WHAT WAS THAT?  ONE DAY AT A TIME?  OH YEAH...

Ugh!  I think I am doing well, but then there are those days where I have to remind myself all over again...ONE day at a time, ONE day at a time...

Today was a day of snuggles for Priya.  She not only has her mommy and daddy here eager to hold her every second we can, but she has her Aaji and Aaja here as well.  I think they will have a hard time leaving her on Wednesday.  She has a magical little charm that puts her sweet little smell, pretty little face, and soft little touch in your head and heart every waking second you are not with her. 

With all the discomforts Priya has to go through, I'm sure glad we are able to hold her whenever we want to now.  Today she had to have a replacement PICC line again...hate those!  The milk going into her NG tube was doubled to 8 cc's.   It's still not much, but her bowel was still sounding pretty slow today, so her body is still trying to recover.  There were no attempts to try to feed her orally today.  Speech Therapy was supposed to come by, but I guess it will be tomorrow now instead.  An ENT (ear, nose, throat) resident stopped by to consult regarding her cleft.  She showed it to us by holding down her tongue with a tongue depressor.  It was the first time I had seen it, and it was much worse than I had imagined.  It is a pretty large cleft involving both soft and hard palates.  It does not involve the tooth line, but starts shortly after that and extends all the way back, splitting her uvula.  No wonder feeding is hard for her!  There is nothing separating her oral and nasal cavities.  It breaks my heart to see it!

We are going to try really hard to help her figure out a way to take food orally, but there is a possibility she will have to be sent home with a g-tube until her cleft is repaired (when she is one).  Hopefully she will be able to compensate and protect her airway and also figure out how to keep food from coming out her nose when she eats.  Poor baby, she is going to have to learn some skills that the rest of us just take for granted.  Priya will need to have tubes in her ears to minimize ear infections and prevent hearing loss as well.  I know tubes getting tubes in the ears is no big deal, but goodness, this poor kid...

Still no sleep-in room for Mike and I.  Since I probably will not be able to breast feed now, I wonder if they will even give us one.  I think the main reason they were going to give us a sleep-in room was so that I could stay with Priya and nurse her at night.  Bummer...

So, another day delayed with feeding therapy puts off discharge and taking our sweet baby girl home.  But, things are what they are.  Most importantly, we have a BEAUTIFUL baby girl who is so sweet you just want to gobble her up like candy!  The rest we just have to take one day at a time, hope for the best, and make it as easy for her as we can.