Day 2

Avery had an ok night…she seems to be getting more muscle spasms…so they have been giving her more valium to control that..she had one dose last night at around 630 I think then she had another one this morning. The valium really knocks her out though. The pain management team just came by and they are going to lower her valium a little to see if it doesn’t knock her out so much.
She is more agitated/irritates easily..she was sleeping then she woke up and lifted her blanket with her hands and peeked down her blanket and did a little pout..poor girl maybe thought all of it was just a dream and then woke up and realized the cast was still there and she cant move.
We are probably going to get moved down to the regular ICU floor today bc they have some rooms available bc right now she is on the cardiac ICU.
Her pulse has gotten pretty high a few times…might be from the valium.
PT came by yesterday and evaluated her but cant do anything until the epidural comes out. So she is going to start the process of setting us up with a wheelchair that reclines and also a commode. The commode they will just deliver to the house but the wheelchair we will get in the hospital and then just take back to a company that is down in SC too.
She is still very sleepy. Not her self at all..Jared did get her to laugh a little yesterday but that was it..its soooo hard to see her like this and not her giggly smiley self!
She still has a fever but it stays below the 38.5 C mark…it got to be 38.4 but they still just held off on doing cultural. This kind of fever they say is normal bc of the surgery that she went through with as long as it doesn’t get any higher.
Still very junky sounding in the chest area. She needs to cough it up but isn't doing that very well.
Still has not went number two yet..I think that is where we are going to run into major complications. Bc she has so many issues with constipation already bc of her Hirschsprungs disease and she cant push or sit on a toilet..we have put her on a bed pan twice now but she just starts to doze off both times. They are giving her miralax and I have been giving her her fruit-eze but still none.
She still has the epidural in to control the pain. and I think that will stay in place for the whole day today as well. It seems to be controlling the pain pretty good.
Her oxygen levels are still dropping when she is sleeping so she is on oxygen when she sleeps to help keep them up. They are thinking bc she has the body cast and that is making her breath more shallowly and also the narcotics can slow down the breathing a little too..
She isn't really eating very well at all…but drinking some…she doesn’t mind the catheter right now.
They just took out one of her IV’s in her good hand so maybe she can sign a little more and communicate with us what she wants..bc she is still not talking much at all.
She has slept good on there CPAP machine. She cant move around so the mask stays on her all night mostly. We cant use our CPAP machine we have to use the hospitals but I don’t care for there machine at all! I wouldn’t mind at all if it broke down.It has an alarm on the machine that goes off if her mask isnt on her face just the right way and there is a leak. and then when they go to put it back on they don’t reduce the level at all and she doesn’t like it blowing on her on the full setting when she is fully awake. We usually set her machine so it gradually works up to her setting on her machine. 
I have been sleeping in her room with her bc they only let one parent to sleep with her and Jared has been going back to the house to sleep. I have been getting some sleep..no uninterrupted  sleep but I guess that is to be expected.
Food wise..well we eat every meal out..we have to. they do give us a 5 dollar meal voucher once a day. so it takes care of one meal for one of us. which is some help.but then everything is so overly priced of course to. They have a place right in the hospital called. Au Bon Pain..they have very good danishes for a good night snack.(I will need to diet/workout like crazy after this week)
I miss my other kids like crazy! Its really hard being away from them all. Everyone basically says it must be like a vacation being away from them all…which it is but I still miss them like crazy but its nice to not have to really worry about them at all.and just focus all of our energy on Avery getting better. The other girls are in really good hands…Grandpa and Grandma. and Grandma has had her experience with twins(she had twins herself)  before so she just knows.
God has carried us through all of this..along with all of your prayers and thoughts. Its amazing how you get through things like this..You just manage. keep on. even though I am drained physically and emotionally.  I could use a really good cry..I don’t know why cant put my finger on it..sometimes you just need that. Probably is just the whole thing in general and then seeing her in so much pain..breaks my heart.
The music lady..she came by and sang some songs to Avery..and played some recorders..she was really good..she had them in all different sizes..pretty neat.


The clowns stopped by to see her a little bit ago..and sang her a song..can you tell she was just so thrilled by them…
 
and blow some bubbles for her but she really wasn’t having it…

That’s it for now..will update more later..
Thank you everyone for all of your prayers. and heartfelt wishes..they are so appreciated!