Ruby Hope McKee Starling

First off on Tuesday morning we had one of our favorite nurses.  I love her becasue she likes to clean and oraganize, my kinda girl.  We reorganized Ruby's room.  She also helped me give Ruby a "bath".  Since Ruby is on the vent and has a central line, 2 IV's, and 2 chest tubes a proper bath isn't possible.  We did however get some soapy water and scrub her down as best we could.  I got to touch and see Ruby's back for the first time! 

We have had a lot of visitors in the past couple weeks.  Becca from Austin stopped buy on Saturday to visit her cousin's baby who strangely enough is Ruby's neighbor here in the NICU.  It really is a small world.  Then Amy P came for a visit.  Not only did Amy visit she whipped up some Pousson magic in the kitchen. Grandpa is coming back tomorrow , too.  Ruby is one popular girl.  Once she well enough and cold and flu season is over we might have to take Ruby on a world tour to meet everyone. 

Ruby is also making great strides as far as her recovery goes.  Her chest tubes haven't drained anything in 24 hours.  So, this morning we started her on breast milk through her ng tube for the first time!  If she continues to have no drainage from her tubes they will take them out.  If there is some drainage we'll switch her back to the monogen and leave the tubes in for a while longer.  I'm excited for to her to finally be getting the breast milk.  I have been diligently pumping for almost 6 weeks now.  It's been hard mentally and physically, and I'm happy to see it all might pay off.   The result of her ECHO yesterday was good. The NO has been turned off!  They don't even think she needs the syldenifyl!  Which is good news. Maybe just maybe the PPHN won't be as big of an issue as we all thought. 

Ruby has an MRI scheduled for 3:30 this afternoon.  All CDH babies get an MRI, to rule out any other problems.  I'm glad she's having one if for no other reason than the fact that she spent 25 days on ECMO.  That's long time to be hepranized.  We have no reason to be concerned,  but the chances of them finding something are higher due to ECMO.  She will be heavily sedated for the MRI.  Mostly so she doesn't freak out and to make sure she stays still.  This is why they want to do the MRI before they extubate her.

Now for the big news.  If she looks this good tomorrow morning she'll be extubated!  We've been warned that she might not do well and they will need to put her back on the vent.  Which isn't a big deal, if she's not ready she's not ready.  We'll never know unless we give her a chance. We're on Ruby's schedule and she's setting the pace.  Her docs wouldn't be doing it unless they felt she was ready.  This is a really big deal.  She's been on the vent for 6 weeks.  The only time she had to breathe on her own was the few minutes right after delivery before she was intubated.  She will most likely be on high flow oxygen cannulae to give her some support.  The good news is that she can go home on these if she can't be weaned. She'll still have some tape on her face due to the feeding tube and oxygen, but not near as much. I can't wait to see her with out the huge tubes in the way.

Hopefully Ruby won't have any problems this afternoon or over night.  Tomorrow is another big day for our little girl.  It's amazing how fast things can turn around.  Two weeks ago we were being warned that she might not handle coming off of ECMO or even make it to her repair surgery.  We've still got a long road a head of us and things can change quickly.  For  now though Ruby is a "Rock Star".