Ruby Hope McKee Starling

The sedation weaning is finally catching up to Ruby and she has been angry at the world.  We haven't changed her morphine or Versed in a couple days (still 1mg and 0.8mg po q3), but the level of the drugs already in her body has finally fallen to the dose she's currently at and in the mean time, she's gaining weight so the dose per kg has gone down a little as well.  Last night after breastfeeding, she weighed 3370g -- about 7lbs 7oz.  We actually weigh her before and after each session to see how much she has gained so we know how much she has eaten and how much to put in her feeding tube to get her a full meal.  It's a tricky procedure to measure just a few grams difference in a wiggling baby, and I'm glad we have a professional chemist on the team to help out with the precise analysis (aka Holly).  When I feed her, the bottle has graduated markings on it, so I can just look at the bottle to tell how much she's had.  Yesterday during her two PO feedings, she took 16ml from the bottle and 6ml from mom. 

Ruby really started feeling the withdrawal yesterday and was quite fussy yesterday from about noon to 3pm.  After a particularly dramatic episode where she was inconsolable for 20 minutes, the neonatologist decided she ought to have a rescue, so they gave her a little extra Versed.  That was enough to get her through the rest of the day for the most part.  It is still rather cute and novel to us when she's upset, though I'm sure that will wear off.  After her 9pm feed, I was holding her when she got fussy (perhaps she was refluxing a little) and she spit out her pacifier.  This made her upset so she started flailing her arms and proceeded to toss the pacifier onto the floor, which just made her even more mad.  I think we've all had one of those days.

This was from a few days ago, but is a good representation of her mood lately:

In spite of all this, Ruby managed to make great progress on the respiratory front yesterday.  We reduced her oxygen flow from 1.5 liters per minute down to 1.0.  Her oxygen is still at 25%.  At these settings, she is basically doing 90% of the breathing work her self already.  In fact, yesterday Holly said that Ruby was finally sound asleep after a fitful period and so she sat down at her bedside to do some knitting.  After a while, she looked up and noticed Ruby's SPO2 (the amount of oxygen in her blood) was hovering around 92%.  She thought it was odd and asked the nurse what she thought.  They were both a little puzzled, since Ruby has been solidly in the 98-100% territory ever since she was extubated, even when she's crying.  Upon further inspection, Ruby had decided she no longer liked having the nasal canula taped to her face and had ripped it off and flung it aside!  They weren't sure how long it had been that way, but overall she was getting along pretty good without the extra help.  So I suspect that in a few more days, she'll be breathing unassisted.

Now that she's breathing well and making progress eating, we're beginning to focus on less life-threatening things.  Her acid reflux hasn't been bad, but we're trying to be very careful about positioning her during and after mealtime everything stays in her tummy.  And speaking of positioning, our other focus now is managing her head position and getting lots of tummy time to ensure her head is shaped correctly.  Because she was immobilized with her head turned to the left while she was on ECMO, she has a little bit of a flat spot on the left side of the back of her head.  We're hoping it's minor enough that if we stay on top of things she can avoid having to wear an orthpedic helmet.  But we'll be very happy to have her wearing a helmet or have her with a flat spot on her head, as long as we have her.