It's almost time

So the doctors are thinking that they might try to send the girls home next week. They are both doing really well in their feedings. I go and feed them now 4 times a day. The other 4 times are are still tube fed. We have decided that we will do both nursing and bottle feeding. I will nurse one and bottle the other and then switch on the next feeding. That way they are both nursing and bottle feeding. I have to do both because i just don't make enough for two babies. Jade seems to do ok with both so far. She is the type that she doesn't care how she gets food as long as she gets to eat, tube, bottle, or nursing. Sofira is still getting the hang of eating. She will down a bottle in no time and she likes to nurse. With Sofira nursing can be a long process. She is not one to just wake up and eat. She likes to talk with ya, look around, and then eat. So it's nice because Jade is so the opposite. Once her eyes are open there better be food waiting for her or she screams. So i figured I would feed Jade while I was talking with Sofira. That way everyone is happy and gets their needs met. 

Right now I am excited and a little nervous for the girls to come home. I really want them to come home, but I know there will be yet another big transition in our little/big families lives. The doctors will be sending them both home with oxygen and monitors to help us watch for their little apnea episodes. Which I am glad, otherwise I wouldn't get any sleep because I would feel the need to watch them all the time to make sure they are breathing. The oxygen is mainly for eating purposes. Both girls tend to breath less when they eat. The oxygen will help them to maintain higher levels of oxygen in their bodies so they have enough energy to actually eat all their food. If the oxygen levels fall to much then they spend more energy breathing so they have less energy to eat. 

I know that everyone really wants to see the girls when they come home. And, I wish that i could throw a big coming out party. But, I can't it will have to wait till April. The girls will have to be kept in the house all winter. We can't have visitors in and we can't take them out. We have to really careful to make sure they don't get sick. A little runny nose is not much for a healthy person, but a little runny nose to the girls could put them back in the hospital. I hope that i can help them stay healthy with my milk, but they were really early and their immune system is still weak. So we will love ya'll from a far for a little while and then we can party when RSV season is over. 

An Update for my Bro

My 4 whlr isn't fixed yet...

Oh wait you wanted more info about the girls sorry my bad.

Everything is about the same with the girls they have been working on there nursing. Beth and I are debating wether to just bottle feed them since it will be a lot easier on Beth and since she isn't making enough to feed them both. We will see I guess. Jade was able to nurse a full feeding a couple days ago. It tuckered her out pretty good though and she hasn't been up to much nursing since. Sofira is coming along as well, consistently nursing about half her feedings.  Sofira is still on the cannula since the acid reflux thing. They took Jade off her monitors since she didn't desat for 24 hours. Beth and I promptly complained and said to get it back on, good thing too because she has started to have trouble again, so much so that they are threatening to put her back on the cannula as well.  I guess thats the joy of having new nurses that go by the book instead of by what the girls really need. We miss our nurses from Nursery A that knows the girls (and us) a lot better, they come over and work in B when they can but the LPN nurses can only work in B so if there are too many LPN's on our primary nurses don't get to come over.   Speaking of primary nurses its kinda funny how they tend to fight over which of them gets to take care of our girls. Hmm, popular already i'm really gonna have to get a shotgun for when they get in high school I guess. 

Told ya so

Hi it me Beth,
As the girls moved to nursery B the doctors decided to try the girls off their reflux medicine, to see if they really needed it. And Yes, they do. The girls have been having a tough time in the last few hours. They both had to undergo a reflux test to see how much and how often they reflux. Poor things had to have tubes put down their nose and be hooked up to a computer to record a 12 hour period. So, from the test we learned that the girls are still having bad apnea with each reflux episode and they reflux quite often. With all the reflux the girls had to go back on some air. It is a very small amount but they do need a little bit of help breathing.
As their mother I knew that they were still having reflux and was hoping that the doctors would just keep them on the medicine. But we got to do what we got to do.
On top of all the reflux they also had another eye check-up. Their eyes look good. But both girls were just wiped out. They were so tired and exhausted. I hope that they will sleep well tonight and be happy and awake tomorrow. Only time will tell.

Eating well

Both girls are able to nurse half the amount they normally get through the tube, so they are both doing really good. Sofira was desating while nursing so we are giving her a little air with a blow by tube to help her out and remind her to breath while she eats. By doing that bumped her up to what Jade is currently doing of 24 cc's,  they eat 48 cc's a feeding  (1.5 oz).  So we just have to keep working there little mouth muscles and so forth to get them to be able to endure through a whole feeding.  They are so fun to hold now without all there wires and tubes and things on. I realized that I haven't put a picture up since they've been off the air so here is a few cute ones of them.

Nusery B here we come!!!

They moved the girls over to nursery B today!!!!  Nusery B is basically for babies right as there getting ready to leave.  The doctor called me today and said he is thinking Sofira might not ever nurse and that we might just have to go directly to the bottle.  I disagree however, since she already has nursed and is slowly starting to get it.  We learned the other day that Jades eye surgery may not have been enough and they might have to go in and do it again. We are waiting to see how the next test goes to know if they will do that.  Sofira's eyes looked great. 

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....