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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…
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.
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.
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
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.
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.
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 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?