Wednesday, October 7, 2015

All About G-tubes

Does the word g-tube make you a little uneasy? Do you think it's a horrible thing? Well, this post is to educate you a little on how life goes when you use a g-tube. All four of my girls came home with a g-tube. When we were first approached about the girls getting a g-tube, I was very nervous. I didn't want to give up on the girls taking their bottles for all their nutrition, but after 3.5 - 4 months in the NICU, I was ready to get them home. So, they had surgery to have the tube placed. It took about a week for them to recover from the surgery, then they were ready to come home. The plan has always been to try to get them to take their bottle and use the g-tubes as backup. Since the day the girls have come home, it has been an up and down process (and very, very, very frustrating) to get them to take their bottles. But, it's a battle worth fighting and they have made great strides over the past couple of months. I'm very hopeful that some, if not most, of the girls will get their tubes out this coming spring.

What's a G-Tube?
Some kids have medical problems that prevent them from being able to take adequate nutrition by mouth. A gastrostomy tube (aka G-tube) is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's one of the ways doctors can make sure kids with trouble eating get the fluid and calories they need to grow. The part that stays in the stomach is referred to as a "g-button" as seen in a picture below.  The tube is connected to the button to give medicine and formula.

Why do our girls need a g-tube?
Our quints were born at 29 weeks 1 day, which mean, they were 11 weeks premature. The girls all had issues with the suck-swallow-breath technique, which is often related to prematurity. They also had issues with aspirating the milk into their lungs. Each girl has had several swallow studies to follow her progress. 

Mia also has a condition called subglottic stenosis, which is a fancy way of saying she has a narrow airway. Her narrow airway has also made taking her fluids by mouth an issue.

How long will the girls have their g-tube?
They will have their g-tube as long as they need it. The g-tubes will be taken out on an individual basis, so it depends on how each girl is doing. The soonest the g-tubes will be taken out is next spring. The GI doctor gave us two guidelines for taking the tubes out: 1) the baby has to go 6 months without using the tube, 2) the tube will not be pulled out during the winter months. They want to make sure the girls are not going to digress and need the tube once it's taken out, so that's why we have to go 6 months without using it. And the reason for not taking them out during the winter is because that is typically when kids are the sickest. If any of the girls get sick and can't/won't eat, we have the tube as backup. Gracie hasn't used her tube in about 3 months, but because the winter months are upon us, she won't get her tube taken out until spring.

Here's a rundown on how each girl is doing:
Mia - Is getting all her liquids from the tube. She is starting to drink a little from a straw, so I'm hopeful that she's going to start taking some of her feeds by mouth.

Tessa- About a month ago I stopped giving Tessa her feeds through the tube and I am making her take her bottles. And guess what??? It's working!!! So she's taking all her feeds by mouth now. I'm so proud of Tessa. At her last weigh in she hadn't gained as much weight as she should have so we give her some milk at night through the tube to make up for those lost calories she didn't take by bottle but overall, she's doing great!

Gracie- About 3 months ago, Gracie finally had her "lightbulb" go off and she started taking all the bottles, she doesn't use her g-tube anymore. She's our little rockstar!

Rayleigh- She is still getting all her liquids through the tube. She is drinking from a sippy cup but not consistently and she'll only take around 30-50 mL. But she is making positive progress and I'm so proud of her. She's getting there slowly but surely.

All of the girls are eating table foods by mouth, Gracie and Tessa do the best with foods but thankfully they are making progress in that department!

The girls (and Brant too) like to pull on their tubes. Sometimes, they'll pull so hard that the tube will come out. This is the little hole in their tummy. We have to put the tube back in when it comes out. It's an uncomfortable process and breaks my heart to see the girls crying in pain, but they have to have the tube. Thankfully the tubes don't come out very often.

Eventually when the tubes come out permanently, the hole will close up and there will be a tiny little scar to remind the girls of how far they've come.  :)

This is what the g-button looks like. The balloon part is in the tummy to keep the tube in place (you inflate the balloon after it is inserted into the tummy). 
This is what the button looks like when it's not being used. It's really not too noticeable under clothes. 
This is what the button looks like when the girls are hooked up and getting their milk.
The pump.
It took a few days to get the hang of the pump, but it's super easy now. I'm so thankful to our wonderful NICU nurse, Lindsay, for teaching me the ins & outs of the pump. I was scared to death when I took our first baby home, but she was a great teacher.
The bag (of milk) and pump.
And when we travel, we have a backpack (hanging on the pole) and we put  the pump and bag in the backpack and go.
Our girls have come a long ways in 18 months. I'm so proud of their progress. This journey has been a struggle and at times very frustrating, but I know we are going to eventually get there. Our GI specialist told us we're not running a marathon, we're running a triathlon, which means, this is going to be a long process. But God is good and I know He's in control of this situation and there will come a day when we finally cross the finish line and say good-bye to the tubes once and for all.

So please keep our girls in your prayers. Pray that they will start taking their feeds by mouth. And pray for Steven and I as we try to be patient through this process.


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