Ruby Hope McKee Starling

Ruby had a great night.  At rounds this morning, they decided on a few more "baby steps" to take today.  Her blood gasses are all good, so they're weaning her ventilator rate down to 30 breaths per minute.  A baby normally breathes around 40-45, so she'll have to do some work and breathe an extra 10 or 15 on her own now.  She's always been pretty good at "breathing over the vent" as long as she's not too sedated, so I'm sure she'll do great.  They're reducing her Versed sedative today, but I'm not sure by how much.  She's going to have an echocardiogram today to see what's happening with her heart and her pulmonary hypertension.  If that all looks good, they'll reduce her nitric oxide down to 10 parts per million.  She's currently on 15ppm, which I think I forgot to mention.  Her original dose was 20ppm.  We're still not sure if they're going to start her on sildenafil (Viagra), which would produce nitric oxide in her bloodstream and dilate the blood vessels in her lungs.  It's not as effective as breathing it directly, but if she doesn't need as much nitric they can send her home on sildenafil, which she can just take orally.   

We're increasing her feeds from 10ml to 15ml today.  She's still having some chyle (fatty lymphatic fluid) in her left chest tube, so she's still on Monogen, a low-fat formula, for the time being since the fat in her mom's milk would make the "chylothorax" (lymph fluid leak in her chest cavity) worse.  She's getting lipids intravenously, so there are no nutritional concerns.  The chylothorax should heal on its own and we'll know it when her left chest tube stops producing fluid.  The chest tube on her right side hasn't produce anything to speak of in a few days, so we anticipate they'll want to take it out sometime this week.  She currently has at least 7 tubes going into her.  As they go away I'll be sure to mention it and we can have a "tube countdown".  The ones she's already gotten rid of are a foley catheter, the 2 ECMO canulae in her neck and the arterial line that she kept pulling/kicking out.  After replacing it a couple times in different locations, the nurses finally relented and left it out.  But now they have to do heel sticks to get specimens for blood gas tests.  There is a consequence of being so feisty!  She usually handles it fairly well, though. 

I changed her diaper this morning (my third time for me now) and she was wide-awake.  She has started moving her hands to the center of her body now.  She is able to touch her hands together and has discovered putting her fingers in her mouth.  We saw her sucking on her thumb prenatally in several ultrasounds, but she's been too swollen or sedated to do that again until now.  We tried giving her a pacifier to see if she'd suck on it and she did for a little while but also seemed a little confused.  She still has her endotracheal tube as well so that's a lot of stuff for a little mouth. 

Lots of little improvements are really starting to add up!  Every time a nurse or doctor visits her who hasn't seen her in a while, they are really pleasantly surprised at how good she's looking now.  I have to go back and look at older photos to remind myself of the progress. 

I didn't take any photos this morning, but here's one from last night of Ruby snoozin' away: