Feeding Tube Awareness Week 2019

An Instagram friend brought it to my attention that this week is Feeding Tube Awareness Week si folks are sharing their stories and experiences with feeding tubes.

Feeding tubes are common for those affected with ichthyosis because the condition causes increased skin production which takes energy, which takes calories. Lots and lots of calories. Feeding is what kept us in the NICU the last few weeks so we were sent home with a nasogastric (NG) tube with the hope of avoiding a feeding tube that would have to be surgically placed. Our nurses showed us how to measure the length of the tube from her nose, to her ear, to the middle of her chest. We learned how to make sure that the tube was in her stomach and not her lungs. We learned how to insert the tube through her nose and thread it down into her stomach. We learned how to secure the tube to her cheek with a collection of adhesives to withstand the Aquaphor and the coconut oil, and to protect the fragility of her skin.

I ended up weaning Olivia from the tube myself because it was a version of what I can only imagine would be hell. I was having to re-insert and re-secure her tube over, and over, and over again. Sometimes her passageways were so tired from all of the threading that we couldn’t get it through at all. I was up at all hours of the night attending to beeps and clogs and thrown up formula. I was pumping and measuring and mixing. And that stupid tube would slip right out of its dressing, sometimes thanks to Olivia pulling it out.

It was a hell for me because Olivia hated it even more than I did. It was exhausting because measuring and cutting and taping and fighting insurance on ordering particular adhesives created a never ending list of things I had to do TO my baby. It’s a tough thing to grapple with because the technology saved and sustained Olivia’s life. She was growing and tolerating most of her feeds. Without a feeding tube, I’m not sure how long Olivia would have stayed with us. But I also know that babies eat when they are motivated, and sometimes you have to just give them that chance to feel hungry and eat. But feeding tubes also provide an opportunity to pack in some extra calories when their bodies are too tired to do the work. And here we are, with no feeding tube and teeth coming in and an appetite that is nothing short of impressive!