I fear that the last time I posted with overconfidence on the subject of Ruby getting off of her feeding pump. Everything had been going along fine until we hit 8 oz boluses. We had been increasing the amount by 1 oz per bolus every week and she had NO difficulties. Then we hit 8 and she started projectile vomiting. After a few more attempts it was clear that it was not going to happen so we backed down to 7 oz. But ever since we tried 8 and she vomited, she has been grunting and straining to push the food back out of her stomach and into the syringe which have turned feedings into a complete struggle. So now we are back down to 4 oz boluses...where we started. And she still has some trouble allowing those feeds to go in smoothly :(
All of this has got me down. Really down. I was so happy about her reaching the 8 oz goal. It meant no more feeding pump...EVER. But that is not the case. And worse it seems like we might have ruined the whole bolus feeding experience for good. I'm afraid this has worsened her oral aversion as well. She seems to think it a negative thing when her tummy starts feeling full, which was the exact opposite intention of switching to boluses. She has not been eating much at all these last few weeks. It's been a big deal if we can even get her to taste again. Sadness all around.
I'm really really hoping these changes won't stick and that she'll get back on track with her feedings and with eating soon. It's so hard to see her falter and not know what to do to help her. I'm tired of it. Tired of every meal being a battle. Every feeding a nightmare. I know I should be grateful for the progress she has made and rejoice in things like her being off of the pump during the day, but right now I'm just bummed. It never seems to get any easier even when it does. She is dealing with food so much better than she was this time last year and yet the distance between how she interacts with food versus most other children still feels so very far.
Anyways, I don't have too much time to edit this or finish off in a nice way...just wanted to explain what's been going on lately. Let's hope for better days soon.
Kerry, don't get too discouraged. We never made it past 5oz bolus feeds and Jordan was over 2 when we were doing them. She was off everything and eating by mouth completely when she was 2 1/2. I don't know who makes the rules that children have to be able to handle 8 oz in their tummy at one time. These babies never had the chance to stretch their little tummies like a "normal" baby. A normal baby goes on a need basis and doctors think that it will work the same for our babies. Not! It just doesn't work the same. Jordan never ate enough until we reduced her tube feeds. There has to be some hunger involved before a child is willing to eat. When she started eating by mouth she almost gave up on liquids. I was lucky if she would take 4-5 oz in a full day. But we made it and Ruby will make it too. Just don't force it. It will come. Sorry she hit the wall but at least you know where her wall is now. Give her a few day and then take your cues from her.
ReplyDeleteTake care,
Pam