Thursday, July 19, 2012

Waking Up

Karl and I have seen Cecilia open her eyes a few times in her short life, but they are typically rolling back and fluttering, or zinging around crazy.  Today was the first day she could look into her Daddy's face without that happening!  She could focus on him, and they could bond.  ♥  I have experienced this briefly twice.  It is a great feeling.  I am so glad that he got this moment! 

 Daddy's pic, sorry it came from one of his mobiles, so not the best quality.  Still a perfect memory ♥

Yesterday morning I met with the Child Life Specialist.  She is excited to meet Cecilia's sisters.  We don't have a set day for our big family visit, but it will be after extubation.  This is not a hospital rule or anything, just what I prefer.  This way they can bond with Cecilia.  She gave me a huge bag filled with presents to bring home for the girls...  Some crafts to make bracelets, dolls and markers, and cool "doctor" stuff (gloves, masks, band-aids, those little EKG stickers, ect).   We don't want the kids to build a resentment for the hospital, which understandably is happening.  I am grateful for the presents from the hospital, and the kids were too!  My biggest desire is Cecilia being able to lose some of this support and be strong enough on her own, and my second is family bonding.  I hope this will fall into place soon.

Things have not really changed with Cecilia's status, other than as of last night her sedation is being weaned more to the point she is not out cold in dream land at all times.  I don't think we would be at this point today if Karl and I did not speak up about our thoughts and feelings regarding how high her sedation was and how frequent her PRNs were.  They did run some more tests to try and figure out a cause of Cecilia's respiratory issues, and there has been no findings.  They checked her diaphragm, and have been checking for infections, ect.  We've made the initiative for second opinions from CHOP and are eager for any answers and insights as opposed to having none.

I am going to spam a few pics of my day with Cecilia on Wednesday.  Usually I write my blog late at night, after midnight, so when I am talking about the day it comes out wrong.  The blog Nothing Major, was a picture of Cecilia technically on Sunday.  So Here is Cecilia on the "real" Monday :)



And Cecilia on Wednesday morning:


See her new hairbow from Sarah




later on in the evening, Cecilia awake with Mommy


Hello, Hello Remember me?