Ruby Hope McKee Starling

Here is our 6 month old CDH ROCK STAR!

Tomorrow is day of life 188.  That means we will have been home the same number of days Ruby spent in the hospital!  94 days ago we walked out of the NICU doors.

Sorry I haven't updated.  We had a busy weekend.  Grandpa and Grandma Starling came to visit.  They stayed with Ruby while Chris and I went to a wedding.  Then yesterday morning I woke-up with a horrible sinus infection.  I got some antibiotics and will hopefully be feeling better soon. Caring for a baby when you feel like your head is going to explode is no simple task.  Chris's allergies have been horrible, also.  Never a dull moment around here.

Ruby saw her pulmonologist yesterday morning.  He said her chest x-ray looked great.  Her diaphragm looks good and everything is where it should be.  We kinda new this already.  Ruby's Speech Therapist let me accidentally read the report over her shoulder when she looked up the results of the swallow study.  I understand why they have rules, but I also would never tell the Doctor what a nurse or therapist said.  I understand enough to know that the Doctor is the expert.  The pulmonologist just kept exclaiming "She looks so good!"  We also decided to try coming off the diuretic again.  Ruby weighs 4 more pounds than she did when we tried in August.  Plus not having medicine tied to feedings will hopefully help us get off the NG tube.  Ruby also received her first Synagis Shot.  This is a medicine that will help fight off RSV if she gets it.  It's not a vaccine.  It's only given to preemies or babies with congenital heart and lung problems.  I was reminded by the nurse and doctor that our goal this winter isn't so much to keep her from getting sick as it is to keep her out of the hospital.  I don't know about other CDH parents, but my goal is to definitely to keep her from getting sick.  

We now have 3 weeks before the 7 month check-ups start.  I'm really looking forward to just having Speech and Physical therapy for a couple weeks.   

On the food front.  Ruby's intake has stayed the same.  She's consistently taking 20-30 ml from each bottle.  it's hard to tell how much of the solids she's actually swallowing.  We also let her try some turkey and chicken.  So far she loves turkey and doesn't really care for chicken.  She also hates bananas almost as much as apples.  Sweet potatoes, pears, squash, and peas seem to be her favorites.  If she shows us signs of not liking something we don't offer it more than three times.  She's got such bad oral aversion and we need to keep eating a positive experience.

Our friend Kim and our neighbor's The Butler's had this onesie made for Ruby.  It took her 6 months to grow into it!

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Hopefully I'll be feeling enough to take some pictures tomorrow.  That's a lot more fun than folding the laundry that has piled up since Grandma left.