Trying to get DD off of her NGT - offering oral feeds only... how will I go!

Well... I have had enough of Matilda not taking ANYTHING orally so I am taking a stand.

I tried this a while ago under hospital instructions and it did not go to well.

I am stopping all NGT feeding, I am only going to offer oral feeds of EBM and will top her up with water at night, so she is hydrated but not feeling full. In the hope she will get hungry and DRINK. She knows the purpose of the bottle, she can drink from the bottle, she chooses not to!

Well today it begins...

So far she has drank, 30mls! Thats it! And now she is saying 'Mummummum' in a whingy voice and when I offer the bottle she pokes out her tounge and smiles.... grrr!

I will keep it up as long as I can today and hope she understands what I am trying to achieve.

'Good Luck' to me!

Good luck hun :hug: :hug: Hope she takes the bottle for you :)

good luck hun!!!

Well, the first day didn't go to well, as follows...

9am - 30mls EBM orally
10.30am - 30mls EBM orally
Midday - 10mls EBM orally then 100mls water down NGT.
3.00pm - 15mls EBM orally

I gave up for the day and gave her a full feed down the NGT at 5pm and again at 9pm. At 11pm she vomited everywhere and has since been to the Dr - she has a chest infection! Seems I picked the wrong day to start :rolleyes:.

I will try again in a week when she is off of the antibiotics and feeling better.

Thankyou for your support :hug:

Good Luck hun!! It is a real bugger that once they have been on the NGT for long periods of time the realise that they don't have to work to feed so they get lazy as they know that eventually the food will come. But sometimes without it they just don't put on any weight.. damned if you do and damned if you don't

Stay strong, you can do this.
xxoo

Good luck hon
xx

We eventually managed to get our son off the NGT at 25 months!!! He had had lots of heart surgery and was a very complex case so it was hard for him.

I was pushed to go for a PEG but didnt want more surgery and more of a reliance on yet another artificial feeding port.

I did what you are trying to do - basically stopped using the NGT during the day but still used it at night (do you use an overnight pump?) and then reducing the length of time of feeds overnight and then the amount of feed overnight until basically I stopped using the bloody thing. Another thing we did was actually take it out (against medical advice!). I was convinced that the tube was causing a lot of his vomiting (6x day projectile) and that it would be more comfortable for him to eat and swallow without the tube in.

I gave myself one week without it as a trial, he lost 250g that week (I cried a river as he is then and now still on the 3rd percentile of the growth chart). The tube stayed out! :dance:

We only put it back in 18 months later when he was too sick again with his heart to maintain his own body weight and so the tube came back when he was 3.5yrs old for two months before more heart surgery and then one month after as well.

How are you going with it now? Is she over her chest infection? What do her Dr's and speechy say?

Rachel

Hi Rommy's Mummy,

Our little girl Emily is almost 6 months and still on an NGT. She has a heart condition also - Tetrology of Fallot and due for Open Heart Surgery repair before the end of the year.

She has stopped taking anyting via the bottle (only got up to 30mls) and we are also dealing with her throwing up if we give her too much. She is also now screaming through her feeds as if its hurting her. I'd love to try and take the tube out but can't afford her to loose any weight as they stil want her to put on a little more before they do the op.

Just want to ask how long it took for your bub to eat/drink better once you took the tube out? Are you glad you did it?

Our Pead. seems to think that once she has her repair done she will come good and drink on her own but we aren't so sure.

Hope the pregnancy is going well.

Broni

good luck sweet :hug: hope she gets over the chest infection quick aswell.

Hi Broni,

Our son has Tetrology too but with other complications including hypoplastic right heart. We hoped for the repair but instead he needed a series of operations which have now given him the Fontan which is palliative.

If you bub does get a repair then I would agree with your paed that she will be much stronger, her blood o2 saturation will be up and she will actually get hungry! What a marvelous thought heh? I wouldn't try to get rid of the NGT in the lead up to surgery. We did it after a surgery ( a couple of months after) and then unfortunately had to go back on it for three months leading up to the last surgery when he was 3.5 years old! Horrid but very necessary.

If she is in pain it is quite likely that the tube is giving her gastric reflux. That was deffinatley the case with our boy. Also created a hypersensitive gag reflex which meant he projectile vomited about 6x day! Oh my floors! And it was all expressed breast milk for the first 12 months. So we had him on omiprozole for the reflux and saw a speech pathologist specializing in sick babies for his feeding skills. Do you have any contact with a good speechy and diatician at your hospital? Your cardiologist or paed should be able to refer you. Its really worth the effort as her skills now are crucial in getting rid of that tube later.

At 6 months our son was only taking occasional sucks at the breast and nothing else. He was a very blue and small bub - born at only 1.6kgs to start with and then by 6 months has had three open heart surgeries plus abdominal surgery. So not a well boy.

Once he was stronger and had better blood saturations and had recovered from the surgery done at 2years we took the tube out. BUT he had some skills with feeding by then. We were still using an overnight pump but he was feeding OK during the day. BUT not progressing with his feeding and not actually replacing the overnight volume or calories yet. So we took the step of taking the tube out and seeing how he went without the support of the overnight pump and the agrivation of the tube in his throught. He lost nearly 500g in the first 10 days!! Seeing he was only ever on the 3% line on the growth chart this was a blow BUT we didnt see how puting the tube back in was going to be good for him so we perservered. It took him a while to catch that weight back on but he did. And he learnt about hunger - such a basic thing that our babies dont really understand! It was a very hard and worthwhile struggle.

He is now 5 and feeding is still an issue. But he is finally at the 10% line on the chart and he actually has energy!

I am very happy with the way we managed the tube feeding overall. It was one of the most stressful aspects of his care and was a very hard way for me to mother him - I just wanted to breast feed him and see him grow strong and well. Thats all we ever want for our babies isnt it?

Sorry I have probably bombarded you! Very happy to answer any questions you have though...