After waiting patiently for 3 days, GI finally called to follow up. It was a wonderful phone call.
First, she told me that Averi could be switched off of the Elecare and back onto breast milk. Secondly she said that her throat is healed so we could take the J-Tube out and replace the Mickey Button. Thirdly, the swallow study went well (duh, I was there) and we could start giving her 10 ml of water in a bottle every day until we met with an Occupational Therapist (OT) which she would make a referral for. I was so excited!
That night Dan decided to make a video of Averi having her first bottle. In case you are wondering, no, I will not be posting that video. She chewed on the nipple (thank goodness I didn’t try breastfeeding right away), gagged, spit, blew raspberries…oh, and swallowed 4 mls. Notice I didn’t list suck. It is definitely going to be a process.
A few days later, after playing phone tag with just about every department in the hospital, I found out that, if I was comfortable with it, I could just take out the J-Tube at home and put the Mickey Button back in. I decided to wait until Dan came home, just in case something went wrong, and he again took a video that I will not be posting. The tube had a ridge around the end of it, to prevent it from coming out accidentally, which made for some irritation, bleeding, and screaming when it was removed. Her stoma was sore for several days but it is finally starting to look better. Did I ever mention how much I LOVE the Mickey?
We then did some more waiting and went in on Monday the 21st for an OT evaluation. She said that right now we need to work on sucking a pacifier so that Averi can get used to having something in the back of her mouth (she has a crazy gag reflex) before she can try to suck-swallow. We can also dip her pacifier in milk or put rice cereal on chew toys so that she will taste it and be motivated to put things in her mouth. Once the evaluation is put into the system we will start going to OT once a week.