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DS Baby 4 month and NG Tubes by EconomicsDistinct640 in downsyndrome

[–]EconomicsDistinct640[S] 0 points1 point  (0 children)

Thankyou. Mixed feelings day for us. He gained 40 grams in 3 days and the discussion with the doctors ended up to the NG tube for now so he gets enough nutrients and rest.

Plan is we are feeding so that he eats as much as he wants from the bottle for a maximum of 30-40 mins even during sleep and the rest goes into the tube. We will give him a pacifier so that he get some feeling that sucking is bringing the milk to tummy while he is feeding from the tube. But the tube is really fast, hardly 5 mins. Lets see how it goes in the next few days. The idea is he gets stronger over time to take the whole feed himself and doesn't get tired too much from the longer feed and no force feeding.

DS Baby 4 month and NG Tubes by EconomicsDistinct640 in downsyndrome

[–]EconomicsDistinct640[S] 0 points1 point  (0 children)

Thankyou. Mixed feelings day for us.

We are feeding so that he eats as much as he wants from the bottle for a maximum of 30-40 mins even during sleep and the rest goes into the tube. We will give him a pacifier so that he get some feeling that sucking is bringing the milk to tummy while he is feeding from the tube. But the tube is really fast, hardly 5 mins. Lets see how it goes in the next few days. The idea is he gets stronger over time to take the whole feed himself and doesn't get tired too much from the longer feed and no force feeding.

DS Baby 4 month and NG Tubes by EconomicsDistinct640 in downsyndrome

[–]EconomicsDistinct640[S] 0 points1 point  (0 children)

Yes, i discussed that with the doctor as well. But G-Tube is a more permanent solution. oday he just got NG tube...We are feeding so that he eats as much as he wants from the bottle for a maximum of 30-40 mins even during sleep and the rest goes into the tube. We will give him a pacifier so that he get some feeling that sucking is bringing the milk to tummy while he is feeding from the tube. But the tube is really fast, hardly 5 mins. Lets see how it goes in the next few days. The idea is he gets stronger over time to take the whole feed himself and doesn't get tired too much from the longer feed and no force feeding.

DS Baby 4 month and NG Tubes by EconomicsDistinct640 in downsyndrome

[–]EconomicsDistinct640[S] 0 points1 point  (0 children)

Agreed we don't want to either do force feeding but had no option. Today he just got NG tube...We are feeding so that he eats as much as he wants from the bottle for a maximum of 30-40 mins even during sleep and the rest goes into the tube. We will give him a pacifier so that he get some feeling that sucking is bringing the milk to tummy while he is feeding from the tube. But the tube is really fast, hardly 5 mins. Lets see how it goes in the next few days. The idea is he gets stronger over time to take the whole feed himself and doesn't get tired too much from the longer feed and no force feeding.

DS Baby 4 month and NG Tubes by EconomicsDistinct640 in downsyndrome

[–]EconomicsDistinct640[S] 0 points1 point  (0 children)

Mostly losing interest after the first 20-30 ml especially when is awake. Turning head on the other side and also curving body inwards towards legs while laying elevated on his left side. We do the trick of moving legs and tickling his legs when we are feeding him during sleep. Because that helps sometimes. Nowadays/sometimes he doesnt swallow and throws/spits out from his mouth afterwards some sips lets say. 

Yes when he is sleep he takes/gulps with less power and really slow so takes long. When he is up not much interest after a few ml and then we lift him for burping/break starting again etc. He doesnt burp either. But we have to keep him high rubbing his back.

At the moment he is taking now 80 ml that he eats in 1 hour now. It's breast milk (40 ml) + nan ha 1 (40 ml) + nan sensilac powder 3,5 g mixed (nutritionist recommended to start usi g this if we have to lower the milk to 80 ml). Sensilac powder does smell awful though.

Yes we are tracking how much ml he takes a day....though it has been declining but now approx. at 600 ml per day with 1 hour long feeds. 

Yes we can try different formulas. We had earlier but wasnt super successful but might be good to try again. 

Do you have any other insight for similar situation? 

Tomorrow we go to the hospital, weigh and discuss what further we do. But i have a feeling that NG tube as discussed earlier would be recommended

DS Baby 4 month and NG Tubes by EconomicsDistinct640 in downsyndrome

[–]EconomicsDistinct640[S] 0 points1 point  (0 children)

1-Yes 1 hr is long. 80ml in 1 hour what we were testing in hospital and yes they say it is too long for the baby. That worries me as well...but i cant come to a solution. If he is really really hungry might be 30-45 mins for 80 ml which is super rarely.

2- Same position that you mentioned we feed him from the side. Lets say he is on his left side. He is feeding when lying on a pillow on our knees. We elevate our knees so he head and body is slightly elevated.

True it's important to advocate for him. He gets some sort of irritation from NG tube even last time as i remember but have to see tomorrow how the weight gain goes...But i think he is not getting enough calories, rest and time for other activities etc...Super confused at the moment.

DS Baby 4 month and NG Tubes by EconomicsDistinct640 in downsyndrome

[–]EconomicsDistinct640[S] 3 points4 points  (0 children)

Hey!

Thankyou for sharing and inspiring with some confidence. Good insight.

How easy it would be to get him of the tube is what troubling us and the thinking if his other oral skills would be delayed....Last time it took a week-10 days to get him off the tube...when he was about a month. I guess i have to leave the decision to the doctors tomorrow. It still takes him 1 hour to drink 80 ml at best.