Home, sweet, home...

Jordin has finally made it home! We got her home on Sat night. They said on Friday that they were talking discharge, then the docs did their rounds and seen she lost 1oz over the night. Then they decided they wanted to watch her over the weekend. I disagreed! I made sure she came home Saturday! And she is doing GREAT! She is so comfy at home with her family. We are so happy to have her home. She is alot of work, her meds/feedings/treatments/diapers sure fill up our schedule!
She's so adorable though! I don't think she can find more comfy places anywhere but home!

Want to hear the words...

Jordin has been doing very well! She has worked her way up to full feedings and will be able to get her broviac out of her chest soon! She gets to eat on demand every 2-4 hours. She has tried breastfeeding a couple times, but prefers the bottle cuz it comes out alot faster and she is a piggy! Hopefully the doctors order for that to happen today...we'll see.
Her jaundice may be taking it's time to get better but they did an ultrasound on her liver and have ruled anything bad out there. That was relieving! They said this should not hold her discharge date back any. We had a meeting with the doc on Friday and he said 1-2 more weeks. If everything keeps going as well as it has been the past couple days I am hoping to hear the words 'discharge' or 'home' by the end of this week! Not keeping my hopes up though. Don't want to be disappointed when it is not.
Her cough is still there, just seems to be getting better. I guess we just continue treatments as far as the lungs go.
She is very happy and content though! She likes to be held and cuddled, so she gets much attention there. :) Wish I could do it more! Very soon, very soon... Can't wait!

Happy little girl!

Jordin has been such a happy girl lately! She is eating real well. She is now up to 38ML every 4 hours, she needs to get to 90ML. They are giving her 4 more every 12 hours until she can't handle it anymore. I fed her last night and she seemed to lose interest toward the end already, about the last 5mls were a struggle to get her to take. She did take it a few minutes later. Hopefully she continues to eat more and it doesn't bother her. If she does well they said it would be about 9 days til full feeding. At that point they will be able to take her broviac IV out of her chest.
She still has a cough but her cultures did not grow anything so they are holding off on any antibiotics. She is getting the nebs and chest pt still. I guess they are just hoping she fights whatever it is off.
She is very happy though and smiling all the time! I think she likes to be on her belly too. She looked so comfy one day when I showed up.

Mixed news

Well, the great news is that Jordin is eating a small amount as of last night (only 8ml) and is doing well with it so they will probably start upping her feeds fairly quickly now. She pooped 3 times today, her third being while I was there and it continued through the diaper change...I tell ya, once they start they don't stop! haha She is healing well from surgery and loving the food finally! So taht is awesome news!
Then the not so great news is that she had a bronchioscopy (they went down her air ways with a camera) to see what is causing all this coughing. (don't mind my spelling in the next few sentences!) While down there they also did a lavage (shot salt water in and sucked it back out for a sterile culture). She did really well with the procedure and came off oxygen quickly as always. They saw a lot of thick secretions in her lungs and lower airways that they don't typically see in infants. We are waiting for the culture results to come back. At that point the will decide if she needs to be on 2 week IV antibiotics, which would tack on another 2 weeks to her stay for sure.
She is up to 7 pounds 13 ounces...plumping right up for us...hopefully this continues! She always gets this real expressive look like 'what is going on?'! It is too cute! She's kind of got it in this picture. She's so sweet! I can't wait to get her home!

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!)