My youngest daughter spent the first year of her life coughing her lungs out. Or so it sounded. Hour after hour, night after night, I’d sit outside her bedroom door, tears streaming down my face, with the helpless feeling of “there’s nothing I can do to make this better” knotting in my stomach. Nothing I tried worked. No humidifier, no vicks, no essential oil – nothing gave my sweet girl any sort relief. And most nights, I’d rock her for hours on end, as one illness after another wreaked havoc on her lungs.
It took months for us to get past the reassuring comments of “it’s common for babies to get a lot of colds” to the truth: that my sweet, precocious, brown-eyed baby was aspirating due to a then-undetected laryngeal cleft. And though it took a while to find a thickening recipe and surgical procedure that would help, once we did, her quality of life – and mine! – improved dramatically. Still, anyone who knows me knows this: there’s nothing that feels more like “trauma” to me than the sound of that girl coughing. It’ll stop me dead in my tracks, wake me from the soundest of sleeps, and immediately send that helpless knot right back to my gut. Not because her cough is dangerous, but because it feels dangerous to my PTSD-impacted brain.
And most certainly, I am not alone. Parents whose children have struggled similarly to mine often face significant trauma triggers, and sometimes, our response to these triggers can unnecessarily stall the progress we make in weaning our children safely from feeding tubes. The minute we hear a cough or baby cry, the second there’s a gag, cough or hiccup – panic sets in. Because to a medically complex kiddo, every scenario feels like a medical emergency, even if it isn’t. Trauma has made us so used to un-answered questions that we forget what normal childhood behaviors look like, and at the first sign of something that feels “off,” we embark on a never-ending quest to figure out what exactly could be causing the “problem.”
When this happens, your first thought might be to stop weaning immediately. But before you do that, let’s take a look at some of the behaviors you might see during the weaning process in the hopes of reassuring you: more often than not, these “behaviors” aren’t indicative of the problems you saw before. Rather, they can be very normal response to awakening hunger.
1. Crying
Increased crying is very common during the weaning process, especially for tiny ones who don’t have the cognition to understand that the discomfort they feel is simply their body saying, “I’m hungry! It’s time to eat.” So if your little one is moodier and fussier than normal, that’s exactly to be expected! Guide them through that feeling by using words that help them to correlate what they feel with what they need: “I can see that you’re feeling mad. I think your body is telling you that it’s time to eat. Let’s make dinner.”
2. Waking at Night
As appetite begins to emerge, children of all ages might begin waking up at night, wanting to eat. Keeping in mind that they might not be able to say, “I’m awake because I’m hungry,” caregivers can be reassured that this is a very normal – and hopefully, short-lived – part of the weaning process. Here are some good tips for how to respond to new night wakings.
3. Gagging
Gagging almost always looks worse than it is. And while it might seem like the first stage of choking, it’s important for parents to remember that it’s not: gagging is simply a stage in learning to eat – in learning how to help your body to swallow new textures. So, if your child is trying something new and has a little bit of trouble with it in the beginning, try some deep breaths and remain calm (so as not to make the experience feel more frightening than it is).
4. Gas
As unpleasant as it is, gas is the tie that binds us all together: there isn’t a one of us that doesn’t have some gas from time to time. We have it because we eat, and eating can come with some (mildly) unpleasant side effects. Changing mealtime amounts and times can change the gas pattern in your little one’s body. So our advice when you smell a little more gas than normal? Have a good laugh, and move on with your day.
5. Hiccups and Coughing:
Hiccups are annoying, and coughs can be indicative of a wide array of things from allergies to illness to saliva going down the wrong side. But these things are not necessarily indicative of aspiration. So, if your child begins to cough and you’re worried, press into your team so that we can help you to better assess what’s going on.
With any one of the above, our best advice is this: be with your child in his feelings without succumbing to the pressure of having to fix all of his problems. It is ok for your child to have feelings – even ones of irritation or discomfort. Acknowledge the response you see, be present in that response, but do not be over-burdened with the feeling that you need to make everything better. Just as you express all of your deepest feelings to your best friend, your child is expressing feelings to you. And just as you simply need to feel heard and understood (not fixed), your child simply needs the reassurance that you are with them, attentive to their feelings, unafraid and unshaken.
And, when you observe these changes in your child, don’t disappear. Don’t just stop weaning. Instead, recognize that while the fear you’re feeling is valid, it might not signal something dangerous. So press into your team: reach out. Call. Text. Email. Get the support you need to find relief and peace and hope. Because it’s there for you – as are we.
Elisabeth Kraus, MiT, Parent and Family Coordinator
Becky Keifer, MA, CCC-SLP, Lead Feeding Specialist