Christmas Program and Temple Square

Here are a few pictures of the family program and our trip to Temple Square.

Christmas Tree

Hi all...here's a couple of pictures of our tree. Isn't it awesome? I think so.



This is one of our friends, Cameron XXXXXXXXXX, who said I could put this picture up as long as I didn't reveal his name. Well...Merry Christmas!!!


Oh....and Marcella is up to 8lbs 10oz...pretty big, eh?

Marcella's New Hobby

Today I was having a hard time getting Marcella to go to sleep, and after singing every song I could think of and I ran out of things to say, we decided to read some stories. It was fun watching her look at the pictures and smile. Her favorite book so far is Colori (which means colors, it is an Italian book that Lucia brought us). I hope that she grows up to love reading as much as Grace and Isaac. Have a great Day!

What's for Dinner?

Or I should say WHO's for dinner. We have found that everytime we sit down to eat Marcella wants to eat as well. In order for Jon and I to be able to both eat hot food, we have devised a way for Marcella to be happy while we eat. She loves being on the table. She is able to see everything and loves watching us.



I decided to dress Marcella up for Sunday even though we weren't going to church. I searched her closet for something that might fit her and I tried this. She went from Preemie outfits to a dress that is for 12 months!? It is a little big but she thought it was cute. (Caroline thanks for the tights, i love 'em)



To Grandmothers House we go. Grandma rescues Marcella after Grandpa tries giving her koolaid. She sure is going to be spoiled. We had dinner at Grandmas last night and it was delicious! Thanks Mom and Dad!

Life back to normal

Hey all....Life is pretty much back to normal. I'll be really glad when this semester is over. I'm almost ready to quit school...just kidding. I've just been amazed at the unwillingness of some teachers to work with me around this whole hospital thing. I'll probably get a D out of one class...a paper that was 5 minutes late that she won't accept...well...whatever. I'm not really too concerned about it right now. I know this would kill some of you out there, but I'm just not too concerned about grades. Pretty strange...whatever.

Marcella is up to 7lbs 14oz, pretty good considering she wasn't even seven pounds a couple of weeks ago. She eats like a maniac now. She'll nurse for half an hour, then eat three ounces of formula...do that every three hours or so. It's really amazing and a little humbling to watch her grow like this. Before we'd do all we could think of...spending an hour trying to get her to eat two ounces of formula, only to have her spit it up. Now it's like she's decided to fatten up for the Christmas Feast...seeing as she was pretty small when we tried to have her for Thanksgiving.



I've got a couple of pictures to share with you guys, so here goes:


Kristin took this when it started snowing over Thanksgiving. Really nice.


This is Lizzie....I'm sure some of you don't recognize her, but it really is her. Kristin took this picture, too.


My pretty wife!!

Biopsy results

We got the biopsy results back, and the doctor said there was a lot of inflammation, most likely from chronic colitis, probably a result from the milk allergy. So it looks like Kanien is going to have a very sad Chocolate Free Christmas...and I'll join her for most things, but I'm still going to eat cheese. So all of you who were planning on sending multiple bars of swiss chocolate (or Hershey's), please refrain until February.

A few more hospital pictures

Here are just a few more hospital pictures for you guys.

Watching the mobile...she really liked it.

...still watching...

..looks at Kanien...

...looks at Dad...

...shot of the mobile...

smiling baby

even more smiles

...after her colonoscopy...When she woke up, she was so mad at that oxygen tube...she kept pulling at it and rubbing her head into the bed. I just took it off without really asking the nurse if I could or not. Then she said I could do it.

We're Home!

As Owen likes to say. It has been the best 7 hours of my life! I am so glad to be home. When we got here everything was a mess and it took a bit to get it all in order, but we now have Christmas decorations up and have officailly watched Mr. Krueger's Christmas. So we are ready for it to come. I just wanted to Thank all of you for everything that you have done for us. It really has meant a lot. It is so great to have such wonderful Family and Friends. I don't know what we would have done without you. Thank you for fasting and praying for Marcella, we have truly been blessed and are grateful to the Lord for all that has transpired. I know it is because of your prayers that we are home today.

Just to fill you in case we haven't been able to talk to you, Marcella has C-diff. (clostridium difficile) It is a bacteria that everyone has, but she has too much of it, so we are treating it with Antibiotics. The only problem is, is that they tried two things as once, me going on this diet and finding out about the bacteria, so they are not sure which one is working. So the Dr. wants me to stay on my diet (which consists of eating fruits, veggies, and meat) for two months. Doesn't that stink. If I am not down to 120lbs by the end of it, she (the doctor) is going to get it. :)

Marcella is still one happy baby girl. It is truly amazing how happy she is. Did I mention that she is up to 7 lbs 7 ounces! It is amazing because in 6 days she gained 13 ounces. Almost a full pound. Thanks again for eveything. Jon and I feel very blessed to have all of you in our lives. We love you!

More pictures...

I don't have much time for an update, but here are a few neat pictures.

Kanien's diet is the only major change...her stomach seems softer since she's started just the formula...so we're really hoping it's just an allergy. We haven't heard back from the second sweat test, but there are some pictures from it below.

She still smiles a lot!

Here's a picture of her looking at her mobile, she really likes it. I guess we'll have to pick one up after we get out of the hospital.

Sweat test...those are heating pads on her arms.

She looks pretty sad...

At least she got a nice lollipop....errrr...binky!!

Room Change

Hi All..Marcella's room has been changed...it's actually the same room, she's just by the window now. So the number is 588-4000 room #4330.

Jon

Pictures and more info on Marcella

Hi all...Just got back from the hospital...Marcella is still there. Now I have pictures!!!!! I've also got some more info, but we'll do the pictures first.

Here she is in her hospital crib. They're pretty cool, even if they remind me of a prison cell.

This is her with Mommy in the ER exam room. They had to admit us through the ER for some strange reason that I never fully understood.

Here's another crib shot

Here's a shot of her in her Primary Children's shirt. Every doctor that comes in to see her (including the residents (who are doctors) and medical students (who aren't yet)) comment on how alert she is. All of the nurses have assured us she's one of the cutest babies they've seen in a long time. When Kanien went home to take a shower, the nurses took Marcella to get a bath. When Kanien came back, she said the nurse told her Marcella had received six or seven "cutest baby ever" comments while travelling down the hall.



Here's a picture of the monitors on her stomach and chest. It also gives a pretty good idea of the distention of her stomach for those of you who haven't seen it. Whenever I see monitors like this, it reminds me of E.T.

Well now I've got to run to class, so I'd better go. I'll write the updates in a little bit. We love you all and thank you for your prayers. OK...just a mini update. They're sure it's not Hirschprung's Disease. They don't really have any other leads, though, and are going to do another Cystic Fibrosis test today. That gets my nerves going again, but I'm not near as nervous as I was last Tuesday. They're also starting Kanien on a milk-free diet (not lactose free, milk free) to see if Marcella is allergic to milk protein. That means Kanien can't really eat any processed foods, and needs to eat a lot of fruits and vegetabes. We'll be keeping Marcella on a formula-only diet for a couple of days to make sure Kanien's "possibly allergic" milk gets flushed from her system.

Well...gotta go, so I'll give a full update later today.

Marcella Update

Hi all,

I thought I'd give you all an update on Marcella. That picture is her right after she was born, but I think it really shows how she feels about all of the tests they've been doing on her.
We had a good talk with the GI Specialist, Doctor Molly O'Gorman, today. She wears a Lance Armstrong "Livestrong" bracelet. Yesterday she made a comment that Marcella's hematocrit was a bit low, and I said, "Well at least we know she hasn't been doping." She got the joke, and we all had good laugh. They're not sure what's taking place within the Bowels of Marcella (get it? "within the bowels of mercy" ha ha...funny!), but have given us some options.

They found a heart murmur yesterday when they were examining her in the ER. She said that if her heart has to work extra due to its shunting some blood over to the left half instead of into the correct arteries, (ecocardiogram) that might be a problem, but she's not sure because she isn't a cardiologist, so they're probably going to do an ecocardiogram tomorrow. It's pretty unlikely it'll have any bearing, but since she's not too familiar with it, they're going to do it just to be safe. The heart murmur doesn't impact the distension of her stomach (bloating),either. The distention is their primary concern right now. Dr. O'Gorman thinks that if she can get the swelling to go down, she'll start gaining weight right away.

She had a colonoscopy this morning, as well as a barium enema. We don't have results for either of those tests yet. They think she might have a bowel obstruction, something similar to a kinked hose. That could be causing the swelling...but it's not totally obvious in the x-ray's they've done. She could also have a "simulated" bowel obstruction...I think that's the word they used. But....usually with a bowel obstruction there aren't any bowel movements, and Marcella has normal bowel movements...but they're not ruling anything out right now.

They said it might be Hirschsprung's Disease. That's a disease where the nerves in the large intestine that initiate parastalsis (ganglion cells) are not present in parts of the large intestine. That leads to constipation and other complications. But Marcella isn't constipated, so it's probably not Hirschsprung's Disease, but they're not going to rule it out yet. In order to determine if it is, they have to go in and obtain a cell sample with a biopsy. I don't think it'll come down to this. Her blood was a bit anemic, and her hematocrit was a bit low (is that the same thing? I think so), which is a sign of Hirschsprung's. But there't the whole constipation issue that really throws a wrench into this.

Another possibility is Marcella is allergic to milk, Kanien's breast milk included That would be the easiest thing...they're waiting for the tests on that to come back, I think. Then we'd just have to feed her $20.00 shots of formula and she'd be fine. They also said she might have an abnormally high amount of bacteria in her intestines that is eating all of the sugars and turning them to gas...which would explain her failure to thrive and her distention.

As you can see, they're still pretty stumped on what's going on. Hopefully we'll find out some more tomorrow. I'll update this again if I have time. I'm currently dealing with full-time work, full-time student, Grandma Noni, Marcella in the hospital, Grizzlie's hockey games (I help run a camera and the Jumbo Tron there...but don't have another game for a week or so), and the constant humming in my brain that is just a part of being a genius. Also, either Kanien or I will post some pictures of Marcella in the hospital either tonight or tomorrow night, so keep checking back. We really appreciate the phone calls and prayers and other support you guys are giving us. We love you and think of you often. We're especially grateful that Dad put us on the right track early, and had the sense to send us to see Doctor Kramer. And we're grateful that Doctor Kramer sent us to Primary Children's, so we can get this resolved.

Until next time, this is Reading Rainbow....

Butterfly in the sky......
I can fly twice as high....
Take a look,
It's in a book,
On Reading Rainbow....Reading Raiiiiinbowwwwww!!!!

(please don't ask why that came into my head just now)

Marcella in the Hospital

Hi all...Marcella is now at Primary Children's hospital. We'll be there until they find out why she can't gain weight. They didn't do any tests today, so we still don't have much information about her condition. She's still as happy as ever, and smiles at the nurses and doctors. I had a fun chat with a 3rd year medical student about his pediatrics rotation and how things are going...he seemed really nice. One nurse told us that the best case scenario would see us leaving on Wednesday, and worst-case scenario we'll be there until December 7th....but that's just tentative as well. Soo....if you want to get a hold of us, here are the phone numbers:

801-588-4000, room #4329

Well...That's about all I can post right now...We were there for about 7 hours before they actually got us a room...no one really knew what to do with us when we got there...but things are better now. Neither of us is too excited about staying there for this long, but we're glad that there are resources like this for us. If we live during the Days of '47, she'd probably just be labeled as a "sickly child" or something like that..."weak constitution...doesn't eat well" and that would be the end of it. I hope you are all doing well...and your support is much appreciated.

Love you all!!

Jon

Where's Marcella?

Marcella and I had a fun time doing the piles of Laundry. How can you ever keep up? I swear that when you dirty one thing you put three things in the hamper just so you will never be caught up. Thanks for all your prayers and I will let all of you know how it goes today. I love you!

Some Thanksgiving Pictures

Here are some more Thanksgiving pictures. Enjoy!!