“Lock Shutter”

The setting on our camera that prevents you from thinking you took a picture when there is no memory card is called “Lock Shutter”.  For some reason, we had turned it off months ago – when I was at the hospital today, I took what would have been several great pictures of the kids.  Turns out there was no memory card in the camera, so you’ll never get to see them!  When I went to show the pictures to Bethany (still stuck at home) and found that the memory card wasn’t there, I changed the setting on the camera to avoid that in the future!

Both of them are doing well again today – we’re certainly thankful that over the last week, we’ve had slow positive progress to report.  I held them both together again today for several hours – they are such characters.  Josiah stayed awake much longer today and was much more curious than he’s been the past few days.  When they start their feeding pumps (which pump directly into their stomachs), it’s funny to watch the kids’ mouths move – they don’t need to do anything, but their little bodies have instinctive responses that are amazing.  Both Josiah and Lilly got some mileage out of their pacifiers today too – more progress towards feeding on their own and coming home.

My visits to the hospital yesterday and today were frustrating.  The first week in the hospital, the staff was excellent at letting us know what to expect and what might happen.  Recently, however, our information comes only from our interrogation of the staff.  As we get away from some of the medical stuff that is more black-and-white and into the subjective things (when to start feeding them, when to hold them, etc), we are finding inconsistency from nurse to nurse.  That makes it nearly impossible to know what to expect with each visit which, in turn, makes it more discouraging.  Educating ourselves as to which items are safety/health/well-being decisions, which are hospital policy, and which are the nurse’s preference that she passes off as safety or policy has been exhausting.  On more than one occasion, we’ve been told something is for the babies’ safety when it turns out it was just for the nurse’s convenience.  After those experiences, trusting anything any of the nurses have to say becomes very difficult.

There are many small things that would be insignificant on their own but are building up to become a big frustration.  Today, the nurse thought Josiah and Lilly were both girls when I called to check in on them this morning.  I corrected her but when I got to the hospital, she again thought they were both girls.  I understand simple mix-ups happen but if she missed that, what else has she missed?  Or yesterday: Lilly’s oxygen level was lower than normal when I got there – the bean-bag head positioner they were using to support her head ended up over her mouth so it was restricting her breathing just enough to cause her levels to dip a little.

There are many other little things like those – and we’re not really sure where to go to address them.  The nurses change from day to day, so addressing any specific nurse does no good.  Our experience with the nursing managers and other staff has been that their concern is to calm parents down, not to actually discuss issues.  We can certainly push things with them, but they wield a significant influence over the care that Lilly and Josiah receive – we’re not ready to become their enemies just yet.

Bethany expects to be well enough to go back to see them tomorrow – I really hope so!  I know that a significant portion of my frustration with the staff and hospital is just that I’m tired of not being able to bring them home.  I expect all four of us being able to visit together at the hospital will make things better and renew my patience for waiting this out.