The first few days of Ryan’s life he was on IV nutrition. He had a breathing tube in his nose so he was unable to nurse or take a bottle. After a few days it was apparent he wasn’t going to breathe on his own so he received a nasogastric (NG) feeding tube in his nose.
I knew Ryan needed the NG tube for nutrition. I was okay with it. There were so many other things more important that needed addressed it was just one more tool keeping him stable.
As Ryan grew and eventually got off his vent, it became my goal to get him off the feeding tube. I desperately wanted him to go home without the tube. With his cardiac and pulmonary issues under control the tube became my focus. I remember like it was yesterday the room where he was in the HKU I switched gears from cardiac to nutrition. He was six weeks old.
Over the next few weeks, I tried exposing him to a bottle and nursing. He struggled with both.
When Ryan came home at eight weeks old, I was disappointed he was accompanied by a feeding pump and his NG tube, but was resolved to get rid of both as soon as possible. It was in the first month of his being home that I learned heart babies don’t have enough energy to establish a consistent suck-swallow pattern, and that it’s uncomfortable to swallow with a tube in your throat. Ryan’s speech therapist described it as having a strand of spaghetti lodged in your throat while trying to eat and drink. She listened to him while he was taking in fluid and told me he was taking it up into his nasal passages instead of straight down his throat. He would also choke on it frequently causing us to be on a constant look-out for pneumonia.
With all these obstacles against us, we still trudged on toward eating by mouth. The first thing I did was play around with the utensil I was using. He started refusing a bottle so I tried using spoon… a medicine cup…. and finally a medicine dropper. I liked the medicine dropper because I could measure how much he was getting and also because he could make the water come out by sucking on it. I felt like it was helping him learn to swallow.
Having a speech therapist come and help us with the process was critical. By the time Ryan came home for good, he had been on a feeding tube for 11 months. He’d been on a vent for many of that first year which meant he didn’t even really actively swallow his spit. He didn’t know how to swallow (which seems so weird to me) and didn’t know how to use his tongue to move food around his mouth to eat (called lateralizing). His therapist gave me exercises to do to get his tongue stronger and teach him to lateralize from side to side.
Once he learned to swallow a little, we took him for a swallow study to make sure he wasn’t aspirating while swallowing. Aspirating is when food or liquid goes down the trachea into the lungs… what we call ‘going down the wrong pipe.’ When we knew he wasn’t aspirating, we started him with liquids mixed with a gel-type material called Simply Thick. It allowed him to have more control of the water. We always used water in case of aspiration so nothing acidic would get into his lungs.
Over a very, very long time…. Ryan learned to swallow food and water. Once he was efficient with a medicine dropper we switched to a sippy cup with a soft nipple. He now drinks from a hard-tipped sippy cup.
But that didn’t solve the problem of getting him off the feeding tube. To do that, we had to slowly decrease the volume of Ryan’s tube feeds balanced by increased PO (by mouth) feeds.
When working with doctors and nutritionists, they want to make sure the patient is getting enough nutrients to grow. They look at two things: how many calories an average-sized/aged patient should be receiving and is the patient gaining weight. The nutritionist will not decrease tube volume unless the weight remains stable or increases.
This dance is a lengthy one and was frustrating for me. Ryan was supposed to get a certain number of feeds per 24-hours many times making him full when it came time to teach him to eat PO. I finally took matters into my own hands and started eliminating a feed in the day to see if Ryan would be hungry. I couldn’t do this when the nurse was around, and in the beginning she was there five days a week so it was very slow going. But the good news is, I noticed Ryan ate a lot more when he didn’t have a tube feed. Duh…. expecting a child to be hungry when it’s given a buffet by force-feed doesn’t make sense.
In January 2010, Ryan was doing well enough that we lost three of our daytime nursing shifts. This was a blessing in disguise as it allowed me to eliminate more and more of his tube feeds without having a medical professional who was liable watching my every move. The speech therapist and I worked to get him eating enough food to justify the nutritionist officially decreasing his calorie intake by tube. With all the doctor visits we had, I kept track of Ryan’s weight to make sure I wasn’t being negligent. We also followed his weight at home on a weekly basis.
There came a point, and I can’t remember when, where I contacted the nutritionist to ask her to officially discontinue Ryan’s daytime tube feeds so we could get him to eat regular meals. We kept track of the little bit he was eating. We put him on continuous feeds at night to increase his nighttime calories to account for his lack of daytime calories. And again, we watched his weight.
It was this January (2011) that I emailed her again to give her an update on his daytime food. We had slowly decreased his night calories (with her help) and I felt it was time to make another adjustment. To my surprise, she discontinued his night time feeds all together. With his stable weight-gain and the amount he was eating while awake, he no longer needed any supplemental calories. I was shocked. It seemed to happen so fast…. not getting rid of the tube, but going from a large night time feed to nothing at all. Once Ryan mastered the skill of eating and we gave him the chance to be hungry, he never looked back.
I know this post is rather lengthy and probably not that interesting to many of you. But I had a mother email me and ask me how we got Ryan off the tube and another who emailed me to say her son just received one, so I thought it might be helpful to share our experience.
Disclosure: I’m not a medical professional nor do I play one on TV. This is not a how-to post describing steps you should take to wean your child from a feeding tube. Please consult medical professionals when debating how to eliminate a feeding tube from your child’s life.
(c) 2016 Leighann Marquiss
Comments (4)
Leighann…I love the disclaimer at the end of the post! You crack me up!
I am sooo thankful for all of the progress Ryan has made…and I want you to know that my husband and I still pray for Ryan…and for all of you.
I enjoy following your blog, and I am happy to be your bloggy friend.
Love, Linda
What a great journey…I love how you took matters into your own hands because as I unfortunately found out as well, no one really knew how to get Catherine weaned. I am happy to say that she has been eating enough that she gets 0 calories through the tube now…only water! We took her to an intensive hunger based weaning program in Seattle. Thanks for writing this all down and for being encouraging! Way to go Ryan!!!
Thank You! We are in the process of weaning Karsie… and a lot of it is taking matters into our own hands. It is such a slow road, and we are so tired of the problems associated with her tube. Her anatomy causes SO much leakage and that causes sores and raw spots… and she can eat by mouth… but we are watching the weight and the calories as well. Prayers would be appreciated!
Thank you for sharing your story… it is nice to hear that we are not the only ones who are trying to get things done and testing out our own theories.
Not long and boring AT ALL! I’ve often wondered how he continues to progress and view it all as a direct answer to prayer. Thanks for sharing and God Bless You in your continuing efforts to be a great parent to all of your children!
Beverly – Ohio