Milo’s Feeding Journey

We are back! Milo is doing great and we are about a month post op. We have about 2 weeks until his esophagram where we will see how he is looking and most importantly how much he is tightening up. Re-stricturing is obviously our biggest fear. But we believe Dr. Smithers no nonsense approach at being proactive and not waiting for symptoms will save us. That is what hurt us last time.

In the mean time our goal is feeding. Most of us don’t have a medical degree except for the one by Grey’s Anatomy proxy or by medical mom life. So it is natural that most people are confused, have lots of questions, and are dying to know when he will get his g-tube out or when we can all split a pizza with the Bubbie.

There are many reasons Milo struggles to eat. Number one being he simply has been unable to most of his life.

Milo was born with what is called a Esophageal Atresia/Tracheoesophageal Fistula (long gap type C).

Basically instead of his esophagus leading to his stomach it connected to a blind pouch.

At 3 days old Milo had surgery to sever this connection (attempt to remove pouch which we later realized wasn’t completely done) and connect his esophagus properly to his stomach.

Later on it became clear that a fistula (leak) was persistent. After a minimally invasive procedure did not successfully repair the fistula he went back in for another major repair.

He then endured 9 dilation procedures before most recently undergoing a stricture resection surgery as well as aortopexy surgery.

During most of these times it was not safe for him to eat by mouth. Either because of a fistula or leak being present, strictures making it difficult and uncomfortable, or because of risk of aspiration. Giving him extremely limited experience eating by mouth.

The other thing to understand is that because his esophagus was not connected properly he likely has esophageal dysmotility. Fancy way of saying he either doesn’t have the same muscle function in his esophagus to move food to his stomach. This is something Milo will cope with his entire life. They teach TEF kids that for every 2 bites of food they should have one sip of water to help gravity move food down. This also means that some foods just won’t be an option for Milo. But every TEF baby is different.

Every baby with Milo’s condition is different with their own journey towards ditching the g-tube. We are very hopeful that with Milo’s resilience and desire to eat that he will ditch the tube some day.

But it’s a fight and effort every day. Right now he is going slow and steady. Around the time we started serial dilations he was choking a lot and then became disinterested, likely in an effort to protect himself. So I can tell he is cautious and unsure. He gets excited but also chokes easily. Feeding Milo is very different than how my friends feed their toddlers. I can’t be distracted. I’m listening to his breathing, watching for coughs, or choking. Always alert. I need to make sure he is not aspirating and need to be aware of how much he is putting in. There is no dropping a handful of cheerios and berries on his plate and walking away.

For now we take it day by day. Some days look like Charlie sharing licks of an icecream cone or popsicle, smiles for us all. Some days he shakes his head no and refuses everything. Other days he’s shoveling in bits of pudding, pouches, even some puffs or yogi bites. Other days a tiny bite can lead to a choking fit, vomit, junky breathing. I keep the bar low protecting my mama heart from let downs and I dream of treating Milo and Dr. Smithers to a seafood tower in St. Pete someday.