Why does Rowan need a feeding tube?
When Rowan was born, he was on such a high level of oxygen support that he wasn’t able to breastfeed or take a bottle. We used a nasogastric tube (NG tube) to feed him tiny amounts of breastmilk. An NG tube is a small tube that passes through the nose, down the throat, and into the stomach. It carried food and medicine to Rowan’s stomach so he could get the nutrition he needed until he was able to eat on his own. When Rowan transitioned to more minimal oxygen support, he was able to try bottle feeding and breastfeeding. He did great and loved eating by bottle, but he couldn’t eat enough to keep himself hydrated and nourished. After a few weeks of bottle feeding mixed with NG tube feeding, we decided it would be best long-term to get a G tube placed. Kidney babies often have trouble with growth and nutrition because their kidneys aren’t doing their job correctly. Being on peritoneal dialysis for 12 hours a night also makes their bellies feel extra full because dialysis continuously inserts and removes extra fluid into the peritoneum to help rid the body of toxins. Rowan still eats breast milk by bottle when he can and has also started to eat purees, but still doesn’t eat enough on his own to grow and develop. He also gets about 13 doses of medications per day and there is no way he would be able to take them all by mouth so the G tube helps to make sure he gets everything he needs. He will most likely have the G tube until a couple years after his future kidney transplant until he learns to eat and take medications orally on his own. G tubes used to seem so scary before Rowan got one, but I’m so thankful that we chose to have it placed and that he hasn’t had any huge issues with it. It makes our feeding routine so much easier (other than all of the extra supplies and clean-up associated with tube feeding!). I love my little tubie!
A Day in the Life
In the morning, after we get Rowan out of bed, I clean his extension from the day before and attach a new extension to his G tube. We used to use the same extension every day for a week or two, but the extensions get gross and clogged from the overnight feeds and I’d prefer to give him a clean one every day. I give him his first dose of medicine around 9:00am through his G tube. Every time you give medicine or food through the tube you have to flush it with a little bit of water to keep the extension piece clean. We go through tons of medicine syringes every day so every night we have to soak, wash, and lay them out to try to be used again the next day.
Between 9:30am and 10:00am, I prepare a bottle of breastmilk mixed with formula (for extra calories to help with growth) for Rowan to drink. Whatever he doesn’t finish orally will be given through his G tube. Before I start his first tube feeding of the day, I change out the old feeding bag from the previous day to a brand new one. I have to do this every day to prevent bacteria build up from old milk. Once the remaining breastmilk mixture has been poured into the bag, I prime the pump by letting the milk run through all of the tubing that is connected to the bag. Priming the pump ensures that there is no air in the tubing so Rowan’s belly doesn’t get bloated and gassy. Next, I connect the extension to the G tube in his stomach. The feeding pump and bag of milk are connected to an IV pole that I set next to Rowan. I attach his G tube extension to the tubing that is connected to the bag of milk and unclamp his extension to allow milk to be pumped into his belly. Once everything is connected, I turn the pump on, set the dose and rate, and start the feed. Rowan’s feed run over a half hour and then I am able to disconnect him until his next feed. He eats every three hours during the day and receives 2-3 medications before every feed.
At the end of every day, I wash the skin around the G tube with water, baby soap, and a q-tip. We put Rowan to bed around 8:00pm and have to leave his G tube extension connected to his G tube so we can feed him over night. I use a Halo Sleepsack to cover him at night and cut a small hole in the side to allow the G tube extension and dialysis catheter to come through so he doesn’t grab at his tubes at night. Around 8:30pm, I give him another dose of medicine through his G tube while he is sleeping. At 9:30pm, I mix one of his medications with salt, formula, and breastmilk to feed through his pump overnight. His overnight feed runs over 10 hours so I have to use cold milk and keep an ice pack around the bag to keep it cold so it’s able to run all night without the milk spoiling.
The next morning we wake up and do it all over again! If we have errands to run or are traveling, we have a cute, little backpack that holds his milk bag and feeding pump so he can eat on-the-go.
This routine used to feel so overwhelming (and it still does sometimes!), but all of these things have become so "normal" to us. There is a lot of creative problem solving that comes along with a medically complex baby. "Normal" isn't really relevant in our lives. Everything takes trial and error and creative ideas; things like clothing, PJs, diapers, how to travel with extra supplies, home organization, food options, etc.
Who else has a tubie baby with a busy daily routine?!
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