The Pitty Pitty Patter

Cute

2012-01-28T20:23:00.001-05:00

Flying

2012-01-26T21:44:00.001-05:00

Camera

2012-01-16T21:56:00.001-05:00

We got Stian a camera for Christmas. It takes both pictures and movies. The quality is pretty bad, though will be greatly improved when Stian learns to hold still while taking pictures! Below are some of the pictures he took over the holidays. I'll do some movies another time. They are pretty hysterical though.

Paper Airplanes

2012-01-16T21:07:00.001-05:00

Stian has been very into paper airplanes for about a month now. We bought him a page a day calendar that has a different airplane to fold every day. Though we have found the good ol' standard paper airplanes work the best so far. They have provided hours of entertainment and he's a learning a thing or two about airplanes (ailerons) and physics (lift).

Snow!

2012-01-14T20:52:00.002-05:00

Winter has finally come to Northern Indiana!

A Minnesota Christmas - Part Two

2012-01-07T22:04:00.001-05:00

A Minnesota Christmas - Part One

2012-01-07T21:53:00.001-05:00

Wisconsin Christmas - Part 4

2012-01-07T21:34:00.000-05:00

A few more pictures from our time at my parents' over Christmas break.

Wisconsin Christmas - Part 3

2012-01-05T21:55:00.000-05:00

Santa's been here!

Marble racers!

Stomp rockets!

Wisconsin Christmas - Part 2

2012-01-03T21:58:00.001-05:00

Christmas Eve:

Wisconsin Christmas - Part One

2012-01-03T21:46:00.002-05:00

We didn't have much snow at all during our trip north for Christmas. But it did snow a little on the first day, enough to make sledding possible.

For some reason rolling out of the sled while going down the hill was much fun.

Glasses!

2011-12-19T20:21:00.002-05:00

A couple of weeks ago we took Silje to Kris's ophthalmologist to have her eyes checked out. Sure enough, she needed glasses. She's quite near-sighted already, -5.5 in one eye and -6 in the other. She will just get more near-sighted as she gets older. So we needed to get her into glasses.

When we first went to look at glasses I wanted to cry. All the ones small enough for her were so awful. They were just big and really round (why are baby glasses all super round?! They have super round faces! It's not a flattering look!) and in pale pink. They looked horrible on her. I wanted her to have cute glasses! So then we looked online and couldn't find anything better. I was bummed.

Last week we were down in Indy for a cardiology appointment (she's doing fine, by the way) and so I had looked up a pediatric ophthalmologist in Indy and it turned out they had an in-house optics store. So we stopped by there. They had better options. And she said she could take regular plastic temples and bend them to go around the ear to keep them on. The place here in town hadn't suggested that option. They just told us to go with cable temples, and that was much more limiting! So then we found her some cute frames.

Today we were down in Indy again for a neurology appointment (doing well there too) and luckily her glasses were ready to be picked up. She seems to like them. It's been fun watching her with them. She's just looking at everything. She hasn't messed with them much either. I suppose she likes having them on and finally being able to see!

I took this picture for Karin so she could see that there are sparkles on her glasses. I knew she'd be happy that Silje finally has some bling!

Standing and Silly Pictures

2011-12-17T20:56:00.004-05:00

Silje really likes to stand, and she's getting pretty good at it. Of course she needs help, but she's very strong - she just needs to help for balance.

And then we tried to get a decent picture of the two of them together tonight. We didn't. But the series is kind of funny.

Fourth Birthday - Take Three

2011-12-12T07:57:00.007-05:00

And then when we got back Stian had his birthday party with his friends. We had the party at the gymnastics center. The kids had about an hour of open gym, then went upstairs for snacks. I don't think you should post pictures of other people's children on the internet without their permission, so I can't post too many pictures from the party. Or at least not too many good ones. I've found some here where the kid's face is blocked, so I'm putting up some of those. But trust me when I say there was a good turn out, and the kids had lots of fun!

This is Stian and his best friend Julian:

And a few more

2011-12-11T21:47:00.002-05:00

A few more pictures from Thanksgiving break at my parents' house.

We took another family shot.

And got some cute ones of the three kids together.

Two super heroes watching "Shawn the Sheep."

Fourth Birthday - Take Two

2011-12-11T21:08:00.007-05:00

We celebrated Stian's fourth birthday at my parents' house too. My mom made Stian an awesome Yo Gabba Gabba superhero cake and then she made super hero capes for Stian, Nate and Silje and also for Stian's animals Claire, Brent and High Lighter and one for Nate's Wall E. It was a huge hit.

Two More

2011-12-11T20:45:00.002-05:00

And then just two more pictures from the Thanksgiving break in Minneapolis that don't really go with any of the others, but are cute and worth posting.

Thanksgiving

2011-12-11T20:30:00.002-05:00

We had Thanksgiving dinner at Karin and Brad's house.

The Farm

2011-12-11T19:39:00.007-05:00

After the burial we went over to the farm. Both to visit the place and to spread some of Kris's dad's ashes.

Burial

2011-12-11T19:23:00.005-05:00

On the day before Thanksgiving we went down to Southwestern Minnesota to have the burial for Kris's dad. The church and graveyard are near the farm where he grew up.

Kris's cousins: Peter, Nathan and Kristafer

Fourth Birthday - Take One

2011-12-11T15:37:00.005-05:00

Stian got to celebrate turning 4 three times! Once with Kris's family, once with my family, and once with his friends.

We celebrated first with Kris' family. We went out to dinner and then to Brad's school to open presents. We knew he had some presents in there that it would be nice to play without side. But it was cold and dark, so we thought the cafeteria at Brad's school would be a good alternative, and it was perfect!

Santa

2011-12-11T09:17:00.004-05:00

(things have been crazy around here and I just haven't had time to update this - but I'll work on it!)

The same day we went to the train museum we stumbled upon Santa at the mall. We had some time to kill between going out for breakfast and when the train museum opened, so we decided to go over to Rosedale. We walked in the door and Stian saw an escalator and wanted to go down it. (I hadn't really realized it, but there are no escalators in the Lafayette area, so this was a novelty.) We got to the bottom and there was Santa! And there was no one in line! So we brought everyone else down and had their picture taken. This was a great mall santa. He spent quite some time chatting with the kids. It was cute.

The kids aren't really dressed the way that I would have dressed them had I known they were going to get their (very expensive!) picture taken with Santa. But it was still neat, and I'm glad it happened the way that it did.

St Paul Train Museum

2011-11-21T19:41:00.004-05:00

At the park

2011-11-16T16:48:00.002-05:00

Some pictures from the park by Kris's parents' house.

6 month stats

2011-11-16T16:32:00.003-05:00

Silje has her 6 month check up with her pediatrician today. She seems to be doing just fine. Her 6 month stats are as follows:

17 lbs 2 oz - 64th percentile
26 3/4 inches - 75th percentile
45 centimeter head circumference - 95th percentile

Stian was 3/4 of an inch longer and 6 lbs heavier at 6 months!

First Solids

2011-11-12T14:44:00.005-05:00

Silje turned 6 months old yesterday so it's time to start solids. We let Grandma do the honors. Silje seemed to catch on quickly and like it. She ended up with more on her bib than in her tummy, but she didn't do too badly for her first time.

Goodbye Grandpa

2011-11-03T16:32:00.005-04:00

Grandpa Skjervold died last night. He will be greatly missed.

Rolling

2011-11-02T09:04:00.002-04:00

Silje rolled over for the first time yesterday! In the afternoon she rolled from her back onto her tummy, and then in the evening she rolled from tummy to her back! Here's a picture I snapped of her right after she rolled from her tummy to her back. She looked pretty pleased with herself!

She's not too behind on these milestones, which is good because she got a late a start. And actually, she's about where Stian was doing these things too. Though he was quite late. Who knows when she would have reached them without all of her issues.

Happy Halloween!

2011-10-31T21:34:00.007-04:00

Silje was a pumpkin. You can't really see her costume in these pictures as much of it is covered by the carrier. Here's a picture I took with my phone last Friday on costume day at school, so you can see the whole costume.

And for the record, Stian was a dragon. He was getting kind of grumpy with people calling him a dinosaur all evening.

And if you are wondering what kind of weird earrings I'm wearing - they're spiders.

Moving up

2011-10-26T16:55:00.002-04:00

For the last couple of months if you asked Stian what he wanted to be when he grew up he would answer with "goose poop" and then laugh. Today on the ride into school he told me he wanted to be a Navy's Blue Angels pilot. I thought that was quite the jump up from goose poop.

Sleeping

2011-10-26T16:49:00.002-04:00

Silje's sleep has gotten really bad lately. She doesn't want to go to bed until late, and then wakes up at around 3:00 in the morning and decides she is up for the day. I finally get her to go back to sleep after a few hours, just before my alarm goes off at 5:45. And she's never been much of a napper. The only way I can get her to nap is to lie down with her. I know she would love to co-sleep all the time. But I just can't sleep with her in the bed. I need all of my pillows and my down comforter to get comfortable, and I worry she'll suffocate in all of that. A friend suggested I sidecar her crib to the bed. I'd never heard of this before, but after some research decided this might just work for us. Basically you attach the crib to the side of the bed with one side off of the crib. You obviously have to be careful to make sure to attach it very securely and that there is no gap between the two for the baby to fall between. But we figured that out.

We set this up this weekend and it seems to be helping! Her sleep could still use some improvement, but at least when she wakes up in the middle of the night and wants to party I've been able to convince her to go back to sleep a little more quickly.

Here she is modeling the sidecar for the camera.

Sitting?

2011-10-26T16:37:00.003-04:00

Silje and I have been practicing sitting (her more than me, I've had sitting mastered for awhile) to build up those core muscles.

Here she was yesterday. She thought it was pretty darn hilarious.

I thought she was still a long way from sitting on her own yesterday. But she felt a little more stable today, so I let go. Voila! Okay, so she can only sit unassisted for a few seconds, and only if you place her just right so she's balancing her weight just so. But still, it's a start!

I couldn't pick which photo to use, so I'm putting in all three. I thought she looked so cute and so pleased with herself.

Handy that I just happened to have the iphone with me. Too bad she was pretty much done sitting by the time I went and got the good camera. I did get one more picture with the good camera though - but the setting wasn't quite right. Ah well. Thank goodness for the iphone!

Fall Break - Wisconsin

2011-10-19T17:04:00.008-04:00

Then we headed up to my parents' house. We aren't usually up that way this time of year. It was fun to be there in the fall for the first time in a long time.

We were there for a few days before Wayne and Nate came.

Stian played "car show" with Grandma - one of their favorite activities.

This is Claire the cat - Stian's most favorite stuffed animal and "best friend" - he adores her.

Silje plays "Sooooo big!" with Grandpa.

Wayne and Nate arrive!

Apple picking! Grandma and Grandpa left a bunch of the lower down apples on the trees so the boys could pick apples. They were very yummy! Stian loves apples. He says they are his favorite food. Although he has decided he prefers them peeled (or "skinned" as he calls it), which is a bit of a pain. He was helping me make Norwegian apple cake recently and ate the left over apples that I had peeled to put in the cake, and he decided they were better than with the skin on.

These masks featured prominently this weekend. They have long been a favorite of Nate's but now Stian thinks they are pretty cool too.

Stian wanted to go fishing so Grandpa helped him. He still didn't catch a fish though. Perhaps ice fishing this winter? (prepare yourself Grandpa!)

We tried to get a family picture with my family too. We wandered around trying to find just the right spot.

This is probably the best group shot. It's okay, but both boys are making goofy faces. Of course, they are usually making goofy faces, so I guess it looks like them. Perhaps we'll try again at Thanksgiving.

We did get a nice picture of Wayne and Nate though.

And a nice picture of the four of us.

Fall Break - Minnesota

2011-10-19T14:33:00.004-04:00

After delaying our trip for a day, we headed north for fall break on Sunday.

We made the obligatory stop at the big orange moose.

We did some hanging out.

Silje got her first real haircut.

And we got some family photos.

Cardiac Cath

2011-10-18T20:58:00.006-04:00

Silje's cardiac cath went fine. It was not as successful as they had hoped, but they did open up the aorta some. Hopefully it will prove to be enough. They will keep an eye on it. It could get larger on its own, stay the same size, or get smaller again. There is just no way of knowing right now. They can do a cardiac cath again or they could do surgery. Let's hope she doesn't have to have either done.

The procedure was in the morning. Silje and I went down to Indy and Kris took Stian to school, then he came down to meet us. I was really worried about her having to fast, but she did fine with it, even though the procedure started about two hours later than scheduled. It was hard to hand her over to the nurse when it was time for her to go. The procedure took about two hours. Kris and I waited in a waiting room. When it was done the doctor took us back to see video of the procedure. I believe it was an x-ray image, though I'm not sure. We could see the catheter up in her heart and the balloon expanding. I have seen an awful lot of my daughter's insides.

When she started to wake up they took us to her. She was pretty upset and very drugged up. They let me crawl up onto the bed with her and hold her. We had to be very careful to hold her leg still for about 5 hours. So I held her and nursed her and Kris held her leg still. She was pretty upset. When it was time to go up to her room I was able to ride up on the bed with her holding her. They got me situated in the room on the sofa so I could hold her for the 5 hours she needed to be held still. Kris had to leave at this point to go get Stian at daycare. So it was just Silje and me for the rest of the afternoon and into the next morning. This was my view for the first couple of hours.

When she woke up she was much happier, and not so drugged up. After the 5 hours had passed she could move around more. So I continued to hold her, but I didn't have to hold her leg still. Then she looked like this. (her arm is out of the sleeve because she had an IV in her left hand)

We stayed in the hospital overnight. She slept fine. I slept intermittently, but better than I thought I would on a hospital sofa. They let us go the next morning and we came home.

The day was pretty uneventful. We hung out and I packed as we were planning to head to Minnesota and Wisconsin the next day.

That night at 2:00 am though Silje woke up and seemed to be having a very hard time breathing. She freaked me out. She appeared to be gasping for air. So I woke up Kris and then I took her to the emergency room while Kris stayed home with Stian. We don't really know what the issue was, but it appears that she was just coming down with a cold that day, and probably having been intibated for the procedure irritated her throat exacerbating the problem. They did a breathing treatment on her, gave her some steroids and sent us home. Before we left they discouraged us from heading to Minnesota that day. We got home around 6:00 am and went back to sleep.

We hung out at home for another day. Later that afternoon Stian came down with a very high fever, so it was probably for the best that we hadn't gone north that day. We did go north the following day though, and Stian continued to have a high fever for a few days. We're not really sure what it was. Possibly the same thing Silje had, or possible something else. Once the fever broke he did get a bit of a rash, so it might have been rosiola.

Beautiful Evening

2011-10-03T20:23:00.002-04:00

Silje's Heart

2011-10-03T15:49:00.002-04:00

Silje had an appointment with her cardiologist about a week and a half ago. The news wasn't particularly good. She had an echo and a couple of the issues the cardiologist had been concerned about before - in particular the pulminary arteries - are no longer an issue. So that was good. But unfortunately the site of the repair she had during her open heart surgery is too narrow because of scar tissue. She is getting decreased blood flow to the lower part of her body and very high blood pressure in the upper part of her body. We were told this could happen, but were hoping that it wouldn't.

So what this means is that Silje will be admitted to the hospital in Indianapolis on Thursday morning of this week and undergo a cardiac catheterization with balloon catheter dilation to essentially rip that scar tissue open. There is some risk involved, but it is, of course, much lower risk than the open heart surgery she has already undergone. We are still nervous. I'm more nervous than Kris, he feels pretty confident all will be fine. If all goes well she will spend one night in the hospital and come home the next day. (I can stay with her in her room over night) She should only need to have this procedure done once; once that scar tissue pops open, it stays open.

So keep her in your thoughts on Thursday morning.

Cupcake hat

2011-10-03T15:37:00.002-04:00

I made this hat for a friend and took a picture to send her before I put the hat in the mail. I thought the pictures of Silje turned out pretty cute (the hat too). I had also mentioned to Kris the other day that I'm not ready for Silje to start getting teeth because I'll miss her big gummy grin and Kris wanted to know if I had a good picture of her big gummy grin. I think the second picture here counts!

School photos

2011-09-27T21:36:00.003-04:00

These were not nearly as funny as I thought they were going to be. I was there the morning they were taking the pictures so I went with them and both kids were being rather uncooperative. I had to bribe Stian with M&Ms to get him to get his picture taken at all. And we tricked him. I was sitting next to him, he thought I was in the picture too. And then normally happy, smiley Silje just stared at the photographer. But they're not as bad or as funny as I expected them to be. I expected matching scowls.

Silje's first masterpiece

2011-09-27T21:26:00.001-04:00

A budding Picasso...

videos

2011-09-22T20:59:00.004-04:00

Someone got new shoes. No, it wasn't Kris. Though I think he might be a tad jealous. This is Stian playing with them at about 6:45 am out on the driveway before school. Oh my goodness does he love these shoes.

Stian got pretty good at frisbee this weekend.

Trying to get Silje's laugh on video. We got a bit of a giggle, but not the full out laugh that she does.

Silje has been doing a good job holding her head up, so we decided it was time to pull out the bouncer this evening. She doesn't know what to do it in yet, but she was interested in watching Stian bounce her in it.

Labor Day

2011-09-16T14:57:00.005-04:00

Kris and Stian went up to Minnesota for Labor Day weekend. Silje and I stayed here. Here are some pictures from their trip. It's hard for me to provide much commentary as I wasn't there.

Here they are swimming at Karin and Brad's:

Celebrating Grandpa's birthday:

Getting ready for the transport van to take Grandpa to the hosptial for chemo:

4 months!

2011-09-16T13:59:00.004-04:00

Silje turned 4 months old on the 11th. She had a pediatrician appointment on Monday. She is doing well. Nothing new there. She has a cardiology appointment next week, hopefully that goes well too.

Here are her stats:
weight 13 lbs 11 oz - 40th percentile
length 25.15" - 75th percentile

Darkness

2011-09-13T10:41:00.001-04:00

Stian got up at 6:15 this morning and had to go outside immediately to ride his bike in the dark. Kris bought him a headlight that flashes for his bike, and it's much fun in the dark. Even if it is 6:00 am! Kris and I were both already up, so not a big deal. And it was actually a nice change. We usually, quite literally, have to drag him from bed while he moans and whines about being so tired. What's he going to be like as a teenager?

Wow!

2011-09-01T21:16:00.004-04:00

What's missing from this picture?

And this one?

That's right!

Go Stian, Go!

Sweet

2011-08-28T22:42:00.002-04:00

We went out for Indian fast-food tonight for dinner (yum!), and on the way home Silje was crying because she was just so exhausted from her long day. I looked back to try and soothe her and Stian was holding her hand. Awwww!

Goin' to the zoo, zoo, zoo...

2011-08-28T21:20:00.006-04:00

Today is my birthday, and I decided I wanted to spend the day at the Indianapolis Zoo. It had been quite awhile since we had been there last, and I thought it would be a fun way to spend the day. The weather was absolutely perfect for a trip to the zoo.

Stian wanted to go see the sharks right away. He is both fascinated by and terrified of sharks lately. We had been talking about the shark exhibit and how you could pet the sharks, and he really wanted to see that. He did like looking at them, but was not at all interested in petting one. Neither was I. Kris wasn't either, but he was a good sport and stuck his hand in the water and pet one. Stian and I were talking before bed tonight about his favorite thing at the zoo today, and he said it was Daddy petting the shark.

They have a new tiger exhibity at the zoo. We kept hearing ads for it on the radio when we were sitting in the NICU all those many hours with Silje. It was pretty neat. When we first went up to it the tigers were just lying around in the grass, not terribly close to the glass. But suddenly one hopped up and came trotting over and came right up to the window. As the ads told us over and over, there is only a pane of glass between you and the tiger. Kris and Stian were right up at the glass. I was standing back aways, and it was interesting to see Stian's reaction. When the tiger came trotting rather quickly right over to him his eyes got huge and he jumped back. I guess those are instincts at work. Incidentally, I kind of think the tiger came over to eat the rather cute, chubby little two year old girl who was standing next to Stian.

Stian has a real knack for finding the most disgusting thing on a menu and getting it. The few times we've taken him out for ice cream he's ordered things that make me shudder - like cotton candy flavored ice cream and bubble gum flavored ice cream. And today he skipped over the normal ice cream treats like ice cream sandwich, or drumsitck, or Klondike bar, and selected this rather nasty looking Sponge Bob popsicle. Kris took a picture for Grandpa Skjervold, he figured he'd appreciate a Sponge Bob popsicle.

It was a very nice day. A good way to spend my birthday.

Hands On Trucks

2011-08-28T16:49:00.004-04:00

The local children's museum had their yearly fundraiser yesterday. It's called "Hands on Trucks" and they have all sorts of trucks and other vehicles for the kids to get up close to. I believe they said yesterday that there were over 30 different vehicles. It was a really neat event, and Stian really liked it. Silje and I were there, but she was obviously not particularly interested in the trucks. And then the kids starting honking the horns on some of them and she really didn't like that. So we Silje and I headed back to the car while Kris and Stian continues on for a little longer. I guess we'll need to get some tiny ear protectors for her. I was pretty impressed with the event though. It's such a good idea, and all of the people there with their vehicles were so nice.

Playing

2011-08-25T21:12:00.003-04:00

The therapists that were here last week suggested that we set Silje in the boppy under an activity gym to help her build up her arm strength reaching for the toys. She really appears to enjoy this, and will often happily sit in there batting at and grabbing at the toys. Kris was sitting with her this evening playing his guitar while she played, and he stopped to take some pictures.

While Kris and Silje were downstairs playing, Stian and I were upstairs playing with his emergency vehicles and putting out a fire at Huggy Bear's house. That was until Stian decided he wanted to go play guitar with Kris. He likes to play the ukelele while Kris plays the guitar. And he was fascinated by the harmonica holder, he had never seen that before and wanted to give that a try too. Stian has been really into musical instruments lately. I think we might need to pick one for him to start learning. He mentioned tonight that he wanted to learn to play the tuba, but I'm thinking he might be a tad small for that!

And then a video to hear him playing along with Kris. The ukelele is horribly out of tune, but it's still cute to hear him.

Summer Evening

2011-08-20T20:43:00.001-04:00

Tummy Time

2011-08-20T20:04:00.003-04:00

Silje was evaluated earlier this week to see if she qualifies for First Steps, which is an early intervention program. If she qualified she would get extra physical and occupational therapy at a pretty cheap price. But after spending about an hour with her, the physical therapist and the occupational therapist thought Silje was developmentally delayed, but not that delayed. So she didn't qualify for the program. I think that's both good and bad news. Good that she is good enough not to qualify, but she is delayed, so it would have been good to get her some therapy. But they gave me some things to work on with her and will be mailed me some more. So we've been doing our exercises every afternoon this week. She surprised me this afternoon by doing this:

I didn't know she could do this. She is on the Boppy, so she have more of her weight on her lower body than she would on the flat ground, making it easier to lift her head (this is one the exercises they suggested). But this is still really good to see. Her neck is definitely getting stronger!

By the way, the therapists just though she was delayed because she couldn't start tummy time until she was 6 weeks old. So her muscle tone is just lower than it should be. She should be able to catch up soon if we work with her.

Deep Thoughts by Stian

2011-08-16T08:55:00.001-04:00

While contemplating the sky last evening:

"The trouble with cloud hats is that they tend to float away."

High Chair

2011-08-14T21:24:00.001-04:00

Now that Silje is three months old, we figured she was strong enough to sit in the high chair. So I pulled it out last week and gave it a good scrub down. I reassembled it today and we put her in it. I think she liked being at the table with us.

Knut

2011-08-14T20:47:00.003-04:00

On the way back to Indiana we met up and had lunch with Kris's friend Knut. He was en route from Madison to Minneapolis as we were on our way home - so we met him in Eau Claire. Knut lives in Norway, and Kris worked with him when he lived in Norway. Knut came over for our wedding back in 2001 and we visited him in Norway when we were there in 2003. He is a long time friend of Kris's family.

Trip North - Wisconsin - Part Three

2011-08-14T17:36:00.004-04:00

Grandma read the boys stories every night before bed.

More goofy faces.

See, it's genetic.

Grandma bought the boys matching shirts. Notice Nathaniel's says "Nathanielosaurus" on it - Stian's says "Stianosaurus."

Silje hanging out with Grandma.

Silje hanging out with Grandpa.

Silje hanging out with Uncle Wayne.

Stian enjoys the view.

And finally a few wildlife pictures.

And then we headed home again.

Trip North - Wisconsin - Part Two

2011-08-14T10:23:00.006-04:00

We had a campfire one afternoon and roasted hot dogs for lunch and marshmellows for s'mores. Stian had been talking about doing this for awhile because they had had a section at his school this summer all about camping. So he had been looking forward to the campfire and the s'mores in particular.

Yes, Silje was on this trip too - we didn't leave her in Minneapolis!

A picture Stian took (we should really dig out our old point and shoot for him, as he really liked taking pictures, but he was making us nervous with our good camera, and it's awfully big and heavy for him).

Yeah, I think it's safe to say he liked the s'mores.

It's possible that making goofy faces for the camera runs in the family...

I rest my case.

We also got the boys into the lake for a little swimming.

To be continued...

Trip North - Wisconsin - Part One

2011-08-12T22:04:00.010-04:00

After we spent several days in the Cities we went up north to spend several days with my family. The weather was perfect, so we spent a lot of time outside.

One of the first things we did was Stian, Nate and Uncle Wayne drove the remote control boat.

Notice the four bald eagles flying around over the lake in this one:

When the boat invariably went out of range Wayne had to hop in the paddle boat to retrieve it.

The next morning Stian went fishing for the first time. They were just doing catch and release. Though it was more just feeding worms to the fish as my dad had removed the barb off of the fishing hooks so noone got hurt, and this made it much easier for the fish to just steal the worms off of the hooks without getting caught.

Despite going through a heck of a lot of worms, there was only one fish caught, and it was by Nate.

Just as Stian was building up the nerve to touch the fish it got off the hook and flopped around on the dock. I was a little worried Stian was going to leap off the dock trying to get away from the fish flopping around (though he was surprisingly unphased by it), but Wayne scooped the fish back into the water.

We went for a number of boat rides while we were there.

Stian was fascinated by the water going past the boat as we cruised around the lake. He would go from one side of the boat to the other, and from front to back, over and over watching the water go whooshing past. We're not sure what exactly he was looking at. We decided he would likely be a fluid engineer when he grows up, or perhaps a boat captain.

The boys played in the yard quite a bit. They played with each other (though for some reason those pictures all turned out blurry) and they also played apart. Nate concentrated of getting his frisbee throw down, and Stian worked on hitting a ball with a bat. Both were getting quite good at their respective sports.

Unfortunately this is the only picture we got of Stian with the bat. I guess we were all too impressed with his abilities to take a picture. I'm not sure why he looks sad and contemplative in this picture. He was having lots of fun playing baseball, but he is 3 1/2, so it's entirely likely he was sulking/pouting about something. Or perhaps not. Who knows.

All right, I better publish this before it disappears on me. To be continued...

Withdrawal

2011-08-12T14:47:00.003-04:00

Silje had an appointment with her neurologist on Tuesday. He examined her and thought she looked good. He also did an EEG. He said because she hasn't had any more seizures if the EEG came back normal, we could start weaning her off of the phenobarbital.

The EEG is painless, but Silje got rather fed up after awhile of lying there having a million electrodes attached to her head. But once they were attached she just laid in my arms for 30 minutes - she slept through much of it.

We got the results of the EEG this afternoon - it looked normal. So now we begin the weaning. The nurse I talked to today said she will have withdrawal symptoms, because she is an addict. So she advised taking weaning slowly. Her dose is 5 ml a day right now, and she said to reduce it by 0.5 ml a day each week. I hope the withdrawal isn't too hard on all of us. Her dose has been naturally decreasing over time as she now weighs about double what she did when she first started at this level. I'm curious to see what Silje is like off of the phenobarbital though. She's been on it since about a week after she was born.

Birthday Cake

2011-08-11T21:30:00.005-04:00

I'm working my way through the Wisconsin trip pictures, but decided the birthday cake that my mother made for Wayne deserves its own post. I think she has taken birthday cakes to a whole new level. I'm not sure where she will go from here.

Three Months!

2011-08-11T20:41:00.003-04:00

Silje is three months old today. At her doctor's appointment on Tuesday (more about that later) she was 13 1/2 lbs and 23 3/4 inches.

And a bonus picture of Stian:

Day Care

2011-08-10T22:12:00.003-04:00

(I'll get to the Wisconsin leg of our trip, it'll just take a little time to sort through all the pictures)

Silje started day care today. I don't have any pictures, but I guess she did really well. She was just there for two hours today. But when I left she was smiling in Miss Tara's arms, and when I came back she was pretty much in the same state - though less smiling, and more tired looking, but she wasn't crying anyway. She napped for all of 5 minutes in Tara's arms. Hopefully they will be able to teach her how to take a proper nap. She was sure grumpy the rest of the day today. I'm not sure why. She finally fell asleep this evening in my arms while we I was outside pushing Stian on his glider and Kris was mowing the lawn. I guess like Stian did at this age, Silje likes really loud white noise! I hope she continutes to do well at school.

Trip North - Minnesota

2011-08-10T14:12:00.010-04:00

(it's really hard to get blog posts done when a small child won't ever let you sit at your computer, doesn't nap and doesn't go to bed until really late at night...)

We just spent about a week and a half up north visiting family. We went to Minnesota first.

Here's Silje, hanging out with Auntie Karin.

Perhaps she didn't like something Auntie Karin had to say?

Or perhaps there's a reason I call her my little lizard. (With Karin's friend Holli)

We went to a party with some camp friends and both kids were a hit. Silje for her cuddliness and Stian for being so amusing.

Towards the end of the evening Kris pulled out his guitar to lead people singing camp songs. As he sat on his guitar case playing the guitar and leading the songs, Stian stood along side him up on the guitar case, singing along loudly. Stian doesn't know the words to any of these songs, but that didn't stop him. He sang along, with conviction, and with gestures. It was really quite adorable and made everyone giggle. I couldn't get a picture of this, as it was dark by that time, and I was holding Silje. But Kris's friend Kai took a picture and we have a copy of it. Kris took it to work though, so I will try to get it from him and scan it. Stian sure looked like he was getting ready to be a camp counselor.

We spent time just hanging out at Grandma and Grandpa's house.

We also went down to St. James and visited with Great Auntie Ikey.

And Stian slept in the car on the ride back to the Cities. Stian sleeping in the car is a pretty rare occurance these days.

Silje hung out with Klebo (they were awfully cute together - Klebo is so good with kids - Stian had a blast playing with Klebo, we just don't seem to have any picture evidence of that):

And she hung out and chatted with Grandpa:

Then Silje and I went to breakfast with Laura one morning:

And Stian loved the Candyland game she gave him, and it was perfect for entertaining an antsy little boy in the hospital family lounge. (I apparently am awful at Candyland. Who knew? I got creamed by Stian, then Grandma and then Kris.)

And Silje hung out with Uncle Brad too.

Napping

2011-07-28T15:38:00.004-04:00

As I said in my last post, Silje really doesn't nap anymore. I'm not sure why. I think yesterday she slept for about 30 min during the day. The only way I got her to do that was to lie down with her. She will fall asleep if she's tired enough, but I can't get much work done as I have to lie there with her. And I can't really nap with her there as I'm too paranoid about rolling over on her or something. Thank goodness for iphones, so I can at least entertain myself a little while I lie there. And take pictures.

Here she was napping today:

And then two minutes later. "Mommy, can we get up now?" This was about 18 minutes after she had fallen asleep. Oy.

Some pictures

2011-07-27T09:00:00.005-04:00

I haven't had much of a chance to update this lately. Silje has decided that she no longer naps, and she doesn't go to bed until fairly late at night. I'm not sure how she functions on so little sleep. For the most part she is still a pretty happy baby though, so I'm not too worried about it. But it does mean that my time on the computer is limited. She's still asleep this morning, so I thought I'd take a minute to put these pictures up and make the grandmas happy.

A cute picture of Silje from the other day:

A wacky sunset:

And then my futile attempt to get a decent picture of the three of them last night. Stian's new favorite stalling technique for bedtime is to pay attention to his sister. He more or less ignores her the rest of the time they are together, but at bedtime, when he's supposed to be doing something else, she suddenly becomes fascinating. He'll talk to her, and touch her, and look at her. Of course we sort of indulge him because we do want him to have some interest in her, so his stalling technique works. Last night after I was done reading him stories, and it was time to go upstairs and get in his jammies and brush his teeth, he crawled up into the chair with Daddy for a little bit instead.

That's my goof ball boy. Oh, and those are Kris's glasses, Stian thinks it's pretty fun to play with them. They are just drug store cheaters, so Kris isn't too terribly worried about him destroying them.

Chillin' in the shade

2011-07-17T21:50:00.002-04:00

Well, not exactly "chillin'" - it was about 95 degrees and humid when I took this picture. But Kris and Stian often take a break in the shade here when out riding bikes. Hard to believe Kris planted that tree from seed.

The Fair

2011-07-17T21:11:00.007-04:00

We made it over to the fair today. Stian had a great time. When we were walking to the car after we were all done I asked him if he had had fun and his response was "I really loved it!" We didn't make it past the midway as it was very, very hot. So Stian and Kris did the rides and played some games, and then we headed home again. It would have been fun to go look at the tractors and animals and all of that, but I thought Silje had had about enough at that point. Though she was a trooper and wasn't complaining, I was worried about her overheating.

We had to go straight to the bumper cars because Stian wanted to know if he would be big enough this year to ride them. Sadly, he was not. He'll have to grow another two inches by next summer to ride them then. He took the news pretty well.

So we wandered off and found a bunch of rides that he could go on.

I was really surprised he wanted to go on this one. He was okay with it at first.

But then it got to be too much for him and Kris asked them to stop it so they could get off. Fortunately they were the only ones on the ride, so it was no big deal. Stian didn't cry or anything, but when he came over to me after he got off he said "it was a bit much for me."

Back to more tame rides.

And games. Stian won a little stuffed duck, and Kris won him a Winnie the Pooh Bear.

And then finally a treat.

Yes, Silje and I were there too - but we spent most of the time jumping from shady spot to shady spot. And I kept wetting her down with water and fanning her. I didn't even get any fun fair food this year (that's Kris's ice cream cone in my hand in the next picture, I don't like soft serve). I really wanted mini doughnuts and they didn't have any. So I had a fresh squeezed lemonaid and that was it. Ah well. Better for my cholesterol I guess!

Columbian Park

2011-07-16T21:24:00.004-04:00

The Tippecanoe County 4H fair started today. So we loaded up and headed over there only to discover that I had read the schedule wrong and the midway - the part with the rides, the games and the food - doesn't open until tomorrow. Stian was pretty disappointed. Me too - I was looking forward to eating horrible-for-me-but-oh-so-yummy fair food. So we decided to head over to Columbian Park, which isn't too far away, and check out the few rides they have there all the time.

Stian enjoyed the rides, but hopefully we will make it to the fair tomorrow when they are actually open!

More tummy time

2011-07-15T23:07:00.005-04:00

I took some pictures of Silje doing tummy time after her bath this afternoon. She's not a big fan of it, but will put up with it for a little while.

I also took a video of her complaining at me. She will eventually cry if I let her go on too much after she reaches the complaining stage. But I think the complaining stage is pretty darn funny, so I have a hard time rolling her over and not just sitting there giggling at her.

She found her thumb

2011-07-13T13:15:00.003-04:00

It was only a matter of time since she likes to sleep with her hands up to her face. She did in utero too - we never really got a good look at her face on the ultrasounds because she always had her hands over her face.

Tummy Time

2011-07-12T13:29:00.001-04:00

Tummy time wears a girl out.

Blueberries, Baseball and Cooing

2011-07-09T20:21:00.003-04:00

It's blueberry season! We loaded up early this morning (well, fairly early, we wanted to beat the heat) and went over to the blueberry farm to pick blueberries. We picked quite a few. Kris did most of the picking. I was wearing Silje in a MeiTei, so I was able to pick some, but the mosquitos were pretty bad so she and I went back to the car after a little while. Kris and Stian had bug spray on, but Silje couldn't have any, and I didn't think I ought to while wearing her. We didn't bother with the big camera, so I just snapped a few pictures with the iphone. Stian put as many blueberries that he had picked into his mouth as he did in his bucket. Kris gave the farmer a little extra money to pay for those!

We had a busy day. After blueberry picking we went to the farmers' market, then the library, then the grocery store, then home for a nap. After naptime we played outside and went for a walk/bike ride and chatted with a neighbor. Then we went out for Indian food (Stian isn't all that crazy about Indian food, but he loves a Mango Lassi!). After dinner Kris and Stian played baseball. Stian is getting surprisingly good.

We also finally got a little video of Silje "talking" tonight. She'll sit and chat away in your arms, but as soon as you pull out the phone to record her she gets quiet. Tonight she's more complaining than talking. But she does often coo away in a happy little voice. You can hardly blame her for complaining though - she has a bad cold.

Awwww

2011-07-06T21:53:00.002-04:00

Some old stuff

2011-07-06T12:55:00.004-04:00

Kris found these pictures and I thought I'd put these on here just as a record.

First, here is a picture of the ambulance Silje took from Lafayette to Indianapolis. The transport team was very impressive. They came in in their black jumpsuits and were very efficient and in control. The team is made up of a doctor, an RN, a respiratory therapist and an EMT.

And here are two pictures one of the transport team members took and gave to us. She's only about 36 hours old in these pictures. They are hard to look at now, especially when you realize they probably took these pictures and gave them to us because they weren't sure she would survive the ambulance ride and wanted to be sure we had pictures of her. They are also a reminder of all that she has gone through and how far she has come.

I also am surprised by her hair in these pictures - it's so thick! No wonder I was so floored by it when I first saw her. It's not nearly that thick anymore. I wonder if that means it's falling out? Will she lose it all? Will it grow back blonde?

Cute picture

2011-07-05T20:12:00.001-04:00

Just a cute picture of Stian and Silje together. It was taken with Karin's cell phone, so it's a little grainy, but it's still super cute.

Grandma's Birthday

2011-07-03T10:35:00.005-04:00

Grandma's birthday was actually on the 1st, but we didn't get coordinated enough to celebrate that day. So we celebrated yesterday. We had a full day. First Peter and Loretta stopped by Chris and Betsy's house.

Cousin Peter is funny!

Later we went to the hospital and Silje got lots of cuddles. With Auntie Karin:

With Grandpa:

With Auntie Trudy:

Finally we got around to celebrating Grandma's birthday.

Stian and Grandpa have a chat:

Grandma opening presents:

Grandpa's gift to Grandma (made by Karin):

Then later in the evening we went over to Karin and Brad's and formed a band. We're coming to a venue near you - consider yourself warned!

More new family

2011-07-02T10:20:00.005-04:00

Wayne and Nate drove up to see us at Karin and Brad's yesterday evening. So Silje got to meet her uncle and her cousin. And Stian and Nate got to play legos together. We also all went out for Chinese food. It was nice to get a chance to see them while we are up here. We plan to come up again later in the summer and hopefully we'll get to see Wayne and Nate again, this time at my parents' house. But it was nice that we got to spend the evening with them yesterday.

I like how Silje is looking at Nate in this one:

It's too bad this picture is blurry as it's the only one we got of the boys playing together. They were having fun though. And yes, Stian is wearing his ear protectors. There was a storm coming. He wore them all evening, even at the restaurant. They have become a bit of a security blanket for him. We did get a pretty nasty storm last night though, so it's better to have him wearing them than to have him screaming and crying and scared to death of the storm. I didn't really notice if he got any funny looks at the restaurant. I'm so used to seeing him wearing them that it doesn't seem odd to me!

Pool!

2011-07-02T09:59:00.005-04:00

Yesterday was hot so we spent a good portion of the day in Karin and Brad's pool. That was really, really nice. Stian really enjoyed the water and Silje seemed to enjoy napping and hanging out poolside.

We bought Stian a "Puddle Jumper" - this is the best thing ever. It's very safe and after awhile Stian felt very confident in the water floating around by himself. Of course we kept an eye on him, it's not that safe. But he really enjoyed it, and we really enjoyed swimming around with him.

Silje meets some more of her family

2011-07-02T09:10:00.005-04:00

Kris's dad is in the hospital, so we took an impromptu trip up to Minnesota this week to see folks. So Silje got to meet some more of her family.

Here is Silje meeting Grandma:

There are some pictures of Silje meeting her Grandpa too, but they are on Karin's camera. So when I get those I will post them too.

Here is Silje meeting her cousin Peter:

Here is Silje meeting Tor Dahl, a good friend of Grandma and Grandpa (and his daughter Tove is a good friend of ours):

And Silje with her Auntie Karin:

Tummy Time

2011-07-02T08:56:00.002-04:00

Silje could finally start tummy time this week. She had to wait 6 weeks post surgery. She wasn't terribly impressed. She fussed a little, but did stay on her tummy for about 30 minutes. She didn't try to lift her head at all though. She will lift her head if she's lying on someone's chest though.

Fiddlers

2011-06-26T10:12:00.003-04:00

This weekend is the Indiana Fiddlers' Gathering in Battle Ground, so we went over yesterday afternoon. We had a nice time, and Stian really seemed to enjoy the music. Silje slept through much of it. There was also a square dance later that we didn't get any pictures of, but Stian sat and watched that for a long time too.

Cardiology Appointment

2011-06-24T21:25:00.003-04:00

Silje had an appointment yesterday with her cardiologist. We drove down to Indy to meet with her. Incidentally, she does come up to Lafayette occassionally, so we will be able to have other appointments up here, but she wanted us to come to her office for the first appointment following her discharge from the hospital.

First they measured her weight and length. She was 10 lbs 5 oz. So she has gained nicely from last week. And she was 23" long. She was only 21.5" or so last week, but was 21" at birth. I had figured after her measurement last week that her birth measurement had been inaccurate, as that put her in the 90-95th percentile for length. But now I'm thinking last week was inaccurate and her birth measurement and yesterday's were the right ones, and she's just a tall/long baby.

Next they did an EKG. They didn't say much about that, but for some reason Silje really didn't like it. I have no idea why, it's pretty unobtrusive. But she really cried about it, which is odd for her. I don't think Kris and I have ever really heard her cry like that before.

After she calmed down, and fell asleep actually, they took her blood pressure. They took it in both her arm and her leg. There was about a 20 point difference, with her arm reading higher than her leg. This indicates that there is likely some stenosis in the aortic arch, where they had done the repair, as that area supplies blood to the lower part of the body. Dr. A said this wasn't anything to worry about yet, but they would keep an eye on it. If they need to they can put a balloon up into that area and expand it to get it to stretch. This would require an overnight in the hospital, but is not a particularly dangerous procedure.

Next was the echocardiogram. Silje didn't mind this at all, even though it lasted quite awhile. In fact she slept through the first half of it or so. The echo tech looked for a long time, and then Dr. A came in and also took some images. They were looking at the whole heart, but in particular they were looking at the aortic arch and the aortic valve. They both look good. The valve is a little underdeveloped because it was not used much as the arch was interrupted, but Dr. A said it actually looks pretty good. That could be a potential problem in the future, but Dr. A isn't too worried about it. The other thing she mentioned, which she said they had noticed before, but I don't remember them ever saying anything to us about it ealier is that she has higher pressure than normal in her pulminary arteries. I guess this isn't all that uncommon because in younger people they make more of a right angle, and as you get older the go up more and the pressure lessens. But hers is more pressure than normal. So something else that we don't need to be terribly worried about, but they will keep an eye on.

Overall Dr. A thought she was looking really good and was very happy with how she is doing.

Here is the image of the heart that Dr. A gave to us to show us what she was talking about.

After our appointment we stopped by the PICU to say hello. They had told us when we left to come by sometime after she was discharged because they love to see their kids later when they are healthy. So we stopped by and saw a few of the people we had worked with during our time there, including the nurse we got to know the best, Tiffany. She was happy to see Silje again, and see her doing so well. I'm sure it does feel good to them to see these kids later and see that their hard work paid off.

Oh, and yesterday was our 10th wedding anniversary! Going to the cardiologist wasn't the most fun way to celebrate, but getting a pretty good bill of health for our little girl was a good present.

Sleepy Head

2011-06-21T23:11:00.003-04:00

Silje turns 6 weeks old tomorrow! On the one hand I can't believe she is already six weeks old, but on the other we've been through so much in her short little life it seems longer than that.

Here's just a cute picture of her sleeping on my shoulder this evening. This is her new favorite way to be held.

And here she is napping the other day. It amazes me that she doesn't need to be swaddled. I swaddled her the first few nights we were home and she kept working at least one, if not both arms out of the swaddle. So I quit bothering with it and she sleeps fine without it. Of course I bought all these really nice muslin swaddling blankets that I'm not using now. Ah well, we'll find another use for them.

New Pool

2011-06-21T22:15:00.005-04:00

We got Stian a bigger pool for this summer. He got into it for the first time tonight. He kept saying "I really like this pool!" and "This is really fun!" so I guess it gets two thumbs up from Stian. It's big enough that Kris got into it with him later. I was making dinner at the time though, so didn't get a picture of that.

Here's Stian filling it up the other night:

And then him playing in it tonight:

(Yes, it even has cup holders! Fancy, no?)

Silje was hanging out in her stroller while Stian played.

Silje's First Pediatrician Appointment

2011-06-15T22:33:00.004-04:00

Silje has seen about a million different specialists, but yesterday was her first appointment with her normal pediatrician. The appointment was pretty uneventful, except that he thought she looked really good. She's up to 9 lbs 4 oz too, which is great. That means she is still gaining weight now that we are home. We will see him again in two weeks, and if she is still gaining well we can take her off of the fortified breastmilk. Right now she nurses primarily, but gets two bottles a day of breastmilk with formula added to up it's caloric value to help her gain weight. Heart babies often have a hard time gaining weight because they get so exhausted from breastfeeding that they quit before they get enough. So this will be another sign that she is getting stronger.

Here are two pictures I took of her smiling yesterday. She is just starting to do a "social smile" - as they call it. So a smile in response to someone, not just some random smile that babies do in the beginning. She's not consistent in it, but I can sometimes get her to smile by talking to her. She also smiles at the ceiling fan sometimes (.just like big brother used to) but I'm not sure that's really a social smile.

And then a cute picture of big brother. He's still having some issues adjusting to life with another little person in the house, but we've been home less than a week, so hopefully it will get easier with time. He's just been acting up more and being more difficult. Though he doesn't say he has any problems with Silje, and doesn't really appear to, I would expect this acting up is in reaction to her. It might also just be adjusting back to having Mommy and Daddy home again after so long and figuring out where those boundaries lie again.

A Family of Four

2011-06-12T15:38:00.003-04:00

Now we are adjusting to being a family of four. Stian is doing pretty well with it, but definitely has his moments of jealousy. We are all lucky that Silje is a very mellow baby. It makes it much easier for Stian that she is pretty calm. Yesterday we took them both to the library, then the farmers' market and then Menards. Silje didn't cry or fuss at all during the outing. Stian would have cried most of the time at her age. I'm happy for Stian that Silje is so chill. I think it would be really hard on him if she demanded so much attention from us all the time. And today we took them to the park and out to lunch. So far it's going pretty well.

Grandma & Grandpa

2011-06-12T15:28:00.002-04:00

My parents stayed for one more day after we got home, but then left yesterday morning to return to their own home. My mom was here for two months, and my dad for one. We were all sad to see them go. We are so fortunate that they were able and willing to drop everything and come and help us. I don't know how we could have gotten through this without them.

Here are two pictures from their last day here.

HOME!

2011-06-10T11:10:00.004-04:00

We finally got to take Silje home yesterday!

Swim?

2011-06-07T20:06:00.003-04:00

Not much to report today. Silje ate well, but we'll see tomorrow if it was enough and if she gained any weight or not. Otherwise we just hung out and cuddled on her.

Sink or Swim

2011-06-06T20:31:00.005-04:00

We have several day’s worth to update. First, on Saturday my parents brought Stian down and we went to another nice park in Indianapolis. It was quite hot but we had a nice time anyway.

Then when it was time for my parents to go home, Kris headed up to Battle Ground to spend a couple of night at home. My mom has pictures up on her blog of his time up there, here is just one:

Kris headed home because my friend Laura flew down for 24 hours to visit. It was nice for Kris to have a break from the hospital and to spend some time with our little boy, and it was so nice for me to see Laura and have her entertain me.

As for Silje, she has been doing well. The results of her echo came back that the effusion is still gone. She has been eating pretty well, but still takes some food through the nose. Her neonatologist came in this afternoon and said she had a brilliant idea, we’re going to pull her nose tube and see if she sinks of swims. She said that Silje is taking about 90% of her food by mouth, she’s a good-sized baby, and she will probably do fine. So we’re going to try a couple of days of her taking all of her food by mouth and see if she gains weight. Before they were giving her 65 ml when they gave her a bottle, but now we will give her as much food as she can eat and not worry about it. So if she only takes 50 ml at one feeding we’ll hope she makes up for it at another feeding by taking 80 ml. So we will see how it goes and hope that she is able to gain weight doing this. If she does then maybe they will finally send us home!

In the meantime, we’ll get to look at our little girl without something taped to her face!

Falling Into Place

2011-06-03T20:57:00.004-04:00

Today's update is very upbeat. We haven't gotten the green light for going home yet, but it is starting to feel like they are working up to it. Last night Silje took all but about 35ml of her nightly feeds from a bottle. The part they had to put in her tube was at 8:30 last night--which was a little unfair since she had just finished eating at around 7:00. Her normal feeds are three hours apart, so asking her to do one an hour and a half early was probably a bit much. All of the others (midnight, 3:00 and 6:00), she took the whole 65ml from a bottle. And all day today she nursed from mommy like a champ. So, her feeds are definitely getting better.

They came and did a follow-up echo cardiogram today. We didn't get the results of that today, and the tech doing the procedure wasn't giving up any hints, but from just looking at the image with my untrained eye, it looked pretty good. If the echo looks good to the doctors, then Silje can reduce her meds by one.

Next, one of the worries with Interrupted Aortic Arch is that it is often accompanied by something called DiGeorge Syndrome. DiGeorge Syndrome, for those who like to consult Dr. Google, is associated with all sorts of horrible and dreadful things. (To be honest, I haven't actually consulted Dr. Google myself because there's no sense scaring oneself silly any more than one has to!) AND, DiGeorge is really more associated with Type B interrupted arch than with Type A interrupted arch. Silje has/had Type A. But, they did the chromosome test just the same. Today the nurse looked it up in her chart--since no one had told us yet what the result was--and it appears that her chromosome test came back normal. Which, I guess, means that there is no DiGeorge Syndrome. (Thank goodness!)

They also did the MRI today. The results were somewhat expected and are, I have to say with much relief, very positive. They weren't perfect, but we didn't expect them to be. But, and this is the main thing, we can expect no effect whatsoever on her development from the small spots picked up on the MRI. That is, her seizures where caused by something (they can't say exactly what), and that something left some small spots in the MRI. Those spots, however, are something that the brain will completely work around as Silje develops. The neurologist said that she has seen kids that haven't had seizures, who have had no symptoms whatsoever, who have similar spots in MRIs done on them. She went on to say that in the normal aging process, a person can expect to get one such spot per decade of life--that is, a person of 50 probably has five or so such spots. So, in a couple of months, they will re-evaluate Silje and see if she can be taken off the medication that stopped the seizures. It seems that the expectation is that she will no longer need that medicine and the seizures will be gone.

So, it seems that the pieces are falling into place and it looks more and more like we will get to take Silje home in the next few days.

Keep those positive vibes coming. We still hear from many of you every day and we really appreciate the support.

Doing Better

2011-06-02T20:24:00.003-04:00

Silje made some progress today in her eating. During the night last night she took some via bottle but had to take some through her tube too. She did better during the day today, she nursed 4 times and took a little more by bottle after nursing once. She also gained a few ounces yesterday, so that was good. We'll see how she does during the night tonight.

Tomorrow she has another echo scheduled and she is finally getting her MRI done.

Hitting the Wall

2011-06-01T19:30:00.004-04:00

So, when you're training for a marathon, you can't just train up in a weekend and call it good. You have to work your way up to it over time. That's how the speech and language woman, Linda, put it today. Silje was doing great and meeting all sorts of goals, but then she just ran out of steam. Last night for the 2:00am and the 5:00am feedings, she would only take about half of what she needed by mouth before she was too pooped out to continue and so they had to put the tube back in her nose. This morning she tried nursing for a bit, but she was just too tuckered out, and so we gave her the rest by tube. And at 11:00 we just gave her the whole thing by tube and let her sleep and rest up.

At 2:00, she nursed and did fine. Then at 5:00 she nursed and seemed to do fine, but she fell asleep again. By 6:45 when it was time for us to go (we can't be there from 7:00 to 8:00 during shift change), she was fussing and got hiccups and was inconsoleable. The nurse told Jeni that she could go ahead and nurse Silje for ten or fifteen minutes if she thought that would help. It sure seemed to. By the time we left, Silje was quiet and ready for bed.

Let's hope it goes well tonight with the feedings. But, if it takes a bit longer, that's OK. Nursing is an aerobic activity. And, while perhaps not a marathon, it still takes time and effort to build up the stamina and ability to keep going.

Also, Pam and Don came down from Battle Ground for a visit today. We mostly took turns holding Silje, and had lunch in the hospital cafeteria.

No More Tube

2011-05-31T20:26:00.004-04:00

This morning they basically told us that if Silje can take nothing via the feeding tube for 48 hours, she will be ready to go home. They fed her through the tube last this morning at 2:00am. So, I started counting from that hour.

They went on to add that we would need to make sure that she is gaining weight feeding only by mouth. So, that adds an extra twist. But it does tell me that if things continue to progress, we are getting ever closer to taking her home.

Now, the reason they fed her through the tube at 2:00 this morning was that she wasn't awake enough to take a bottle. The nurse today said that maybe if the tube hadn't been there, they might have had more incentive to wake her up--and not have to put in a tube. I'm not saying that they should have done that last night--it might not have been time yet. But, the nurse today cleared it with the doctor and they removed the tube for tonight. So, for the first time since she was born--those first 24 hours--she doesn't have a tube of some sort in her nose or mouth.

The OT and PT folks came by, too, today, and gave their assessment. Nothing in the assessment would delay her going home. There are some things we need to work on, of course, but it is all stuff we can do at home.

Eating Progress

2011-05-30T20:05:00.002-04:00

Silje continues to make good progress with her eating. During the day today she took almost all of her food orally, which is huge. Her 9:00 am feeding she took all 65 ml by bottle. At her noon feeding she nursed for awhile and then took some from the bottle. At 3:00 she nursed really well and didn't take anything from the bottle. And at 6:00 she nursed and then fell back asleep, so they did end up giving her some food through her tube because she hadn't nursed for very long before conking out. We'll see how she does overnight tonight. They told us this morning that she slept all night last night and they couldn't get her to wake up to take a bottle, so they fed her through the tube during the night.

She had a good day. She was awake for the most part from between 9:00 am and 3:30 pm, but then she fell asleep after her 3:00 pm feeding and woke up long enough to nurse a little at 6:00 and went back to sleep. Hopefully she will sleep well again tonight.

Otherwise it was a quiet day. Kris's coworker Jen stopped by for a visit. That was fun. Now that we are no longer terrified the days get a little long and boring. Especially over the long weekend when all of the therapists are off. Hopefully we'll get visits from the speech therapist, the physical therapist and the occupational therapist tomorrow. So a visit from Jen was a nice diversion in a quiet day. Silje slept through her visit though.

Continuing to Improve

2011-05-29T20:04:00.009-04:00

Today we had a visit from grandma and grandpa and Stian. It had been a week since Jeni had seen him. I went up to Battle Ground on Thursday, so I had seen him more recently. Stian has been keeping grandma and grandpa busy. We're very glad they are able to stay with him while we spend all this time in Indianapolis. I know it's a lot of work for them to keep track of an active three and a half year old, but it sure is appreciated.

We went to a park in Carmel, IN, which is near here. The park had a large man-made hill with huge stones leading up one face of it. This reminded Jeni and me of Avebury in England. What is it about large rocks that draws one in? There was also a playground and water area where people about Stian's age could splash and cool off in the warm weather. This was a surprisingly nice little park. We took a million pictures and I'm just going to go ahead and post a bunch below because the day was full of fun and sunshine.

Later in the afternoon, after Pam, Don and Stian had headed back north, and we got back over to the hospital, Silje had been making further steps in her progress. They increased her food volume again, we were able to do more bottle feeding and Jeni was able to nurse her; albeit after pumping off most of her supply--we don't want to waterboard our little one! Moreover, they removed the last needle from her little body when they took out her IV line. She has now only a lead to check heart and blood oxygen, and the feeding tube through her nose. She can wear her little outfit with both arms in the sleeves!

We still don't know how long we have to go, but if she continues to eat well, and the physical therapy (PT) and occupational therapy (OT) folks say she's doing well, I don't imagine it will be that much longer. PT and OT don't work weekends and holidays, so we won't get a visit from them until Tuesday. In the meantime, we can continue to work on eating--and, of course, cuddling. We have spent hours with Silje in our arms and it has been great.

A Quiet Day

2011-05-28T20:37:00.003-04:00

We had a pretty quiet day today. They are increasing her food amount, they will do a follow-up echo cardiogram in a week, the MRI will be done just before she is discharged. Today was more learning to drink from the bottle, learning to breast feed and basically getting stronger and healthier. Silje is doing all of these things like a champ. We sat and held her for a long time today--while the radio was doing its '80's Weekend.

Oh, and I got to give Silje a bath today. The nurse helped me out by telling me what to do, but I did all of the bathing--including the hair washing. There were parts of the bath that Silje did not like, but the hair washing was quite relaxing; even if the hair brushing was not...

You will note that my phone lacks a bit in the picture-taking arena.

In any event, after the bath, 15 ml by bottle and being awake for nearly two hours, it was time to drop off for a little snooze again.

No Residual Effusion

2011-05-27T15:54:00.004-04:00

A couple of things to report today. Both of them very positive.

They came in with their echo cardiogram machine shortly after lunch today. The person doing the procedure is not supposed to let on what the results are, but we got her to say something along the lines of "have a good weekend, you won't be seeing me again" instead of something like "See ya later." So, we knew that the news was good. A bit later the nurse came in to confirm that the doctor had looked at the results and said that there was "no residual effusion," that the fluid around her heart was gone now.

Also, we've been working on eating. This morning, before I got here, Jeni worked with the speech and language pathologist to give Silje a bottle. She only drank 5ml and they could hear that there was some congestion, but they couldn't really tell where. However, at 12:00 and 3:00 this afternoon, Silje drank 10ml and 15ml right down. No congestion, no problems at all. She did great. They still want to go slow with the learning process, but this was excellent progress.

So, everything is moving in the right direction.

Clothes & a Bottle

2011-05-26T20:03:00.007-04:00

Silje's new nurse in the NICU decided it was time we got Silje into some clothes. Poor little girl has been naked except for a diaper and a blanket since she was diagnosed. So the nurse dug through their stash and found a few things that ought to fit her. Most of their stash is in preemie size, so we'll have to have Grandma dig through her clothes and bring down a few things this weekend.

Do you know how hard it is to take a picture of a child in your lap with an iphone? Not easy I assure you! Because she has the IV in her one arm and this outfit was long sleeved, we opted to just leave her arm out.

Silje also had her first go at a bottle this afternoon. She did well. She took probably 8 mL, which is not much, but still really good. She was good at it, she didn't get stressed out and she was interested in it and wanted to take it. But she started to get congested so the speech therapist decided we ought to stop and try again tomorrow.

Finally to the NICU

2011-05-25T19:15:00.006-04:00

Well, we didn't post an update yesterday because there wasn't much to update. The echo in the morning came back and there was slightly more of an effusion than the previous day. Not enough to be TOO concerned about, but enough to keep Silje in the PICU one more day.

Silje slept the ENTIRE day. She was up for about 10 minutes around noon and then from 8:30 until about 10:30 in the evening, but otherwise she was asleep the whole day. It was kinda boring for Jeni and me....

Today, the effusion was "unchanged to maybe slightly smaller" and Silje got the go-ahead to move to the NICU.

While we waited for the transport team, Jeni's parents arrived. Pam finally got the chance to hold her granddaughter again

The transport team got her over to the NICU and Jeni and I were able to come up and see her in her new digs.