I have two kids that rely on a feeding tube for nutrition due to the same diagnosis of silent aspiration. My son Nicholas was diagnosed when he was 2 weeks old, while my daughter Grace at 5 days old. Silent aspiration is when fluid enters the lungs after swallowing; silent meaning they didn’t cough to let us know they were aspirating.
Nicholas and Grace were born three years apart but their diagnoses happened the same way. They were both taken to the NICU immediately after their births because they needed oxygen. During their stay in the NICU, we saw that during their bottle feedings their oxygen would decrease.
A swallow study confirmed they were aspirating their food. The study is an x-ray that allows us to see the food come back up and go into their lungs. A feeding tube was the safest option for them in order to get proper nutrition.
Before I had kids I had never heard of feedings tubes or knew there were additional ways to take in nutrition. At first, the idea of Nicholas having a feeding tube didn’t bother me as much as actually handling his equipment. I was just happy their was an alternative way for him to eat and grateful he could come home after 7 weeks in the NICU. Using the pump and administering his feeds by myself was the hard part. I messed up a lot of things. Eventually I got it down and after almost 4 years and two kids with feeding pumps, I can do it in my sleep.
I felt the same way about Grace. After watching her struggle with the bottle and saw her oxygen go down, I knew she’d be diagnosed with the same condition as Nicholas. I just wanted her to have the surgery so that she could come home, but I was mostly thankful that I already knew how to use her feeding pump. That made things so much easier.
Nicholas struggled a lot in the beginning with tolerating his feeds. When he was approved for purees at 8 months old, I was excited. I thought he was going to love eating and that would be the end of his feeding tube. But it was harder than I anticipated. He had a lot of sensory issues with food and eating. It was a struggle to even get him in the highchair to eat. He regressed and eventually stopped eating by mouth altogether.
We played around a little bit with food for a year and then for another year completely stopped trying. He had zero interest. It was just about six months ago when he became interested again. He has taken a few nibbles of food, but mostly licks things. Just him sitting at the table with us at mealtimes is incredible. I know with Nicholas it’s going to be a really long process. And during this time of exploration, I’m grateful we have his feeding tube as an alternative for him to get the nutrition he needs.
Grace is a completely different story. She loves food and will stare us down until we feed her. Even though she’s doing well, it will still be a long process. She won’t have another swallow study until April, so we won’t know for a while if she can tolerate thinner liquids. At the moment she takes in water and other fluids through her tube.
I used to think that the only acceptable progression for Nicholas and Grace was for them to be off their feeding tubes forever and to eat by mouth. But that’s not the case. They progress every day just by being able to tolerate their tube feedings. It helps them grow and gives them strength so that they can one day eat by mouth.
Having a feeding tube is the safest way for them to take in nutrition. And if it’s something they need to have for the rest of their lives, I’m OK with that. I’m forever grateful that there are alternative ways for my kid’s to eat. It may not be normal but it’s saved both of their lives.
Kate lives in Colorado with her husband and three children. You can read her writing at her blog This Special Journey.