the little escape

Sophia’s big adventure today was an escape outside from the hospital for her first picnic (well sort of–she watched us have a picnic–well, she slept beside us while we had a picnic). We got the permission we needed from the doc, unplugged her and put her in a little padded radio flyer in her tumble form chair, so she could see over the sides.  We went for a ride through the hospital grounds, and she sat with us on a swing while we had lunch.  She seemed to love feeling the wind blowing across her face, and I think the fresh air was really good for her, I know all the attention we got wheeling her through the hospital was good for us. It never ceases to amaze me how just seeing a child lightens people’s faces, its like a bubble of joy and innocence. Taking her back was really hard, but she needed to start her feeds up again.  


Our new general peds team determined that Sophia is gaining weight too fast now, so she’s already experiencing her first diet–her continuous feeds have been slowed back down and her fortifier changed.  (By the way, I’ve realized since I had the issue about Sophia getting formula overnight that I overreacted–she is actually getting formula as a fortifier–instead of mixing the powder with water, hers is mixed with breast milk.  I thought she was getting something that was only used to fortify BM.  She still didn’t need to be given as much as she got, but it wasn’t as much of a change as I thought it was at first.)    


I was a little disconcerted today when the pulmonary doc recommended that her feeding tube be moved further down to avoid the reflux which he thought might be causing aspiration into her lungs. I had to tell him that she already has the tube that goes way into her colon and couldn’t go any further down. John was furious at the thought that one of her doctors hadn’t read her chart or was unfamiliar with her case and had to speak with the attending in charge of the peds team to get everything cleared up, so I think it will be good to have one general team overseeing all of these pieces.  Unfortunately, they still have not been able to find out when we can get on the surgeon’s schedule.  I know the surgeon is busy and I love him to death but it would be nice to have some idea. Getting it done this week doesn’t look very hopeful, as tomorrow is already Thursday.  


Sophia had her first wet bed last night.  After she woke herself up coughing, I thought it would be a good time to change her diaper.  She felt kind of warm, so I left her diaper under her, but not taped, and went to find the nurse to take her temp.  In the few seconds I was gone, she squirmed off of the diaper enough to wet her pjs, blankets, and bed.  It was kind of nice to have a nurse change the bedding while I just held her!


Today was another busy social day for Sophia. She had several visits from old nurses checking in on her progress–they all commented on how big she is getting (way to give a girl a complex).  They love to see how she is growing and we really enjoy seeing familiar faces.


We’ve also been moved once again–next door to Room 4, as the room we were in was the only room with an EEG camera, which they apparently needed for a new admit.  We are now right across from the “special procedure room” which, judging by the screams, is not a place we’d ever want Sophia to visit.  We are also one room closer to the door–so hopefully that is a good sign that we are getting closer to going home (at least we are closer if we have to make an escape!)


Sophia is currently fast asleep on her tummy–my fingers are crossed that she’ll stay sleeping when we have to turn her over for the night–she’s become quite the night owl–to her mother’s dismay.