Maddison Ohs, Tube Feeding

Feeding Update: Feeding Into The Stomach

Trialing a transition from J-tube feeding to G-tube feeding (Feeding Into The Stomach)

I’ll start with a little feeding history of our daughter Maddison:

Maddison has been tube fed her entire life. It all started with what I shared in her birth story – that when she was born we knew something wasn’t quite right. We discovered in our NICU stay that Maddison had a bulbar dysfunction and lacked the ability to suck and swallow. She had a laparoscopic G-tube mic-key button placed when she was still in the NICU. This feeding tube allowed us to feed her directly into the stomach and not have to worry about her not being able to nurse or suck on a bottle. Unfortunately Maddison’s reflux resulted in a hospitalization for failure to thrive, where we transitioned to j-tube feeding. Feeding into Maddison’s intestines allowed us to give her nutrition without her throwing up all her calories.

Over the past 15 months since her G/J tube was first placed in interventional radiology at BC Children’s Hospital, and we fed her through the J-port, she has grown into a healthy little girl. Maddison’s ability to tolerate her feeds has improved over time. In that time we have been able to switch her from her infant formula to Compleat Pediatric Organic plant-based tube food. Her body has shown us that it’s able to digest its feeds without concern with the assistance of her medication. Currently she’s on Domperidone to aid in motility and gastric emptying, and Ranitidine for reflux.

Biggest changes

In the past 6 months Maddison’s oral intake has become more consistent. From small rice sized tastes of water-based fruit and vegetable purees. To more significant feeding volumes of 50-70 ml. in a sitting. This was all while still being fed her complete dietary requirements through her J-port.

Most significantly Maddison’s ability to take more oral feedings has shown us that her stomach has matured and strengthened. This has given us hope that her stomach may now be strong enough to hold Maddison’s tube feedings. In her most recent meeting with her feeding team and dietician at Sunny Hill, we’ve been given the go ahead to attempt transitioning Maddison back to feeding into her stomach. We can do this by using her G-tube port on her G/J feeding tube button. Her GI has echoed that her stomach should be strong enough to hold her feeds.

Why do we want to do the switch?

Feeding into the intestines saved Maddison’s life. But it also means that Maddison has had to be hooked up to her feeding pump 22 hours a day. Continuous feeding is required when feeding into the intestines as they cannot hold large volumes like the stomach. Switching to feeding into the stomach could mean that we can increase the rate at which her feeds are administered (bolus feedings) giving her freedom from carrying around her feeding pump all day.

G/J feeding tubes are inserted and changed in interventional radiology at the hospital. This means every 4 months we drive out to the hospital to have the long tube pulled out and a new tube inserted – checking it’s placement with an x-ray. If the transition to full G-tube feedings is successful we would be able to switch back to a G-tube mic-key button. This can be changed at home every 3 months.

Both of which would ease some of the extra work and concern around maintaining a G/J feeding tube.

The logistics

The transition is starting small and slow. First step is taking one of Maddison’s 4 tube feedings and administer it though her g port and into her stomach. We will keep the dose and rate exactly the same as we do when we are feeding into the intestines – allowing the stomach time to adjust and digest. We’ll keep this schedule for a couple days to see how Maddison’s body responds and if there is any reflux or regurgitation from her feeds. If things are moving along well, we will slowly switch the remaining tube feedings one by one into the stomach until all her feedings are going into her stomach.

As time continues, and Maddison continues to grow, we will try increasing the speed of her feedings. This way we can move from continuous feedings to bolus feedings.

Continuing oral feedings

Maddison’s current oral intake isn’t significant enough to replace her tube feedings. But can act as an indicator to her need for more calories. Since the real-food formula we feed Maddison completes her dietary requirements, she can orally eat what she likes for pure enjoyment. We will continue with her feeding team as Maddison is limited to baby food purees due to her immature swallow, and delayed oral eating experience.

So that leaves us with,

Could she potentially be tube-free in the future? The requirements for being able to remove Maddison’s feeding tube are laid out in the post I wrote a while back: How long will she have the feeding tube for? We just don’t know if or when Maddison could sufficiently provide her own nutrition orally. It’s just something we will have to wait and see what happens. For now, it is just thrilling to see she is taking steps in the direction we want.

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