Sunday, February 9, 2014

Feeding Tube Awareness Week

It's Feeding Tube Awareness Week - I guess if you're reading this blog, you're already aware that I have a tube-fed child, and you've been learning alongside me as I figure out what that means for us. But here's a quick refresher in case you're new:

Baby M was born at 25 weeks gestation, and spent 4.5 months in the NICU before coming home. She had a temporary feeding tube while in the NICU, until she could suck, swallow, and breathe well enough to eat enough to gain weight. She was not able to eat enough to continue to gain weight, though, so after a few months of losing weight and being diagnosed Failure to Thrive, she had another temporary feeding tube placed and eventually a permanent one. It was not an easy decision, but it was the very best one we could have made in our case, and my only regret is that we didn't do it sooner.

There are a ton of reasons why people get feeding tubes. Here's a short list (bolded items affected Baby M at one point or another):
  • Extreme prematurity (the suck reflex does not develop until around 34 weeks)
  • Gastroparesis (delayed stomach emptying)
  • GERD, which can cause oral aversion in infants
  • Birth defects affecting the mouth, esophagus or stomach
  • Lung or heart problems (eating is a very difficult task, and it may take more calories to eat than the person can take in by eating)
  • Advanced dementia
  • Severe eating disorders
  • Diseases such as eosinophilic esophagitis (inflammatory disease of the esophagus) or mitochondrial disease
  • Difficulty swallowing, due to
    • mouth, throat, or lung cancer
    • dysphagia, a swallowing disorder
    • paralyzed vocal chord
    • aspiration risk (breathing in what should instead be swallowed - can lead to pneumonia)
The most common question I am asked is how long she will need the feeding tube, and the answer is simply "as long as she needs it". When the tube was placed, her oral aversion was so severe that she had to learn to be comfortable with food just being near her face or on her lips. Now we are teaching her to chew and swallow safely, what food is for and how great it can be. Eventually, we will have to teach her what hunger feels like and how food can help that. 

It's hard to think of a person losing the instinctive ability to sustain themselves, but that's what had happened - food was so painful and scary to her that it was preferable to starve than to eat. Knowing the hurdles we would face in teaching her to eat was actually my biggest stumbling block to accepting that we needed a feeding tube. But it hasn't been as bad as I feared. We have a strict "no pressure" policy - she is offered food  to eat by mouth whenever she is fed by tube and if she tries it, that's great, and if not, that's okay too. We eat in front of her and let her taste whatever she's interested in. She controls everything that goes in her mouth, sort of like baby-led weaning. We don't make a big deal of vomiting (it happens a lot). We work with speech and occupational therapists in our home and in a feeding clinic. And she's made some really good progress - her oral aversion is almost gone, she willingly tastes almost everything she is offered, she drinks water out of a sippy cup, she has learned to take bites of foods and spit them out. Doesn't sound like much, but I literally could not have pictured this six months ago. 

Once she is able to actually eat by mouth, she will still have to pass a set of criteria before the tube comes out:
  • Taking all calories by mouth for six months
  • Taking adequate hydration by mouth for six months
  • Taking all meds by mouth for six months
  • "Hopefully" experiencing a bout of illness during that six months (it feels wrong to hope for an illness but kids get weird about food when they're sick, so it's important that we know she doesn't need the tube while ill)
So we are a ways off - I expect to have the tube for the next year or two, and that's totally fine. When she doesn't need it, she'll let us know, but until then it has saved her life and my sanity. Here are some other great things about it: 
  • Obviously, nourishing my child without hurting her
  • Ever tried to give nasty-tasting medicine to a baby? It's easy for me to do!
  • I can keep her hydrated when she's sick without having to go to the ER. 
  • I can "vent" her stomach if she's gassy or needs to throw up. 
  • She has two belly buttons!

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