Room Air tastes so good!

So both girls are now just breathing room air without any help from machines.  The only tube they have on them now is there feeding tube which they yank out all the time. Its fun to see just them instead of them covered by all the tubes.  Both girls have nursed on there own and are getting the hang of it. They still desat a little when nursing so we have to be a little careful with them still. They moved the girls into an isolation room for the surgeries so that way they could keep it dark for there eyes. They are still in that room because the rest of the nicu was filled up. They moved them back into the same bed again as well,  because they needed the beds they were in for other babies.  We will probably move to nursery B pretty soon. Which means we are getting closer and closer to going home.

Surgery

Well the doctor came Christmas Eve and checked there eyes again and they were worse so they scheduled surgery for yesterday.  The Surgery went well on both girls. They're in a lot of pain this morning and fussing a lot but there eyes are doing good so far. So basically the girls because of the surgery have lost their peripheral vision, but at least they will be able to see. They had to put both girls back on the ventilator and on pavulon to hold them still during the surgery. Pavulon is what Sofira was on for her lung.  This morning however they have jumped back off the ventilator and CPAP and cannula even, Sofira is breathing just room air now with no aid of anything at all. Jade is not far behind her, shes on a little medicine from the surgery still so they will wait till that wares off before they try her without the cannula as well.  Oh Sofira is 4 and 1/2 lbs now and Jade is up to 5+ pounds. With the girls off of anything to help them breath, the biggest thing they need to accomplish now is being able to eat on there own. Which means Beth is gonna have to start going in every 3 hrs for the next week or so, fun fun.  Thanks again for all your prayers, it helps a lot.

ROP

The girls just had there eyes examined and both are developing symptoms of ROP. Jade is a little worse off then Sofira, Jade is in Stage 2, Sofira I think is as well but not as bad. Basically the blood vessels in there eye's are developing abnormally which has a chance of leading to blindness. Given this information, unless these go down soon, they will at minimum have to wear glasses. If it progresses to Stage 3 they will end up doing surgery and they will lose there peripheral vision. Its also possible that they could go completely blind.

Your prayers concerning this issue are definitely appreciated, I know with the Lords help the girls will be able to overcome this challenge in one way or another. Thankyou again for all everyone is doing for us.

Nursing already?

So they let Beth try to nurse today, Jade did great. She latched on and got a big mouth full that nearly choked her up. She'll be a pro in no time I'm thinking.   Sofira on the other hand just sat there wondering what Mom was trying to do. When Beth switched her over to the side Jade had nursed on Sofira must of smelt it then because she got her tongue out and was feeling around with it. I think she'll get it pretty quick as well, but she'll probably be a few days behind just like most everything else the girls have had to do.

Together at Last!!!

The girls are now in the same bed together. WOOHOO!! We were chatting with one of our primary nurses last night about it and she also happens to be a charge nurse, so she made it happen for us. They are so cute together.  Normally they would of waited until Sofira was able to keep her temperature as well, but they just put them in the warming bed together instead of a crib. Its a little small to fit both in but its perfectly doable. I think the girls really like it, they have been missing each other a lot.

Social Butterfly

So Sofira has continued to do really great on the cannula, there both still swingers though on there rates. They really like to keep the nurses hoping. I swear they hold there breath just long enough to get the nurse to stand up and then laugh and start breathing again.  Sofira Loves to have people around, whenever they lift her top off she wakes up and looks at where the sound is coming from and opens her eyes to see who it is.  Jade on the other hand is not liking always being out in all the sound. Shes been rather fussy lately, hopefully shell get used to it cause we have lots of sound for her at home as well.

My Precious Girls

So Sofira is off the CPAP and now just on the Canulla like Jade, WOOT!!! She is doing great on it. She had all her hair rubbed off though and her cheeks have indents from the mask thing she had to wear. We still love her though ;)

Jade is upgraded now just to a regular newborn bed, she thinks shes hot stuff. She doesn't need the heat or cover anymore. Its nice not to have to touch her through the holes in the bed.

Since that picture didnt show her very well here is one of the cutest ones Ive ever taken of her I think.

But if you think that was cute check these out, they put them both in the same bed for a bit and we got a bunch of pictures in there cute outfits.

And here I am as a proud papa watching the sunset with the girls out of there window.

Slow weight gain

So the girls have not been able to gain as much weight as the doctors would like so they have beth seperating out her Hind milk which has a lot more calories in it and they are just feeding them that now. Jade is now doing much better with her desats, and she's not having as many problems with her acid reflux. Sofira is slowly coming off the cpap, she's down to a 7 now. Beth is getting a kick out of dressing her little dolls with clothes we bring from home, its a lot of fun to see them wearing these cute little outfits. All in all the girls are about the same, not much change this past week (thus why I haven't blogged, sorry I will do better even if there is no change)

Down with Acid Reflux

Hi it's me again, Mom
So everything is going well. The girls are still trying to learn how to breath. Which they are getting somewhat good at. The weight is going up slowly and they are both starting to be more awake during the day. I love to see them awake and trying to look around.
Our big battle right now is the Acid Reflux. Sofira does not have it too bad. She gets maybe one or two episodes a day or so. Jade on the other hand gets really bad reflux during and after every feeding, which is every three hours. Both are still on the feeding tubes. Sometimes she gets it so bad the the nurse will have to hold her upright while she is eating and then try to prop her up after. But nothing seems to be working yet. The doctors told me that they were going to try to reduce her feedings again to a continuous feeding all day. Right now she gets 1oz of milk over a 1 hour period. Which is really slow. So they will try to put Jade on low pressure breathing again and feed her really slowly to try to help her heal a little and try to stop the reflux. There are some medicines that can help her, and she is taking them, but they are not working the best. Really what we are all waiting for is for her to outgrow it, just like a few other things that we have had to face. Unfortunately the reflux has now pushed the nursing stuff back. They want me to wait to try to begin trying to teach Jade how to nurse till after the reflux settles down. Which might take a while. (so frustrating) Sofira still can not begin the nursing thing till she gets off the CPAP. So we will all just sit and wait and see what happens. But I have to say pumping is not fun, I need to pump but I don't like it. And I was kind of getting excited to see that maybe Jade was going to be ready, but no the reflux had to take it all away. Down with Acid Reflux.

Twinsies

Cute little buggers aint they? Beth and I went and found these outfits for them in babies r us these were the smallest premie clothes they had.

So Jade is doing pretty good on just the cannula she was having quite a few desats so they put her on the high pressured one and now shes doing a lot better. So hopefully she wont have to go back on the CPAP. Its so nice to be able to see her cute face.  Most of her desats are happening when shes eating so they think she has acid reflux, they are giving her medicine for that now to help. Which also might be why she is doing better.

Sofira is slowly coming down on her pressure and volume on her CPAP they say maybe next week sometime they will try her on the Cannula. 

Jealous Daddy

Sorry I haven't posted for so long, holidays really ruin peoples schedules.

So Beth got to hold both girls last night at the same time ... Im so jealous, but I am happy for her.  It was fun to be able to talk to both girls at the same time. Over Thanksgiving the kids got to come up and see the girls a little more, Zaydn had a struggle with wanting to go see them until Sofira held his finger for a while now its his favorite thing to do.

So both girls are still doing great. Jade actually came off of the CPAP last night and is taking to just the oxygen really well.  Both girls have been gaining weight and doing good. The nurses got after us a bit for not coming up to hold them as much as they need. Its hard to balance our schedules to find time to do all these things. It takes an hour each to hold them and another hour to get everything setup. 3 hours everyday is hard to find babysitters for with everyones busy schedules. That of course is just our holding time then we go up other times throughout the day to let them hear our voices and see how they are doing. This along with having sick kids and not wanting to send them to babysitters, makes our life good fun to try to figure out. I just want to say thank you to everyone that has helped us babysit we really appreciate it especially Grandma Scholes.  We also appreciate all the food and other things everyone has brought to help us out. It has saved us a lot of time to not have to make meals.

Happy Thanksgiving!!

Hey all the girls are doing good, Jade is off of her phenobarb medicine for the last day or two and hasnt really had any seizure action lets hope that keeps up. Both girls are doing pretty good on there CPAP still they have the occasional DESAT where they forget to breath but those are getting less and less. They are still swinging a lot, our nurses love us for all the work they keep them doing.

Oh also don't forget to check out the chart I added of there weights on the side.

Sisters new clothes

Hi It's Beth,
I wanted to try to write a post. With most of the wires and tubes gone the girls can now wear cute tiny outfits. The clothes are sooooo small. When I looked at them I wondered if they would even fit. Jade is now close to 1500 grams and the clothes fit just perfect. Sofira is still around 1200 grams and the clothes are huge on her. They just fall off her, so we fold the clothes in the back so she can keep warm. It's really nice to see them wearing clothes. It helps me to see that they are doing well and moving forward. We are still having a few apnea episodes but the doctors feel that they are both stable enough to stay on the CPAP's. They will be on the CPAP's for a few weeks and then they will try breathing on their own. We'll see what happens and hope for more good days and cute outfits.
Jade is in the blue-green outfit and the star sleeper.
Sofira is in a little pink outfit and a cute little yellow Sunday dress.

Sofira Sounds

Thought I would share Sofira's cute little sounds with you today... enjoy!!!

Sofira

Sofira Crying


I tried to get Jade to make some noises too but I guess she loves life too much to complain about it ;)

Jades Turn...

So I got to hold Jade tonight and she thought she would show me something cool. She was like look daddy when I hold my breath I can make the alarms go off... And then she showed me if she holds it long enough she can make herself go all purple.  I told her wow thats a pretty cool trick you got there but maybe we shouldn't do that anymore.   She must not of listened to me though because she's been having several of these episodes. The nurse really wants to give her another dose of decadron as well since it seems to have helped Sofira. The problem is the doctors have to make the order and haven't come around for a bit. They had the ventilator there close in case they had to put her on it before they could give her the decadron. 

Hang in there girls....

Sofira is Struggling

So Sofira is once again struggling on the CPAP she is better then she was yesterday but still having issues. The doctors have decided to give her another dose or two of decadron before they put her back on the ventilator. This should help several of the symptoms she is having.  I had a good chat with both girls last night and congratulated them for doing so well on the CPAP, I really hope Sofira can stay on it.  

Jade is doing great on her CPAP we gave her a full blown bath last night, Beth decided I had to help this time so my job was to make sure Jade didn't go under the water. I figured she had a snorkel on though so I just dunked her a couple times is all. OK OK I didn't dunk her but she was sure wanting to go under. She was loving it, unlike Sofira the other night who cried the whole time. It must of been cause I wasn't there to play with her.

I apologize for the lack of pictures i'm missing my cable today so I'll have to get them on later. When I'm at it I will also update the slideshows with all the pictures we have taken. <--- as you can see I got the pictures added in...

Sofira is Back Off

The doctor just called and said they took Sofira back off the ventilator. Lets hope she stays off this time, we need her to stay off we don't want to have to give her anymore decadron or have her get the soar lungs from the ventilator.  Thankyou again for all your prayers for our girls during this trial in there lives.

Were off the ventilators!!!

So because they decided to give the decadron the doctors also wanted to try the girls on the cpap again with the help of the decadron keeping the inflammation down. Jade is doing really well on it. Sofira has been swinging quite a bit.

UPDATE: Just got off the phone with the doctor and I guess Sofira was just having to many DESAT's to stay on CPAP, so she is back on the ventilator again, although she is already pretty low again on the ventilator settings so they may try again soon.

To give or not to give...

So the doctors today decided to give the girls Decadron which basically will help there lungs by decreasing the inflammation and swelling.  Being on the ventilators for a long time causes infections and soarness etc.. so hopefully the decadron will help them come off faster. The decadron isn't without its side effects though so it wasn't a light decision to put them on it. I guess the biggest thing is it will slow down there brain development and size. They said they will do just 3 doses to minimize this.

Sofira did lose quite  a bit of weight today shes down to 1160g.

CPAP didn't take

Well they put Sofira on the CPAP for about a minute today and she just wouldn't breath on her own so they had to switch her back.  She had a rough time for a while there getting back to a settled down state, but she seems to be doing good again now.  Jade was switched to a different bed again. I guess they normally switch them to these types of beds when they are over 1500g and on the CPAP, since she isn't either of those I guess they ran out and needed her bed for another baby. She is close to that though. I imagine that is the bed they will put both of them in when the time comes as well.