I know...it's been a while!

We've been real busy here! Lets start with some excellent news! Ashlee has FINALLY made it to the 50th percentile for weight! It took 4 1/2 years...but she made it! She is now pushing 33 pounds! Not sure how, cuz she doesn't eat hardly anything! But somehow...she has made the doctors happy! Since we're talking about Ashlee I will tell you they have diagnosed her with a 'mild pulmonary exacerbation'. She has had a cough for a couple months on and off, that's all this means. She was put on antibiotic the other day at the clinic. Hopefully we can get her back to normal with no cough. Hopefully her culture comes back clean too. Other than that, Ashlee is doing great and loving school! She just missed her first day cuz she was coming down with a cold...hopefully it passes her easily! Dad had it, then Jordin, now Ashlee...I hate to think where that puts me!
Jordin is such a cutie pie! She has been doing well also. We had an incident where she started getting hives for a few days. We had an appt at the clinic so we waited til the next day to have them looked at,of course, by then they were going away (a good thing)...so we still don't know what she came in contact with that she was allergic to. Despite our carefulness and cleanliness, at that appt she cultured a bacteria called pseudomonas, which is found pretty much everywhere. (I later read on the CF website forum that the bacteria could have triggered the hives...not sure but possibly) So she was put on an antibiotic and a new nebulizer called TOBI. Which brought us to 13, yes...13, medications! Our house looks like a pharmacy!

We just had another clinic appt on Tuesday and she weighed 11 pounds! YAY!! Well, for me! LOL The docs of course are not happy enough with that! Oh well...give me 4 more years! She is in the 3rd percentile right now and has been steadily. She still eats great, much better thatn Ashlee ever has! She has been gaining about 1 pound each month. She also added one more medication for reflux. She is already taking Zantac for it, but now...to try to help more with stomach acid for maximum food absorbtion we are going to use Prevacid 1 time and Zantac 1 time each day. I hope someday soon we can cut BACK on some meds!
She still gets up usually just once per night...thinks it's morning around 6:30-7...She pushes herself up in her bassinet until her head is protruding out the top (well it of course stops...I have a better pic of it, this one doesn't show as well) then goes to sleep. She's a hunny! We love her! She is full of smiles, as long as Mom is home. (well, she's getting better with Dad now too...now we're working on Grandma Jill! She likes to scream out of control when she is not with someone she is used to when I or Dad are not around!)
Well, that's all for now...next time I will try not to stay away so long! Hope I didn't forget anything important!

Thriving and gaining!

Hi everyone!
Jordin is doing great at home! She had a weight check just the other day and is a whopping 8lbs 13.5 oz and thriving! She is such a hungry little girl and she sure knows how to tell us! She is also very spoiled and like to be held and attended to at all times! (We love it since we have missed so much time! Yet we do need to get some other things done too, and she is a fussy one when it comes to her getting the attention!)
I have started back at work this week and will be working part-time. Mon/Wed/Fri type of deal. It has been okay this week so far. I think Jordin knows and is not the fondest of the whole situation, but will get used to it. This week I just did half days, next week I will be full days on Mon and Wed. She doesn't go to sleep for Daddy while I am gone as she usually would so hopefully that will change so that Dewayne can get a few things accomplished while I am at work! She just likes to give him a hard time! :) I don't blame her!
I came down with sickness Sunday night, so I am still crossing my fingers that nobody else in the house gets sick!
Well, just wanted to let everyone know how well she is doing and post some pics! (If you can't tell, Ashlee loves her sister to death and just can't keep her hands off of her! She's just gotta be in every pic! :) )

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!)

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.

Bye, Bye feeding tube!

Finally! We get to see her whole face with nothing on it, except the cute little precious face! That is probably so much more comfortable for her! I got to feed her a couple bottles now, that is about the only time she wants to wake up for us now. If we go there in between times, she is impossible to wake up! I had to include the last one...it was funny! I think it was her envy of us leaving! LOL

Cute in purple!/Micro colon

She looks so cute in her purple outfit!
I had a meeting with the docs and they told me that Jordin has a micro colon because it was not trained due to her bowel obstruction. So they need to 'train' her colon to expand so that when they hook her back together, it will go through and not get stuck at that point. In the meantime, she will only be getting the small amount of food she can take and be dependent on the IV. She could become jaundice and develop a type of liver disease, which they say is reversible when she starts to eat more. They will be keeping an eye on this. Hopefully she avoids this. She has been strong so far!

Cystic Fibrosis confirmed

Her Cystic Fibrosis was confirmed. Since then she has had an x-ray that showed mucus cloggnig in her lungs so she is being treated with nebulized medicines. Ashlee gets one of them for prevention, Jordin is taking that same one, Pulmozyme, twice a day and Albuteral once a day. She cultured Staph, a common bacteria for CFers to culture...she was given antibiotics to get rid of that. Ashlee just cultured the same prior to Jordin's arrival. That is only the second time she has ever cultured anything. Jordin has a little cough from it...hopefully she gets rid of this soon! Other than that, she has just been hanging out, taking more milk each day.

My first clothes!

This is her first little shirt she got to wear! (Well except for the white onesie they put on her that was 3 times too big for her...it was just kinda wrapped around her! LOL) I love this cute little shirt! We can bring in clothes for her to wear now, pretty much anything with out zippers. Daddy was getting her changed and dressed in the pics.

Surgery

Saturday morning she was scheduled for surgery. They found ALOT of miconium illeus that killed a small portion of her intestines. They cleaned it out and took out the dead intestines. They could not sew the ends together right away so she has a 'stoma' (a bag on her left that her poo goes into) for 6 weeks when they will do another surgery to 'reconnect' her. She did great with the surgery and has been progressing very quickly!
Most likely she will stay at the hospital through the next surgery, so we plan at least 2 months unfortunately.

Enjoy

Thursday and Friday we just got to visit and enjoy her! Waiting patiently for her enimas to work.

Cherie grandma gave Jordin a blanket, we used it for covering her incubator!

No Movement! Here I come!

The night of May 5, 2009 I realized that Jordin had not moved for at least the past day. It really started to freak me out cuz I couldn't get her to move no matter what I did...her legs would just bounce back when I pushed on one, like it was limp or something. I agreed to wait til morning to see if she started moving. By morning, no movement! I called into work and waited til 8am to call the docs. They sent me to the hospital. After I got there and they hooked up the heart monitor I was SO relieved to hear a heartbeat! Finally I was transferred to Spectrum where they did a second ultrasound for the day and the doc was unsure what was wrong with the baby. He said she would be best to come out and find out the problem. So on May 6th at 7:48pm, Jordin was born by c-section. She weighed 6lbs 1oz and was 19 1/2 inches long! Good size for being 5 1/2 weeks early! She had the ambilical cord around her neck but started breathing and moving fine after delivery! What a blessing!