I became a feeding tube mom shortly after my son was born.
My son and I developed an infection during labor, and his umbilical cord was wrapped around his neck twice. I was rushed into an emergency c-section, and my son was not breathing. He was intubated and airlifted to the local children’s hospital NICU to undergo hypothermia treatment to increase his chance of survival and protect his brain from further damage.
It was a long and terrifying road. He has a small lesion on his brain, which doctors were concerned could lead to cerebral palsy or other development issues, but otherwise, he was a healthy baby by week two.
The only thing keeping us in the hospital was that my son would not eat by mouth. This could have been because of the stressful birth or cooling treatment, but doctors could not be certain of the reason.
We spent weeks trying to get him to eat, and after many discussions, we decided to have a feeding tube placed so we could take our son home. We didn’t make the decision lightly, but we were just ready to be home where we could work on getting him to eat in a lower-pressure environment.
As a first-time mom learning to navigate motherhood, I felt so overwhelmed. We had countless doctor appointments with his pediatrician, GI doctors, Neuro, his surgeon, and his feeding therapists. And I didn’t know the first thing about feeding tubes.
So I researched, and I learned. I also made mistakes.
From one feeding tube mom to another, here are 5 tips I learned along the way:
1. Educate Yourself
Talk to your child’s doctor and ask questions. Dealing with feeding tube surgery can be stressful and make it hard to retain information. I recommend bringing a notebook to all appointments.
Also, there are many helpful resources online. The more you know about your child’s condition and using the feeding tube, the more comfortable you will feel at feeding time.
2. Join Facebook or Other Groups for Feeding Tube Moms
Finding a community was a lifesaver for me! I joined a few groups and was surprised at how many other moms were navigating the same experience. We asked questions, shared tips, and had a lot of laughs about silly mistakes. Mostly, we made each other feel a little less alone.
3. Cut Yourself Some Slack
This is a big one! You aren’t going to be an expert at first. You are going to make mistakes. I remember the first time I had to feed my son alone. I called my husband crying because I couldn’t get the tube in. Looking back now, I wish I had given myself some grace. It didn’t take long before I felt like a pro and feeding time became routine!
4. Find Ways to Bond While Feeding
I was afraid that, because my son was tube fed, I wouldn’t experience the closeness of feeding my baby. I invested in a free-arm device for holding the feeding syringe so my arms were free for snuggles, reading, or playing.
We also connected it to a bouncer, swing, stroller, and high chair–you can get creative with feeding time to give your baby and yourself more freedom and fun!
5. Ask for Help
If you have family or friends willing to learn how to use your baby’s feeding tube, spend a day teaching them. Have them practice with you. It’s great to have a backup that knows how to feed your baby in emergencies or when you need a break!
A feeding therapist can also be a great resource if your baby can physically eat by mouth but needs extra help. Our son’s therapist gave us activities to work on at home and helped guide us through our journey.
Parenting a baby with a feeding tube can be challenging, but it gets easier with education, support, and a little grace. Celebrate the little wins along the way, and remember, you aren’t alone. There are many great groups and resources to help!
The opinions expressed in this post are those of the author. They do not necessarily reflect the official policy or position of El Paso Mom, its executive team, other contributors to the site, its sponsors or partners, or any organizations the aforementioned might be affiliated with.
