Ruby Hope McKee Starling

The past couple days have been great having Ruby in our apartment with us.  It's hard given some of her special medical needs, but worth it.  We've just about got our routine down.  Ruby has managed to keep us on our toes.  Yesterday during her 6am feed she decided to pull out her ng tube.  Chris and I had fumble around to clamp off the tube so milk wouldn't get into her lungs.  Since she pulled out the tube, we  had to one back in.  It was quite a way to start the day.  All in all Ruby is a pretty easy going baby.  She lets her opinion be known, but for the most part she's content to play with her hands.

Now for an update on the one thing that keep us here Philadelphia. Ruby's repair incision was looking slightly better yesterday morning, but it was draining fluid.  I decided to go ahead and call her surgeon's clinic and try to talk to a nurse.  I didn't want to go into the weekend without having someone look at it.  I hate having to call the after hours services.  I figured I'd be able to push things more on Friday afternoon then at 10pm on a Saturday night.  Our surgeon was out of the office yesterday, but the Nurse Practitioner spoke to her.  The NP had me bring Ruby so she could take a look at what was going on.  Good news is that the NP thinks it's just some stitches working their way out.   Which is what the surgeon and neonatologist said on Monday before we were discharged. On Monday the site wasn't draining fluid, so I was getting concerned. The NP gave Ruby a script for Septra.   I wouldn't be so concerned if Ruby didn't have a gortex patch in her diaphram. While we waited for the script to be filled we stopped by the NICU for a visit.  Although we just left Monday, I though it would be nice to see some her nurses and ECMO specialists.  Plus it was hard to be at CHOP and not say hi to all the people who helped Ruby.

The only true headache of bringing Ruby home has been dealing with the medical supply company.  They didn't send half of what we needed, and what they did send was ment for adults.  The feed bags we got hold 1liter of fluid, Ruby gets 80ml.  Luckily her nurses sent us home with more than enough supplies.  I'm hoping that once we get to Texas I can switch supply companies.

Here's a picture of a very happy Ruby.