One of Emmett’s most visible differences is his g-tube (gastrostomy tube). Most everyone who has spent any time with Emmett has probably seen the tube that sticks out of his onesies. It’s how he eats. We’re comfortable with the g-tube now, but that’s a far cry from how we felt when they first told us he needed one. I wanted to talk about that experience because, while it’s a common procedure, it’s a rough one emotionally and can feel SO daunting in the beginning.
When Emmett was hospitalized last November, he went through periods where he couldn’t eat. At first it was because he was so lethargic he didn’t have the energy; later in the hospitalization it was because he was intubated. During those periods, they used a NG tube (a tube that goes through his nose into his stomach) to feed him.
Around the time we were supposed to be discharged, the doctors decided to order a “swallow study” to make sure he wasn’t aspirating on milk (which is when liquid goes down the wrong path into the lungs). Normally, people would have some sort of automatic protection reflex when they aspirate, like coughing. But in cases with silent aspiration, it’s possible for them to not react and just start building up fluid in their lungs, which leads to infections and possibly pneumonia. Emmett ended up having silent aspiration. (We ended up doing the swallow study twice because the first time, an absolutely awful woman conducted it and we weren’t confident with the results. We knew that if we made a decision based on that first test, we would’ve had regrets, so demanded a second.)
Even though it would’ve been unsafe to continue feeding Emmett by mouth, the decision to get a g-tube was still a difficult one that we struggled with. Up until then, eating was the one thing he could do, the one thing he seemed to really enjoy. Even though we battled with severe reflux and with low weight gain, we liked feeding him and liked the connection that gave us with him, because honestly, there was little else he responded to at the time. So we asked a million questions about alternatives until we came to terms with the fact that he would need to have surgery and get a g-tube placed.
After he was taken to surgery, Steve and I walked around Westwood and had breakfast, waiting anxiously for a phone call to tell us when he was out of the OR. (Emmett was also having an inguinal hernia repaired and a fundoplication done at the same time, and the entire surgery was expected to take 3-4 hours.) We walked to Ackerman to buy a couple onesies for him, and bought a bear that we nicknamed G-Bear. The surgery ended up being successful with no complications, thanks to Dr. Shew’s expertise, and he healed well over the next few days.
We stayed at the hospital for about five days after the surgery, and spent that time learning how to use a feeding pump, the difference between bolus and continuous feeds, and all the fun stuff that comes with feeding your baby via a tube.
The decision we made back in December to get Emmett a g-tube wasn’t easy, but it was necessary. If you’re facing this decision, there are a few things I’d say:
- Make sure you understand and feel comfortable with your doctors and other health professionals, and with the process for how things get decided. It goes a long way towards helping you accept the recommendation. As I mentioned, we were not comfortable with the first test because the specialist conducting it was rude, dismissive and condescending. So we refused the g-tube until we were able to get another swallow study. I would have felt incredibly uneasy deciding on a g-tube without that second test, however much they told us the results were accurate, and I encourage all parents to make sure you are comfortable with how things are being done. After the second test was done with our input and with the proper explanations, we felt comfortable making a decision.
- You’ll get used to feeding your baby through a g-tube and it shouldn’t prohibit you living your lives. It just takes a little planning… if you’re traveling, make sure you have all the “equipment” you need – bags, chargers, extensions, an emergency button, etc. When we leave the house for a few hours, we just pack up his little g-tube backpack, calculate how much formula we need, hang it on his stroller, and go. If we’re going to be somewhere longer than 2-3 hours, I’ll usually bring an extra feeding bag, extension (the tube that gets connected to his “button”), and maybe even an extra g-tube in case something happens.
- It IS scary at first. It’s common to accidentally “feed the bed” (forget to unclamp the line so it spills all over) or put in the wrong rate so your baby gets the wrong amount… it’s all part of the learning curve. But you’ll amaze yourself with what you can adapt to. This is probably something most special needs parents already know, because as difficult as these things are, you put one foot in front of the other and learn what you need to.
If it’s the right thing for your baby (and sometimes it isn’t), ask whatever questions you need, take the time you need to get used to the idea. Reach out to other parents who have gone through the surgery… for example, the parents on the g-tube group on Facebook are always happy to share their experiences and answer any questions.
We’re still doing periodic swallow studies to see if he is still aspirating. He didn’t pass the last one, but did show signs of improvement. So we’re hoping as his neck muscles get stronger, he’ll be able better coordinate this suck/swallow reflexes. We are starting the ketogenic diet this week which the g-tube is useful for, so at least in the short-term, it looks like we’ll need to continue using it. But I CANNOT wait for a time when we can feed him different foods and see his reactions! 😊