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.

Hard Work

Beth got to give Sofira a full blown bath tonight, It was such hard work for them that Jade and I had to take a nap.

They have decided to try to take Sofira off the ventilators tomorrow, we will see how she does. Jade will be following her probably the next day. Hopefully all the mucas will have gone down a lot more by then because she will have to cough it up herself when they get the tube out. Jade broke the 1400g mark tonight and Sofira didn't change. They never did try to do another spinal tap on Jade, I guess they figured she had enough. They did a white blood cell count from her blood and it had gone down so they aren't gonna worry about it, too bad she had too be poked so many times for nothing...

Overall both girls are doing really well, lets hope they can make it past this next phase onto the CPAP's.

Ouch...

Jade has been trying the last couple days to get her spinal tap done but each time they try to do it she ends up moving and blood gets in and messes it up. This has been about 5-6 times now that they have tried. Her poor little back is just full of holes.

Other then that everything with the girls has been about the same, There weights haven't even changed. Both are still a little raspy and getting mucas in there lungs that they have to suction out.

Beth and I have been a little sick lately as well so we haven't gone up to see them as much for fear of making them worse.

Kisses

So I'm a little frustrated because for some reason I didn't think we could kiss the girls. Come to find out Beth has been kissing them all along, dirty bugger. So anyway I got to kiss the girls finally.

The girls are still a bit sick, they are suctioning out Sofira every half hr or so. Jade is at about every 2 hrs. Both girls are doing great in weight Jade is at 1340g and Sofira 1135g. We haven't heard how Sofira's EEG monitor results went yet. Sofira got her pick line out today so she is like Jade now in the amount of stuff attached. Jade I guess is getting another Spinal tap due to her infection they want to make sure it didn't develop into Meningitis. They will probably end up doing a Spinal tap on Sofira as well once we get the results of her EEG back. Sofira has been quite twitchy lately. I held her while they were changing her linens and she was twitching the whole time. Its kinda hard to see her that way, I just pray both girls will overcome this twitchy seizure issue, Jade was a bit twitchy tonight as well. Anyway another day down well see how tommorrow goes...

Swaddled

The girls have enough stuff off them now the nurses have started to swaddle them in there blankets. I never could figure out why babies like that it would drive me nuts. I'm so bad I even untuck the entire bed at night, I have to be able to move.

Sofira got hooked up to the EEG monitor today I guess she didn't want to be out done by her sister. She has been getting a little twitchy latley as well. We will see if she is having seizures as well. Sofira has also gotten progressivly more mucas in her lungs, they are having to suction her out every hour now. The respritory therapist really does love her, it's kinda funny cause all the doctors seem to congregate to our girls bedsides now instead of there usual gathering places.

Jade got her pick line out completly so all she has left on her is an IV on her foot and her vent. After they took it out they did another blood test and she came back negative for her infection so they are thinking it might of been caused by that. She is looking really good now that she has lost some water weight.

Both girls are doing good at feeding, Jade is at a full feeding of 1oz and Sofira is at 1/4oz.

Swinging

Sofira has been swinging up and down on her ventilator settings all last night and today. The Respiratory therapist has to stay right by her bed dialing the numbers the whole time. Her respiratory rate is going anywhere from 30 to 110 they like to keep her from 85 to 95.  Sounds like their not completely sure why she's having so much struggle, they gave her medicine to try to sedate her but that doesn't seem to be helping to much. They also started her on Antibiotics just in case. 

Jade's test came back with something that is very close to a staff infection, so she is on Antibiotics as well. She has been doing really well at getting rid of her extra fluids lately, every diaper the nurses change are just soaked and she seems to like to wet on them every time they change her as well. Maybe Sofira is up and down cause shes concerned about Jade...

Dinner Date

Oops I forgot to post yesterday, sorry about that. Im surprised my Mom hasn't called me up about it yet ;)

So we got to hold the girls again last night. This time I held Sofira, it was a dinner date. I got to squeeze the syringe with milk every so often. She kept trying to look at me to say thankyou Daddy. 

Both girls got there belly button lines out so now they are just on pick lines. Jade is starting to get medicine just with her milk so they may even be able to take the pick line out soon. Its much nicer to look at them cause they don't have nearly as many cords and lines coming out of them. 

Jade was rather lethargic last night, hardly moving at all. Beth and I were a bit concerned about it. This morning she was moving around more though so that was good. The doctor says she's getting an infection so Im sure she was just drained because of that. There gonna start her on antibiotics to help with that.  I really hope it wasn't me who gave it too her....

Jade was at 1340g last night and Sofira made it up too 1000g, woohoo!! She's looking so much better these days. Jade is actually looking a little too plump and there hoping her weight will go down some, she's got a lot of water weight on her.

WooHoo!!!!!

No im not saying this because Obama won... Im saying it because we got to hold the girls tonight!!!!

I tell ya there is not much better in life then getting to hold your premature newborn babies that you haven't had a chance to hold for a long while yet. Beth and I were both just beaming when we were holding them. Beth had Sofira and I had Jade.  Jade and I had a good long chat, she promised to be a good girl for me, then we took a nap together. When we woke up I showed her how the elections were doing on my IPhone and thats when she started to get fussy, I didn't blame her too much.

The girls were both up in weight tonight at 1320 and 990, Both girls are getting a lot of mucas in there lungs we will see how that turns out. 

A very good night for us, Beth really needed this to help her through. I'm very grateful we had this opportunity.

Pneumonia?

Sofira may have pneumonia, she has been getting a lot of fluid in her lungs lately so they are gonna do some tests to see. If she comes back positive they will start her on antibiotics. Sofira's is slowly getting used to Beths milk so they will increase her feedings slowly overtime.

Jade is doing pretty good, she is still hooked to the eeg monitor and is on Phenobarb, no Seizures for the last few days still although she does get twitches occasionally.

Oh the girls wanted me to remind everyone to go vote to make sure they have a good country to grow up in.

Tummy Time

They had both the girls on their tummies this morning, They looked like they really liked it that way:

Both girls are up in weight Jade at 1320g and Sofira at 880g. I guess they put Jade back on the Phenobarb but still no seizures. Sofira was put on the Conventional Ventilator as well last night like they said they would, shes at 20bpm and Jade is at 17bpm. Because the girls are on the conventional ventilator if were really lucky we might be able to hold them both soon, Woohoo!!

An Aching Heart and Empty Hands

Beth wrote this tonight and shared it with me so I convinced her to let me post it as well:

I long for the touch of my babies. I feel their little breaths on my face, and heart beats next to mine. Just looking through the glass is hard to look but not touch. I long to feel how soft they are and smell that new baby smell. To rock a happy full baby after feedings. To listen to a cry any kind of cry. To know they can move with ease and make noise to talk to me. To comfort them when struggling or in pain. To calm them with my presence and smell to bring them relief from stress. To nurse them and see the contentment I can bring. To sing a song of joy and Christ to bring smiles to their faces and hearts. To have them home to feel complete. I have my other wonderful children that make me smile and bring me joy. I love them so much. But there is something missing, two little ones to love and kiss. But until they grow stronger to join us in this crazy world I will remain with an aching heart and empty hands. 

The Ventilator shuffle

So I guess there are 3 different types of ventilators that the girls have been on. Each type is used for specific cases. The Oscillator breaths 600 breaths a minute. This helps build there lungs and is the typical one that is used for very premature babies. The girls cant be moved much on this type because it has a hard tube going from the machine to the mouth. This is what Jade has been on mostly. Sofira started on this but then moved to the Jet ventilator when she was dealing with her lung. The Jet ventilator also breaths several breaths a minute (don't think its quite 600 though) but it also helped specifically with the air bubble issue. The last ventilator type is the Conventional ventilator which breaths anywhere from 0-60 or so breaths a minute. This is used to help get there lungs going with full breaths and give them a chance to breath on there own some as well. When set at the lower settings it just gives them a break every now and then. The girls should both be on the conventional ventilator now. Jade was on CPAP earlier today but was struggling a little still so they moved her onto this one when I was there. Sofira was on the oscillator but was getting hazy lungs so they were gonna move her to the conventional ventilator as well to help clear out her lungs as well as get her more ready to go on CPAP.  They had Jades conventional ventilator set to 36 breaths a minute.  They will keep trying CPAP whenever they can, each day is a new day and they may have progressed enough to do it, each time they try if it doesn't take they will just move back on to the appropriate ventilator.

Jade gained a bit of weight she was up to 1280g.  Sofira lost some and was down to 835g.  Jade also has not been on any medicine for her Seizures in the last 48 hrs and also hasn't had a seizure in that time either. Hopefully this is a very good sign that she has that issue kicked. They still have her on the EEG monitor since it hasn't been needed elsewhere. Overall both girls are doing great, hopefully Sofira will start gaining a little more weight but that will come.

Missing my girls...

I didn't get a chance to go see the girls today, Halloween parties and other things got in the way. Beth says that they are still doing good though. They put Tinker Bell on there bed sheets for halloween (they like to do the same pattern on both beds). I thought that was very appropriate. Both girls are eating beths milk now, Sofira 1cc, Jade 1/2oz

Sofira had to go on the ventilator cause it was too much for her to do the CPAP still. She and Jade ended up switching ventilator types. So Jade is now on the one that Sofira was on when she was dealing with her lung and Sofira is back on the normal one.

Jade had a bow in her hair today, she isn't wearing the cap anymore because she is hooked up to EEG machine again to monitor her brain. She was switched to the new ventilator type because her lungs were getting a little hazy and that one is softer on the lungs and helps clear that up better.

Oh just as of note because I've had a couple people ask now, the girls are right here in Provo in the Utah Valley Medical Center. They have one of the best NICU's around so this works out nice for us as its just right next to where I work, and only 2 miles from home.

Doing Well...

Sorry I didn't update the blog yesterday, getting ready for halloween has been keeping me busy.  The girls are doing great!  Sofira couldn't be outdone by her sister for too long so she used her cute looks to convince the nurses to give her a fancy new giraffe bed as well. Shes been up and down on weight but right now she is up in the 800g range (almost 2lbs).  They are gonna switch her off onto the CPAP today and see how she does, if not she will be put back on a different type of ventilator.  Beth got to go in and give her a bath again last night and just as she was touching her she opened her eyes with a grumpy face as if to say thats cold mom... 

Jade has been gaining more and more weight she is almost 3lbs now, shes hasnt had any major seizures recently but she still is pretty twitchy. Overall both girls have done really well the past couple days.

Thankyou All...

I just wanted to write a quick post and say thank you for everyone who has been supporting and praying for us. I noticed my hit counter passed 1000 hits tonight, I am baffled at how many are out there rooting for us. When I decided to do this blog I initially thought just my immediate family would come visit occasionally. I never dreamed so many people would take interest. I've heard a lot of people thanking me for doing it and how much they appreciate our faith towards the situation. That faith comes from so many friends behind us. We do feel loved and know that we are not alone in this challenge.

Proud Momma...

Beth got to give the girls there cotton ball baths tonight. She was beaming with joy after. Im glad I didn't do it cause I would of been scrubbing on them to get all the whites stuff and tape and such off. I guess your not supposed to scrub at all, just dab.  

Sofira was down a little tonight when we weighed her, she also was having several desats, where her respiratory rate and heart rate drops.  I gave her a good talking to when we left tonight to make sure she wouldn't do it anymore. We will see if she is an obedient child or not ;) .  When it happens they have to suck out all the mucas and junk out of her breathing tube. If that still doesn't help they end up replacing her tube.

Jade is doing good she gained another 100g or so. They switched her Phenobarb medicine to something else, because she was needing too much for what her system could handle. We will see how well this new stuff works.

Shes Awake!!!

Its so good to see Sofira moving around again. You don't realize how much they move until you see them not moving.  Slight little finger movements or toe crumples etc.. , they all bring joy to my heart to see again.

As you can see in the x-ray Sofira's lung is expanding nicely, it still has a ways to go but its getting there. Her right lung started to collapse a little last night but you can see this morning where thats no longer the case. 

Sofira is also starting to round back out again now that shes laying on her back. Its much nicer to see her this way. Also with her lung filling up with air her chest is starting to be fuller and not show so much skin and bone.

I talked with the doctor this morning about Jade and her seizures, they really don't know what else to do for them. They will just keep giving the Phenobarb and then hope that its just a premature thing and that she will grow out of it. He was saying that she may end up with seizures throughout her life though. Beth's response to this news was "I guess we will have to get a good dog to help detect them coming and protect her."  The doctor said they will do another brain scan at 30 days and look alot closer at everything to see if there may be anything wrong. She will also have a MRI at around 6 months.  

A Fathers Faith

My two little gems
you decided to come early.
Little did you know
that life is so squirly.

Its such a big world
for so tiny of hands.
Im sure you feel inadequite
for what life demands.

Its so hard to breath
or even to eat,
such a struggle to get
that tiny heart to beat.

With all the sounds
and giant faces,
you wish to return
to previous places.

But dont you worry,
despite this change.
I know you'll make it,
no matter how strange.

Because Dad will be here
every step of the way,
too wipe your tears
when you've had a hard day.

There are many others
that care for you too.
They also are praying
to help you through.

With our combined faith,
I have no doubt.
The Lord will provide
and help you out.

With Faith on our side,
all is in line.
Now its just a matter
of waiting the time.

Malleable?

So seeing Sofira today after being rolled back from her side really harrowed up my soul.  She looks so skin and bones. I noticed that gravity took a toll and really flattened her out sideways, its not as easy to see in the picture but her head is really flat and narrow as well. Those premature bones must really be malleable to gravities effect. You can see the effect on Jade as well in the other direction. We really need to get them out of those beds and hold them to give some shape to there bodies. 

Speaking of holding I got to help weigh Sofira tonight, Beth was steaming with jealousy after that. Ive got to hold them both now and she has barely even touched them (she was in the other room at the time). She did feel pretty good about the nurse allowing her to change Jades diaper today though. The nurse actually offered for me to change Jades diaper yesterday but I was like uh no thats your job, why do you think I have her in here, so I don't have to do it. ;) 

Both girls are doing about the same as earlier.

Another Seizure...

Jade is just struggling with those, they did the Spinal Tap (Lumbar Puncture) last night and the results came back as normal which means its probably not Meningitis. They upped her Phenobarb medicine, to see if that will help reduce the episodes more. Both girls today were discovered to have hypothyroidism so they gave them some medicine for that as well.

Sofira was rolled over this morning and the doctor was saying her lung was expanding pretty good.  They will wake her up when its fully functioning again.

Welcome to the Family!!!

Show Off!!!

I got to pick up Jade today for a few seconds when she was getting weighed.  She must of decided to show off for me cause shes up to 1080g.  Beth was way jealous.  I think the weighing last night must of been off cause her weight had us all confused to jump 300g like that.  Holding her finally, was a great bonding experience for us. It also made me realize how bad her twitching really is, I hope the doctors figure out what's up with that. There going forward with the spinal tap tomorrow.

Sofira is for sure getting woke up tomorrow, cant wait to get my girl back.

Upgrades!!

Well this morning Jade was doing pretty good, they got her one of the fancy new beds because they do better at reducing noises and thus hopefully she wouldn't be so twitchy.  She is been quite a handful recently though she keeps kicking out or pulling out her pick lines, like 4 times now. Her weight is back down to 733g. The brain monitor picked up some seizure activity, so they really want to do the spinal tap to check for meningitis, but they have to wait to do that until for sure there is no infection. Shes been doing pretty good breathing so there gonna aggressively work on turning down her respirator and get her back on the CPAP again (probably by tomorrow sometime).  Beth and I are thinking the seizures were happening even before she was born, because beth felt her moving in a twitchy way a lot in the womb.

Sofira is still just laying there not too much activity with her. They turn her respirator up and down every now and then, and keep monitoring her blood work to make sure she is doing good. They took off her external blood monitor cause it was too hard on her skin. There more fancy monitor that takes the blood out tests it then puts it back in doesn't want to work (brand new go figure). So there doing it the old fashioned way of just doing labs every so often. They are gonna wait and wake her up tomorrow. I'm just glad I don't have to be the one to tell her when she wakes up that her sister got the hook up with the new bed...

Anyone know how to get this armband off?

A rough morning...

So Jade had another rough morning today. She pulled out her pick line so they had to put in another one in her leg.  They got the EEG hooked up and have been monitoring it.  It hasn't shown anything as to why shes been twitching. There thinking about doing a spinal tap to do some tests on her nervous system fluids. They don't want to do that until shes off of the infection stuff that they have her on. Speaking of the infection, cultures came back on that yesterday and they didn't grow anything bad so it may of been a false alarm. They were just continuing the treatment to be on the safe side. 

Jade's PDA in her heart is closed this morning which is great news. Also the Potassium levels have stayed down so she hasn't had to take insulin for a while. Her brain ultrasound also came back all normal again.

Sofira is still quiet, they say maybe one more day and she will be able to go off the Pavulon that is keeping her from moving.

The breath of life

Its amazing how well Jade has improved now that shes on the ventilators again. She gained another 120 or so grams today to put her up around 830. By not having to worry about breathing she can focus her energy on other things.  They did get her pick line in but they didn't get a chance to put her eeg monitor on yet. Beth was feeling bad that she couldn't stay and help her through it when they did it. Its gonna be harder now that were at home and cant go up and see them whenever we would like.

Sofira also is up another 50g to get to 750, All is calm on her front. I miss seeing her move around, She looks very serene but I know her little mind is wondering whats up.

Wheres my food!!!

Both babies gained weight yesterday. Jade is at 714g and Sofira is at 700g. Sofira is starting to look a little chubbier a lot of that is because of the drugs shes on to make her not move. Heart echos this morning showed that the PDA hole in Sofira's heart was closed which is great. Jade's isn't quite closed yet but getting there. Both girls Billy rueben count is down as well.

The big news happened this morning when all of Jade's stats dropped significantly. The nurses reacted quickly and got her on the ventilator. In all the commotion the tape holding her IV line in her belly button got ripped off and took some of her skin with it. The IV line got pulled out a little as well so they are gonna have to take it out the rest of the way and drop a pick line in her arm instead to do her IV.  She is doing well now on her ventilator.

Jade has also been very twitchy since she was born. She had what seemed like a seizure yesterday as well but this was shortly after giving her the Versat drug which can sometimes cause twitchy seizure movements. There gonna put on a EEG monitor on her just in case to see how things are going.

Oh and yeah there kicking us out of Beths room now...

We love our Momma

So Beth is still in the hospital, we've been begging the doctor to let us stay as long as we can. (Don't tell grandma) We really like this vacation away from the kids.  We will most likely go home tomorrow. 

Beth's C-Section is healing fine, although she is getting an odd infection or allergic reaction. Basically its a large red triangle with her belly button and the two ends of the incision as the points. The doctor just gave her antibiotics and is hopeing it will go away. Guess we will see in the morning.

Big feet ... Large shoes

Sofira is pretty lifeless tonight and probably will be for the next few days because of the medicine shes on. They are giving her caffeine as well to stimulate her mind and nervous systems since she cant move at all. I guess there trying to get her addicted early in life. Poor girl didnt anyone tell you to avoid addictive substances...  Oh wait hmm that was supposed to have been me.  

Sofira's lung is starting to collapse, they took an ultrasound at 4 showing such. Her heart rate has been up and down today as well.

Jade had a few episodes of Apnea today if she keeps it up they will have to put her back on the ventilator, I'm thinking she wont need to though shes too feisty, time will tell I guess. Jade really doesn't like to be wet. She was fussing up a storm when I was there because she had a wet diaper.  Jade is also sporting the old look these days with all her many wrinkles due to her weight loss. I didn't realize old could look so good. I do miss her chubby body that she had right when she was born, you can kinda see the difference in the pictures of her if you look close.

Oh yeah and  look at the size of those clodhoppers on Sofira...

23 weeks is minimum

We were talking with the neonatologist today and she was saying that if they are less then 23 weeks they don't even really do anything for them they are just too small. 26 weeks used to be the minimum not too long ago. Im very grateful we made it through to 26 weeks. They are tiny but they will make it through.

Bubbles

Sofira's ultrasound on her lungs this morning revealed some bubbles between the cell walls of her air sacs. In order to treat this there gonna put her on her left side and let her lung collapse. This should push all those bubbles out. Since this is a very delicate process they are giving her medicine that will keep her from moving at all for the next couple days. They are gonna put her on a new ventilator that works better for this sort of thing. Her right lung will have to do all the work for a while.

Sofira also gets bruises real easy. She has bruises all over her body from all the different things they have to keep on her. (Yep definitely her mommas girl)

Jade is doing better this morning her color seems to be improving, her potasium levels are down. Overall she and her stats are returning to normal. Though she is still losing weight but not as fast.  

The girls have the same nurse today which is kinda nice.

The Blues are singing...

Beth has been having some struggles with that empty feeling inside.  She has always struggled with baby blues after each pregnancy but its always harder to deal with when the babies are in the NICU because we cant hold them yet. It probably doesn't help either that the doctor switched her meds as well. 

630g vs 709g

There weight is getting closer and closer to each other. Hopefully soon they both will increase. The nurse says there weight will be a roller coaster but the average over time should keep increasing.

Potasium is down on Jade so the insulin is working. She also seemed less red tonight so hopefully we are doing good with preventing the infection. 

The ventilators were turned up more for Sofira, still trying to get those lungs back going strong.

The Babies are considered disabled...

Since the babies were born weighing less the 1200g they are automatically considered disabled for at least their first year. Because of this we may qualify for money from Social Security which could be anywhere from $0 to $500 or so a month to help them. We can use this money for whatever we deem necessary.

We also found out that any baby that stays in the NICU for at least a month qualifies for Nursing Home Medicaid which will pay for everything our insurance doesn't. 

Prayers for Jade today

Jade has lost 264g since being born, this rapid loss of weight has caused a lot of stress on her. The doctor gave a page and a half of orders to try and help her today. She also is rather red so they think she might be getting a yeast infection. They put a powder on her to prevent this, as you can see in the picture. Hopefully its not an infection because that would be really hard on her.

Both girls are up on there billy ruben count so they are under the lights again. If this doesn't work they may have to do a blood transfusion to help with this.

They are giving them both medicine to try and close the holes in their hearts, Sofira was not quite getting enough blood to her brain so hopefully by closing the hole in her heart this will help that.

Jade's potassium levels are up so they are giving them insulin to help with that. They really are twins because Sofira's is starting to rise as well.

Jade is still on the CPAP as the picture shows so she is doing really good there still.

Sofira only lost 27g the first day so she is doing pretty good weight wise. Weight loss is normal after babies are first born.  I think Jade is just trying to get down to Sofira's weight, cause she misses her...

Sofira had a lot of stress from the attempt at going off the ventilator and her lungs are showing it. They had to up how much she was using the ventilator to compensate for this. They basically are building her lungs back up again.

Checklist to go Home

I asked a nurse to make me up a checklist for everything the twins have to accomplish in order to be brought home. These are the pertinent items she came up with for me:

• She needs to be able to breathe on her own without any support other than oxygen
• No Episodes of apnea or bradycardia (stopping breathing or drops in heart rate) also known as A's and B's
• She needs to be able to maintain a normal temperature on her own without needing a heat source (usually around 4 lbs)
• Appropriate weight gain over time
• She needs to be able to take all of her feedings orally without supplementation, usually for 24 - 48 hours

Not Identical

We found out today Sofira has Type A+ blood and Jade had type A-. This proves they aren't identical. It also means Sofira might be from a separate egg that dropped a couple of days later that happened to succeed as well in getting pregnant. This would explain why shes behind her sister a bit.

"Why" they were early...

Monday Beth started having really bad brackston hicks, or so we thought, that kept getting closer and closer and harder and harder. At about 3PM on Tuesday she started bleeding, that was when she was like I better make sure I dont have an infection or something so she called me to come bring her in, I told her i'd be there in a bit once I finished up what I was working on (which luckily wasn't anything long). She realized Jason was available so she just had him bring her to the hospital and asked me to meet her there instead. When we were there they checked her and she was completely dilated and effaced. They then saw a bunch of water and blood come out so they assumed Sofira's water had broke. Because both babies were breach they rushed us in to the OR and performed the C-Section.

As to why she started labor early we have several theories but no definite answers, Beth thinks its because she got an infection and that spurred on the process. I think it might have something to do with Saturdays full day of shopping she did for me for christmas. Its possible Sofira just needed to come because of some other issue. It certainly is a blessing in a way for Beth to not have to get extremely huge and be on bedrest for so long. The Lord is watching out for us we know and maybe this is just the way it had to be.

"Sofira" Pronunciation and explanation

Sofira is pronounced "So Fear uh" like "Sapphira" except with an "O" as in Sophia. Yes "Sapphira" is the name of the dragon on Eragon. Its also the name of a lady in the bible best known for how she lied in paying her tithing. (This is probably why this name never caught on) Sofira however has wisdom added to her name with the Sophia portion of it so therefore she wont ever make that mistake ;)

Coincidentally Jade ended up having the symbolic meaning of Wisdom as well. I was quite excited to discover this...

We will probably end up calling her "Sofi" quite often, though I give no guarantees we were planning on calling Evndar "Evn" and have never really done so "Vander" seemed to fit him better.

Current Status, Test Results, Etc...

We heard back about their Brain ultrasounds and everything is normal on both. Lets hope it stays this way as they grow. They also did a echo on there hearts to see how it is and just as expected they have holes in there hearts still. These should close on there own as they get closer to term. Jade is being a little shining star and actually came off the ventilator and has done great on the CPAP all day. Everyone in the NICU cant believe how well she is doing for her age. They even said we might be able to hold her tomorrow. She also may be able to move over into the same bed as Sofira tommorrow as well assuming Sofira is up to it. Sofira tried to go off the ventilators today as well but she didn't quite figure it out yet. So they put her back on to give her a little more time to develop. She's still pretty tiny so this isn't really a big deal.

Birth Details

Sofira Gineal Stott

1lb 11oz, 13in, born Oct 21, 4:58PM

Sofira:

 - From the root names "Sophia" meaning Wisdom and "Sapphire" the gemstone symbolizing Truth Sincerity and Faithfulness.

Gineal:

 - Grandmother Stott

Jade Lydia Stott

2lb 4oz 13.75in born Oct 21, 4:59PM

Jade:

 - The gemstone symboizing Serenity Wisdom Balance and all things associated with the best of spiritual practices.

Lydia:

 - Grandmother Scholes

Welcome!!

I have created this blog to update those who are interested on the status of the twins Jade and Sofira.  They were born being only 26 weeks along, so they have a long haul ahead of them in order to come home to us.  Your prayers and support are much appreciated.