maybe I needed try different approaches and give feeding therapy more time. I just didn't want an easy fix, I wanted to be the one to "fix" the problem. But after we said goodbye and as the anesthesiologist carried him down the hall, a huge weight was lifted off my shoulders. It was the BEST option for him and finally he was going to get the nutrition he needed. I no longer had to feel guilty that I wasn't doing enough or that he wasn't eating enough. He was going to get every calorie, every gram of fat, protein, carbohydrate, every nutrient and vitamin he needed through his feeding tube. And as an added bonus, I could give him all of his meds through his tube too.

All of the pics above are post PEG placement. Surprisingly he never tugged or seemed to be bothered by this foreign object. He must have known that our new normal was going to be ok. 

A few months later on June 12, 2012 Liam had his PEG replaced with a MIC-KEY tube or what we call Liam's "button". Instead of having a tube hanging from his stomach, he had this low profile G tube placed which is a bit more discreet and lays flatter. It allows Liam to be active without worrying about it hanging or getting caught on something. It gives him more freedom to do every day activities and live a "normal" life while giving us access to still hook him up to his feeding pump. When his first PEG was placed his doctors felt that he would only need a feeding tube for a year. Their theory was if we can get him in the 3rd percentile for height and weight, then hopefully something will click in his brain and he will want to eat. They felt that maybe his body was in anorexic mode but once his body grew and his brain developed, he would naturally want more and he would "outgrow" his feeding issues. But here we are today. Almost 5 years later he still needs and uses his feeding tube. Most of Liam's nutrition comes from the formula that gets pumped into his body during the night time. Night feeds has been the best option for our busy family lifestyle. We hook him up at bedtime and the pump continuously, at a slow rate pumps formula into his stomach. Around 5 am, the pump beeps to let us know the bag is empty, we unhook it from his button, and he continues to sleep for another couple hours. 

Post MIC-KEY button. No more dangling tube.

Depending on the day, Liam will eat a few things orally. He goes through phases of eating one thing for a while then moves on to something else. He cycles through the same things though. Kraft Mac n Cheese, Velveta Shells and Cheese, Top Ramen noodles, penne noodles with butter and parmesan cheese, rice, and that's about it. At different points in his life he has liked mandarin oranges, strawberries, cucumbers, string cheese, orange cheese, chips, pizza, Little Caesars crazy bread, Ritz crackers, chocolate chip cookies, Sunbelt chocolate covered granola bars, apple sauce, Ego waffles, oatmeal, chicken nuggets, hot dogs, and corn dogs. But again it just depends on the day if he'll eat these things. His mainstays are Kit Kats and chocolate ice cream, and he LOVES Primary Children's Hospital Mac n Cheese. So basically if Liam wants ice cream for breakfast, Liam gets ice cream for breakfast. If he asks for a Kit Kat, he gets a Kit Kat. When we go to the hospital for appointments we always visit the cafeteria to see if they're serving Mac n Cheese. If they are, we buy extra and bring it home. Some days he will go all day without asking or wanting anything to eat. On those days he will usually drink a bottle or two of Carnation Instant Breakfast and he will ask for water, but otherwise that's it. (Wow, I just realized I did a lot of product placement! I should consider asking these companies/brands if they need Liam as a spokesperson. Little Caesar's, Ritz, Sunbelt, Ego, Kraft, Velveta, Carnation? What do you think? Free products? Or product marketer? Either way he's your guy.) 

Every night at bedtime he also has a "chocolate bobble". He wakes up with a full belly so rarely will he eat anything in the morning. For school, I was packing his lunch with 6 various things that I mentioned above, but almost everyday he would come home with a full lunch box. His granola bar would maybe have a bite or two taken out of it, but even his Kit Kat most days would be unopened. He has started to get school lunch and even though his aid tells me he eats, I know he's not. He will tell me "I got a sandwich today but I threw it away. But I did take a bite of a carrot." First of all he doesn't even like sandwiches and secondly I know he takes bites out of carrots and broccoli but he won't swallow them. I allow him to get school lunch though because not only is it free but it gives him independence too. He also likes to feel like one of the guys (all of his friends eat school lunch). When he was taking home lunch he was supposed to leave everything in his box so I could see what he was eating. But on occasion he would come home and it would be empty. When I would ask him about it he would say "I just threw it away like my friends did." Bless his heart. He would see his friends dump their lunch trays and wanted to do the same. So now that he gets school lunch, he gets to dump his tray like his friends do. Bless!

So the big question is why? Why does Liam not eat enough orally to sustain him? What condition or disease does he have that contributes to his feeding issues? His pediatrician was spot on when she said "He probably has a syndrome that we just don't know about." In June of 2015, after a long battle with the insurance companies, we found out through a chromosome test that he does indeed have a syndrome. Liam was diagnosed with 16p13.11 micro-deletion. He is missing part of his 16th chromosome. Although this syndrome is somewhat uncommon and doesn't have much research to back it, we do know that feeding difficulties are part of it. Liam was also recently diagnosed with SPD (Sensory Processing Disorder) and ASD (Autism Spectrum Disorder). These two diagnoses go hand in hand with his deletion so they come as no surprise but there are times when I wish we could just say he has a chromosome deletion. I really don't want to add more labels to his repertoire but these labels will provide us with more services and help. They also provide more answers as to why he does or doesn't do what he does or doesn't do. So for now we know that Liam doesn't eat because something in his brain doesn't like the idea of trying new things, it doesn't like the textures or smells of certain foods, and the switch just hasn't turned on to make him want to eat. He may have his tube until he is 18. He may get it taken out next year. We really don't know. But what we do know is that no matter what diagnosis he has, now matter if he does or doesn't reach the 3rd percentile, or if he eats or doesn't eat, his feeding tube is keeping him alive. 

What used to be a scary and daunting option is such a blessing and relief. Managing a feeding tube is easy peasy. It's just part of our daily lives. Our oldest three know how to fill the bag, prep the pump, hook him up, etc. The feeding tube is part of Liam. In fact whenever we talk about getting it removed if he starts eating he says no, holds it tight, and gives it a little squeeze. It's been a part of him for so long that I don't think he likes the idea of it ever going away. So for now it's here to stay and he will continue to eat ice cream for breakfast, lunch and dinner, and a Kit Kat for dessert if he wants. And my *Fun Size little man will continue to be fed by his feeding tube because his feeding tube is fueling his life!!

*Somebody asked me the other day why I use the hashtag #liamisfunsize. When I met his current GI doctor, who I absolutely love and adore by the way, she said "Liam is just fun size." I loved it and continue to use it because my Fun Size Liam brings me joy in a big way!!

Liam today. All hooked up and ready to be fueled!