Ruby Hope McKee Starling

Yesterday morning started out kinda rough.  Ruby woke-up at 4am with a blow out diaper.  I run at 5:30 am and missed out on my last half hour of sleep.  Thankfully she went back to sleep in her swing next her sleeping Daddy.  In my early morning rush I didn't notice that she had poop in her hair.  Once I got back from my run Ruby got a bath and we to had rush out the door for her hearing  test.  During the craziness known as getting Ruby in the car my wallet fell out of my purse. To make a long story short the nice girl at Starbucks gave me a free Latte and Chris had to meet us at the ENT's office.   Never a dull moment.

Ruby had her 6 month hearing test yesterday.  She'll get it tested every 6 months until she is three.  ECMO and CDH babies have a higher risk of hearing loss.  No one really knows why, but they do.  It can be progressive, so we will continue to test and hopefully if she has any problems we can catch it early.  Our pediatrician sent us to an ENT to get her hearing test done.  So, we got to add yet another specialist to our list.  We saw the Nurse Practitioner at the ENT's office.  She was great.  She kept telling us how Ruby was the best looking ECMO baby she'd ever seen.  There isn't an ECMO in Austin and I'm not sure where the NP did her training even if she hasn't seen a lot of ECMO babies it was nice to hear.  Ruby passed the test with flying colors.  They did warn us that her age is really hard to test.  She's to young to wear head phones and she's to old for the tests they use in the NICU.  I wasn't in the testing booth, Chris was.  From what I understand they basically made sure she was turning her head to the direction her name was being called.  They did this at several different levels.  They tried to test her with beeps, but she pretty much ignores all beeping sounds.  I'm guessing this is from the NICU.  Something was always beeping or alarming the 1st three months of her life.

We have  found a NICU nurse willing to babysit Ruby once or twice a month so Chris and I can get out.  Our friends are more than willing to watch Ruby, but we can only be gone between feedings.  It's a lot to ask of our friends to learn how to drop the tube and deal with feeding her.  Becky, the babysitter, came over last night and met us.  Ruby took to her right away!  I see dinner and a movie in our future!  Realistically it'll be coffee and a walk, due to having to pay a NICU nurse to babysit.  Either way it's a much needed "Date Night."

Ruby has started "talking" a lot more.  We've been working on sign language with her also.  So far we are teaching her more, milk, all done, and play.  She hasn't started making the signs herself but I think she's starting to understand them.  When feeding her if I sign more and she wants more she smiles if she's done she fusses and turns her head.  She's also started saying "MAAAA" when she sees me.  This last thing could be a coincidence, but several times if Chris is putting in the NG tube and she sees me she says it.  She also did it yesterday when Chris walked out of the testing booth and she saw me.  Even if it doesn't mean anything, the fact that she's making sounds and trying to communicate is wonderful.

One last thing before some pictures.  My friend Debbie, just had twins one of which has CDH.  Her and her husband need all the support our CDH community can give right now.  You can see pictures of their beautiful girls on their blog.

Look at that head control!