Ruby Hope McKee Starling

Ruby is indeed having a boring day. She's been very calm and cooperative, and in fact we've been able to touch quite a bit more today. We've even been allowed to put some booties on her! Although we are very excited to have some stability today, we know that it is only a temporary thing. She is so stable because machines are taking care of her major body functions. There will likely be some very rough days when she goes back off ECMO and when she has her surgery to repair her diaphragm. We have no idea when she will have her surgery and neither do the doctors. There isn't a single factor or measurement they use to determine when to do the repair. They just wait until the time is right and then get it done very quickly. Most likely, we will only know a couple hours in advance. We're fine with that. The surgery itself is relatively straightforward compared to the balancing act of the ECMO machine and keeping her stable. I suspect they will give her at least 4 or 5 more days to rest. They may even decide to do the repair while she's on ECMO, since she's already on life support and won't have to worry about her heart or lungs. But I don't want to get ahead of ourselves. We're just glad to have a "rest" day today. The doctors didn't want to change anything, so Ruby's just taking it easy and we're taking advantage of the calm. We got a good night's rest in the family sleep room, and Holly took the time to go take a 1-hour nap this afternoon in one of the nap rooms they have up in the family resource center.

But on to the thing that people really care about... PICTURES!

First, I should note that Ruby had a nosebleed so there's a little crusty blood around the vent tube tape. It's completely, 100%, A-OK. Do not worry at all about it. It just looks a little funny. They cleaned her up, but it's not worth the medical risk to un-tape the vent tube for what is essentially a cosmetic issue. I have a tendency for nosebleeds too, so I can totally relate. They removed the nasal-gastric tube that was there and routed a new one in through her mouth. This tube keeps her stomach deflated. With that disclaimer out of the way...

Here is a SMILING Holly letting Ruby squeeze her finger. The red tubes behind her ear are the ECMO lines and provide her oxygenated blood and remove CO2-laden blood.

Here's Ruby squeezing the daylight out of Holly's finger (below). You can see she's puffed up a bit from the extra fluids associated with ECMO. This is an expected side-effect. She actually only gained 600grams from this (about 1.2lbs). It is common for a baby to gain as much as 2 kilograms (4.4lbs) their first couple days on ECMO, so the doctors and nurses and perfusionists are very excited about this. For now she's not on any diuretics, though she may eventually be. Her weight right now is 3.4kg (7.5lbs).

And now I'm going to geek out a bit...

This is Holly at Ruby's bedside with Ruby's hardware collection. I believe Ruby takes after me in this regard. (I collect old computers and videogame systems and Holly's always lamenting my "junk".) Here's a quick tour of what we see in the picture, bearing in mind that I have absolutely no medical training and don't know the right names for some things. So this is really more like a tour of Ruby's hardware as Chris understands and interprets it:

Ventilator -- directly behind Holly. You can't really see this, but it's what provides oxygen and nitric oxide to Ruby's lungs and also to the ECMO machine (I think, but maybe I'm wrong). There's also a cart with the O2 and NO tanks on it.

Vital Signs Monitor -- This is the square black screen with colored lines above Holly's head. It monitors pulse (green), respiration (yellow), oxygenation (blue) and a few other things and beeps and flashes when things exceed a specified threshold. This machine was the bane of our existence for the 3 days before Ruby was on ECMO. It was what would tell us if her circulatory system was shunting. The nifty thing about these is they're on a centralized computer system so if nurses are sharing care for each others babies, they can do a split-screen with two babies on one monitor. It gets recorded, so they can pull up the history for the past couple hours (or days even?) on their desktop computer.

Baby Warmer & Thermometer -- hanging on the bed directly over Ruby's bed. It keeps her toasty, since she's basically laying there naked.

IV Tree -- this is what I'm calling the vertical poles under the clock with the IV bags, bottles and little beige boxes that have a green face on them.

IV Bags & Bottles -- they contain, among other things, her "HAL with Lipids", which the intravenous food she "eats" until her stomach is no longer crushing her lungs. In Philly, we call it "HAL wit Lipids". You can't get cheese wiz on your HAL, though.

Syringe Pushing Machines -- these are the funny beige boxes with green faces on the IV tree and they're pretty cool. The nurses load a syringe on these and program them with a dose and they meter out tiny, baby-sized doses of meds into her bloodstream over a specified period of time. These contain things like morphine, versed, antibiotics, dopamine, heparin, and whatever else the doctors feel she needs at the time.

ECMO -- This is the cart of things that fills most of the righthand side of the picture. The pump is the silver box and the "lung" membrane is the white canister. I'm not sure what the white box is... power supply, maybe? It has some cool touchscreen displays and it's own little IV tree with a couple of those nifty beige syringe pushing things. The red tubes coming out of this machine go directly into the arteries and veins near Ruby's heart and lungs. We are very protective of these, since any bump or jostle could be very bad. The ECMO perfusionist jumped all over an x-ray tech who she felt wasn't properly respecting them while taking an x-ray of Ruby yesterday, so we're not out of bounds.

Any medical professionals that happen to read this are probably laughing at my explanation of things, but that was kind of our view of all the hardware.

Ok, I've already written more than I intended... more later!