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.