January 30, 2012

There hasn't been a whole lot of change in Britta's recovery the last few days. She is still on her Nitro patch, Digoxin, Reglan and Zantac. She has the feeding tube (NG now) and is being fed constantly throughout the day. They've started working with her and the bottle again and she is doing okay, but (I think, and the Occupational Therapist) agreed that she isn't all that interested in the bottle because she just plain isn't hungry since she is being fed basically 24/7.The OT plans on talking with the doctor on Tuesday about backing off of her feeding tube feeds and letting us try to bottle feed her more. I did get to feed her about 15cc's today by bottle. She was so alert and happy, she cooed a couple of times for the first time ever, which of course, melted my heart.

The problem is, that even with the reflux meds, she is continuing to vomit. Not nearly as much, but still not able to keep her entire feeding down. It could very well be that she is just too full, but I don't know, the doctors haven't said much...

In syndromes-of-the-random news, we discovered that she also has something called Harlequin Syndrome. We'd noticed a few times that she sometimes has a perfect line that goes from the top of her head down to her chin up and down, perfectly separating her face into two sections- one side looking "normal", and the other varying shades of red. Sometimes, it's barely noticeable, others it is a deep shade of red and one of her eyes (on the affected side) droops. The docs say this is Harlequin Syndrome and is painless and otherwise symptomless. There is no treatment for this, but thankfully, there really are no serious effects from it either, and it may go away on it's own over time. It sometimes comes on spontaneously for not apparent reason, and other times, it is is when she is really upset or worked up. Apparently, B is just bound and determined to have every random, rare, unheard of condition out there! ;)

This picture was taken this afternoon. This was one of the times when the "syndrome" occurred for seemingly no reason. It was barely noticeable this time...

Anyway, I guess we are sort of at a stand still. I know Britta is doing everything she can to get well and get home where she belongs. I need to try just as hard for patience and, as Chris often reminds me, rushing does no good. They rushed to send us home from the hospital when she was born even though she was having trouble and look where we ended up.

I know I say this all of the time, but we really can't thank you all enough for keeping Britta in your thoughts and prayers. We are so amazed by the support we have received and feel so very blessed to have so many people, some we have never even met, rooting for our sweet daughter and her recovery.

Thank you x1,000. :)