Did you ever feel that she will never eat?
This question was ask by someone I know. A question that I kept on asking myself during the time my daughter cannot eat on her own. My answer was, YES. My daughter had been in an Nasogastric tube for almost a year. So sharing to parents with the same situation we’ve been makes me feel helpful. I feel that in a way I give hope to them. I give them confidence to go on. Confidence, because they know that they are totally feeling the normal. The feeling of sadness, upset, fear and worry if ever their child will ever eat on their own.
What is Nasogastric Tube?
Nasogastric Tube is a thin, soft tube that goes in through the nose, down the throat, and into the stomach. When a child cannot feed on their own, especially the infants who has some conditions like CHD from birth, uses this tube. The formula is being pushed by a syringe to the tube straight to their stomach. This tube helps babies to still get the food and nutrition they need even when they don’t have the reflex to eat on their own.
This tube is temporary and can be wear for quite some time. It needs to be change every 2 or 3 weeks. The child is not hurt while it’s inside them. There’s definitely discomfort while putting it on. But with proper way of putting and knowing the right legth to put inside, it is really safe for the child to have it on.
How to get rid of Nasogastric Tube?
This is a case to case basis. Most babies who didn’t forget their reflex to suck easily got rid of the tube. But for babies who got this tube after they were born and became dependent with it takes quite a while to take it off.
Babies who learn quickly or didn’t even forget how to suck, in just few days or weeks they were able to take off. For babies like mine, it took us almost a year to take it off.
There is no secret or definite technique for this. The only way to get rid of this is to have a lot of patience and persistence on your child.
Ways of tube weaning
This is based on our personal experience. It may work or may not on you. Always seek professional advice to help you understand and do the proper ways depending on your child’s condition. On this list we list down what the professionals adviced us and our own ways. (Conventinal & Non-Conventional)
1. Try various feeding bottles.
There are a lot of feeding bottles available in the stores for you to try. Never be afraid to change the bottle if you feel your child is not comfortable using it. Always check the flow as well if it suits their age.
Our child liked Bibs bottle. Even if she didn’t learn to totally suck through the bottle, Bibs bottle teats are made from rubber that we felt that she’s much comfortable with.
2. Try offering pacifier
Pacifier maybe a no no for some parents, but the concept of pacifier for children who doesn’t have reflex is for them to be familiarize with the texture. It also gives signal to their brain that there are things that they should be putting on their mouth.
Our child hates silicon pacifiers. Again Bibs worked really good for us. She really love probably the texture of it and it’s easier for her to suck.
3. Try spoon feeding
Offering milk using spoon is a good way also. This will teach them how swallow. They can practice few spoons a day until they get the idea of using their mouth and muscles to swallow. This is actually not really feeding them. It’s more of a practice for their swallowing ability.
Silicon spoons that is shallow is great for this.
4. Never stop offering to them
When they reached the age where they can already try puree, offer them everyday.
This might be around 4 months or 5 months of age. Try to offer them fruit or veggie puree for them to be familiar with the taste and texture. They might not eat it all but the concept again is for them to be familiar with flavors and texture.
5. Try to change the person feeding
If you feel your child is upset when you feed him/her, try to ask another person to do the feeding. It can be the dad, grandma, grandpa, auntie or uncle. Maybe your child only needs a break from you so he/she can loosen up a bit. Sometimes the feelings of our child is associated on how we feed them. If they feel that you are frustrated, they feel the same way. That’s how they refuse to cooperate.
6. Change the place where you feed
Try to change the room or place where you feed your child. It’s also a factor where they are eating or being fed. If the place is too overwhelming for them, put them in a place that they feel relaxed and comfortable.
When we started feeding our child through mouth, we observe where she’s more relaxed. I take her to her room, in our dining area or to her room. There are times also that people around her affects how she eats. So what we did, we asked people to be seated or leave the room if they can’t be seated.
7. Distraction
This is one factor that affects our child on how she eats. Well, professionals will not agree with me on this one but it worked on our child. My child hates to be buckled up on her seat. So we never strapped her cause it frustrates her. When she doesn’t feel to be seated anymore, we took her out of her chair and let her play and still offer her her food. It worked for us because she felt free and she eats. (Note: We don’t do this anymore. Eventually we trained her to sit and eat until she finished her food.)
Another one that helped us was we gave in on what she wants while eating. For example she wants a certain toy while eating. We gave that to her for as long as she wants. Or she wants Cocomelon to watch while eating. We let her watch. The thing is we are not spoiling her. We just do what we got to do to be able to eat properly. Then later on we gradually took out the toy. We gradually lessen the tv time while eating.
This things will not make you a bad parent. We are just parents who do what works for us. Judge us? Ohh please you have your ways that are not conventional as well. 😁
7. Always consult professionals
On whatever ways you are trying for your child. We always need to prioritize their safety and well being on whatever steps we make.
Have an appointment as well with a Phoniatrician. Phoniatrician is a doctor whose specialized phoniatrics. Phoniatrics is the medical specialty dealing with the study and treatment of voice, speech, language, hearing, and swallowing disorder. By knowing if your child has problems with swallowing or other throat problems, you can address right away what are the things you need to fix and focus with.
What to expect during NGT weaning?
Expect being upset and frustrated. Don’t get me wrong, but it’s not a walk in the park process getting rid of the tube especially if your kid never learn to eat on their own.
There’s always heart breaks, tears, frustration during the process. You will feel in doubt of yourself and even ask will your child will ever learn. It’s all normal feeling. It can be exhausting physically, emotionally and mentally.
Everyday as you keep on trying you will eventually notice some changes. Small and big ones. Small as if he/she opens their mouth or no crying for today upon offering the bottle or spoon, or even taking a 5ml milk or food is always something to look forward to. Later on you will notice the big changes. Like they can drink up to 15ml or they can eat at least 2 teaspoons a day of puree.
Expect that it’s not the same as yesterday your child will response. You have to consider that there are good and bad days. But never stop or feel defeated. Just keep on trying. You have to be persistent even if you feel that there’s nothing happening. Believe me you just don’t see that there’s something changing everyday to your child.
When to know if your child is ready to take out the NGT?
Based on our personal experience, before our child turned 1 year old, she was able to eat through her mouth. How did we know that we can take it out? We went to the professionals. Professionals as in Nutritionist, Psychologist and a Occupational Therapist.
We enlist our child to meet professionals who can help us getting rid of her tube. We talked to them how much she eats, how offen, what are the things we tried, what she eats, etc. In short everything related to her eating routine we told them.
Nutritionist, Psychologist and Occupational Therapist
Nutritionist will explain to you how the food works on their body. He/she will explain what are the components of food your child needs to support their growth. The Nutritionist’s job is to make sure your child is getting the right amount of nutrients she/he needs. He/She will lay down a meal plan schedule on how you can feed your child. He/She can tell also what is necessary to take out from the schedule or what to add up.Once she/he knows the details, the team can determine if they can allow you to take it out.
Psychologist role is to assess if the child and the parents are all in good shape to do the process. It takes a whole team to make a successful results. Your Psychologist not only care for the child as well as the parents. He/she will give you support during the process.
Occupational Therapist is there as well. Her/his role is to make sure your child is showing all the right signs of growth. No delays on milestones. You may not notice much that they work during the meeting, but trust me their eye, ears and everything are on you. They will tell you the exact things you are doing right and also the not necessary.
It’s important that you have a good team of professionals that you can trust and support you and your child’s need. During this process they will advice you to gradually lessen the tube feeding and then eventually taking it out.
Once all of the things had been done and they noticed that your child is eating enough, doing all the necessary signs of readiness, they will advice you to take it out. And believe me it is the best feeling ever!
What to expect AFTER taking out the NGT?
During your sessions with your nutrition team, they will explain to you what can be the effect of taking out the NGT. They will tell you to expect that your child will loose or may gain weight. But more likely your child will loose weight.
If your child has been on NGT for the longest time, it means they became dependent to it. Most of the nutrition their body gets pass through the tube directly to their stomach and their body absobs it quickly. But once the tube has been taken out, you have to remember how much food your child gets into their mouth that’s the amount of nutrients they get.
After taking out the tube it is expect that they will consume less food. They have to get used to chewing, swallowing and eating on their own abilities. It can be tiring or boring to them.
What to do with this situation? Never stop offering to them. You have to try and try everyday. Try to give them the food they enjoy. Alot time on their feeding. Let’s say they have 1 hour to eat their meal. Whatever they eat within that hour, that’s it. You can offer again after an hour or two. This will go on until they got their rhythm. Your rhythm.
The effect to Child and Family of tube weaning
This process can affect you psychologically as well. Not just for the child as well as to the family.
During the process there is a big chance that you will notice your child’s weight will drop. This is expalined by your nutrition team and will tell you to expect it.
It can be alarming. For us, our child lost almost half a kilo in a week or two after taking out the tube. It affected me so much. I felt that I was not doing enough and I was failing as a mom. I thought I was doing something wrong.
As I talked to our team, the Psychologist asked me, “What are you worrying about?” “What are you scared of?”. I answered, “I am worried that I am not feeding my child enough. I am worried that she won’t eat enough .”. “I am afraid she will lost a lot of weight and she will get back to tube again.”. Then she asked me, “Is your child showing signs that she’s being weak?”, “Is your child showing that she doesn’t want to eat?”, “Did she refuse to eat or not eat at all?”. I answered all her questions with a NO.
From there, she told me that I have to let go of my worries and fear and trust my child. She has her own pace and she will lead. Then the next session I was more confident about me and my child. I told the team I don’t want to look at the numbers anymore. Cause everytime I look at it I feel frustrated and worried. I rely so much on the numbers and I ended up upset and forcing my child to eat. Which is traumatizing and giving her an impression that it’s not fun and enjoyable to eat. The team was very pleased. We were all happy. They still monitor the numbers and our our progress but we are all seeing the outcome leading to positive results.
Final advice from parents who won the battle on Nasogastric Tube
Never doubt your child. Your child knows whenever he/she is ready. They have their own pace and they will lead. It may take quite a while but you will get the result that you are aiming for.
We will never tell to parents that don’t be upset or frustrated. Why? Because these feelings are real. They are valid because you feel unsure of what’s happening and what will happen. But you can’t live for it everyday. We must learn to let go of the feeling for today and go on again tomorrow for a fresh start.
You know your child. You know their capacity because you are with them everyday. Don’t be bothered if you are being shamed by other parents. Always remember what works for their child doesn’t neccesary means can work on yours. You have to figure out with your child what’s work best for you.
Lasty, we want you all to know that you are doing great. The professionals will guide you what’s the best they could advice but at the end of the day, it’s always your call whichever works on you.
Never lose hope. The only constant on this situation is HOPE. For as long as your child is growing healthy that’s the most important thing in this world.
We hope by sharing our tips based on our experience, it will help you on your weaning process. Thank you for reading up to here.
Jeni ❤️
