Posted by Dana on September 30, 2003 at 19:19:46:
In Reply to: Re: tube feeding posted by 98chevy on September 30, 2003 at 17:38:12:
Wow- all this and having another newborn to deal with at the same time-- I'm impressed! That takes a very strong person to do this every day. Go girl!
You mentioned brain damage do to lack of oxygen in one of your babies. Is this the same daughter on the ng tube? Does she have any suck reflex?
Before my first son was born, we were faced with a possibility that he might have prune belly syndrome. That means that the muscles aren't developed in the intestines/bladder and the child basically gets fatally poisoned because he/she can't void. I was sooo thankful that wasn't the case. So, those feelings came up again as I read your post. That must be a difficult medical issue.
If your intent is to tube feed her for a longer term (more than a year), I'd really recommend the g-tube surgery. My son (then 2 1/2) handled this better than his previous surgery (ureter reimplants at age 2). The doctor put him under and then placed a small flashlight thing down his throat into his stomach. Then the doctor cut a small slit where the light shined through (about 1 inch), sewed the stomach to the inner flesh (preventing the stomach from free floating) and put in a hole (called a stoma). Initially we had a permanent tube (Bard button) placed. This was fairly flush to the skin and small. But it's held in place with a flat plastic piece that is painful to replace. We chose this over a Mic-Key or AMT button which is held in by a small plastic water-filled balloon. I thought my son would pull it out (he likes to roughhouse) so we chose the permanent one. Looking back, I should have chosen the balloon type instead.
After the surgery, he had morphine for pain (IV drip). The week recovery was the worst. The stoma care was relatively easy after the first couple days. Now we had very little things to worry about. The button (AMT- balloon type) falls out sometimes (twice in the last 1 1/2 yrs). But I can replace it at home in just a couple minutes. The button is not noticable unless he goes swimming. His friends at school have no idea he has a feeding tube. He eats normally (just very small portions) and then gets just one can of pediasure at night through the tube.
The button makes extra feedings a breeze. I don't have to force medicine either- it all goes through the tube. And if he gets dehydrated (rarely), I just add extra fluid to the pump.
What formula is she on?
Are all your supplies paid for through insurance? If not, specialchild.com is a great way to find cheap supplies/formula. :0)
There also are tube feeding support groups (parentsplace.com and yahoogroups).