More help is on the way!

I just got word today that now that I get no help from Nick that I get more Medicaid hours! So, Excited! I get 8 hours at night (which I have now) AND 8 hours everyday when I'm not working and 10 hours when I am....I couldn't be happer. Just when I was getting overwhelmed. Perfect. Timing. I had a week of Thanksgiving off...out of all those hours to watch the kids guess how many Nick did? come on...guess.... ok one weeks worth of hours he did 6 of them. That's right 6. I was drained. I was looking forward to work as a change of pace. We quallify for Medicaid AND I get to shower AND leave the house every once in a while!!!

Christmas tree time!

The twins decorated their first Christmas tree...Their boy cousins came over to help. Alex loves his big boy cousins mostly because they think it's funny that he laughs at the sound of throwing up! SO there is a lot of throwing up noises when they visit. Lauren just adores her cousin Bryan who held her for a long time that night... We did a 9.5 foot tree we bought after Christmas last year. We did an all snowflake tree instead of bulbs...we stole this idea from Aunt Kelly who is also Martha Stewart.


I just wanted to add this picture of Alex drinking from a sippy cup ONLY when his girlfriend Savannah is around!

Happy Thanksgiving!

No one looks good in this picture! Ha!


We have SO much to be thankful for. Just this time last year I never would have pictured where we are today. Alex is currently napping and resting up for his grandma from Florida to fly in to visit tomorrow! Their great Aunt Nancy is also coming this weekend! I'm THANKFUL for all the help!
We are going to do Christmas cards for this year! I usually use shutterfly to do my cards. I'm pretty excited about this years card I don't want to give it away but lets just say it should be pretty cute! Just the kids and the dogs will be in the picture...I figure you already know what I look like and I don't change much from year to year. Everyone just wants to see the babies! Once we order from Shutterfly the cards gets shipped fast so expect your card in the next two weeks. I also usually do a Shutterfly calender every year. I think it's fun to have the kids pitcures on every one AND there are SO many people in my family it's great to insert a picture to keep up with it all! www.shutterfly.com/calenders have a fun selection AND it's usually what I end up gett my mom as a gift too!
Alex has been doing better with his feeds but it's still not great. I'm THANKFUL he eats enough to grow. Lauren is doing better and better. Nick bought her a bunch of outfits that have pants for the cooler weather...I keep saying she doesn't wear pants because her body is 24 month size but her legs and arms are that of a 12 month old. He arms are so short compared to the rest of her body when she got to Riley last June they actually called in a pediatric geneticist to make sure her chromosomes were alright. We were worried because Nick's parents are first cousins. But luckily everything is just fine. I call them her T-Rex arms. Slowly but surely she is growing into them. I'm THANKFUL one of our nurses took the time to shorten all the arms and legs to fit her perfectly! Now if everyone can just stay healthy! Pray for trach trials in the New Year!

I lift my eyes to the hills for my help is coming.

We. Got. Medicaid for 2011!!! I don't know how but with some fancy math and a lot of prayer we qualified! I didn't ask the questions of really? how was that possible? I'm just GRATEFUL. So here is a BIG THANK YOU for all who have been praying for us. I really will need the help in the upcoming months.
Lauren continues to do well at home. I did my first night shift by myself last night and it went great. She slept from midnight to about 6am. I of course had to get up at 4 am for a breathing treatment and when she triggered her vent but overall it went well. AT the last vent clinic the dr had dropped her lasix dose in half which made me REALLY nervous considering how swollen she got in the hospital. In the past week shes gotten a bit more swollen but hardly noticeable if you weren't constantly assessing her swelling...who me? :)
In the world of Alex we finally put up the baby gate to go up the stairs. Alex now pulls up on the gate and cries because he wants to CLIMB. We have also changed him from his EXPENSIVE formuls of Neosure to Whole mile and Carnation Instant Breakfast...he likes it better but no one warned me how GROSS milk vomit is...it is NOTHING like formula!
This was just a quick update on the Medicaid and thank you from the Key family!

Will the drama ever end?

Poor Alex with HIVES! and sweet sleeping Lauren!
First off, we're still in the middle of Medicaid Hell and I feel like I am going to lose my mind. Our Medicaid is set to expire Dec 31st. We do have GREAT private insurance but it does not cover any nursing for 2011. We would only get 100 nursing "visits" a year. A "visit" can last 30 mins. Great. So I can shower 100 times next year. I've spent most of the day on the phone with everyone from begging our private insurance to let us have 100 shifts again to begging the HR department to let me make 10$/hour as an NP so we can keep our nursing. They won' drop my pay. I don't think they understood. I cannot work with no nursing. I cannot shower with no nursing. Getting the mail involves running. I would need to sleep on the couch and she is due meds and feedings around the clock. The women actually said to me "well, I had very little sleep when my kids were little" Urgh. To which I responded "It's not like we can drop off Lauren at Polly Panda daycare for the day!" Heck, the WHOLE Community hospital system does not have the staff or training to take care of her and that's what we have to go out of network to Clarian. Right now there are 5 people who can take care of her. We always have the choice to readmit her to the hospital for 30 days to regain Medicaid. We would have to find someone who would train to take care of her. Most importantly she is BLOOMING at home and SUCH a different baby than in the hospital. I would have much of my post tramatic stress return and would pretty much need to be knocked out for the 30 days. PLUS, this is RSV season and the dirtest place on earth is a hospital...she WOULD get sick. She WOULD take a step back. Another option is to drop my workiing hours again to 16 hours/week. I would lose our health insurance by doing this which is really scary to me. If we don't get medicaid then it's just Nick and I taking care of her. 24/7. No break. I would either be at work or at home. I would be willing to do it. Push though it for Lauren. What's most important here? Lauren. We also have the option of Nick moving back in. If this was a 4 person household we would quilify on what I make now. He says no way. I have full coustody . This is my problem. If Nick were to get a job and not watch the kids while I worked and we didn't have Medicaid I would have to quit. there would be no other option. Lauren comes first. I'm going nuts with all of this. I've gone so far as to call the governers office to see what they can do...I'm sure nothing. sigh.
In other news Lauren's results of her MRV came back. She has many more blood clots than just her SVC. She has more than 5. SHe will be on the Lovenox long term. On a positive note she can hold her head up and is very "with it". She superises me every day. at this point the only way she is going back to the hospital is if she needed to because she got sick. I would never forgive myself if we readmitted for Medicaid and she took big steps back...she's come a LONG way at home...I just want to keep her here!
On the Alex front he's started getting HIVES. they were bad tonight. He went to the doctor today and was put on Benedryl every 4 hours and changed abx. Poor guy still has a bad cold and now hives to match. He is becoming a MASTER at crawling. Nick said he got halfway up our big staircare today...I see it's FINALLY time for some baby gates!

Colds and a new tooth!

I LOVE this pic...you can really see LAUREN and not the equipment!




This week has been eventful. As it turns out I have actually gone in and asked for a pay DECREASE. And a BIG one. My manager just looked blankly at me and said "well this is a first". I cannot cut down my hours anymore or I would not be able to hold benefits. It looks like we will not be getting a waiver in time before our Medicaid runs out Dec 31st. The only option:make less money. I suppose we could go with he option of just using the 100 shifts/ year our insurance gives. That's 2 shifts/week. I would not even be able to work let alone sleep with 2 shifts/week. It's not fair. Most importantly it would not be fair to Lauren or Alex. I cannot transport Lauren by myself. It is unsafe. I cannot be so tapped out by staying up most nights I would have nothing left to give. Nick has already told me if I wanted more help I should pay for it myself. He would "see what he could do to help" read:I'll help if it's convenient for me but because you have full custody you're on your own. The good news is I finally get to put my "I can live on almost nothing" skills to work. I'm sure we'll be just fine.
Alex is finally getting a top tooth! AND he got another ear infection with it! So this has been a fun week :/ Every day his crawling gets faster and he has finally mastered getting up the 2 steps from the family room into the kitchen. I was hoping that would take a bit longer! Of course Alex gave Lauren his cold and they are both on antibiotics. Lauren also had vent clinic this week. She did great! They dropped her breath rate from 26 to 22 so that she would breathe more on her own. I actually got to talk to the doctor on the phone because I work when there is "vent clinic". She actually said If Lauren stays healthy and continues on this path she could see starting trach trials in Jan or Feb!?!?! What?!? A trach trial is when she's off the vent usually for about 15 mins twice a day to see how she does. They would then SLOWLY move up the amount of time. Lauren being off the vent would make both out lives MUCH easier. We would only have to carry around oxygen tank (like we did for Alex). I cannot wait!
In other good news Alex has GAINED over a pound in the past 3 weeks! He is now 18 pounds 4 ounces! Lauren has LOST some weight and now weighs 24 pounds even. She is growing in length so her weigh is more appropriate. She is now in the 95% for weight and 65% for length. Last time she was WAY off the weight chart. Now if only she could give Alex 2 pounds things would be perfect! This video is when Cody goes CRAZY over this duck and it cracks up Alex...So I turn around and Alex is playing with the duck and LAUGHING at Cody!

Halloween 2010

The baby section in most stores is littered with "baby's first" paraphernalia. Is this the twins first Halloween? Does the Halloween in the hospital weighing under 3 pounds and intubated count? They were not allowed to wear clothes a year ago let alone a costume. I actually bought their costumes last year AFTER Halloween at a killer discount of course. I plan to get 2 years out of them. They were pumpkins! Very gender neutral costumes of course.
I took Alex to the "trunk or treat" my church was having and Nick stayed home with Lauren. Lauren is not at the point where she would get anything out of going. Besides, it would stress me out to keep watching to make sure she doesn't turn blue. Alex had never seen so many people in one place. He was very overstimulated. He just sat in his stroller, sucker in each hand, staring streight ahead. Did he enjoy it? I have no idea. I enjoyed people thinking that he was just like any other baby. He was born full term and didn't have to fight for his life. I liked people thinking he might actually put a sucker in his own mouth when in reality he just waves them around until there is enough dog hair stuck to them I throw it away. It felt good. It felt normal. Lauren, on the other hand, will put ANYTHING into her mouth. She LOVES the sucker. She gets lots of blue drool all over her face. I always need to remember to tell the nurses she just had a blue sucker and THAT'S why her lips are blue! She's has come along way. She has progressed more in the last 3 months being home than the rest of her life. She's gotten much better at head control. It's not perfect. But she's trying. She uses her right hand great. She LOVES her paci. Her left hand is another story. She does use it but it's not as purposeful. We know why. It's her stroke. It's affecting her left side. I'm waiting for a CP diagnosis. I know she'll get one. Of course I'm terrible with my left hand as well. The most important area of her progression is in her personality and her temper. When she first came home she would get mad and turn blue about once an hour. We CONSTANTLY had to turn up her oxygen. I can't remember a time when I last turned up her oxygen. She is also VERY smiley. I LOVE it. SHe has started doing this kissy thing where she will "blow kisses" at you. One of our night nurses has been working with her on this and she's finally got it! She now does this ALL the time because it is on of the few sounds a trached baby can make.