Megan & Kevin- Baby Jensen

Two Rounds of Tube Weaning

Our baby was born at 26+5 weeks. We were in the NICU for over 6 months. By the time he was on low enough oxygen support to try oral feeds, he had lost his suckle reflex entirely and had severe oral aversion from all the tubes and treatments while in the NICU. He was sent home 100% tube fed.

We worked with a SLP for several months. While the SLP did help move his gag reflex back, we felt stuck in regards to oral feeding. I had read a success story on Reddit from a family that worked with Lindsay, and from there, we connected with Lindsay specifically to get help on our baby’s tube dependency and oral aversion.

Our baby was a tough one, to say the least. Eating was such a mental game for him. During the groundwork phase, he was semi-successful. He stopped pushing the bottle away and getting upset, but he was still skeptical of allowing it in his mouth. With Lindsay’s guidance, we decided that perhaps hunger would motivate him. Unfortunately, he lost too much weight and didn’t gain much progress, so we paused the wean until he got his weight back up.

Round two, we focused on both formula and solids, as my baby still hadn’t shown a preference either way. We rotated between several different drinking vessels, hoping one would prove to be his preference. He would drink some if heavily distracted by the TV or something else, but never without distraction. Because our baby’s challenges seemed to be more of a behavioral and mental block, Lindsay was willing to think outside the box. She encouraged us to try things like distraction so he could practice swallowing, different bottles and flows, different formulas, and whatever else might help him make progress.

One thing I appreciated about working with Lindsay was her adaptability. When things weren’t working, there wasn’t a sense of forcing the plan. We regrouped, adjusted the approach, and tried something different. My baby didn’t fit neatly into the typical oral aversion story, and I appreciated that Lindsay was willing to adapt the plan to him, instead of expecting him to adapt to the plan.

Slowly – oh so slowly – my baby started to show a preference for the bottle. He would bite it, but still no suckle. Lindsay encouraged us to try a fast-flow nipple so he could still get milk even with biting. She also instructed us to model sucking with our lips and even drink from our own bottle to show him how. Then one random night, he started sucking.

The connection of hunger and formula clicked, and from there it was skill-building. He had a few days of refusal again and those days felt pretty discouraging after waiting so long for that breakthrough. But with Lindsay’s instruction, we kept respecting his refusals and avoided pressuring him. After a few days, he went back to drinking and never looked back.

My baby fell outside the typical when it came to oral aversion. There were many times I was convinced we were part of that small percentage of babies who just couldn’t learn to orally feed. By this point, he was nearing a year corrected age, which made it even harder to stay hopeful. Some members of our medical team had even suggested that because he was older and had lost his suckle reflex, he might not learn to eat for years. Lindsay assured me several times that he would eat – we just didn’t know how or when yet. She was so encouraging and made the process feel less hopeless and more hopeful.

Though it was hard, we really did try to implement the principles she taught us of “zero pressure”. Sending her videos helped because she was able to identify small ways we were still unintentionally pressuring our baby. She also reminded us that babies don’t eat the same amount every time or every day. As a tube-feeding parent who was used to measuring every milliliter, that was a hard but important lesson to learn.

The process wasn’t linear, and our baby didn’t fit neatly into the “typical oral aversion” story. But Lindsay met him where he was, adjusted when needed, and helped us stay hopeful. When I was convinced he might never learn to eat by mouth, she never seemed to lose faith that he would. We just had to figure out how to help him get there.