10.20.2006
Surgery #2: 4 Days Out
I spent the night with Avery last night. It was not a very restful night for her. I am not sure if she is in pain, is frustrated, sensitive to the "newness" of her awareness, etc. or a combination of two or more of those things. She was getting really worked up by late morning. Jon came over about 9 am and she was just so upset from then until I left at about noon. She is back to doing the back arching/crying/breath holding from before. We still haven't seen anything that we recognize as a yuckie. She has done a couple things that give me pause, but they could be the result of other things. Really, only in the last about 24 hours has she been more awake than sedated, so she is having to re-adjust to the world. I keep trying to keep in perspective that she is probably very much like a newborn in response to the "newness" of her environment now. With this surgery, she likely (and hopefully) has a whole new awareness of the world...and I am sure that it is a bit scary for her. It doesn't help that Daddy and I have face masks on when we are with her. I'm sure she can't rectify that in her mind. We just don't want to pass any cold germs to her, so we are adament about wearing them when we are with her or anywhere close to her. We continue to try to just take things as they come...one day at a time. We are rotating who stays with her so the same person is not always sleep deprived. My mom is resting now in preparation for the night shift tonight. Hopefully, by tonight or tomorrow, we will finally get to hold her. They have been slowly working in getting her head more and more elevated and turned back to midline, after keeping her flat and with the incision (left) side of her head facing up. Please keep the prayers going for a full, and more comfortable, recovery free of any of the yuckies. We look forward to the day we get to leave the hospital.
Caiden may be starting to bore with his time here. He has been more trying lately. I have taken the Pac Man game away for 2 days, along with the Harry Potter movie this morning. I think he needs a good day of attention from Jon and I. Hopefully, we can do that soon.
Thanks to everyone who has called, emailed, and stopped by over the past couple of days. We continue to draw strength for this longer-than-planned stay from all of you.
With much gratitide and love,
Holly
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Happy Avery Doll. August 2006
Professional Portrait by Debra's Studio, Tell City, IN...Thanks so much for donating this picture!
Little Miss Sweet Pea. September 27, 2006
Sleeping Beauty, the night before first surgery.
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3 comments:
Holly, Marilyn, and Family,
Continuing to keep you in my thoughts and prayers. Wishing only the best for Avery! Julie Sutcliffe Denu
I've been wearing Avery's wristband since I got it at church, and saying a prayer every now and then. It's thrilling to hear the progress that Avery has made! You're family is being a great family for Avery, Caiden needs you too.
Holly,
This may be silly and you or the hospital may have already tried some things, but I was wondering if you could alter Avery's environment some to decrease the possible sensory overload. Sometimes a lamp with a low incandescent bulb is less stimulating than a flourescent light. Also, maybe a sound machine (like the one's with rain sounds/ocean/heartbeat) would help drown out some of the other hospital and equipment noises. Also is she being "swaddled" while sleeping to feel more secure? I know these are usually things you can do for newborns in NICUs, but as you said, Avery may be very much feeling like a newborn as far as sensory processing now. Just some thoughts, sorry if this is all common knowledge already. Hope you all continue to feel better.
Love and prayers,
Heather
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