A new floor

Today we had a 12:30 visit with GI to discuss Jillian's choking and vomiting. She proved to us once again this morning why we needed to come when she puked everywhere for the second morning in a row. My mom joined me at the appointment. We did the typical first. A weight check (she is up to 12lb 12oz), length (24im) and head circumference (I did not pay attention...ops!). Then we were visited by someone who I think is like a CNA or something. She asked a few base questions and then a nurse came in. I filled her in on everything that has been going on. She then left and reported everything to the doctor. The doctor came in and verified what the nurse told relayed to her and took a quick look at Jillian. She then said that we could not continue like we have been and that she needed a NJ tube (this is a tube that goes into the intestines  instead of the stomach). She then said something about getting paperwork started and a bed. My mom and I looked at each other a little confused about what exactly was going on. After a few minutes the doctor came back in and said they were securing a bed for her to be admitted and that we needed to head to radiology to have the tube placed (Because these tubes go into the intestine they have to be watched being placed). We then left GI and headed to the hospital section. (Children's here is all connected, GI is in the clinic building and radiology and patent room are in the hospital. The two are connected by a skywalk)
We got to the skywalk check in desk and GI was calling my cellphone. They said that radiology had a 2 hour back up and that a bed was not ready for us either. We had not had lunch yet so we decided to stop at a bathroom and head to cafe West in the hospital. I barely got a few bites into my lunch and GI was calling again letting us know they had a bed secured and once we were done with lunch I should head to admitting. Within a few minutes of that the loudspeaker in the hospital announced that the parents of Jillian needed to call a certain number. I then went to the desk and asked where a phone was to call that number. They told me there was a phone around the corner. I did not find a phone around the corner but I did find the admitting desk. I then went and checked in with them. They said that it would be another 10 minutes before her bed would be ready but that I needed to bring Jillian into the admitting office to get her a name badge. As I was walking out of the admitting office I was greeted by someone from radiology. Apparently admitting was not the one who paged me, that was radiology and they came looking for us since I told GI that we were in the cafe. She told me they were ready now for Jillian. I ran Jillian back to admitting quick to get a band and then headed to radiology. We checked in (this took a long time because the orders were for us to have the test done once we were in the hospital and she was still yet to have a bed) and had us wait. They then called Jillian and I back to a work room where many people came and explained what would be going on and I signed consent. Jillian was not too pleased with this process of people talking to me and let us know, however they provided sugar water for her passy so she was tolerating it. I then had to hand my baby over to complete strangers and go back to the waiting room with my mom. It took a lot to not sit in the waiting room and cry. My mom and I watched Lady and the Tramp as we waited. Eventually the radiologist came back and said it went well and she would be out shortly. After a while a nurse came out with her and escorted us up to West 11.
Once on the floor we had a care partner come in and start Jillian's vitals and the nurse came in. We then sat for a long time seeing no one. After a while the nurse came in and went through the long list of admitting questions. We also had the first resident come in and do a physical exam on her. After a while again a second resident came in and took Jillian's history and did a physical exam. Around 7pm we were finally given the go to feed Jillian a bottle of 45ml. She took it like any other bottle (not like she had been starving, which she should have been since she had not had any food since 11am).
It is now around 10:45pm and we are still waiting on orders to be figured out for feeding. They are talking about a continuous feeding schedule where she is hooked up for 21 hours of the day with three 1 hour brakes. Jillian is sleeping comfortably like none of this is going on, which is a blessing that she is not screaming but it is also concerning that a child who should have been hooked up to a feeding tube for 3 hours now is not asking for any food, plus she missed one of her bottles today.

It is now 10:50 and the nurse just came in wanting to start her on just plain breast milk going into her tube because she thought she needed 24 cal Alimentum. We explained to her how you fortify breast milk and I looked up the recipe online for 24cal. We then mixed it and she set up the pump (we had to explain to her how to set it up and still there is a bag with  150ml in it with a pump set at 3000ml and a bag with a ton of air in it). We are running at 30ml/hr. Hopefully this helps! I will try to keep posted as things go on. We have no idea how long we will be here or what the plan is right now. There has been a little talk about a few tests that if they decided to do them would have to wait until Monday because the appropriate people are not in on the weekends but we will see. For right now we wait... and try to get some sleep!