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First of all, what is a “tubie mom”? Well, in order to learn that we need to define what a “tubie” is. A tubie is a child who is fed through a feeding tube.
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 the stomach, but runs to the stomach and intestines.
Elizabeth had an NJ tube first but she still vomited with it, so they did a fundoplication and at the same time surgically placed a G-tube into her stomach. Depending on the 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 worried about right now.
Being a tubie mom is way different than I thought
Life is very different trying to feed my daughter through a tube. We had to learn several different ways to do this while in the hospital. Now at home, the feeding pump feels almost like 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 seems so cold and calculated, but also very convenient.
When we arrived home after having the G-tube placed, we were told to feed Elizabeth through bolus feedings. This is done with a 60 ml syringe. We pour the formula slowly into the syringe, and it drips through her tube into her stomach. We can make it faster by lifting the syringe up, and slower by moving it down.
Life as a Tubie mom: Feeding Changes
Then she was hospitalized at the Children’s Hospital of Atlanta. The doctors in Atlanta wanted her fed through a feeding pump, which pushes the formula through the tube at the rate you set it. The rate is different for each child depending on what they may need.
At home, Elizabeth is fed every three hours via the pump. The amount that goes through is the same amount she would be fed through a bottle, the only difference is it goes through her tube much slower.
The slower the rate, the better it feels on her stomach, which prevents nausea and retching. She has to eat every three hours and with the slower rate of the pump, it takes one hour for her to get one bottle’s worth.
During the night, Elizabeth receives continuous tube feeds. This means she is slowly getting fed for 12 hours each night. The pump is set to continue pushing the food in slowly through the stomach.
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 it, so we are backing off 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 IV pole 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.
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 gets 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 too hard to transition to that.
Life of a tubie Mom: Things for our family to know
Childcare is 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. Tube feeding schedules aren't flexible, and many children have added medical equipment for other conditions that also require special training. Not everyone has family willing to learn." - Feeding Tube Awareness Foundation
I have to say a big, loud, “Amen!” to the above statement. It’s hard enough to find someone to watch my autistic son, but when it comes to my daughter, it’s an even more difficult situation! For her, I need someone who knows how to use her feeding pump and apnea monitor, plus someone who knows how to do infant CPR.
We don’t have family that lives nearby since we are a military family, but my sister-in-law is currently living with us to help and is trained in all of the equipment.
It’s also hard to put my daughter in the church nursery since the nursery workers aren’t trained in how to feed Elizabeth through a pump. There is one lady who learned and we are so thankful to be able to put Elizabeth in the nursery with her occasionally. It’s still hard to leave my daughter there knowing all of her medical conditions.
Planning in Advance
"We need to arrange childcare or for our spuse to be home so someone can take care of our tubie. We need to make sure that whatever is needed (clean medical supplies, formula, medications) are all set up. 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." - Feeding Tube Awareness Foundation
This one has been a 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 our entire trip, and her backpack with her feeding pump and supplies.
She also needs extra tube supplies, syringes to flush the tube in case it gets clogged, and many more items. 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 things.
We are Tired
"There are a lot of things that keep tubie parents up at night. There is no such thing as letting a tubie cry it out. The vast majority of our kids have reflux and crying can quickly 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. The child could be in distress, they could be tangled in their tubing, or their bed could be soaked because the feeding tube port popped open and the formula leaked. Also, monitors or feeding pumps tend to beep a lot. Add on other respiratory or sleep apnea issues and you are looking at a mom who is extremely overtired" - Feeding Tube Awareness Foundation
Again, this has been hard for us. We sleep-trained my son, but that has not been possible with my daughter. 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 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.
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.
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.
I have to say this applies to my son as well. Both kids have feeding disorders and trust me we have tried everything.
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?
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.
Please Do Not:
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.
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.
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?