Ruby Hope McKee Starling

First off, Ruby wants everyone to know just how good she's doing.  "Thumbs up" as far as she's concerned.

Ruby is doing OK as far as Mom and are concerned.  I drug her into the pediatrician's office on Thursday because she had a stuffy nose.  She wasn't running a fever or breathing any harder than normal.  We just wanted a professional to listen to her lungs and make sure she was doing OK.  Her doctor said her throat looked a little red and that she might have a cold.  We've been watching her and she hasn't gotten any worse.  The good news is she weigh in at 13 lbs!

Ruby's feeding is still a problem.  We are trying everything we can, but we can't seem to get any where near getting rid of the NG tube.  She is taking 3-4 ounces TOTAL on a good day by mouth.   She needs to take 24 ounces a day by mouth to get rid of the tube.  We've tried letting her get hungry.  When we go 6-8 hours between feedings she is hungry, but she gets so tired after drinking 1-2 ounces that she falls asleep.  It also takes her close to 45 minutes to drink those 1-2 ounces. This says to me that she isn't able to handle full feeds by mouth respiratory wise.  I plan on discussing this with her pulmonologist at her next appointment.  We are also going to see a GI specialist about her reflux and eating issues.  Her pediatrician feels it's time we get a GI's opinion on the reflux and feeding issues.  I'm torn.  I already have to play he said he said with the pulmonolgist and pediatrician.  Adding another doctor in the mix is going to be tough.  Hopefully the new doctor will be able to help.  Do any other CDH babies see GI docs?  We are trying not to get discouraged about the feedings.  It's a battle we fight 6 times a day.  I now understand what my OB and MFM meant when they said "long term feeding issues" could be expected with a CDH baby.  For once I was hoping we wouldn't get the worst possible outcome for something.  Ruby has already overcome so much.  It'd be nice if she got to take the easy street for one thing.

We did introduce pears into her diet and she seemed to like them.  She still likes sweet potatoes the best. We haven't been pushing solids to much.  We don't want to over stimulate her.

As for speech and physical therapy.  We've decided to forgo the ECI benefits and stick with the hospital until private home visits are available.  We are on a waiting list and have been told it will be 2-3 months.  Chris and I both feel Ruby needs weekly visits.  We do all the "homework: her therapists assign us.  We also feel that since she is having so much trouble feeding weekly speech therapy is an absolute must.

On a good note.  Ruby is now rolling over completely.  She can roll from back to tummy and back to her back all on her own.  This is HUGE!  She can also hold her head up and look BOTH directions.  Ruby has been working so hard and it shows. 

Ruby also appears to be getting her first tooth, which might explain the nasal stuffiness, too.  She is one drooly baby!  She also loves to gum anything she can get into her mouth.  She hasn't been cranky at all about it.  We know she has a pretty high tolerance for pain.  I'm sure as time goes on she'll let us know if she's not happy about getting teeth.

Mom and Dad are both doing well, also.  Chris is working hard as usual.  I have deferred my spot in the New York Marathon until next year.  I just wasn't able to put in the training miles I needed to run it this year.  I have a spot in next years race, and we'll be able to go as a family.  I am training for the Austin marathon in February.  Official training started last week.  It's going to be a challenge to get all my runs in before Ruby wakes up and Chris goes to work.  A 4:30 am alarm is really really early.

All we have the next two weeks are therapy appointments.  The first week in October we make the rounds to see all the Doctors for her 6 month check-ups.

I have also made a page with instructions on how to donate blood in Ruby's name.  Please see the tool bar at the top of the page!