All put back together!

Jordin had her 'reattachment' surgery on Thursday afternoon. She did very well with surgery again and came off all breathing help right after surgery. They also took her appendix out during surgery. They said she doesn't need it and that people with CF have a tendency to get appendicitis, so this will keep her from having to worry about that. She was in quite a bit of pain and they could only give her so much pain meds cuz otherwise they would have to help her breathe if she was too sedated. It was sad...she had her eyes shut and would just whine a little every couple minutes. I felt so bad. I just wanted to stay there with her all night! They did increase her meds little by little after that to make her comfortable but you could still see her pain. She is doing alot better now though.
The doctors want to see that her bowel is moving before she is able to start eating again. Not sure exactly what they are waiting for, I guess a poop, but I don't understand what she will poop out if she hasn't eaten. They know what they are doing though. I just can't wait til she can eat! She's hungry! They said about a week in the beginning, so we'll see. Once she comes up to full feeds she should be good to come home! Possibly a couple to three more weeks yet though.

Movin' Up in the World

She's movin' on up! She has been moved into a cool crib w/ more room! She's got a musical moving fish screen in her bed too! Cherie Grandma made her another blanket she can use now, it has her name on it. We also got to bring her bouncy seat up to the hospital, so she is getting some activity. When we turned on the vibrate function, she just curled her eye brows wondering what the heck that was! She got lots of quality time with Ashlee the other day and just couldn't take her eyes off of her! It was adorable!
Still hoping for surgery late next week...haven't heard anything else. They dropped her feedings down to 9ml again due to her having too much output. Her eyes are looking a little yellowish, maybe getting jaundice? They really need to just do this surgery!

Too many nebulizers!!

Jordin has been doing well, considering all that is going on! They are trying to fight her cough. She is now on 3 nebulizeds meds: Pulmozyme, Albuteral, and TOBI; she gets 2 of them twice a day and the other every six hours. (there is a picture of her doing her nebs w/ the turtle face) Twice a day she gets all 3 one after another, that is at least 40 minutes of non-stop nebs, she doesn't like it much...they also do her chest pt at the same time, she seems to like that better cuz it is a bit relaxing. She is coughing up some stuff after all that which is good, cuz she needs to get it all out! They are also giving her a med to try to fight the bacteria that is bothering her, they want her to be prepared for surgery. The word on surgery is 'around' the 25th. They have not set the date yet. Hopefully she is healthy enough on time!
Another thing she has developed is Thrush. I guess it is yeast growing on her tongue...they say alot of babies get it. They are going to treat that with a med that gets wiped in her mouth after feeding so it sits in there.
Some good news~her feedings have been moved up from 5 to 15ml! They first moved her from 5 to 10, now I found out today she is getting 15, so she must be handling that better. She is up to 7 lbs 5 oz! She's gaining weight great!
(She's so funny with her big eyes! They crack me up! They're so adorable!)

Update

They have begun to feed her mucous fistula (the bottom half of her tube) which will help train her colon. She is now pooping in her diaper as well as the bag. They are taking out what's in her bag and feeding that through the mucous fistula. That has been going well. Only thing is the amount of feedings she is getting...she was getting 18 ml every 3 hours and has now been dropped to 5 ml every 3 hours. She was having too much output and not enough was being digested, so in other words it was useless. I am bummed she can't have more cuz she was loving it! Now she gets done with the 5 ml and she is wondering where the rest of it is! :( Hopefully this does not bring on the jaundice that they said she may develop, it is a very small amount of milk.

Also, her cough has gotten worse and the last chest x-ray showed more haziness. They were going to change her antibiotic, but instead just discontinued it and plan to watch this cough very closely. They have upped her nebulized meds and CPT though.When I called today, the nurse says she hasn't been coughing a lot today but it does sound wet/productive. I really don't like it. They did another throat culture...we'll see if it grows anything in a few days.
She is up to 6 lbs 5 oz though! That is good she is gaining weight! She still likes to sleep for Daddy though. He must be real comfortable! With me I can hardly get her to go to sleep and let me put her down! I can't stand leaving with her eyes open though! Poor little girl! She is such a little hunny. I wish I could be there for her more. Please pray for her.