The G-Tube: A Christmas Story (This is a long one)
Stellan has never been a great eater, and we always assumed his slim figure was due to the fact that he’s half French and French people don’t get fat. I was also told numerous times that breastfed babies aren’t as chubby as formula-fed babies, and Stellan was strictly on breast milk for the first four months of his life.
When his weight started to plateau around month four however, we asked our pediatrician what we could do to help get him back on track. She suggested supplementing his diet with formula as well as introducing pureed food, both of which we did. We set up an additional growth check at 5 months, at which point he still hadn’t gained much weight and had actually started to fall below the bottom curve of the growth chart.
Her next thought was that perhaps Stellan suffered from “silent reflux,” meaning that he might suffer from reflux even if he never, ever spit up. We figured it couldn’t hurt to find out (and how awful if he did have that, poor guy) so she connected us with a GI specialist at Cornell.
As with everything medical in New York, getting that appointment took time and when we finally met with him on September 10th, we already had Stellan’s Pachygyria diagnosis. One of the most obvious ways Pachygyria manifests in Stellan is his low body tone, which is what makes it hard for him to develop gross motor skills like sitting and rolling. The doctor felt it could also be causing swallowing difficulties, and explained that swallowing, something we barely think about doing, is actually a very complicated physical action that requires a great deal of coordination – something that Stellan is still lacking.
In the weeks that followed, we met with a nutritionist who gave us a new plan for feeding Stellan (including upping the calories in each bottle by adjusting the ratio of formula to water and adding formula to breast milk) and a speech/feeding therapist who watched Stellan eat from a bottle and a spoon after we expressed concern over the fact that he coughed while eating.
She suggested we return for a Barium Swallow Study (completed in late September), which is basically a real-time video X-ray of the mouth and throat that allows the radiologist to see whether food is traveling into the airways rather than the esophagus. I gave Stellan liquids of three different viscosities to drink (none of which he enjoyed) – thin/milk viscosity, nectar viscosity, and honey viscosity – while the X-ray captured everything going in and which direction it went. It turned out Stellan was indeed aspirating (food was going into his lungs instead of his stomach) very badly on the thinnest liquid, and also on the nectar consistency. No wonder he didn’t like eating. We were lucky he had never developed pneumonia.
Armed with our new knowledge, the team developed a new plan for us. First rule, no more breast milk, because it cannot be thickened. If you have any breast milk sitting around, you can try it – add some baby cereal and stir – it will NOT get thicker. So the breast milk factory shut down when Stellan was 7 months old, which was bittersweet. I had hoped to keep going until his 1st birthday. But let’s just say I don’t miss my pump.
And formula would still be the high-calorie mixture (22 calories per ounce rather than 20 calories per ounce) but would also have baby cereal mixed into each bottle to make it thick enough that Stellan would feel it in his throat and know to swallow, rather than letting it go into his lungs. We could continue to give him pureed foods of all kinds, and after all the issues he had had with the bottle, he often preferred eating with a spoon anyway.
The GI, who had been suggesting either an NG (nasal-gastric) tube or a G-Tube (Gastrostomy – straight into the belly) from our first encounter, was willing to let us try this new feeding plan and continue to monitor his weight gain. And in the first month, he did gain! A whole pound! We were all ecstatic. Stellan in particular probably, since he was no longer choking on his food and was finally feeling full most of the time.
Unfortunately, that changed on October 22, Stellan’s 9 month birthday, when we took him in for a laryngoscopy and bronchoscopy. Our pediatrician and the GI had also recommended seeing an ENT to rule out any anatomical issues with Stellan’s throat that might be contributing to the swallowing issue. The only way to check whether Stellan’s throat was functioning properly to allow him to swallow was to sedate him and have a look with a camera. The good news – all normal. The bad news – the procedure really bothered his throat and he virtually refused to eat for several days, which happened to coincide with Hurricane Sandy, an already-stressful, crazy week.
We finally got feeding therapy set up soon after that (that’s another post altogether), and while Stellan did get back on track with his eating, he also decided around that time that he’d only eat properly for his nanny Molly and sometimes for Quentin. I wasn’t able to successfully feed him from a bottle for several weeks, which made our upcoming trip to San Diego for Christmas stressful before we even boarded the plane, especially since Quentin wouldn’t be joining us until several days later.
But board the plane we did, and I managed to get him to take a bottle during the flight, which was a good sign. And for the first few days in San Diego we did pretty well, too. He would fuss at first, but I’d eventually manage to get 4-5 ounces into him at a time. And we would fill out the calories (never in my life have I counted calories – it is so stressful!) with amazing homemade purees courtesy of my mom, which Stellan really seemed to enjoy. As we had done for months, we meticulously tracked every last ounce in a journal so we could ensure he was getting enough each day.
Unfortunately, the night Quentin arrived, Stellan came down with a bad cold – a horrible cough and a stuffy, runny nose. And next thing we knew, we were only getting 2 ounces into him at a time. Then sometimes one, or none. He should be getting at least 24 ounces a day simply to maintain his weight, let alone grow. It got to the point where we were struggling to get 10 or 12 ounces into him. And every time we tried to feed him, he’d fuss and get angry and refuse, and we’d spiral into sadness and stress, knowing how badly he needed the calories and nutrition, and desperately trying to give it to him.
So we finally decided to revisit intubation, which we’d tried to avoid for over three months. On Christmas Eve, Quentin and I found ourselves at Children’s Hospital in San Diego, speaking with a pediatric surgeon about our options. We’d heard from many parents and physicians that the NG tube, which goes in the nose and down the throat, is certainly less invasive (in that it doesn’t require surgery), but that it often irritates the child, causing a sore throat and general irritability. The G-Tube, while requiring relatively major, albeit routine, abdominal surgery, is less obtrusive and painful in the long run, and is usually the next step if parents and kids get fed up with the NG tube.
The doctor recommended going directly to the G-Tube and also suggested a procedure called a Nissen Fundoplication, in which the top of the stomach is wrapped around the esophagus to prevent reflux. Stellan has never had reflux and never spits up and, unlike the G-Tube procedure itself, the fundoplication is not reversible. Since it’s designed to prevent reflux, people who have it cannot burp or throw up. We weren’t convinced, but we also knew that it would be a shame to go through with this one surgery, only to have it not work properly because we didn’t do the other.
We decided that the best next step would be an Upper GI X-Ray on December 27th, which would give us a good picture of how Stellan’s Upper GI system works (hence the name) and would also give us a rough idea of whether he had any signs of reflux. That had been initially ruled out by the swallow study we did back in September, but it was great to have another look. In addition, the swallow study only shows from the mouth to the start of the esophagus, while the Upper GI study shows from the esophagus through the upper intestines, allowing us to understand if Stellan is anatomically normal (which he is – yay!) and if he shows any sign of reflux (which he doesn’t – double yay!)
Christmas Day was rough because Stellan again refused to eat much at all, despite his cold being on the way out. We continued to weigh the options, do lots of research (especially Quentin), and talk about it with my family, several of whom are in the medical field, at length. And on the day of the GI study, we were told we could go in for surgery the following morning, December 28, at 8am. By that point, we all agreed that the G-tube was the right next step, but we didn’t feel the fundoplication was necessary, since it would serve to prevent a risk that might never occur, rather than addressing and solving a problem that Stellan already had.
The night before the surgery, we all went out to dinner, and Stellan was wearing the most ridiculously cute little baseball outfit, which he had received as a Christmas gift. Several restaurant patrons – total strangers – approached us throughout dinner to tell us we have the cutest baby they’d ever seen. We tried to enjoy the compliments, but we were all worried about the next day. That evening Stellan decided to take a full 6-ounce bottle all at once, without a fuss. But a few hours later, when we tried to feed him one last meal before the fasting period began, he clamped his mouth shut yet again and we knew we were doing the right thing for him.
The morning of the surgery was stressful, as these things always are, but we were so relieved to be doing it in San Diego, with my family around for support, access to a car, good weather, during vacation, and at a hospital we know very well. Going through this in New York would’ve been so difficult – Stellan’s hospital is on the Upper East Side and we live in Brooklyn, it’s freezing cold right now, and I would’ve had to take additional time off work to stay with him.
We got him into his gown and I was allowed to go with him into anesthesia, where I kissed his little belly after he fell asleep, knowing that the next time I’d see him it would have sutures and a tube. The surgery lasted only an hour and Quentin and I were able to visit Stellan in the recovery room and wait for him to wake up, which he did after another hour or so. They’d placed an oxygen tube down his throat during surgery and that in addition to his dissipating cold caused his little voice to be croaky when he woke up and started to cry.
Finally we were in our own room, which is where we’d stay for the next three nights. The first day and night were rough because Stellan was clearly in quite a bit of pain, but he had pretty regular doses of morphine to ease everything and help him sleep. But by the following day he was smiling again and flirting with every nurse who took care of him. For the first 36 hours he was on fluids only, through an IV, and then we slowly started feeding him through his G-Tube, first with Pedialyte for 6 hours, and then with formula – first 5mL per hour, which we increased by 5mL every 4 hours until he was up to 40mL per hour. (Which is just over an ounce per hour, or about 26 ounces per day.)
Meanwhile, we were also in serious training. We had a good-sized booklet to read about the tube and its care and how to feed Stellan through it (and yes, there was a test!), and we practiced every time something needed to be done – changing the food bag or the tube, inserting medicine through the tube, cleaning the area around the Mic-Key (the button in his belly the tube connects to), and checking the balloon on the inside to make sure it was properly filled with sterile water. We learned what to do if the Mic-Key falls out, what to do if he starts vomiting or suddenly get super distended, and how to identify other issues like infection. We know a LOT about g-tubes now.
Stellan was finally discharged on New Year’s Eve, after we received a huge box full of supplies – extra feeding bags, syringes, our “emergency kit”, gauze bandages, and his pump. Because for the first several weeks, Stellan has to be on the pump 24 hours, as his stomach gets used to having food delivered directly into it and not via the normal route. We can continue giving him bottles and food via a spoon, but now we don’t have the stress of trying to get every single possible calorie into him. We can make food enjoyable for him again – and in the last few days he has shown a strong renewed interest in eating, particularly when we’re all at the table together having a meal.
In the coming weeks we’ll continue to increase the hourly feed rate and then at some point we will be able to switch to “bolus” feeds of 4-6 ounces every 4-6 hours, which will have him back on a more normal feeding schedule, assuming his body tolerates it. For now, he’s connected to his pump around the clock, and it has a cute little backpack we stuff everything into when we go out anywhere. I think I need to find some flame patches to sew or iron on to it to make it cooler. We change his food every four hours so it doesn’t spoil, including throughout the night, so even if Stellan is sleeping better again now that he’s full, we will still have plenty of stop-and-start nights ahead of us for the short term.
But of course it’s worth it. HE’S worth it. And we are seeing such an improvement already. He is smiling more, playing more, sleeping better, and getting stronger. And any day now (hopefully today!) he’ll finally cross the 15 lb mark, which he should have done weeks if not months ago, and which we will celebrate with champagne. With Stellan, the victories are different from other kids, but they are victories all the same, and sometimes even bigger.