Yes, Sophia has another diagnosis consistent with babies with Down Syndrome.  Her test results came back really high (meaning her thyroid isn’t working properly), so they have started to give her synthroid to counteract this.  They think this will make her more alert and gain more weight–we are really hoping that this will be true.  It will take a week or so to kick in, so I expect we’ll have another couple of weeks here.  They have talked about putting a “G tube” into her stomach if she isn’t able to take her feedings “PO” (by mouth) within an as of yet undefined reasonable amount of time–so hopefully this will buy her some more time to do that.  (She did take 45% of her feedings PO yesterday, so that is positive).


Sophie now has another team of doctors working with her–the endocrinologists (in addition to the neurologists, cardiologists, surgeons, intensive care docs, etc (and of course the speech therapist, the occupational therapist, the physical therapist, the respiratory therapist, the social worker…)).  It is really nice to be so thoroughly taken care of.  


The endocrinologists needed a blood work up and a scan to see whether she has thyroid tissue anywhere else but the thyroid and to get some baseline data on her, so tonight Sophia had to get m big blood draw and IV inserted.  She has very small veins, so this is always a problem.  It is so hard to see them continuing to stick her and not finding a good enough vein.  I’m still queasy when I see blood, so Papa gets the job of keeping his finger tip full of Sweet-Ease.  The NP (nurse practitioner) finally had to use a light to see through her hand to find a vein and did the blood draw and inserted the IV.  It’s now taped securely to a splint on her hand until the test is finished tomorrow morning.  The NP said they joke that the IV must be secure enough to hold the baby up.  Luckily they have special adhesive remover so it isn’t so painful to have that tape removed.  (Not sure where that stuff was when the tape was removed from my back after the epidural).


Off to the hospital for the 10PM feeding…