We have heard the alarms go off on her machine ALL day. She hasn't had a very good day. She didn't sleep very well and around 1:00 this afternoon her heart rate began to race. By 4:00 she was up near 200 beats per minute. They want her around 150-160. We had a really hard time getting her to calm down. I began to stress and I could tell the nurse began to stress. He was on the phone with our nurse practitioner quite a few times trying to figure out what needed to be done. You could tell something was upsetting her. It was hard to know what it was since we were trying a few new things with her. We continued to try and feed her by bottle, but she still isn't too interested. 
They taught us to gavage (?) feed her, which is what we will be doing at home. Every other feeding we will try to bottle feed and what she doesn't eat will be given to her through her NG tube. We have to put it in a syringe and let gravity move it into her belly. This way is much quicker than she is used to receiving it through the machine. We were worried it was upsetting her belly, but after a few times she was doing just fine. So, we knew it wasn't her feedings. The nurse finally gave her some tylenol, but she still wouldn't calm down. Finally it was time for nurse changes and our new nurse (which we had last night and loved) came in and said, "it is time to start eliminating things, let's get her something for pain." I hate her being given narcotics, but clearly something was wrong. 15 minutes later she calmed down and has been fine ever since. We still have a few more things we need to get passed off before we can go home, but didn't accomplish much with her having such a rough day today. She did, however, pass her hearing test today. Yeah! 
Jeff and I both passed off CPR and what to do if she is choking with our nurse.
She went up and down on her oxygen all day again. The pain had to do with this. Jeff and I had to give her her medications and feedings today to show the nurses we could do it once we were at home. We still have the car seat test and we have to be taught how to replace the NG tube should it come out. She is scheduled for a sedated echo tomorrow at 2:00pm which means we won't be taking her home until at least Wednesday, depending on how she does tonight and the rest of tomorrow. We are wanting to get home, but really feel she needs to be stable and comfortable before we leave the hospital.
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