Ellie has had a great week with her feedings. During the last two days we have been close to our new goal of 300 ml each day. If we can keep this up, we will pare down her TPN a little bit further at the next clinic visit. We are still managing to give her a few bottles during the day but the majority of her food is coming through the pump.
This change from an all oral feeding plan comes as a result of of a good conversation that we had with a very wise, experienced SBS parent during our Thursday visit to Children's. The way she sees it, the TPN is the greatest evil for these kids, followed by a possible oral aversion if they don't learn to eat by mouth or have bad experiences with oral feeding. You can have the best oral feeder in the world, but if they don't eat enough they will need to stay on TPN.
The other mom made a very logical point that if we could get rid of the TPN using the tube feedings the switch to oral feeds will happen. But if we can't get her feeds up, we will never get off of TPN. Regardless of what Omegaven does, getting off of TPN is the top priority.
Feeding Ellie through the tube is a much more effective method to build her feeding. She gets full after about 40 ml of milk through a bottle and then can't have another one for two hours while she deals with the big quantity of formula. This allows us to get about 6 or 7 bottles into her each day after the time for her beauty sleep and naps are taken out. This gets us to 240-280 ml per day if she coorperates and drinks every bit of every bottle. Most days we topped out around 230 ml.
After changing to a combination of bottles in the morning and at night and the pump all day, we care able to get much more milk into her. The slow rate keeps formula going into her without making her very full which enables us to get 40 ml into her every hour without any ill effects. This effectively doubles her feeding during the day. Without much thought or the endless attempts to get her to eat, we can get a lot of formula into her which is a big step in the right direction.
Now if we can get her stomach and bowel to keep working after she has gone to bed. For some reason her bowels shut down afer bedtime and her tolerance for food goes down to 3-4 ml each hour as she sleeps. we tried ast 5 last night but got a nice barf this morning. Barf isn't any fun.
Onward and upward.
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1 comment:
If you keep some oral stimulation going then transitioning to oral feeds is not all that difficult when your child is older. I was able to get my son off of his G-tube with out a lot of fuss.
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