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.