Ruby Hope McKee Starling

Ruby had a good day today.

They weigh her early every morning about 6am. This morning, she had lost 225 grams (half a pound!) and weighed a total of 3800g (8lbs 6oz). They want her as close as possible to her birthweight of 2800g (6lbs 3oz) before they will do anything major like taking her off ECMO or performing her repair surgery. (In case you're wondering, they weigh her in grams, so I always remember that number and convert it later when I'm writing it here.) A few more days like that, and we'll be there! And we can already tell just by looking at her today that she'll be lighter again tomorrow morning.

Today they did a chest ultrasound on her to see where most of the fluid is collecting and whether they could drain some of it. She indeed has a big pocket of fluid in the pleural cavity around her right lung (her good lung). This isn't an immediate danger, but she needs to get rid of it before she can start breathing on her own. They wanted to put in a chest tube tonight and start draining it off, but right before they were going to start, a CBC (complete blood count test) came back with low platelets. So they gave her more platelets and will be testing her again at 4AM. It's fairly common for her to get platelets, but she's never had her platelet count be so low. Since platelets are what helps your blood clot, and because she's already on heparin to thin her blood, they decided not to put the chest tube in tonight. We'll wait to see how things look tomorrow morning. Nobody is terribly concerned, just wanting to be safe, since she could bleed so easily right now. Once the chest tube is in, that should go a long way toward draining off the remaining fluid to get her back down to her fighting weight.

They bumped up her sedation (morphine & midazolam) again today. She is getting a serious reputation for being very difficult to sedate... even the doctor has noted it. They started giving her a new drug for "rescues" today, Ativan (lorazepam). It's more of a anti-anxiety drug with some sedative and pain relief effects. She seems to do well with it, but her favorite drug is still fentanyl. She responds to it very well, but it gets absorbed by the ECMO machine's artificial lung, so it doesn't last as long as it should. It may seem strange to be giving a newborn baby all these heavy drugs, but they are in tiny baby-sized doses and it is very important to ensure that she is calm and comfortable. With an extra 4lbs of water weight (at its worst) and all manner of tubes and wires connected to her, she would be very distressed without the drugs. When she is fussing and thrashing, the blood pressure in her lungs is higher and she tends to shunt more. When it's time, they will properly ween her from the sedatives and there should be no lasting effects.

Her urine output is still decent (3-4 ml/kg/hour), but not as good as it previously has been (5+ ml/kg/hour). Normal for a baby is something like 1-2ml/kg/hour. She is still on a continuous infusion of the diuretic Lasix. Her catheter came out, so to measure her output now they have to weigh her diapers. Since changing diapers can upset her, we only do it every 6 hours, unless we think it's so wet that it's already upsetting her. If her urine output starts getting low, we may have to ask friends and family to donate urine.  Please go to your local urine bank or attend a urine drive.

It's a little frustrating that we didn't get to put the chest tube in tonight, but we still feel like we made progress today. Tomorrow we'll know more about her platelet situation and when we're going to drain her pleural effusion (water on the lungs).  Once that's gone, we can probably do the echocardiogram to get a better picture of what's going on with her shunting and heart situation.  That'll be the first step toward either getting her off ECMO or doing the repair surgery. 

And now... PICTURES!

Here's Ruby squeezing the heck out of my finger:

Here's Ruby's tiny little feet on my hand (don't mind the dry skin... we'll bathe her properly once she's stable enough):

Holly lovin' on Ruby to calm her down:

Peek-a-boo! :

(By the way, if you've wondered why her fingers and/or toes glow in some of the pictures, it's the pulse-oximeter, which measures the amount of oxygen in her blood by shining a light trhough blood vessels in her extremities.  As you can imagine, it's hard to keep these firmly attached to the toes and fingers of a squirming baby).