Adara Update: It’s been two weeks

We went for our two week check up today with the pediatric cardiologist.  I really like our doctor.  She makes things easy for us to understand, we can joke around with her, she takes time to explain everything and answer all our questions….we got a good one!

She had to have her first blood draw today.  She did AMAZING!  She was sound asleep when we got to the lab.  That is NOT a way I want to be woken up!  (Actually, when I was in the hospital after having her I got woken up at 5am for a blood draw…that is WRONG!  Just WRONG I tell you!!)  So, she woke up and cried for the needle, but then actually fell right back to sleep when the procedure was over!  How awesome is that??

So, the stats:

  • We are upping the dosage of her medicines.  This will help to keep things moving in a good direction and keep helping her body to work better and hopefully help her gain weight.
  • She is still not gaining quite enough weight.  She has GAINED since the last appointment, but not enough.  I will be supplementing her feedings with extra calorie breast milk (adding formula to breast milk).  Hopefully this, along with the heart medications, will allow her body to gain the weight it is supposed to and make sure she grows and develops properly. (Who would have ever thought someone in my family with MY genes would have problems gaining weight?!?!?!)
  • Her liver is still enlarged, but hasn’t gotten bigger since last time, so that is good.  All is as it should be for this stage in the game.
  • Her breathing is a little better, but still a little fast.  The medicines should help this too. She is not sweating or appearing to be overly exerting herself when she eats, so that’s good.
  • We don’t have to go back for another month.
  • At our next appointment we will set the surgery date.  (YIKES!!  {GULP!!! } HOLY CRAP THIS IS REALLY HAPPENING!!!!!) The surgery will likely happen in June or July sometime.

That’s the gist of the appointment today.  For now, I gotta run, I hear Adara waking up from her nap……


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