Feeding Difficulties

Written by Anna

When Linus was a few days old his surgical team cleared him to begin feeding. Our NICU nurse grabbed a bottle, and I sat down with Linus and popped the bottle in his mouth. He squeaked as he excitedly sucked on the bottle, but I noticed the amount of milk in the bottle did not decrease as Linus “ate.” Our nurse showed me some different positions to hold him in to see if they would help him feed, and nothing changed. Our OT was promptly called, leading us to get the vocal cord paralysis diagnosis. 

To feed, babies need to coordinate their breathing, swallowing, and their sucking reflexes. If one of these components is difficult for a child, it can hinder their ability to eat by mouth. Linus’s unique airway anatomy makes it difficult for him to coordinate his breathing and swallowing, so he had to be fed through an NG tube – a thin tube that goes up his nose and down his esophagus into his stomach. 

We were discharged from Seattle Children’s on April 2, and sent home with the tiniest baby bottle I had ever seen with a super low flow “ultra-preemie” nipple, meant to help babies who could not tolerate swallowing the standard amount of milk. We were instructed to allow Linus to practice taking up to 5mL (or ⅙ of an ounce) by mouth when he was breathing well and showing hunger cues. Zach and I eagerly practiced feeding Linus as often as he was willing. I cautiously examined any changes in his breathing, counted how many times he sucked on the bottle before swallowing, and documented the volume he was able to consume with each swallow. 

We were eager to get Linus to feed by mouth; few nights would pass without Linus pulling out the NG tube. Being tube fed also demands the inconveniences of being tethered to a pump during feeding times and additional nighttime disruptions. Above all, we wanted Linus to have the satisfaction of actually eating. We were looking forward to our follow up with our OT later in the month to see what we could do to help make progress.