Ruby Hope McKee Starling

Yesterday was a Versed wean day.  She was already at 0.2mg every 3 hours, but administering a 0.1mg dose orally is a little tricky.  So we kept the dose the same and started giving it every 6 hours now, instead of every 3 hours.  The Versed weans are always easy, but we took today as a rest day and didn't wean sedatives.  She is still getting over Wednesday's morphine wean from 0.4mg to 0.2mg.  Weaning the big M is always difficult and that was a 50% reduction, so it definately hit her hard.  But this time around was a little different.  Instead of being fussy and crying frequently, she's been WIRED for the past 48 hours.  She was up late Wednesday night and then Thursday she woke up at 5am and never went back to sleep.  She took a few brief cat naps, but was awake pretty much the entire day and well into the night.  She wasn't agitated or irritable.  In fact, she was downright happy and cheerful.  But she just had absolutely no interest in sleeping.  She just wanted to play and watch what was going on in the NICU and interact with people.  We tried leaving her alone with no mobile or toys, thinking she might relax and sleep if she had less stimulation, but she just quietly laid in her crib, happily playing with her fingers.   We finally gave up and went home around 11pm, since we were having trouble staying awake.  The nurse said she finally fell asleep about 1am.  Thankfully, she slept all through the rest of the night and into the morning.  She napped frequently today and caught up on a lot of her missed sleep.  Sometimes babies in  the NICU get their night and day flipflopped, but we can deal with that later and mroe easily once she's off so many drugs. 

We postponed her PO feeds until later in the day, since sleeping was more important.  But at 9pm tonight she took her biggest bottle ever -- 39ml !  I thought we werne't going to get to do a bottle feed because she'd beel asleep in my arms for over 2 hours.  But she woke up right on queue and was ravenous!  She did that 39ml all in one go without stopping.  

There was some concern earlier in the week because the Infectious Disease doctors came by and painted a very grim picture of the infection situation.  It's their job to track infections in the hospital and to ensure that the right antibiotics are being used for the right amount of time and to prevent the spread of diseases between patients.  They wanted to draw out some of the fluid from the tiny pocket of fluid to identify what bacteria it is.  They also said that they think we might need to cut Ruby open and replace the Gore-Tex Patch on her diaphragm because it might be infected.  Needless to say, this really upset Holly because it'd mean she'd have to be intubated and we could lost so much of the progress we've made on feedings and sedation.  However, today at rounds the surgeons and neonatologist basically blew them off and said they were taking their suggestions into account but that because her white blood cell count and CRP levels were back into the normal range, they were going to assume the antibiotics she's currently on are working and she will just continue them until a full 7 day course is complete.  We switched her from Gentamycin back to a Keflex, I believe, because Gentamycin has ototoxic side-effects, meaning it can cause hearing loss.  So no sucking out the fluid and culturing it, no unnecessary surgeries, no replacing the patch, no being intubated again and no loss of progress.  Needless to say, Holly was pretty frazzled by it all.  I like the idea of having the Infectious Disease doctors helping us fight Ruby's infection.  They're basically like a quality assurance team that plays devil's advocate and ensures we're proceeding in the best ways to fight and prevent infections.  And it's great that they have differing opinions on things sometimes, afterall that's what drives science and medicine.  But I really wish they'd talk to Ruby's attending doctor before they start spouting off about replacing patches and extra surgeries in front of the parents. 

I don't have any new pictures at the moment, so here's another good photo from Wednesday's bath.  Holly thought this photo really highlights how much Ruby looks like her grandma: