Learning to tube feed

[DHime]

both our kids are on about the same amount of food. My DS is on 24 calorie formula though. that has helped allot.

 

[vixxen]

It really sucks that we cant get more into them.
Yesterday i had to take my daughter upto the a & e as she went blue and stiff and then was sick. I've now been told to reduce it down to 55mls per 3 hours until i see the dietition today.The doctors was convinced it was linked to her reflux,the more we give her the more shes being sick and her heart works too hard while digesting it.
How long did it take your docs to decide to give your baby a fundo op?
Is your baby putting on weight better now?

 

[DHime]

well, he was also going blue and stiff. first they did an eeg to rule out seizures. then an upper/lower gi to rule out pyloric stenosis. ultrasounds and more.
any time they turn blue they should go to a doc. aspiration easily leads to pneumonia.
after a few blue episodes i chose to go ahead with the surgery and gtube placement. he is doing way better now and finally up to the 2 percentile in weight. he gained 1 lb in 2 weeks to give u an idea. there is a transition period to get used to the wrap tho to be sure. i took him to childrens hospital in so. fl. she may not need it but sounds like she will end up with a fundo or treach to allow her to thrive. if a treach is needed, they get it out later as they get older so it's not permanent.

 

[vixxen]

Yay shes gone upto just over the 0.5 percentile growth line!
At 18 weeks she is weighing 10lb 2 .:happydance
As the doc said yesterday milk down to 55mls every 3 hours but with even more thickener and will wait to see what growth is like by next week.

I hate it being over christmas and new years because all the help is not so easily available as everyone breaks up at this time of yearso must wait for all the other people involved like home nurse ,S.A.L.T and other docs.
Am now scared she will do the going blue thing again, and the aspirating problem scares me alot as she has had pneumonia twice now.