Really?

Kate and Lily are playing hide and seek, or as Kate likes to call it "Hide and the sink."

Six months old

My attempt to get a solo shot at Kian. They can't stay away from him.

Mr. Handsome, all dudded up for church.

Lily loooovvves to hold her little brother. She is getting pretty good at it, too. See Kian staring at his left hand? He recently discovered he has a right one, too.


Remember Kate at the computer? Well, one day she got so tired doing it, she just gave up and went to sleep. Out cold. In her dress-up dress.

We finally blessed Kian at church. We had a lot of family there and were grateful to have the support. We missed those who couldn't make it and hope to see you all soon.

Kian had his first appointment with neonatal follow-up. Everything went as well as expected.("He's a bit delayed on the right side.") Current weight 11-3.

Other randomness-- At Thanksgiving we asked the girls what they were thankful for. Lily said, "Two things. My family and modesty." Kate said, "Cereal."
Lily's newest vocabulary word is "discombobulated." As in, "Mom, you were discombobulated," after calling her Kate.

Family Pictures

Here we are together in one picture for the very first time, I think. Yea!




Kate took this picture of me taking a picture of her taking pictures. I think she's got her Dad's creativity. Just look at that composition.

Two out of three happy. Not bad.


Sooooo handsome, don't you think? The bump on the left side of his head is the shunt. Current weight as of today : 10-12. Which is like 20th percentile. Which they say is pretty near impossible for a preemie with just breastfeeding. HA!

Cute girls

We tried so hard to get a good portrait of Kate. And this is about the best we could do. Its hard to convince her to do anything she doesn't want to do. Like wear cute clothes and stand still. She spends a lot of time on the computer, though.

Here is Lily, though. She did a great job posing for daddy in the leaves.

Happy Kian

Kian likes being home. He smiles and makes happy sounds. This makes us happy as well.

Halloween and stuff

Kian was a Jack-o-lantern. For all of about 10 minutes.

Kate was a wingless ladybug, and Lily was a purple dragon.

It rained on our poor little trick-or-treaters, but they had fun.

Kian has eyebrows. Finally.


Cutie face.

This was how I found Kate playing one day. The girl's got style. Or something.

We love our boppy pillow.

One day after a walk. Shoes courtesy of the aunts and cousins.

So Happy at Home

Kian literally started smiling the day we got home from the hospital. He's so happy to be here. And we're so happy to have him here. This was a cape we found in a box of hand-me-downs, and it's perfect for our little super-baby. Photos of actual Halloween costume coming soon.

Smiles for Mommy. (rare)

Smiles for big sis.

Smiles for toys.

How come they will play outside when its 38 degrees and lots of snow, but when its 75 and beautiful they want to watch TV? They begged me to let them play outside in the snow 2 days in a row. By themselves. I don't get it.

Smiles for Daddy. All the time. Ridiculous. In a good way.

See what I mean?

Silly girls. Dancing with blankets on their heads.

Pictures of our time at PCMC

This is the EVD from Kian's end.


The rest of the external drain. It's gravity controlled, so they have to line up the white ribbon to his ear or nose when he changes position and move the thing up or down.

Hanging out in the room.

He clings like a baby monkey.

The setup. Computer, monitor, crib, IV pole with antibiotic pump (6 times a day) and EVD device.

Cuddle time.

Family time ("Walk quietly, don't cry, no screaming, sit still, don't touch that, sit down, don't spill. Hey, want to watch PBSKids.org?")


We went to the zoo the day Kian was supposed to go home (but surgery was postponed). It made us all feel a little better. Except perhaps Kian.

And a picnic at This Is The Place.

Going home day!

We're Home!!

We made it home today. Kian did so much better after this surgery than any of the previous ones. His color was better, his pain was better, his breathing was better. We are so relieved to be done with this, and hope we don't have any more long-term hospitalizations for a long, long, long time. His shunt (or part of it?) will have to be replaced sooner rather than later, because they couldn't fit the full sized one in this time, so we know we have that to look forward to, but hopefully other than that we will just stay home.

I'm going to use this post as one big thank you note. To everyone who helped us in the past 4 months, thank you. You know who you are, even if we don't. If you watched our kids, brought us dinner, mowed our lawn, sent us a gift card for gas, brought by baby gifts, prayed or fasted for us, thank you. And if you did anything else. Thank you thank you thank you. I can't imagine having to go through something like this without the support of family, friends, neighbors, and ward members. We are so blessed to have you in our lives. Seriously. Thank you.

Pictures to come soon, I promise.

Success!!

Kian's EVD was removed today and a new shunt placed. Yea! He's not feeling too well yet, but we should be home tomorrow.

Just Kidding

So Kian's surgery has been postponed until Monday. His ANC, which is a white blood cell value, is too low, so he wouldn't be fully armed to combat infection. So they are stopping his antibiotic and giving him Neupogen to help increase his ANC, and hopefully he'll be ready to go Monday, and home Tuesday.

Home Saturday!

We just got word that the surgery will be on Friday to put in the new shunt, so if everything goes according to plan we will come home on Saturday! Yea!!!

update

So there is a different infectious disease doc on now and he says we count the negative gram stains, not just the cultures. So we are really on day 2 of 14. Sigh.

Day 4 of 14

So far all the cultures are negative (except the first 2). The positive results from the gram stains must have been dead bacteria because they are not growing. So today is day 4 of 14. After day 14 Kian will get his new shunt placed. Kate and Lily are at my brother's house in Logan and having a great time. It's nice to be able to focus our energy on Kian.

pictures

Kian's hospital entertainment.

The EVD

Sunday's going to church outfit, before the surgery.

Still infected

We are still here, hanging out. We are having a hard time clearing the infection. Kian is doing well and feeling pretty good, but the tests keep coming back positive. If todays culture turns up positive, he will have to have his EVD replaced. Yesterday we were a bit more hopeful because the culture was negative, but today's preliminary test was positive, so we sit and wait for the culture, planning for the worst and hoping for the best.

Surgery again

On Monday Kian was fussy and had a slight fever and swelling around his shunt tubing, so we spent 7 hours in the ER at Primary's. They did some tests and sent us home. Tuesday morning the neurosurgeons called and said that something was growing in his CSF and we had to come in for surgery. So Tuesday around 1pm he had surgery to remove his shunt and they put in an external ventricular drain (EVD). It drains his CSF to an external collection system. Basically he has a tube sticking out of his head. He will have that until the infection in his CSF clears up and they can put in another shunt. So it looks like we will be here for a couple of weeks. So that's the bad news. The good news is that it was caught pretty early, and he is doing pretty well. And we already know all the doctors. And we have a private room.

He's 3 weeks old-- or would be

Kian has been doing really well. His last weight was 7-3. He is eating and growing and doing what a baby should. He's a good boy. And cute to boot.


Our cute girls ready for church last week. I french braided Lily's hair. That is a huge accomplishment for me. And her for standing still for so long.


I told Chris it was time for some portraits of Kian. And this is what we got. Not bad for a spur of the moment "hey let's take picture's" endeavor. You can see Kian's overriding sutures on the bottom picture. His shunt is on the other side.