Weaning from Feeding Tube

While I realize it's important that she learn to suck/swallow/ breathe and the building of those muscles, ect, have you considered trying to give her a cup? You could try a sippy cup with a soft spout that looks like a bottle nipple so she just clamps down and the fluid comes out or even try a regular open top cup or straw.

Also, if she doesn't have an OT she needs one. Are you involved with ECI?

Wishing you the best,
S. (mom to 4 special needs kids)

hi~
I sorry to hear you are so stressed. unfortunately it will likely be a very long process. she needs to build endurance, strength and learn to coordinate her suck, swallow, breathe pattern.

I would encourage you to talk with the therapists about your concerns. they should be providing you tips to work on at home.

You can find some additional information on transitioning from a NG tube to oral feeds here:

http://www.new-vis.com/fym/papers/p-feed12.htm (Children with Feeding Tubes: Part 1-The Issues)

http://www.new-vis.com/fym/papers/p-feed14.htm (Children with Feeding Tubes: Part 2–Treatment)

http://www.new-vis.com/fym/papers/p-feed15.htm (Children with Feeding Tubes: Part 3–Making the Transition to Oral Feeding)

good luck!

I haven't gone through this, but just wanted to say that my thoughts/energy are with you!
It sounds like you've already gone through so much, and if somehow you can just remind yourself that this trial and hard time is because she's getting better and working on stronger, then that might help. :)
Don't worry, remember to breath deeply and know that your little one has had such a hard time of it, she'll come around. It'll be on her own terms, but thats ok.
:) Love and peace!

My daughter had a different defect (she had gastroschisis) and was fed via Broviac IV and somehow I was supposed to get her interested in formula! I was referred to another mother who suggested that I feed her while watching kid music videos. I also distracted Natalie with something new/different each time (like I'd show her large beads or just anything around the house) to get her to look at something & she'd eat distractedly. This helped.

Also, our therapist thought she would benefit from therapy given to kids with sensory disorders (even though Nat did not have this prob), such as brushing her arms/legs with a soft brush slowly, then compressing her large joints (knees/elbows) gently, then ending up by rubbing my finger behind her front teeth. I think I did this 3x day. This really, really helped her eat 1/3 more!

After her IV was gone (and also her PEG tube after that), she still routinely hummed during meals, so I know the music was a plus.

We used a cup that had a section missing at the top, so it wouldn't be threatening. I didn't give her many bottles, just went straight to this cup, a special one our OT therapist gave us.

God bless!

As one of the other Mom's has already said, keep reminding yourself that this new learning situation for your daughter is IMPROVING!!! It is a trial, but a JOYOUS one!!! I would think that the doctors, and other support personnel both in your doctors office and at the hospital should be well equippped to help you learn how to help HER learn the skills that are needed in order to kiss that NG tube goodbye!! It is a complex set of skills, much more difficult than just letting the food appear magically in her stomach...via the tube! She has to build up the muscles that are needed for all of that sucking, and swallowing!!! Be patient, be calm and be grateful...you WILL survive this..I promise!!
God bless you all!!

You might talk with Dr. Luepnitz to see if he can help direct you and get your baby on track.

I haven't had personal experience but I have a friend who has. She said that usually at this stage thy would just leave the NG tube in until they kid was about 3 or so and they don't even try to get them to nurse or feed from a bottle because it is so hard. She did have success getting her baby on a bottle, but I know she was working against some of the health professionals who wanted him to stay on a bottle.

I know it will be good for her developing to suck from a bottle (and easier on you probably). So I say stick with it, and know that you're doing the best thing but that it might be a difficult road ahead. Best of luck to you! And congratulations on your beautiful daughter.

My daughter had open-heart surgery for congenital defects at the age of 6 months (would have been sooner, but she wasn't strong enough). She also had a feeding tube for a while, although not as long as what you've had from the sounds of it. Remember that although her heart is "better" now, you still have a long road ahead of you. Believe me, I know how frustrating and trying it can be. But you have made it this far, and with time, things WILL get better! I would talk to your doctors and therapists about your concerns and see what they have to say.