The title of this post is probably the number one question I get from people about Owen.
I know, it seems a little weird to have a button on your tummy and to have a 14 month old that doesn’t eat much, if at all, orally. Socially, food is such a big part of all cultures and no one wants Owen to miss out on this important part of enjoyment and socialization. And, since most of us have just always known how to eat, it’s hard to imagine just how difficult it is to learn to eat.
Why does Owen have a g-tube? The official diagnosis is “Failure to Thrive” which simply means that Owen is not able to sustain on the foods that he takes himself.
In Owen’s case, there are a myriad of factors that influence his ability (or lack of) to eat orally;
- He was born 10 weeks before a baby can physically suck, swallow & breath at the same time
- The ventilator and suctioning Owen’s experienced have him protective of what goes in his mouth – he associates people putting things in his mouth with bad experiences
- The severe reflux that Owen experienced made him associate food with pain
- Just like arms and legs can be impacted from Owen’s PVL, it’s possible that the muscles used for eating are also impacted.
- Probably the number one reason that Owen is still not eating is how little practice he’s been able to get. Every time Owen gets sick, I have to stop giving him food orally. When he is working hard to breath, he breathes faster. Faster breathing makes swallowing more difficult and increases the chances of aspirating – it’d be like eating while running a sprint. Also, a too full tummy means less room for the lungs, so when Owen’s not feeling well, we normally run his feeds over a longer period of time.
Where is Owen with Eating Today? We are coming up on a full year of starts and stops of Owen eating and with each stop, he seems to take a few steps backward. In May, Owen was taking a jar of baby food a day. However, those two mild colds in May meant that he had several days off and now, Owen is taking less than a tablespoon total over three sittings in a day and he’s not actively swallowing what he puts into his mouth. Basically, I put a small amount of yogurt or puree on his spoon. He puts the spoon in his mouth, and chews on or licks it and then lets the food sit in his mouth until it drools out.
Will he ever Eat? Right now there is not any reason to believe that he will not one day eat and drink like most of us. However, the process is going to take a long time – we are looking at years, not weeks or months. Next time you are eating, close your eyes and really process all the things that you are doing; chewing, moving food around your mouth and then down your esophagus and not trachea all while breathing which uses the same muscles as eating. There are many muscles involved in eating and they need to be trained and developed in the same way that he needs his muscles trained and developed to sit and walk. In addition, because his mouth is not where he’s gotten most of his nutrition, Owen needs to learn to associate eating food with feeling satiated.
The good news is Owen is not orally averse. He is sensitive to, and protective of, things being in his mouth, but he’s very comfortable with a self-placed spoon and smooth textured foods in his mouth. Now he needs to learn technique and build endurance. Again, even once he’s physically able to eat, we are looking at, at least, one to two years to build the instinct to want to eat and the endurance to take all his needed calories orally. They will not remove his g-tube until he’s proven several months of not needing it.
In the mean time, not only is the g-tube necessary, it’s also a good thing. I can’t tell you how many preemie and special needs parents agonize over their child’s weight gain. They literally dread going to the doctor for weight checks and feared “getting yelled at” because their child isn’t eating. With the g-tube, we don’t have those worries. We may need to change how often and how fast we feed Owen, but only in his two PICU stays have we had to stop feeding him. Making the decision can be difficult, but once you have it, it’s a blessing.
What steps are being taken to help him eat? Other than the NICU and a little coaching from a speech therapist since, I’ve been doing most of the work with Owen so far. There was hesitancy to having him go to therapy over the winter due to his frequent illnesses – they didn’t want to expose him to anything more. We now have a referral for a feeding evaluation with Gillette Children’s and I’m hoping they have an opening very soon. I’m still waiting to hear and will let you all know when I do. In the feeding clinic he will have speech pathologists and occupational therapists working together to help him learn to eat.Ain't No Roller Coaster