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What it’s Like to be a Mom to a Tubie

Note: I may earn money or products from the companies, products, or links mentioned in this post.

First of all, what is a “tubie”? A “tubie” is a child who is fed through a feeding tube. And there are several different types of feeding tubes that a tubie could have:

  • NG tube – Runs from nose to stomach.
  • NJ tube – Runs from nose to intestines.
  • G-tube – Surgically placed in the stomach.
  • GJ tube – Placed in stomach, but runs to the intestines.

Elizabeth was on an NJ tube first, but was still vomiting with it, so they did a fundoplication and also surgically placed a G-tube into her stomach. Depending on results from the new specialist we are trying to see, she may have to switch to a GJ tube. But that’s not something I am worrying about right now…

tubie

Life is very different trying to feed my daughter through a tube. We had to learn several different ways when we were at the hospital, and now the feeding pump has almost become second nature. The thing that hurts the most is not being able to cuddle and feed her from a bottle. Sometimes we are able to give her small one ounce bottles, but for the most part she is fed through a tube, which at times seems so cold and calculated and other times can be very convenient.

When we first arrived home after having the G-tube placed, we were told to feed Elizabeth through bolus feedings. This is done with a very large syringe. We would pour the formula slowly into the syringe, and it would drip through her tube into the stomach. We could make it go faster by lifting the syringe up, and make it go slower by moving the syringe down.

bolus feeding
Elizabeth getting a bolus feeding through a syringe.

After we went to the hospital in Atlanta, her feedings were changed back to pump feedings which pumps the formula through the tube at different and varying rates depending on what she needs.

Elizabeth gets fed every three hours via pump the same amount she would through a bottle. The only difference is, the amount that goes through her tube is slower so that she does not retch (dry heave). It takes an hour to feed her every three hours and she is connected to her pump the entire feeding.

At night, Elizabeth is on continuous feeds, which means that she is being fed continuously throughout the night usually about twelve hours total. Because it is continuous, the rate at which the pump feeds her is much slower than during the day. Again, she gets the same amount she would if she were taking bottles throughout the night, just through a pump and at a different rate. In the end it equals about the same amount.

Occasionally, Elizabeth can have a bottle by mouth. Right now it’s only during the day, and it’s only depending on how much retching she has done. She has tried some very tiny trials of rice cereal, but did not do very well with them, so we are backing off that for now.

All of Elizabeth’s feeding supplies (pump, tube, etc) can be packed into a backpack. This backpack is hung up on a metal stand at home so that people don’t trip over it while she is eating. When we go out of the house, the backpack goes with us. We hang it in the car if she is eating, or take it with us and wear it like a backpack if we are out and about.

Tubie
Elizabeth’s feeding pole, and feeding backpack.

The thing we have to be careful about most is making sure Elizabeth does not pull on or pull out her tube. It’s very easy for her to grab, so we are very aware to make sure she does not play with it. We also have to be careful about stepping on it, it getting caught, or us accidentally pulling it out ourselves.

At the hospital Elizabeth’s entire G-tube came out of her stomach twice. The first time the neurologist was examining her. Not sure what happened, but the next thing I knew it was on the floor. The second time (also at the hospital) it came out as I was lifting her up to put her to bed. It either got caught on something or I stepped on it. Not sure which, but again the entire thing came out. I felt awful that I did that to my daughter, but thankfully she won’t remember since she is so young. We constantly have to  make sure it is not tangled or caught on something. We have to be very very careful.

Another thing we did not think of at first is clothing. Elizabeth has to wear clothing that is easy to thread her tube through. This means nothing with zippers and clothes with lots of snaps. Thankfully it hasn’t been to hard to transition to that.

 

About Tubies and Their Families, For Family and Friends:

Info from www.feedingtubeawareness.com

 
Getting child care for a tube fed child is very difficult
It is not an option to get a babysitter off the street. Many of us spent time in the hospital learning how to care for our tube fed child at home. There is medical equipment that needs to be learned. Feeding schedules hold little flexibility, so start times are often important. Moreover, a number of our children have added equipment for respiratory issues (or other conditions) that require additional training. Even those of us with family nearby may not have family members who are willing or able to learn. We would welcome the support because we all need a break. It might be hard to believe, but quite a few tubie daddies do not even know how to do everything.

I have to say a big, loud, “Amen!” to this. It is hard enough trying to find someone to watch my autistic son, but when it comes to Elizabeth, her situation needs someone trained in her feeding pump, apnea monitor and also have infant CPR training. We don’t have family around since we are a military family, but my sister-in-law is now living with us to help and is trained in all of the above. It is also hard for church since nursery workers aren’t trained in how to feed Elizabeth through a pump. We do have one lady who has learned and we are able to put Elizabeth in nursery with her occasionally, but it still is hard to leave her knowing all of her medical conditions.

 
If we are going out we need to plan in advance
We need to arrange childcare or for the other parent to be home so that someone can take care of our tubie. Moreover, we need to make sure that whatever is needed (clean medical supplies, formula, medications) are all set up. All that said, we do like to see friends and go out. We appreciate being asked. Don’t assume we will not go. Like any parent, we might have things that come up that require us to change plans.
This one has been a really really tough adjustment for us. Since my son is autistic, he is in over fifteen hours of therapy a week. Thankfully we have my sister-in-law to help at times, but there are other times my husband has to come home and help too. Going out is a huge process. I have to make sure I have everything for Elizabeth. This includes enough mixed, high calorie formula to last however long we will be gone, her entire backpack full of pump and supplies. Extra tube supplies, syringes to flush the tube incase it gets clogged, and much much more. On top of that, since my son has a feeding disorder, we can’t leave to go anywhere without packing his own food since he will only eat a few foods.
 
We are tired
There are a lot of things that keep tubie parents up at night. There really isn’t such a thing as letting a tubie cry it out. The vast majority of our kids have reflux and crying quickly can lead to vomiting. Kids with reflux aren’t always the best sleepers. Some vomit in the middle of the night. Parents may have to investigate every noise. It could mean our child is in distress, it could mean they are caught up in their tubing, it could mean that their bed is soaked because the feeding tube med port popped open and formula has been flowing into the bed. Moreover, monitors or feeding pumps can and do beep. Add on other respiratory or sleep apnea issues and you are looking at a mom who is wondering when the last time she had enough consecutive sleep to dream.
Again, this has been hard for us. We sleep trained my son, but that has not been possible with Elizabeth. She has an awful time sleeping, and we still aren’t sure why. Even giving her melatonin does not always help. Also, I can’t tell you how many times Elizabeth’s tube has come apart and soaked her, her swaddle and clothes, and the bed. The pump does not alarm if it comes apart, so it still “feeds” until she cries from being wet and cold. Sadly, we have no other way of knowing. It’s one of the most frustrating things. As far as the beeping… I have spent countless nights trying to figure out why her feeding pump was alarming in the middle of the night. Not to mention we also have to listen to the apnea monitor alarm as well.
 
We can also be emotionally drained
It is hard to see tubes coming out of your child day in and day out. It is a constant reminder they are not like other kids. Some tubie kids are undiagnosed. They have a list of conditions, but docs are still looking for the overarching diagnosis. This is very hard on parents. Moreover, kids may be going through a lot of testing, including testing for things that are life threatening. Families may not realize how stressed tubie parents are. Even with a diagnosis, there can be worry about what the future holds. Moreover, after having a child where a new condition appears every few months, you can feel like you have post traumatic stress…you are just waiting for something else to go wrong.

We already go through this with Adam. Even though he looks like other kids he is different, and the same will go for Elizabeth. Right now we still don’t have a diagnosis, but I am still pushing for one. Right now we are waiting on a referral for a pediatric neurogastroenterology and motility program in Atlanta. There will be a lot more testing and there already several possible surgeries on the horizon depending on her situation. Let’s just say the stress of having two special needs children is very great.

Our level of empathy may have changed
We understand that it is difficult to for you to have a kid who has an ear infection or an infant who needs shots. But, we may not feel the same level of empathy as other parents. We have seen things parents shouldn’t have to see. Many of us shouldn’t have seen our kids intubated and connected to so many wires you aren’t sure how to pick them up (if you are allowed to pick them up). We have exposed our kids to anesthesia, barium, x-rays and prescription medications, often from very early ages. We have had to hand our kids over to surgeons.
I have to say this is very true. It’s hard for me (especially on Facebook) to see people complain about little things with their kids when I have been through so much with both of mine. But on the other hand, I tend to have a lot of compassion as well. I know what it’s like to have a child go through: surgery, be in the hospital for dehydration, have feeding problems, be in therapy multiple times a week, go through so much testing, and much much more. I can relate to parents going through any of  the above and always am willing to help, whether it be with advice or just an ear to listen and understand.
We don’t expect sympathy or necessarily want sympathy from you
We love when when people get that this is hard and acknowledge what we do for our kids. The vast majority of us feel like any parent would step up and do the same thing if their child had medical issues. We don’t particularly feel that we were chosen for this based on super special abilities. Everyone can do this, but thankfully most people do not have to. Rather than telling us how bad you feel for our child or for us, try to focus on an accomplishment or acknowledge the challenge. It is great that [Child] is handling this so well. Or I know it must be hard on you [Parent], but you are doing a good job.
Let me tell you there are plenty of days I don’t want to do this. There are days I am so overwhelmed I feel like I can’t do another day as a mom to two special needs kids, but I do. I get the “I don’t know how you do it” saying a lot. I don’t know how I do it either, but I do. I think most parents would do the same, they just haven’t had to.
It may seem silly to you, but it might be cause for celebration for us if our kids eat even a small amount
A tablespoon can be a reason to jump for joy. A successful new food may prompt a facebook post. We celebrate these little victories because it gives us hope that one day our child might be able to eat and not have to rely on the tube.
 
A lot of tube fed children eat and drink some, but not enough to grow and develop
Just because you see my child have a bite or two of something, doesn’t mean they can eat or drink enough to sustain themselves and grow. And, a tubie child may turn his head away from the cookie you think he is going to eat. “All kids like cookies!” may not exactly apply here. It takes a lot of work to overcome feeding issues. It isn’t that we haven’t stumbled upon that favorite food our kids want to eat. Believe me, we have tried everything. Also, there are a lot of medical reasons why kiddos can’t eat. Those don’t often go away overnight.
I have to say this applies to my son as well. Both kids have feeding disorders and trust me we have tried everything.
 
Some of our kids are on SSI, Medicaid or Medicaid Waivers. Many children on feeding tubes are entitled to certain services. Please don’t think we are milking the system or are lazy. 
Some tubie parents qualify for WIC, too. Specialized formulas can be incredibly expensive. Moreover, some insurance plans do not cover them and current legislation does not require it in many states. Medical formula can cost upwards of $1000 a month or more to feed a preschooler. On top of that there are copays for doctors, ER visits/hospital stays and other medical supplies. Some medical supplies aren’t covered by insurance at all. Moreover, many tubie families have to have at least one parent home. There are few jobs that have the needed flexibility that is often needed when a child has feeding issues or other medical complexities. So, money can be tight.

We have definitely felt this one. We have been on WIC for awhile. It was a big help with my son, and to help a little with groceries, but now it helps a lot more. Elizabeth was unable to gain enough weight to stay healthy. She is now on Simulac Alumentum – (roughly $30.00 a can) at a high calorie intake diet. WIC pays for all of it. I have no idea what we would do if they didn’t, and so I am thankful. After spending two weeks at the hospital in Atlanta, we found out that while Elizabeth’s medical bill would be covered, the expenses incurred while there (hotel, food, and gas for two weeks) would not. A blog friend made a fundraiser to help us, and that has been a HUGE blessing. I also get told a lot that we must be rich since I am a stay-at-home mom. This frustrates me because that is not true in the least. I am a stay-at-home mom first because I want to be. We sacrifice and have a small budget so that I can stay home. Second, I stay at home because there is no other option. Now that my kids are in so much therapy and see so many specialists, there is no way I could work outside of the home. Who would take care of my kids and take them to all their appointments?

Many of us have encountered negativity, inappropriate comments and a lot of staring from strangers. Understand, we may be sensitive. Please think about what you say to us. 
People always think kids are cruel, but often children are the most understanding. They ask questions and we are very often happy to explain. Children accept and move on. It is adults that are usually cruel. We have been told to feed our kids in bathrooms or not feed them at all, because it may make others uncomfortable. We may have asked what is wrong with them or shouldn’t they be in the hospital in unkind ways. People think we cruel for making small children wear backpacks or that we have them on a leash if we carry their backpack for them. We could go on and on. Just remember we are talking about how our kids get their nutrition and hydration.
 While I have encountered some frustrating things when it comes to my son’s autism, I have not yet encountered anything yet toward my daughter. However, I know that as she gets older it will come. Until then, I take it one day at a time and pray for patience and kindness.
And most importantly, to keep our kids nourished, it is all worth it. 
Thank you. 

 

 Please Do Not:

Feed any child something without the parents’ permission. This is even more true for children with feeding tubes. They may not know how to swallow correctly. There may be certain foods that are restricted from thir diet. They may not be able to tolerate food textures and may gag or vomit. They may have severe food allergies. PLEASE UNDERSTAND, WE WANT OUR CHILDREN TO EAT. WE WANT THEM TO EAT SAFELY. If trained professionals and specialists have not gotten our children to eat, you will not be able to during the family gathering. 
YES! Please do not ask if my child may try such-and-such or try to force-feed them. This goes to for both my kids as both of them have feeding disorders and both of them have their own restrictions.
 
Ask me when my child is coming off the tube! 
The real answer is that a lot of tubie parents do not know. Trust me, we are all anxious for it, too. But, sometimes situations are complex. This also applies to other medical equipment or developmental delays our children may have.

This is the question I get asked the most, and while I don’t mind it so much, it is the most frustrating to answer because we just do not know. The surgeon has told us that Elizabeth has to be completely off the tube (no feedings, no meds, nothing via tube) for three months before they will surgically remove the G-tube. That being said, it’s going to be a while. We also do not know the full extent of her medical issues and are still searching for answers. As answers come, questions such as how long she will be on the tube, will change.

Remind me of the “what ifs” 

Like any parents, sometimes we wonder if an outcome would be different if we had done something different along the way. That said, like most people, we would prefer not to be reminded of these.

Thoughts? What questions do you have for me as a mom to a tubie?

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20 Comments

  1. Kathryn – Thank you for sharing this with us. Praying for you and your family — for strength, patience, health and answers. Much love to you!!!

  2. As a preemie mom I can empathize with you! I have had struggles in the past with my own child from looking at him in the NICU.

    I also have a few friend with children on the NG tube. As a mother I have given up a long time ago playing mommy wars. I think you have to do what you have to do to survive every day and do what is best for YOUR child. Because I am not your child’s mother I could never assume to know what is best for them just like you wouldn’t know what is best for mine.

    I think and believe you are doing the best you can do and that’s all you can do. I hope that she can come off the NJ tube soon. And if she doesn’t then that is okay in time she will. <3

  3. Hi from a fellow tubie mom in Atlanta!! My son has had his g-tube for over four years now. I completely relate to your post and have written some very similar on my blog. Want to share one of our favorite products (I do not receive any compensation – just sharing from one mom to another) to help with the med port not coming open – http://patchworkpeddler.com/port-pods/ They also have a g-tube belt and cute, absorbent pads that go around the tube. Hope this helps!

    1. Hi Laura!
      SO nice to meet another tubie mom, especially one in Georgia. We are in Warner Robins, Georgia about two hours from Atlanta. Just checked out the link, you are a life saver! We have been wondering how to fix the port so it doesn’t come apart all the time. I’m so excited!!

      1. I am not exactly sure what the g-tube belt is. I believe it is relatively new. Now that Joseph is four, we don’t have to worry about him pulling it out (although it does come out from time to time). When he was little, we always kept him in a onesie/something with snaps – anything to keep him from being able to touch it.

        Would love to meet you when you are in the Atlanta area. I have only ever met one tubie mom before!

  4. Finally got to read this all the way through! It was fantastic!! You should definitely share it with the Feeding Tube Awareness group. They have been a life-saver for us! I actually printed out the “For Family and Friends” section and mailed it to all of our immediate family. Great job Mama!

  5. As a critical care nurse, I read and understand your perspective, and I whole-heartedly empathize with you. I feel like people really underestimate the amount of work that goes into caring for someone with medical needs. And now as a first time mom, I admire your strength and determination in caring for your children with special needs. The love and care you provide your children matters and it will make all the difference indefinitely.

  6. Amen. My heart goes out to you. My daughter has been a tubie since she was born @ 30 weeks old. She is now 2 yrs old. She is currently using a GJ tube. There is nothing normal about any of this. I don’t remember the last time I slept more then 2 hours a night. The constant doctor visits, therapies, surgeries, etc. Sometimes just waiting for the sun to rise can be agony. I have felt alone in all of this since day 1. I am trying to take a mini vacation in two weeks and need someone who is qualified to come to my house long enough to hook up my kiddos tube feeding and give her meds for four days. I completely get how you feel. This is no way for anyone to live. None of it is easy. I sincerely hope it gets easier for you. Blessings, Mary

    1. Mary,
      Thank you so much for stopping by and commenting. It sounds like you are all too familiar with all of this and I’m sorry that you have to be. I hope that you find someone to watch her so you can get away. I believe its so important for the caregivers to get a break. I hope it gets easier for you as well. God bless!

  7. Thank you for this article! We know exactly how all of this feels. We are a military family with 2 SN kids. My youngest has a tube and my oldest has ADHD, SPD, delays etc and is in feeding therapy. Plus I’m an EFM as well. Managing everything can be tough especially with all the cut backs lately.

    1. Wow! I feel like we are almost the same family! My son has autism, SPD, Apraxia of speech, and feeding disorder and I am in EFMP too! It is hard, but so nice to know I’m not alone. Good luck in your journey!

  8. Thanks for sharing this! Much of it resonated with me, as a mother of a special needs child. My heart goes out to you for caring for two. Sounds like you do an amazing job, thank you for loving on those sweet babies! It really encourages me to see wonderful Moms out there who go to endless lengths for their children. Press on!

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