And....

SSSSSSSSSSSLLLLLLLLLLLLLLLOOOOOOOOOOOOOOOOOWWWWWWWWWWWWW Day here. I was hoping for more tests however we really did not do any.
Jillian choked on her 15ml bottle at 9pm last night and continued choking off and on for a long time. During the night she developed more of a cough and my mom and I sat straight up multiple times during the night. Around 3:30 the coughing was so bad that mom decided she would just stay up with her. I got up at 5 to pump and took over so mom could get some sleep til a little after 7.
The morning started out like any morning here... with a lot of visits from different doctors. We talked about several different things with genetic disorders and feeding concerns. I brought up that GI had mentioned on Friday about the possibility of  a GJ tube to see if the tube in her throat was making it worse and the doctor said we would talk about it at rounds but we did not. I don't want to seam like I am begging for my child to have surgery but if that is something that is going to help her then I am at the point that we need to consider options that might help. When the team came in for rounds they said that they wanted to try mixing rice cereal into my breast milk and give her that in a bottle. We also decided that she would get more stool softener and suppository today  since she was not seaming to regulate herself yet. Lastly we decided that since Jillian was coughing, and had green gook coming from her nose and eyes that we would test to see if she currently has some sort of viral infection going on that we might be able to catch or help before it got too bad. It will be a little while before we get those test results back. Until then we are in isolation now so everyone that walks in gets to get all decked out in gowns and masks. I feel bad for them.
Jillian got her bottle of 15ml of fortified breast milk with 1/2 tsp rice cereal around 12:30. She took it down just fine like normal, the only difference being that it took her a little longer because she was drinking thicker milk through a size 1 nipple. Shortly after she was done eating you could hear her refluxing and then she started choking again. The nurse came in and she said she could hear her refluxing from the door. Jillian was able to keep the food in but she had to work very hard at it and was very crabby. Around 4:30 she started refluxing again (she had not taken anymore orally since 12:30) and started choking. She has been refluxing on and off all night and choked again while she was playing in her crib after getting ready for bed. For now we have gone back to nothing by mouth.
After the 12:30 choking we decided to do a 24hr pulse ox study to see if she is table to keep her numbers up while choking. So far she has been pretty good about keeping her numbers up and has only gone off a few times when the machine was not also reading low reading. Pulse ox is so hard to take on little ones.
Today we had some visitors.  My mom came up last night and spent the night with Jillian and I since Brent headed home last night so he could work today. She had taken today off to go to genetics with us and instead just spent the day hanging out with us here. She is so amazing! She also ran to Target for me to get me some more leggings and plain T-shirts and to get Jillian a few more outfits that snap all the way from head to toe and don't have feet. The gowns here are way too big for Jillian but they need to get at her often so it is easier to have her in a quick opening outfit.
Our friends Gary and Kathy came up this afternoon and hung out with us. Brent came back up after he got done with work today. Tonight our friends Jaime and Jason came over and mom hung out in the room with Jillian while the four of us went to Cafe West for dinner. It was so nice just to talk and pray together.
Jillian ended up spending about 85% of the day sleeping which is not like her so I know she is fighting something. She just wanted to be held today and I figure with everything we are putting her through right now that is ok, it is just going to be hard to break her from it when we get home because she will not get held like this at daycare.
Well I am going to follow the advice of when a baby sleeps you should sleep too!