A new plan

I finally have a clue of what is going on here! Rounds can be the best time of the day and sometimes I wish they happened more then once a day.
Jillian took a bottle around 9am and started choking promptly after. Rounds started around 9:15 and Brent stayed in the room with Jillian because she was choking so much and I went into the hall for rounds. They asked how the night went and I told them that it was uneventful. I informed them that she had been choking for several minutes at that point and they stopped and listened to her choking. They then decided that all breast milk feeding would stop by mouth. She is now on continuous feeding 24 hours a day at a rate for 34 ml/hr with breastmilk fortified to 24cal. She gets to try 1/2 an ounce of water 3 times today but if she chokes she is done with oral intake. The purpose of the water is to keep the eating skills however the volume is not being counted into her needed fluid intake. We are also trying to figure out how to make up for the calories lost yesterday... That frustrates me because she did not need to get as behind on calories as she did but lack of communication caused that.
We also talked about a few tests. I asked about a swallow study to see if she is aspirating and  the doctor told me that she can hear her aspirating just by listening to her so she did not feel that was needed. We also talked about a ph study. The problem with that is it is a second tube that needs to go down her nose. Since Jillian is so little they cant put two tubes down one nostril and she is too little for a tube to go down each side so they said the feeding tube might have to come out to do that test and it is a several hour long test.
The decision was made that no tests would be scheduled until Jillian's GI doctor is back in on Monday (right now we have floor drs) This means we will be here until at least Monday and longer if they decide to run tests on Monday.
There has been a little talk of doing surgery and placing a G or GJ tube. With that she would no longer have a tube coming out of her nose, instead it would be surgically placed in her belly. This would make it less like likely that she could pull it out. She currently has a bridal (plastic piece that holds the tube in place and is looped around the inside of her nose) on her NJ tube to try to secure it better then just tape. I'm not a big fan of the bridal since it hurts her if she pulls on it, however it was placed when the NJ was placed. It is really hard to keep a 4 month old from pulling on a tube coming out of their nose and she hits it with toys all the time. I am not excited about handing my child over to surgeons but the past few days have proven even more that this is not a short term thing and having the tube surgically placed might be the best thing.
Around 9:50 this morning I ended up calling the nurse in to see when we were going to hook her back up to the tube (she had been off for over 2 hours). She came in after a while and told me we would start again and that our care partner would bring in a bag. We got the bag and I hooked up her tube and got everything started. Right now she is in and out of sleep. They brought her a mobile and she seams to like it (its not her animal friends though, which she finds fascinating)  We are just hanging out.
Jillian would also like to note here that she wishes her uncle Seth a very happy 21st birthday. You said you did care what we did today, so she decided that we should spend it at Children's. Next year... make a plan :)

We got a good view this time! I can see the mall :)