A Tubie Baby: Embarking on the baby feeding journey no one talks about
As a seasoned mom, pregnant with my third, I never expected to have a tubie baby. Honestly, I was completely unaware of tube feeding.
As modern moms, we’re bombarded with feeding war messaging – formula versus breastmilk, on-demand versus scheduled, nursing versus bottle feeding.
Yet there’s an entirely separate feeding world that no one really talks about. This makes it all the more challenging for parents who don’t even have the privilege of mainstream choices. (And, yes, I know countless parents are unable to feed their babies exactly how they want to.)
Some babies are neither able to breastfeed, nor bottle feed. Thankfully, today, there is another option for them – tube feeding.
Finding this third feeding world
Before she was even born, my daughter was diagnosed with a Congenital Heart Defect (CHD). We were informed she would need open-heart surgery by the time she was 6 months old to survive. It is not uncommon for babies with CHD to have feeding challenges and trouble with weight gain.
While learning about her heart defect and what to expect, I came across tube feeding. I discovered many heart babies need to be fed by tube during some part of their CHD journey. For some, it’s a very short stint, and for others, it can be a longer ongoing need.
After exclusively nursing my first two children, I did not anticipate having a tubie baby, even considering her congenital heart defect.
What is a Tubie Baby?
A tubie baby is a baby that is fed breastmilk, formula, or food blends using a tube that drops it in their stomach or intestine directly. They are unable or limited in some capacity to consume by mouth, swallow safely, or need additional nutrition support.
No one would choose to tube feed their baby if it was not necessary. There is always a medical condition, circumstance, or other challenge that necessitates a feeding tube.
Why a Tubie Baby Needs a Tube
There are a variety of reasons why a tubie baby might need a feeding tube. It’s important to know that if a baby uses a feeding tube, there is a reason for it. Doctors do not suggest feeding tubes without a valid need.
One of the most common reasons a baby could need a feeding tube is premature birth. Some other reasons are swallowing problems, congenital heart defects, and digestive issues. There are hundreds of conditions that could cause a baby to need a feeding tube.
Some babies use a tube for only a few hours or a few months, while others with serious medical conditions might always require a feeding tube.
Babies need to take in more calories than they are burning. For certain circumstances, a baby could be expending more calories than they’re able to take in by breast or bottle. Therefore tube feeding (enteral feeding). is more efficient since they will use far fewer calories this way.
Babies burn calories while nursing and bottle feeding. This is not an issue for most healthy infants. However, my daughter’s heart condition caused her to burn more calories than normal, making weight gain extra tough.
With tube feeding, the breastmilk or formula is dropped directly into the stomach or intestine. Bypassing the mouth and esophagus is a way to get around feeding and swallowing challenges, and reduces the amount of calories burned.
There are different types of feeding tubes. A tubie baby could have an OG tube, NG tube, G-tube, J-tube, and even different variations within these. The tubes vary by where they enter the body (mouth, nose, belly) and where they deposit the milk or food in the body (stomach, intestines).
A tubie baby could exclusively tube feed, while others may only use a tube as extra supplementation to nursing or bottle feeding.
Our Journey: Why Tube Feeding for My Daughter
Born critically ill
My daughter was unexpectedly born with a critical heart defect. Due to her condition and circumstances, her feeding journey was challenging right from the beginning.
At about 8 hours old, a doctor told me I had to stop nursing my daughter. After reviewing her echocardiogram images, they discovered the critical heart defect.
From here, they determined it was no longer safe for her to consume anything. She was transferred to a large children’s hospital with esteemed cardiology and heart surgery programs.
Open-Heart surgery and complications
After a whirlwind few days, she had emergency open-heart surgery at barely 3 days old. This left her with a paralyzed vocal cord.
Vocal cords not only help produce sound, but they should also move to protect your airway. Hers was no longer functioning properly. Through a swallow study, they found she was aspirating silently, meaning some milk was going to her lungs rather than down to her stomach. Therefore this meant it was no longer safe to feed by mouth.
Set on the tubie path
With this confirmation and knowing it is always more challenging for heart babies to gain weight, it was easy (sort of) to accept the need for a feeding tube. Rationally, it was easy to understand and accept, but this doesn’t mean it was easy to accept emotionally.
How you choose to feed your baby is personal. I exhausted myself and made so many sacrifices to nurse my first two babies. But it was worth it to me and I’m glad I was able to make that choice. With my daughter, however, there was no choice. She had to have a tube for a chance to thrive.
Beginning of our feeding tube journey
We had to quickly learn the ins and outs of NG (Nasogastric) tube feeding. The hospital led us through videos and hands-on training. We had to prove we could handle everything to get her discharged and continue tube feeding at home.
There were feeding tube syringes, feeding tube bags, a feeding pump, NG tubes, tape, scissors, wipes, and more. Tubie babies come with a lot of extra feeding gear and supplies.
We met with feeding specialists, the Dysphagia team, ENT, and more to discuss the best plan for her. While the NG tube was essential at this point, it was also a temporary solution.
One of our last steps before discharge was meeting with our DME (medical equipment and supply company) for feeding tube supplies, how to use her pump, and guidance on re-ordering more supplies.
Overwhelmed would be putting it lightly. I swallowed my fear, pushed aside the tougher emotions, and set myself to accept the mission. This was our new reality, our daughter could only eat safely through a tube and if we wanted to bring her home, this is what I had to do.
The Tubie Baby Feeding Experience
Doctors will perform tests and scans and have discussions with parents about tube feeding options if it is deemed necessary.
Certain tubes are placed by hand, using an X-ray and others require surgery.
At a high level, the tubie baby’s milk is put in a feeding tube bag or special feeding tube syringes and attached to the tube. There are different methods to push the milk through the tube to the baby. This can be done by hand or using a feeding tube pump (a small machine) depending on the amount, caregiver’s preference, and the baby’s individual needs.
The milk goes directly from the bag or syringe through the tube and into the baby’s stomach or intestine. This can be a quick or lengthy process depending on the baby’s tolerance.
When my daughter was younger, her tube feeds took about 45 minutes and we did this approximately every 3 hours. When she was 6 months old, she could only tolerate a teeny amount at a time. Therefore she was on continuous 24-hour feeds, slowly being fed her milk in tiny drops over the entire day.
Tubie babies require ongoing doctor appointments to monitor their condition and growth. And they might go to feeding therapy, physical therapy, and others to improve and maintain their skills and strength.
While it can feel daunting at first, parents can take their tubie baby’s out and about even while feeding. It takes extra prep work and supplies, however with time and practice you figure it out. Sometimes tube feeding can even be more convenient than other feeding methods.
Embracing the Unconventional: Feeding Tube Awareness
Not many people talk about tube feeding. While it is not commonplace, there are lots of babies that need a tube for some reason or another. Not everyone can choose a bottle or breast.
Tube-fed babies and their parents are not lazy. Taking care of a tubie baby is hard work. No one chooses the tube route for fun or personal preference.
Some of the babies can also work on bottle feeding and nursing, while others are unable to at all. Each tubie baby’s journey is unique.
Sadly I heard of many parents struggling to defend their baby’s need for a tube. They were met with judgment, disapproval, offensive questions, and even disbelief of the need.
Feeding tube awareness is generally low. Many people do not understand or are unaware of the real need for some babies. I didn’t know before. This can make it an isolating and more challenging experience for parents with a tubie baby. Tubie families need more support!
Show your support in February. Feeding Tube Awareness Week is February 4-10, 2024. Learn something new about tube feeding, share a resource, or support a friend.
If you are a parent with a tubie baby, ask your hospital, therapy services, or other doctors whether there are any local tube-feeding support groups or tube-feeding families they can connect you with. I found several Facebook groups that personally helped me navigate our tube-feeding journey. You can also connect with other tubie families on social media for support.
If you have a family member or friend with a tubie baby, try to support them! Ask questions respectfully. Offer to help in ways that would be meaningful to them. Don’t question that they or their medical team know what’s best for their baby’s feeding needs.
Omg! This is exactly all the information I was looking for. There’s almost nothing online
Glad to be a resource!