6Q26

Ben and I took Natalie home today.  She's been doing great, still eating well and acting fine.  She's not acting like she's too irritated and she's just taking tylenol.

The geneticist made time to meet with us today before Natalie was discharged.  They found a deletion on one of her chromosomes.  It's a deletion of the 6Q26 section.  It doesn't change much of what we're going to do with her, but we will be watching her for an increased chance of cancer because there's a gene that restricts cell reproduction in there, and she doesn't have that.  Or, I should say she does have that, but only on half of her DNA.  Ben googled around today and found this brochure from England which describes some things associated with this deletion, and a lot of things match Natalie's symptoms.  It touches on the enlarged ventricles, the underdeveloped corpus callosum and the tethered spinal cord and sacral dimple.  And it sounds like usually there's a pretty fair prognosis with this that ranges pretty similarly with most kids.  Some will walk early, some late, some will have difficulty learning, some won't.  That sounds like most kids... some are ahead and some are behind.

Ben and I each submitted blood today so they can look at our #6 chromosomes and see if either of us have this deletion and it just didn't do anything or if this is unique to Natalie.  Like I said, it doesn't really change our plan for her healthcare right now, it just gives us more information on other issues she may have and helps comfort us in knowing that there's nothing that Ben or I did to cause her issues.  

Shunt Placement Surgery

The surgery went great!

Ben and I had Natalie at the hospital at 5:30 this morning.  We had a lot of waiting around to do while things got lined up, but they took her at 7:30 back to be sedated.  Ben and I kept ourselves occupied in the waiting room and they came and got us right around 9 and said everything went smoothly.  We got to go to the Pediatric Intensive Care Unit right away to see her.  She was still a little bit sedated, but seemed comfortable.  

She has about an inch and a half long C shaped scar about 2 inches behind her ear, and a half inch or so little scar on her belly right below her rib cage.  The shunt is so small, there's barely a bump on her head.  She looks really great.  They shaved almost the whole right side of her head.  She still looks beautiful, though.  The nurses all like to come coo over her.

The neurosurgeon came back this afternoon and looked over her, and he said everything looks great.  I just talked to the nurse at the PICU and she said Natalie ate well tonight and is sleeping soundly.

Lauren got to come to the hospital to visit with Natalie and she was charming everyone.  She had a long conversation with the doctor about dragon tales and dress up and her new shoes.  Lissa crocheted an adorable pink hat for Natalie today.  I think we may ask her to make a lot of little hats for Natalie until her hair grows in.

So.... she's supposed to be released tomorrow morning.  She's scheduled to have a CT scan and an x-ray at 5 am tomorrow and then the neurosurgeon will have to sign off to release her.  

I'm sitting here tonight feeling really relieved that this surgery is over.  And I'm very happily surprised with how little her shunt stands out.  This is one big step that is over and done with and in a few months we'll bring her back for the surgery on her tethered spinal cord and to remove the two tumors.  But we'll handle that when we get to it.  Right now I'm just looking forward to bringing her home and going about our day to day lives for a while.

The Big Day

Tomorrow morning is Natalie's shunt placement surgery.  Ben and I have to have her at the hospital at 5:30 am.  She should be in surgery by 7 and the neurosurgeon said it should take about an hour.  I expect everything should go pretty well, there will be three anesthesiologists in the room, and there's going to be a general pediatric surgeon assisting the neurosurgeon tomorrow.  

Ben picked Lissa up from the airport today and she and Natalie and I went shopping at Kohl's while Ben and Lauren went to the park.  We went to Red Robin for dinner tonight and now we're just spending some time relaxing before heading to bed.  

Natalie will spend at least 24 hours in the PICU after her surgery, and as long as she does ok, she should be released on Friday.  Lissa flies back to Albuquerque on Saturday.  I'm hoping we'll be able to go back home on Saturday or Sunday.  Natalie has an appointment for the special baby clinic next Thursday.  They'll have all the different therapists meet with Natalie to do some assessment of her and help us make sure we're doing everything we can to keep her on track.

PICTURES!

Lauren all dressed for dance class.



Natalie wearing the Ponte onesie that Jayna sent.



Lauren accessorizing with Bunny sunglasses and four purses.




But painting without pants...





And talking on the phone with Grandma Lissa. Doesn't she look relaxed?

Heading back to San Antonio

We had a nice 4 day weekend. On Saturday we hosted a little BBQ at our house. Ben smoked a brisket and I made hashbrown casserole. We had our friends Mark and Megan, Katrina and her girls, Mandy and her son and Brandi over. Mandy brought a really delicious salad and Brandi brought sugar cookies. The brisket turned out great, Ben always does such a good job with that.

We've been using the Wii a lot lately. I get on and do Wii Fit every other day or so, and Ben and I have been having Dr. Mario battles most nights. He's been getting better, but I'm still the champ. Oh! And we upgraded to HD TV last week. DirecTV came and installed the new HD DVR receiver on Monday and we also wired up the playroom with satellite for Lauren.

Natalie's MRI is coming up on Thursday. We just got a call today that she has to go in on Wednesday at 1:30 so we can fill out some paperwork for the anesthesiologist. We were going to drive down tomorrow night, but I guess we'll drive down tomorrow morning instead. Friday morning we'll head back home unless she gets done early enough on Thursday.

I have some packing to do for San Antonio so I better get started.

Inspiration

I have to tell you about The Pioneer Woman. I originally was pointed to her site for her recipes... specifically her Bacon Wrapped Jalapeno Thingies and her Best Chocolate Sheet Cake Ever. But recently I started browsing around her site more and she has an entire section about photography and photoshop.

I want to be The Pioneer Woman when I grow up.

She has free downloadable Photoshop Actions on her site, and I downloaded them and started playing around with some pictures. Wow. Seriously. I'm having so much fun.

Take this picture of me and Natalie:

Turning a color photograph to B&W is nothing new, of course, but aside from cropping it, I only had to click one button to end up with this. It adjusted levels, turned to B&W and softened things to make a lovely looking picture. I also did this picture of the girls:

Just to show you the difference:

I'm just having so much fun with it! Plus, I didn't even know Actions existed before this. (I know, I know, but you learn something new every day, right?) Now, I can make my own actions and that will be just awesome! I'm so excited.

But- even if you aren't into the photo stuff, there's a lot of good recipes on there, and a lot of other fun stuff to look around at.

Happy New Year!

It is so quiet when both girls are napping. Quiet and rare. But they are right now. Yay!



We had an uneventful New Year's Eve. I think we were all in bed by 10. That's ok with me, though. I forgot how little sleep you get with a newborn in the house. Last night she did pretty well, she slept most of the night and woke up to eat every two hours or so. That's better than the two nights before when she woke up at three and just wanted to be awake.



Today I'm making Taco Soup from the crockpot365 website. And tomorrow I think I'm going to attempt tamales. I got all the stuff from it. I got two shortcut tips, though: 1. use parchment paper instead of corn husks. (Ben doesn't like this idea, though, so maybe I'll do half and half.) and 2. Use the crock pot. Again, this is from the crockpot365 website, but it just makes sense, and I don't have a pot and steamer that's large enough anyway to do it the other way.




Ben took this picture of me and the girls. Natalie's hat is falling off and looks kind of weird, but it's a picture of the three of us, anyway. I'm always surprised now when I pick up Lauren and she feels so heavy. There's a big difference between 6 and 25 pounds.