|Baggy clothes on my little guy|
In the Spring of 2010, Thomas was diagnosed with failure to thrive. This was a heartbreaking diagnosis for me. I felt like it was a personal failure on my part. At that time, Tom was refusing to eat from a bottle and would not eat from a spoon at all. He would have good eating days and bad eating days, but more bad days than good. He was hospitalized several times that Spring and Summer for dehydration because he just refused to eat or drink. I would spend hours a day trying to get him to eat and only get two ounces in him sometimes. The situation was desperate; I was taking syringes and squirting liquid down his throat to keep him hydrated.
|He was not on the growth chart at all for weight.|
|Baggy onesie pre-tube|
|At home with his NG tube.|
Getting the Tube
It is pretty simple. Tom came home with a feeding pump that would allow you to pump the liquid formula into the g-tube by set amounts of time. After the G-tube is surgically inserted in the hospital you stay a couple of days to make sure it is functioning correctly and to allow you to learn how to run the pump. The nurses teach you how to do everything so that you will be prepared to take over once you get home.
The day we were discharged from the hospital a pump and all the feeding supplies were delivered to our home. A nurse was also sent to our home to get the pump up and running, and to make sure we were set up and ready to do the feeds ourself. The pump you use in the hospital is quite large and you will likely have a smaller pump that is a bit different for home use. It will be on a huge IV pole that will be constantly in the way though! But the process is fairly straightforward. You "prime the tubing" by running the formula through to the end of the tubing so you are putting only formula and not pushing a bunch of air into your child's belly.
|My chunky little tubie last summer.|
So I called our pediatrician in a panic and told her the night feeds weren't working for us. She said as long as we get the required ounces of formula into him it didn't matter. Music to my ears! So we did several 60 minute feeds a day and into the night. He handled the feeds so well ( i.e., he didn't throw up) that we kept increasing the speed of the feeds by decreasing the amount of time it took to pump the same amount of formula. Eventually, we got down to pumping seven ounces in twenty minutes.
Months later, a nurse in post-op from one of Tom's many EUA's told us that if he could tolerate a feed that quickly he could probably switch to a bolus feed. This nurse was also the mother of a tubie and showed us how easy it was to do a bolus feed.
How does a bolus feed work?
|With music and small toys around he is usually very cooperative.|
That's it folks! All you need is a bolus (The large syringe looking thing), a y connector (the tubing), and a syringe to flush the tube clean. Tom still takes seven ounces of food and one ounce of flush. We use green tea to flush his tube clean after a feeding. Besides the many common benefits of green tea, I also read a study that said it can reduce oxidative stress in the eye. Then why not? I brew up some green tea for Tom every morning.
|Our set up|
I make sure I have all my supplies and some small toys to occupy Tom's busy hands for the time it takes to complete the feed. It's less than a ten minute affair but that can feel like years to a little one. We also listen to relaxing music. It's a good idea to create a feeding playlist so a favorite song doesn't come on and cause your child to pop up in excitement and spill formula everywhere. (True story) Small toys are essential! You don't want your child waving a big toy in the air because it WILL hit the bolus and spill formula everywhere.
|Flushing the tube with green tea|
Benefits of a G-tube
I had a great nutritionist when Tom got his G-tube who really encouraged me to do things a little differently than most. She thought the green tea was a great idea and suggested I give him coconut water for it's superior hydration qualities. That tip has been so helpful when Tommy has been sick. I learned so much about nutrition from her. I have always been a believer in fish oil and Tom has had it since day one. I supplemented throughout my pregnancy with fish oil and while I was breastfeeding. Tom continues to get fish oil now. We used to buy a liquid fish oil supplement from a chain nutrition store but it was really funky stuff. Our nutritionist told us about Nordic Naturals fish oil which is completely clear and smells like strawberries! Awesome stuff.
One of the benefits of a g-tube is knowing that all medicine is taken in the correct amount. They can't spit it out if you put it right into their stomach! I can also blender up some healthy vegetables and yogurt and push it through his tube with a syringe. I use a one ounce syringe to suck up whatever healthy concoction I made in my blender and shoot it through his tube. It has given him the experience of feeling real food in his stomach instead of just formula and allowed us to see how his body reacts to foods. His experience has been great so far. He still eats mostly formula but he does get real food in his tube daily. I love to be able to feed him ridiculously healthy food.
The tube itself must be changed every three months and that is something that parents must do themselves. The first time I saw it done I was a sweaty mess and I didn't even do anything. The first time I changed Tom's tube myself I think I lost a year of my life from the stress. But a g-tube change is a quick and straightforward procedure.
The first couple times I happened to schedule a visit to the general surgeon's office for a g-tube check every time his tube needed a change. Hmmm, coincidence? No, I was a scaredy cat. When the tube is removed all you have is a hole (stoma) in your child's belly and if you can't get the tube back in you have to go to the hospital for help. Usually fluid comes out of the hole and the child is crying during the whole event. Crying causes the child to tense up which makes it harder to get the tube back in the stoma. But, if you are quick and use special surgical lubricant on the tube you can change a tube in less than three minutes. It takes me longer to set up the supplies and work up my nerve than it does to actually change the tube. If I can get someone to take pics of the next g-tube change I'll post a more in-depth explanation of that process.
The g-tube site must be cleaned daily with soap and water. A good soak in the bathtub usually removes any crusty build up that can accumulate around the tube. Tom doesn't get a lot of leakage but he does get some. Doctors usually prescribe a steroid cream to help with any discomfort around the stoma and that has always helped Tom. He has had some granulation tissue (tissue that tries to grow around the stoma site) but it hasn't ever been too bad. They usually use silver nitrate to burn off the granulation tissue in the doctor's office (general surgeon not pediatrician).
So that's what it's like when your child has a feeding tube. We can do a feeding in less than ten minutes and Thomas handles his feeds like a champ. Using the pump was a lot of work and we find bolus feed to be much easier and quicker. We are very lucky that Tom can handle bolus feeds because some children can't handle food that quickly and will just throw up. The G-tube was nothing we wanted but it really was the best thing for Thomas. I saw huge gains in his abilities and energy level once he was getting adequate nutrition.
|I love my tubie!|
Let me know if you have any questions by leaving me a comment.