I get a lot of questions about Leo’s feeding tube, understandably so because they aren’t very common unless you spend a lot of time at a children’s hospital like we do! How long will he have it? Doesn’t he eat by mouth? Why does he have a feeding tube?

After Leo’s second heart surgery to repair his mitral valve in February 2019, his cry was hoarse after he got his breathing tube out. A swallow study revealed that he aspirated thin liquids, meaning tiny droplets of liquid got into his lungs with each swallow he took. This was from nerve damage to one of his vocal cords that occured during surgery. The fetal cardiologist we saw warned us that it may happen, as it is fairly common after cardiac surgery.

Fast forward to July 4th when Leo had his own Independence Day and moved from the Cardiac Intensive Care Unit (CICU) to the Cardiac Progressive Care Unit (CPCU). During the majority of his time in the CICU, he was receiving IV nutrition and later progressed to getting fed through a “transpyloric tube”, meaning a feeding tube below the sphincter where the stomach empties. Once his oxygen was weaned in the CPCU, the team decided to try feeding his stomach after nearly 4 months without food in it.

Leo’s G-tube ended up leaking massive amounts of formula out the hole where it was inserted, which was due to a stomach that was too slow to empty. Slow emptying is another extremely common problem in cardiac patients due to nerve damage from surgery in Leo’s case. Because his stomach had so much trouble emptying, Leo has a “G-J tube”, meaning one portion of the tube feeds his stomach (gastric feeds), and the J portion goes into his jejunum below his stomach. This enabled us to slowly transition to gastric feeds over time once his stomach learned to accept food.

Last September, another hurdle came up when Leo began vomiting anywhere from 3-6 times a day, including multiple times a night. After an echo to check his heart function and lots of blood work, the conclusion was that Leo will simply have the tendency to gag and vomit until he outgrows it. This has led us to challenges feeding him. Despite daily attempts at offering baby food purees, Leo often gags and vomits with just a small taste. He has to be on a pricey specialty formula to limit any potential allergens that could irritate his stomach further. To help him grow without giving too much volume, his formula is more concentrated to increase the calories, which means we go through A LOT of expensive formula each month! Thankfully, despite the vomiting, Leo’s growth is excellent on this formula.

I hope this answers questions that many of you probably have about his feeding tube and eating! Please consider donating to COTA on behalf of our COTA patient Leo if you haven’t already. Thank you for reading! 🙂