The date was set. Anya was to come home on Tuesday, as in tomorrow. I went out and bought a new pack-n-play (since sadly Emoree's that I had kept in the attic got ruined), got the swing set up, the bouncy seat, filled the diaper stackers with little preemie diapers (she is still under 6lbs), I picked out her dress that she would wear home, everything is ready. I was going to stay at the hospital over the weekend to learn how to use her NG feeding tube and administer her medications (she is on 9 different meds!). I got to the hospital on Saturday afternoon, and wasn't informed about this change of plans beforehand. Anya isn't coming home tomorrow. She was marked by OT as "poor PO feeds" (which means she didn't take to bottle feeding well), and somewhere along the way they changed their minds about letting her come home with the NG tube. They have also now decided she may have reflux issues (which many HLHS babies deal with), because her sats drop a little after feedings. She will possibly have a swallow study done this week.
This will make anyone an expert at changing diapers. Yea, just try and change her stinky diaper around all of those wires, and not being able to remove them. That is what I spent my weekend doing, its one of the only things they LET me do with her.
Here are some pics from Anya & I's weekend together... we spent most of the weekend cuddling and playing dress up :) I hate that all of my pics lately are from my phone... but at the hospital its easier than lugging around my SLR camera. I cannot wait to have her home and take a million more better quality photos!!!!
I just called to check on her this morning and they are going to see how she does without the nasal cannula today (yay!! no more oxygen hopefully!), and OT is going to do her 11AM feed and another in the afternoon. They are starting her referral to Mt. Washington, even if we decide to not go there they said they want to have it ready. Her surgeon wants to give her 2 days to see how she does with feeds and then re-assess her, and I agree with that.