Ruby Hope McKee Starling

Ruby has been making slow and steady progress, and there hasn't been any big news to report.  To sum it up, she's had a little more of the good stuff and a little less of the bad stuff, but not major changes.  It's becoming very apparent that the last thing keeping us at CHOP will probably be the sedation wean.  It has taken us 7 days to get to day 5 on the 21-day sedation wean.  Her current dose is 1mg of morphine and 0.8mg of Versed every 3 hour.  The nurses let us squirt it in her NG tube before we give her milk through it.  It sounds funny, but being able to administer her medications makes us feel like we actually are parents, even if we're giving her strong opiates and tranquilizers.  Now that she's no longer on IVs, we have pretty much taken over all of Ruby's routine care, with the exception of drawing blood and taking blood pressure.  When nurses are caring for two babies at once, they try to pair an "easy" baby with a more sick and difficult one.  We recently realized that Ruby is the easy baby. 

She has been fairly cranky in the past 24 hours, so we doubt we'll wean the morphine down to 0.8mg this morning like we're scheduled to.  We don't like to see her cranky, but every day we don't wean is another day she doesn't get to come home.  She's doing good, oxygen-wise.  She's still at about 25% oxygen at 1.5 liters per minute of flow.  We have recently challenged her with both 25% at 1 liter and 21% at 1.5 liters, but both times she was working a little too hard to maintain her oxygen saturization, so we bumped her back up.  There's no point to make her work hard to get off the O2 if we still have to wait around for her sedation wean.  Plus, that little extra help may assist when she's really feeling the loss of her drugs.  If we're doing something that we know will upset her (like taking a bath), we'll bump her O's up to 30% temporarily just to make sure she doesn't desaturate from all the inevitable crying and screaming.  Holly and I still marvel at hearing her voice.  We'll see how much longer that novelty lasts.  But for now, we're among the few parents in the hospital HAPPY to hear their baby cry. 

Ruby is doing awesome on her feeding.  I give her a bottle in the morning and in the afternoon or evening Holly breastfeeds her.  She gets more out of the bottle but clearly enjoys the bonding time with mom.  The speech therapist has been coming by the observe and listen to Ruby with a stethascope while she feeds.  I was a little confused when they said the speech therapist was going to visit, but since speech therapists are intimately knowledgable of the mouth and tongue and throat, it makes sense that they treat and prevent disorders involving sucking and swallowing.  Thus far, the speech therapist has always said that Ruby is doing great and is getting all the muscles to do what they need to in order to breathe, suck and swallow all at the same time.  It's a lot more work for Ruby, since her lung capacity is lower than it should be, so she breathes heavily while feeding.  The Speech lady compared it to running up a flight of stairs while drinking a glass of milk.  But so far, she has been taking more and more each time.  For the meals that she has a P.O. (by mouth) feed, she is getting around a quarter to a third of her meal Per Os.  We then put the rest in through her NG tube. 

Here are some recent pictures:

The rattle socks are still a wee bit too big, but they'll be lots of fun soon.  They were a good distraction after having blood drawn.  Note the bandaids on both arms -- she might have inherited the "hard to draw blood" gene from her mom.

This is Ruby's outfit today.  She was trying to decide if it makes her look too fat:

Snuggle time with Mommy makes the cranky baby happy: