My daughter Mel had 4 different types of feeding tubes in her first 6 months of life. I will describe each tube, this will help you understand a few different types and also familiarize yourself with them if a feeding tube is a possibility in your families future.
First was an Orogastric (OG) tube. This tube was placed in Mel's mouth and passed through her throat and down to her stomach. This tube was taped to her skin at her lip and chin. Mel had this tube placed at 18 hours after birth due to copious nasal secretions (aka a shiz ton of snot) that was worse while she was nursing and it was blocking her airway causing her oxygen to drop. This tube allowed Mel to get all the nutrition she needed while not having to work and burn calories and also not create additional snots!
On September 19, 2016 when Mel was a month and 3 days old she had her AMT Mini-one gbutton placed. This feeding tube is placed on the left side of her abdomen directly into the stomach through the abdominal wall. With this tube we could finally see her sweet little face without tape all over it holding the OG tube. I LOVED this tube! It was low profile and fit well on her tiny belly. I didn't feel like it got caught on much and I never had an issue it granulation tissue.
In January 2017 Mel got very sick, we found out that she had aspirated reflux into her lungs and that resulted in pnemouina and a collapsed left lung. She was intubated in the PICU for 2 weeks and that will forever be one of the worst times of my life. In order to prevent her from refluxing the doctors decided to try an NJ (Nasojejunal) feeding tube. This tube went in through her nostril and went down through her stomach into the part of her small intestine called the Jenunum. Since her food was bypassing her stomach it cut down on her reflux significantly! The problem with this tube was...
1. It was very easy for her to pull out. To replace this tube we had to have an xray to be sure in was in her Jejunum before she could be fed. This was a pain because even in one of the best children's hospitals in the US if it's night time, a weekend or a holiday it's going to take forever and a day for an xray!
2. She already has a hell of alot of snot in her little nose and it was just clumping around this damn tube. To keep her from pulling the tube out they installed a "bridle". This was a piece of fabric that clamped to the tube and wrapped around her septum. If/when she did pull on it, it would not feel good so it would deter her from pulling it. The bridle was SO terrible with all her secretions! I basically demanded we had to figure something else out before we went home!
(I would like to add that a bridle is a great option for some people! I have seen children with them and I have spoken to parents that swear by them! So don't let our experience deter you from this as it is minimally invasive.)
Finally in February after arguing with doctors about Mel's NJ tube just not cutting it, a doctor agreed convert her G-button to a GJ tube!!! The reason this took arguing to achieve is because at the time Mel only weighted 11 pounds. Most doctors require patients to be at least 22 pounds to convert to a GJ so the procedure can be done in Interventional Radiology instead of the OR. This glorious man told me he could and would do the procedure in the OR and we could get that terrible tube out of my babies nose! So we booked it!
Mel still has her GJ tube and after 7 months of continuous Jejunum feeds we are converting her to a blended diet that goes to her G (stomach)!! I will explain continuous feeds and our blended diet transition in a later post!
So I guess you could say we are pretty well versed in the tubie life! I would love to know if your little one has a tube and what type! And as always I am always game to answer any questions!!
Love until another day,
Shelbi
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