Monday, September 24, 2012

Anya is 4 weeks old! & Change of plans...

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 picture is from Thursday morning, I was there when OT came in to try bottle feeding with her. She took 25ml (out of 50ml) at this feeding!! The next morning she took 20ml. I don't know what happened during the afternoon feeds (they try bottle feeding twice a day, to not tire her out), but it seems they didn't go as well as her morning feeds. My biggest frustration over this past weekend: Occupational Therapy (OT) staff isn't there on the weekends typically, so over the weekend that I spent most of with her, she wasn't able to progress with her feeding. Luckily, there was someone there on Sunday and I was there for both of those feeds, the first she took 25ml, and the second one she only took 7ml because she was fussy and sleepy.

Her surgeon gave 3 options to me. Option 1 is that she can get a g-tube at 6 weeks old, and come home with that. I know quite a few babies who have done well with this option, and if she has extended feeding issues that could eventually be an option, but I was slightly offended that it was given to me as an option only 3 days into trying to bottle feed her. I felt like they weren't giving her a chance. Option 2 is going to Mt. Washington Pediatric Hospital. This option is like a "step down" unit sort of option and she would be there is soley work on feeding skills, and that is something they specialize in. Option 3 is staying at UMMC and working on feeding skills with their OT staff (whom I'm already annoyed with). My choice right now is to not choose, I want to see how she does with her feeds over the next few days and then decide. I'm halfway on the fence of standing my ground to bring her home with the NG tube, or to send her to Mt. Washington. With Mt. Washington, I want to see their facility first. I want to know she will still be monitored from a cardiology stand point. I also want to see how many kids/babies she will be "roomed" with, because I want to limit her exposure. Having one roommate at UMMC (and their family that NEVER leaves) is more than enough. With Mt. Washington, Emoree may get to visit her more than she can now at UMMC.

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. 

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