Sorry it's been so long!!

Needless to say life has been crazy crazy crazy!! So far Everyone has been doing well. The girls have been growing and growing. Jade is 18 lbs now and is moving like crazy. She is standing up to things and love to follow people around the house. Emptying the bookshelf is now a favorite hobby and so is putting anything and everything in their mouths. I will have chad post some pictures for ya soon.

Sofira is going to have a busy month. She has tests and surgery this month. She is starting to show a more delay in her development. She tests at a 7 month level. Last month she started to crawl around the house is now more curious about everything. Sofira's surgery is going to be on her back. There is a lump on her back that showed up after she came home from the NICU. The doctors want to remove it and test it to make sure that it is nothing. Better safe then sorry. Then a week after the surgery she will have a MRI and CAT scan to make sure her head is developing well and that there is no concerns for her delays and lack of head growth in the last few months.

Chad and I are not to worried about either procedure she will have to do. We know she will be fine. So hopefully i can find time to write during the month, to keep everyone posted. Think of her this month and say a little prayer for her.

Warmer days

Well the weather is starting to show signs of spring. I am so excited because we can come out of the house soon. In April/May we can start showing off the girls and taking them places. I am so tired of being in the house. I just want to break free and do something. The girls were weighed today. Jade is 10.9 lbs and Sofira is 9.14 lbs. They are growing up so fast. Well slow but fast at the same time. They will be 5 months this month. Adjusted age is 2 month old. Jade is starting to coo and talk to us. She likes to sit on our laps so she can see what is going on and she smiles big for her family. Sofira is still just a little groggy from the RSV. It might be a little longer before she will completly feel 100% but she is also starting to smile and make cute noises. We are loving having the girls home and have them to hold and love all we want. They still need the monitors and the breathing tubes but we are slowly getting to where we don't need them as much either. So maybe we can be off them by summer that would be nice. I would like to say thank you to my sister Haley and my mom for helping me alot. I will try to put some pictures on when Chad gets home, i don't really know how to do it. hehe.

Slowing down

Now that the weather is getting warmer and the sun is out more the girls seem to be getting better. Their noses are not so full and they seem to like to be awake now. Sofira is a big talker and loves to watch people. Jade likes to look around and eat. They are both growing so big. Jade is close to 10 pounds and Sofira is on her way to getting back up to 9 pounds. She had lost a lot of weight when she was sick. But she is doing well now. Both girls are starting to sleep better at night so I'm getting a little more sleep. I can't wait till they can sleep all night long :)
I can't wait till we can take them out and let people see them. I miss getting out and talking to people and having play dates. So this summer i hope to play alot and have some fun. This weekend we are blessing the girls here at home. So this weekend will be exciting and fun. Well time to eat again. I'll try to get on later.

Crazy Days

Sorry that there has not been any new blogs. We have been little busy. Sofira was in the hospital. She caught RSV pretty bad. For a couple of days she was struggling to breath. She was having apnea episodes every 10 to 15 minutes for two days. The doctor started her on caffine again to try to keep her brain stinumated enough for her to keep breathing. It helped a little bit but not enough. So I took her in and her heart rate dropped enough that they admitted her right then. And, then for the next four days (Feb 26-Mar 2) I have been in the hospital with her trying to help her. Having her there was really hard on everyone. The children did not like me gone, and Jade missed her warm body that lays next to her. I think chad did great he was alone for two days with all the kids at home. Way to go!!! :) We are all hoping that Jade does not get RSV. She is a little stuffy but i hope that was can keep it under control enough that we will not have to be in the hospital again. But we'll see. She seems to be getting a little worse. But i hope that by keeping her nose cleaned out she will be alright. Well i'll be on again i hope soon.

It's getting better

As time goes on things are starting to fall into place better. All the children are adjusting well. With my mom and sisters help I am able to steal a few more minutes of sleep during the day, sometimes. The girls are doing fairly well. They have grown a little. They are now over 9lbs. (oh Yeah!!) We are still battling head colds and flues at our house. The girls are still stuffy and we have to suck their noses all the time so they can breath. But nothing too bad has happened yet. ( knock on wood or something else.) Time is short so I'll have to write more later tonight.

First week Down and many to go

This first week has been long. As far as sleep goes, What's that? Good thing I'm young or this would be hard. . . (laughing and crying). I had the crazy idea that since they had been on a schedule for three months that maybe they would keep it. Silly me!! No the moment they left the hospital everything went a muck. The girls were not sleeping, they both wanted to eat at the same time, and the days and nights were mixed up. Which would of been ok , but the other five children still sleep at night and get up during the day. A little stress there. I have to give Chad my wonderful husband a few gold stars. He is so wonderful. He will get up and help me in the night to feed and take care of them, even though he has to work in the morning. ( love ya honey) Everyone in the family was doing so well at not getting sick. I thought we just might make it. No, They all got sick two days before the girls came home. So, needless to say the girls are sick also. Not so sick that they have to go back to the hospital and stay. But sick enough that I took them to the Doctors 3 times and the hospital 2 times. In the first week. Good thing they both are on oxygen. They have really needed it. And, the monitors just keep going off. Everyone seems to sleep through them, but me. I hear them all night. Which is a good thing, but I think that i might be going deaf. We went to the doctors to get all their shots so that they won't get sick, hehe, and to make sure they were not really really sick. Then at the hospital there is a suction clinic that I can take them to help keep their airways clear from their little colds. Which is really nice because then we don't have to go back and stay in the hospital because they are sick. We did have a little RSV scare, but the test was negative. (sigh of relief)
Now taking the girls anywhere is quit the chore. As you walk out the door you have, two small oxygen tanks, two monitors, and two big car seats, with 8 lbs babies in them. Well on most of my outings I had to travel alone, chad had to stay with the other five. Oh what fun we had trying to get to and from. I really need to start lifting weights so i don't die. And connected to all the equipment is wires and tubes. Needless to say, just standing still, let alone walking somewhere the wires and tubes tangled and then we would have to disconnect everything to seperate them. One time I couldn't get them seperated when going out to the car so i just had to put all the equipment in and both babies in one side and then climb in and put them in their seats. And i was alone and it was rain/snowing. I got my work out that day. And while all this fun adventures of so many fun outings, yeah right, my sisters wedding events were taking place. I did not make it to anything of hers on time that whole week, except for the wedding. We made it on time because i got up at 4 so we could leave by 7, which still didn't happen. We just made it to the temple on time. ( happy dance)
I have to say THANK YOU to all that helped take care of my girls. Jade and Sofira had to miss out on all the excitment. Thank You Sharik family, the Hansen family, Juna, Haley and Mom for going the extra mile and helping us out. Gold stars for everyone.

WERE HOME!!!!!

Saturday they had us stay in at the hospital and take care of the girls all ourselves, Then Sunday morning they said we could take them home. WOOT, So here we are living it up and partying with our baby girls at home. Ok ok I wish I could say it was like that actually its been quite a challenge keeping up with them. When we went in on saturday we brought a bunch of stuff with us thinking we would have 24 hrs to spend just doing nothing. Yeah we didn't get to any of it nor did we get any sleep. We had a rude awakening at how much work two babies were gonna be as compared to just one. We would just get Jade all settled down and we would think we would have a little time to do whatever and Sofira would start stirring, then when we got Sofira all settled down a few minutes later Jade would start stirring. After about 5 or 6 cycles of this we started asking ourselves now wait a minute when are we supposed to have time to sleep?  Thus why I'm writing this now instead of 2 days ago.  Were starting to get the hang of things but its been a struggle working through it. I'm just grateful Grandma is here too help because when I go to work Beth really needs her help.

So the girls came home on Oxygen and Monitors. The monitors are really annoying beeping all the time at us mostly because they keep coming undone or the leads fell off. There is only one volume to the monitors and that is Fire Alarm Loud. So this is what adds to our struggle we get both girls down but then the monitors start fussing at us as well. Jade likes to go into a deep sleep where she doesn't breath as good and so her monitor goes off frequently when she gets like that.  We have two big tanks of Oxygen with really long tubes so we can carry the girls wherever throughout the house.

All in all its fun to have them home but definitely a struggle that were getting used too.

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)