Wednesday, December 15, 2010

Life with a Ukrainian princess

Many people have asked how we are doing since getting Arina home. I've had a few people say, "oh you must be so busy" or "how do you do it with two little ones"?
You know, it hasn't been much different. They are both so good natured, that neither requires constant attention, besides Jax medical stuff. Arina still takes two naps a day, she has been on a strict schedule her whole life, so she sleeps at the same time, every day.
We wake up, get the boys to school, get Jax all disconnected from tubes and brought out into the living room, and he just chills on the floor while I feed Arina her breakfast. I bath them every other day, switching between them. Arina takes her first nap at 10:00, so I get Jax 10:00 feed going, and get his meds and get him dressed. She also goes to bed much earlier than him, so I do Jax night routine with her out of the way.
The only thing that is still a struggle is appointments. But that's mostly my fault. I still haven't found a double stroller that has everything I need. I know I'm being picky, but it needs to steer easy, and fit all of Jaxson's crap! I've decided that a double jogger will be the easiest to steer, but I don't want to spend 5 or 6 hundred dollars on a stroller. It won't be my main stroller, so I can't justify spending that much. I've narrowed it down to a couple, but since I have to order them online, I'm nervous about not liking it once it comes!
The boys are having a blast. The love having a sister, and Carter is loving being a big brother. Although he was a big brother to Jax, he never got to feed him, and do the things he can do with Arina.
Arina had her sleep study last week, and failed it miserably! She has respiratory related apnea spells around 50 times an hour, and frequently drops her sats. Today we have our follow-up with pulmo, where we will be starting oxygen at night, and getting her adenoids, and possibly tonsils removed. Other than that, she is great. She still refluxes and seems to aspirate, but she has yet to have one problem with pneumonia, so we are staying the course. She loves food, and will eat any baby food you give her! She starts early intervention next week, and I know she'll thrive with them. She has already figured out how to move around, although its not a hands and knees crawl. Who cares! She's moving!
Jax is staying stable. He hasn't been in the hospital for more than overnight since August. I'm knocking on wood while typing that we haven't had any respiratory viruses around here lately!
He had his cardiology appointment yesterday, where we got good and very bad news. The good news is the puffiness in his face is fat, not fluid, so its not his SVC. I have no idea why he's gaining weight in his upper body and not his lower body, maybe it was the ketogenic diet. We'll see what happens now that he's on normal formula. The very bad news is his chest x-ray is horrendous! There is mostly collapse everywhere in his lungs. And this is on the vent and on his new PH drugs. And this is a healthy chest x-ray. I'm very concerned that if he gets a respiratory virus, he is in big trouble! If this is what his lungs look like healthy, I can't imagine what it looks like sick. I'm extremely worried about those lungs. Why are they getting worse and not better? His pressures are also still higher than they should be, although I didn't get an accurate number from his cardio. Don't even get me started with that! He gave me like 4 different numbers, beating around the bush! When we go to pulmo today I'll have her give me the exact number, and I'm guessing we'll be playing with his vent settings, to hopefully improve things!

So that's that, I gladly answer any questions adoption related. Reeces Rainbow seems to be the talk right now, so if your considering adopting, email me and you can ask me whatever you want!
I'll leave you with some videos of my beautiful, smiley babies. Jax is being a stinker with his smiles lately, so this video doesn't do justice for the smiles he can really give, but its still cute!!



19 comments:

Kristin said...

Wow - Jax looks soooo good. Hard to believe his lungs are deteriorating while he's looking happier and smilier. He must be lovin' all the little sister floor time!

Becca said...

Omg, that laugh...LOVE IT!!!!!! What a couple of sweet angels you have there, Lacey. :-)

The VW's said...

Glad to hear that things are going so well with 2 babes in the house! Those videos are priceless! Those smiles and giggles make my day! Enjoy those precious little ones! Hugs!!!

Scrappy quilter said...

Beautiful babies. I agree with Kristin, he must be loving all that little sister floor time. She is so stinking cute!!

Angie said...

Check out the Citi Mini Double strollers from Baby Jogger. They fold compactly and steer really easily. I love watching your family grow! God Bless!

ch said...

I have a sinking feeling you're going to increase our household population...

Rochelle said...

LOVE, love, love her giggles!

Laura Gilmour said...

Jax looks like he's making the facial expressions and body language for laughing in the first video even if he cannot make the sounds with the trach. Arina is adorable too.

Shelly Turpin said...

oh - what a sweet video of Jax - love it!! And Arina - your laugh is killing me. You are so cute! I love the ultra girly girl laying on the cars blanket! :)

Alison said...

Such cute videos!! I have a great double stroller I am not using - if I was closer I'd give it to you!!!

Cammie Heflin said...

Jax does look amazing!

Lauraa said...

Munchkin alert :)
I'm so glad that Arina fits in so nicely! She probably can't believe her luck getting such a beautiful family like yours :D
You guys do a fantastic job with everything.
I hope you have a very merry Christmas.
Lots of love,
Laura

suelmayer said...

Lacey, you continue to amaze me! When I think my schedule with Sam's hip surgery is crazy I just come back to your blog and get inspired. Jax looks wonderful and Arina has a fabulous giggle. It funny, how you were kissing Jax is exactly what I do to Sam to get him to laugh.

Junior said...

Both of them are just so precious, Jax smile and Arina's giggly, love it.

April said...

Oh they are so beautiful! Hope you get some answers at the Pulmo.

Anonymous said...

Oh my goodness! Thanks for those videos - made my day!!

Anonymous said...

Your blog just makes me happy, what a great mom you are.

Angi said...

check out the Schwinn double joggers w/ the front pivot wheel that can lock...I think $200, you can a few things underneath but nothing much on the handle you push with (unless you want them dong headstands!!)

Melissa M said...

I'm so glad you all are settling into a routine. Arina and Jax both look great!

Bummer about the sleep study! I was hoping that was one thing you wouldn't have to worry about, but I'm glad she's managing to avoid pneumonia.

If I ever get closer to convincing hubby to adopt I'm sure I'll have lots of questions for you. :)