FOLLOWING UP, GROWING UP, LOOKING UP

Today, Priya had a follow-up appointment with a NICU neonatologist and nutritionist at the Children's Hospital.  So far, she has been home almost three weeks, and she has also had two appointments with the pediatrician, two with a feeding/speech therapist, two with the surgeon, and one with the oncologist (due to increased cancer risk...not because she has it).  By the end of the month, she will have another appointment with the oncologist, lab, ultrasound, nutritionist, and surgeon.  Keeping up with her appointments is practically a part-time position!

Priya is eating so well!  She has been guzzling her bottles and still seems hungry, so we decided to up her feedings today.  She actually smiled when the neonatologist and nutritionist said that, which gave all of us a good laugh. We hardly use the G-tube now.  Sometimes we wonder if it was really necessary, but I guess with her large cleft and large tongue, it was hard to know how she would be able to handle feeds.  And, they tell me it will come in handy with her cleft surgery in a year.  I guess that is how we will have to look at it, but considering how hard the surgery was on her (and us) and how she had to have a major surgery and has two scars she wouldn't have had to have...it bothers me to think it might have been unnecessary.  Also, just dealing with the tube gives additional risk of infection or worse.  Then, there is the daily maintenance of it.  Retrospection isn't always healthy though, so we will just try not to dwell on it.

Priya is just over 9 pounds!  The doctors and nutritionist are very pleased with her growth.  They say she is right on target for her. She's not very big for a baby with BWS, only in the 25th percentile for her age.  Her tongue is big, but she really seems to control it very well now.  We've even gotten comfortable not using the apnea monitor at night, because we don't worry so much about her having a blue-lip episode.

A new medical concern is that she has developed an umbilical hernia.  Although the surgeon did give us a heads up that she might develop one, THIS IS A BUMMER for us.  There is a chance it will close on its own by the time she is one.  If not...another surgery for her.  {:0(

The fun thing that Priya is doing right now is looking more alert and giving more eye contact.  She pretty much keeps her parents melting with those big, beautiful, brown eyes.