Hellobee

Before D, I had never given a thought to feeding tubes, and most of my exposure was sensational – like, hearing about prisoners being force-fed during a hunger strike. I had a tour of the NICU when I was in the hospital before D was born, which was my first exposure to feeding tubes on anyone (specifically nasal-gastric or NG tubes). D had his NG tube placed on his first day of life – it started out going through his mouth, and later they switched it to his nose – both of which just went down the back of his throat to his tummy.

10 days old

Most infants will either get breastmilk or formula through their feeding tube, and some families choose to switch to a diet of blended food when their LO is bigger. The formula is either put in the tube through a syringe, or using a pump to give the dose at a slower rate. Often, babies/kids on feeding tubes need to eat at a slower rate to better tolerate the food, and for a while D was “eating” 20 out of 24 hours every day – a “bottle” given over 5 hours, with a 1 hour break before the next one started.

When D failed his 2nd swallow study and it became clear that he would need to eat via a feeding tube for an extended period of time, we had two choices:

• Keep the NG tube
• Get a G (gastrostomy) tube surgically placed

Although our first inclination was “no surgery!!” after talking with our doctors we felt that the G tube was the best choice for D. He would need to use the tube for months (if not years – coming up on 1 now!), and the NG must be changed every week. The NG is also secured with tape on the face, which can be irritating to the skin and as you can imagine gets yanked on a lot. Also, if a feed is running (which for D at the time was 20/24 hours) the caregiver has to be awake and alert, since there’s the constant danger of the NG tube getting dislodged and dumping food into the lungs.

Because our NICU’s pediatric surgeon was on his honeymoon at the time, our docs suggested we get transferred to a different NICU so we could get it over with and start prepping to get him home after recovery. At the new NICU (where they checked him out so thoroughly it was like they found him in the woods instead of being brought via ambulance from one NICU to another!) the doctors also recommended he get a Nissen fundoplication, which is a surgical procedure to help minimize reflux. D wasn’t having huge reflux issues, but they warned that the G tube often makes reflux worse, so we eventually consented.

The last pic of D before the G tube – untouched tummy! The board on his arm is to keep him from messing with his IV – he also had an IV on his foot since they like to have two sites ready to go before surgery.

He tolerated the surgery well, although babies are “belly breathers” so he was on a ventilator and had to be weaned back off, since his tummy hurt and he had trouble taking deep enough breaths. He was also on morphine for a few days. We then transferred back to our original NICU where we got D on a tolerable feeding schedule before he was discharged.

2 months old (a few weeks after the surgery) 

 1 year old 

At home it took us a while to get into the groove of everything. When he was home the first time (and not mobile), we would put his pump and the food bag on his portable IV pole and bring it with us wherever we were in the house. When he came home the second time we wizened up, only used his IV pole when he was in his crib, and carried the pump in a backpack everywhere else in the house. Combining the backpack with babywearing was particularly efficient! I often took him to doctor’s appointments that way.

Just recently I got crafty and made him his own backpack! Now that he’s mobile it was very hard always running to move his backpack closer to him, and lots of worrying about K tripping over the wire.

In addition to the logistics we had to get used to the routine of setting up his feeds, giving meds through the tube, and taking care of the skin around the tube. Initially we mimicked the routine that the hospital used, which was warming up the milk before each feed. However, as I’m sure you all know, you’re really not supposed to leave breastmilk/formula just hanging out at room temperature for very long! This meant that I was constantly getting up during the night to top off his feeding tube bag with fresh milk, and inevitably sleeping through an alarm and waking up instead to his pump beeping because it ran out of food. I eventually discovered that he could care less about the temperature and so I just stuck an icepack in the bag and voila, no time limit! At the hospital they also used gauze to absorb leakage around the button, but I discovered reusable cloth button covers which were adorable and way more practical for us, since the gauze would sometimes get wound around the tube. Everyone at doctor’s offices comments on how cute these are (ours are from TryOurDesigns on etsy).

D’s cute button cover

We have middle-of-the-night mishaps more times than I care to admit, where a port or something gets disconnected and we “feed the bed” for several hours, only to wake up to a crying, soaking wet, hungry boy . This is inevitable and still happens occasionally, but we are more vigilant about checking for it, and I purchased better mattress protectors! There have also been some issues with his G tube getting yanked out accidentally – actually all four members of the household have done it once – no fun for anyone! The G tube is held in place by a balloon that is inflated on the inside of his tummy, so when it gets yanked out the balloon is forced through the small opening, which is super painful. I’ve gotten better (and calmer) at replacing it! D’s feeding schedule has changed a lot now that he can also have baby food, so he gets formula for 14 hours overnight, and a version of Pedialyte for 3 hours total during the day – lots more time unhooked!

We try not to let it stop us from having fun!

There are lots of downsides to the whole feeding tube situation, but one big, overwhelming positive. D’s G tube allows him to get the nutrients and calories he needs, regardless of his ability or eagerness to eat normally. He’s gone from being nowhere near his growth charts to 90% weight (unadjusted age!). As I mentioned my husband and I struggled a lot with accepting this path, but it was absolutely the best thing we could do for D. If any of you parents out there are struggling with this decision, I hope you see D’s story not in a negative light (he still needs it after a year) but in a positive light – he is thriving, thanks to the G tube.

Did you have to make some decisions regarding your LO’s care that you only came around to appreciate with time?