My "Frienemy" The Feeding Tube----Awareness Week 2013

These two video shows how we do a feeding for Asher. 

Ng tube,  g-button, "eating" with dad, and showing off the g-button in the bath

"Eating" outside- changing things up helps both of our attitudes! 

Well, I'm a tad late on this...but we've been meaning to post! I never knew about feeding tube awareness week until this year. Asher is 100% tube fed. All of his nutrition (formula now) comes from his feeding tube. He hasn't sucked on a bottle since he stopped in late July/August right before he got the g-button. It was a slow process to let go, and grieve that he would not do it anymore. And since then there have been several highs and lows! He is able to eat puree's, so that has been a positive. BUT, he doesn't always want to so that has been part of our roller coaster. And in the back of our minds...we are always wondering about his esophagus and the stricture (narrowing). Has more scar tissue formed? Does that have anything to do with his lack of eating? It's frustrating. And those are questions a dr can't fully answer, and can maybe answer if we decided to do another esophogram (x-ray). We haven't been given a good reason to subject him to more radiation yet. Babies are supposed to have like 1-2 x-rays a year (if any)....and Asher had days in the NICU where they took an x-ray of his lungs twice a day! So, unless he starts showing that he is unable to swallow his own saliva, or he immediately throws up food eaten by mouth right after swallowing...we have assume the ole esophagus is working as it was meant to.

Tube fed babies often have a harder time learning to eat by mouth. Asher at just 2-3 mo old (corrected) was having such a hard time eating from a bottle because of reflux, and the tube down his nose and throat. So, with all that irritation (he'd had something down his throat for 6 months) he decided he was done. So, he lost that connection of "eating/swallowing fills my tummy and that feels good". Everything he was doing with his mouth did not feel good so he decided to stop using it. It was a process to get him back to wanting things in his mouth. Development helped with this, because as he started nearing the teething age, he did want to chomp and chew on things. So that worked in our advantage!

We started him on oatmeal cereal at about 4 1/2 months corrected. It took him about a good week or so before he really wanted to try it. During that time though, he was struggling with throwing up. He would throw up 3-4x per day and usually each one was pretty large, about 2-3 oz of his about 4oz feeding. From parents, doctors, and therapists I have talked to...it seems like throwing up frequently comes with being tube fed. I think it has to do with the pressure of food coming in a different way, and the brain not really being "ready" for food each time and participating. So, we have to be very careful while Asher is getting his milk and 20-30 minutes after so that he doesn't loose it all. Many people talk about kids with reflux or babies that projectile vomit and how it's just gross and inconvenient. But usually those babies grow well, and still want to eat. Asher would cough, gag, choke, turn red, eyes water, and then throw up, and then struggle to clear his throat several minutes after throwing up. It was PAINFUL for him and for us to watch. And having so much come up was not helping in trying to get him to eat things. Think about when we get a stomach  bug and throw up, do we want to eat?? Also, it was stressful because he was always sitting at the 2% mark for his corrected age in weight. So, he's always had some catching up to do in the area of growing. But then, we also have to remember where he started- at 1 lb! He still throws up, but thankfully it has gotten less frequent.

So, when we introduced cereal and purees it was really not the ideal time to try to get him to eat because he had so much coming up. We started a new med, and that really helped at first. The throwing up stopped, and the side effect to the med (periactin) was that it increased appetite. So, for about a month or so, Asher took off with puree's! He was eating 1-2 oz of puree 3x a day! Over the next month or two, we tried many different foods and he really accepted most of them well! He didn't flinch at vegetables either as long as we put some fruit on the spoon with them too. It was so fun to feed him, for him to enjoy it and just eat....like any baby. I was making baby food and really enjoying getting to make his food, and watch him eat it. Things felt a little more "normal".

But, the excitement wore off, and probably the side affect of periactin and Asher stopped eating much by mouth. He loves new things, and so we've tried a few of the "baby" snacks here and there, but he is not crawling yet and many of those require chewing skills that come with a baby's crawling skills. So, we try puffs, and yogurt melts and he's been doing ok with those! He enjoys the crunchiness and he LOVES new things that make him feel like a big boy. Sometimes he gags on them when he's swallowing and then he might throw up everything he has eaten, plus some milk..so that is super frustrating! We want to keep his experiences with food positive. And we want to limit the gagging/throwing up as much as we can, and we are working on helping him loose his sensitive gag reflex. So, we will keep trying! We do lots of cheering and silly sounds while he's experimenting with purees or other foods in the high chair. We celebrate what may seem like "small" things to others. We offer him a combinations of things to engage him with flavors and let him practice his eating skills. Some days he likes one thing, and the next day he doesn't like it all. That's a baby for ya- especially a preemie. Opinionated and stubborn. And at the root of the whole problem is that he doesn't understand why he should put that spoon with food in his mouth. He's not been able to make that connection with his food always coming to his tummy through a tube instead of through his mouth.

So, this is a process. And mostly what I hear is, it takes time. It takes time for the baby to develop the skills to eat, and not gag and throw up so much. And then it takes time for them to understand and connect how much they need to eat to sustain themselves and eventually, get off the tube altogether. In the mean time, we do therapy each week, and we keep experiences with food positive. We work on lessening the frequency or length of tube feedings so that he can have a "normal" eating schedule that fits with where he is developmentally, and that hopefully, helps him to feel hungry. And we pray. We keep praying that he will enjoy eating one day, and be able to eat enough to get the g-button out! I think I will cry big tears on that day. That will be such an accomplishment and answered prayer.

This, by far, has been one of THE HARDEST on-going struggles we've had since leaving the NICU. To not be able to feed my child like everyone else, hurts some days. To not be able to enjoy feeding my child, and seeing he doesn't enjoy it either, hurts. To see my child struggle with something that is easy, or just comes to other children effortlessly -- that hurts some days. But, sometimes it's not painful, and I am just thankful for that tube, and the technology, and thankful that our little one is growing! But other days, I hate that tube, I hate that pump and the annoying beep on it, and all the syringes, medicine tubes, button pads, and granulation tissue that come with having a g-button. Some days I don't want to prime that pump one more time or clean it out. Some days I just wish I could pop a bottle in his mouth....or even better, nurse him. But those days are far from us now, and we've had to mourn that loss over and over again. A bottle is foreign to us now where as a feeding tube was before! Another mom called the tube her "frienemy".  I agree! It can be my best friend, and then my enemy all at the same time. But Asher being tube fed is just one more thing that God can teach us through. It's something that frequently causes me to pray. It's one more thing that makes me sort out what is really underneath my disliking that it's a part of our life. And that's always fun. To get to the heart underneath something hard.  (Sarcasm) It's actually mostly not fun. But, it is refining, growing me, and teaching me more about God's character, and that is something I can say I'm thankful for.

Thank you for reading, praying, and supporting Asher, Bryan and I. And, thank you for taking the time to learn about how some very special kids "eat"!