NG tube feeding aversion and weaning

[Jenbug]

Hi, I am a mother of a 5 month old baby who is dependent on NG tube feedings since July 23, 2009 or about 3 months secondary to FTT due to GERD. She was born with a congental lung mass (type II CCAM) and had respiratory distress at birth and was in the NICU for 5 days. She went home without oxygen and was to return in 2-3 months for surgery to remove the mass.

She developed severe reflux and vomiting. During that time she recieved a battery of tests (modified barium swallow test and upper GI x-ray, upper GI endoscopy with biopsy, and 2 ultrasounds)- everything was all clear). Her suck and swallow were strong and there was no signs of aspiration. She was observed to reflux liquids starting at 15 cc.

She began to become feeding aversed and eventually extremely orally defensive. So much to the point that if I even touched her lips with a nipple or pacifier or sometimes breast she would gag and vomit and she would not chew or suck on her own fingers. I am an OT (although I did not specialize in feeding/oral motor issues) but I was able to work with her until she now allows us to put anything in her mouth (fingers, toothbrush, washcloths, toys, vibrating toys etc...). She will not suck on a bottle or pacifier but I attribute that more to her strong prefrence of wanting only the breast.

I continued to nurse her before each tube feeding to provide oral stimulation and promote peristalis. She began to start refusing meals after about a week of being on the tube. I would still offer her the breast before each tube feeding and some of the time she would nurse for a 2-3 minutes and a good 20 minutes at bedtime.

After her recent surgery, she began to refuse to breastfeed, take a bottle or cup. I am also working on solids. At first she was curious about the solid food and would taste but spit it out. Once she learned it was food she has become very tight lipped and will not allow solids to come into mouth. She also swats at the cup and turns her head away from the bottle. She has nursed a few times for a few minutes but usually spits the milk out or quits nursing when the milk lets down. She will allow me to put the bottle in her mouth at times but all she does is chew around on the nipple and spit the milk out.

I am seriously thinking of removing the tube (under a doctor's supervision) and just offering the breast or bottle only without supplementing with the tube and seeing what happens. She is very stubborn and it would probably take more than a day to get her to eat.
At this point, how could a speech therapist help me? Is there anything else to do that I have not already done? Does it sound like a purely behavioral feeding issue because of the 3 month use of the NG tube?

[Jenbug]

Sorry everyone... I posted this under the wrong section. I meant to ask the SLP the question!!!

[Mary]

No worries! I actually answered your other post before realizing where it was. D'oh! (It's been deleted, BTW).

I'll delete this post in a few minutes to help avoid confusion.

[quango2001]

Our son had a CHD and had all the related FTT symptoms; unable to tolerate tube feed, vomiting/gagging, etc. He was on the NG from 6 months old until his surgery, and after the two surgeries we thought everything was going to be fixed but after two months later he was still on his his NG tube! Although he was able to tolerate his tube feeds better, at times he would still vomit, particularly in the early morning around 4am-ish so night feeds were difficult. But now at 9 months he is finally off his Ng tube feed. Here's the chronology of how it happened in hopes it might help you.

-Worked with OT & Dietician to gradually increase his ability to tolerate larger volume and less frequent feeds.
-Started a 26kcal/oz Lipistart at 90 ml every 3 hours, oral first, then NG the rest.
-Worked our way to 150 ml every 4 hours, and 130 ml every 3 hours at night.
-Started to get frustrated because he was developing oral aversion because of the NG tube causing reflux. Quite a vicious circle, the worse his reflux got because of the NG the less he ate orally, further requiring the NG tube. His vomiting at night kept us up and made him miserable. In addition his face was getting rashes and was raw from the Replicare tape.
-Gave him Prevacid (Lansoprazole) once a day in the morning
-After the cardiologist okayed it we switched over to Similac Advance Shield formula, which our Dietician felt was a better tasting formula.
-One day he pulled his tube out and we kept it out to see how he would do, and he barely made the cutoff for volume, so we kept it out another day.
-So two months from the day of his last surgery his oral feeds started to improve day after day, and now he is tube free and feeding well, sometimes 200ml at a time.

We're never quite sure what did it, but we thought it was probably due to a better tasting formula and also the fact that without the tube the reflux was reduced thus giving him the opportunity to develop his own oral eating skills.

It's been a long road for us as well, so we made a point to come back and share our experience in a few blogs in hopes it will help someone. So hang in there!

[AllieandJacksProudMama]

All I can say, to summarize how I feel - is that my daughter was taking a small amount of pureed food when the NG tube was placed, and stopped after 3 months of the NG. We were exactly where you are now. The NG tube is NOT a long-term solution, and you should get in touch with your doc and DEMAND that a plan be put into place. If she is not eating at all, you are likely looking at long-term tube feeding, and should start thinking about a g-tube surgery.

If I knew then what I know now, I would have never let anyone put an NG tube in Allie, ever, ever, ever. It took us years to get over her oral aversion, and she still is pretty orally averted, although much, much better than she used to be.

I am sorry. This is so hard.

[Jenbug]

Thank you ladies for sharing. It means a lot. We started feeding therapy about a month ago. She absolutely refuses to eat solids or drink from a cup or bottle. Progress has been slow to none. Today the SLP said she thinks Abbey may need to move to a G-tube. I think the G-tube could be better for her. I think it is a hard choice for me because it means the journey will be a long one and it feels like defeat. I feel so let down by the medical community as a whole. I don't feel like any of them know what they are doing at times!

[AllieandJacksProudMama]

I completely understand where you are coming from with regard to feeling let down. However, the NG tube is such a bad thing for children with feeding problems, and in my opinion, should not be used longer than 1-2 weeks, max.

Honestly, I just posted this on another post today, but the g-tube was the best thing we ever did for Allie, ever. How in the world are you supposed to make progress with feeding when your child has a tube shoved in their nose, down the back of their throat, and taped to their face?

I would seriously discuss a g-tube with the GI. We will help you through this, trust me.

[Jenbug]

I am having this same G-tube discussion with Mary on another thread in the tube feeding section. I am in agreement with what you are saying. But, if you have time to glance at the other thread I describe in detail some of the crazy medical professionals I have had to deal with.

I am taking to heart everything you and Mary have said and I am going to start the G-tube discussion again with Abbey's different docs and see where it leads.

Thanks so much!!

[Jenbug]

Christyn,

BTW... I was reading what you posted when you were worried about tube feeding going on for years. That is by far my biggest fear. I feel like by getting the G-tube I am finally admitting defeat and facing the fact that I may have to deal with the feeding struggle for years to come. I just want it to be over. It is so depressing at times.

[AllieandJacksProudMama]

Sometimes it may not just be over, unfortunately. I used to have this idea in my head that Allie would just magically start eating one day. I know now that will not happen - she is taking very slow steps, and we may not get there for years. The good news is that I finally learned to make peace with the feeding tube and now I love it. I bought a high-powered blender, and Allie now gets very nutritious meals (broccoli, bread, pears, meat, etc.) through her feeding tube because I can puree just about anything with this blender. I know she is growing and thriving and this is the only way she could ever grow and thrive. I can honestly say that I love Allie's feeding tube and pump, and it was the best thing we ever did for her, hands down.