The Anderson Family

Giggles

2012-02-05T21:44:00.002-07:00

Kamiah 4 months old. Mariska 4 years old. Mariska has the magic touch and always has Kamiah laughing. or crying haha.

Her package from Make-A-Wish

Shes so excited to see what it will open. She's tried to unlock all our doors but hasn't found the right one yet. =)

Our little girls

Sam and I met 7 years ago on the 21st of January and we're married 6 months and one day later! Time sure goes fast.

Make-A-Wish!!

2012-02-05T00:56:00.000-07:00

I'm going to try harder and blog more, I look back and think I sure missed posting about some pretty cool things and then forget all about them.

Lets talk about the title. Sam and I planned to wait on doing Mariska's wish cause she was so young we really wanted her to remember. *back when she was 2.5 when she got her heart!" then after talking and reading a friends blog and about their trip, I thought oh no! I had no idea there was a dead line on on a wish after your given a heart! 18months or so? well the first 5 months she wasn't allowed to do or go ANYwhere. Then it was summer, started having fun and BAM rejection back into the hospital we go. Then after another 4 months old steroids and go-no-where-do-nothing-have-no-fun-days where back. After that we Had Kamiah! and back into the keep those germs away gosh darn it!

So now has been pretty much the only stable time do really even have the option of it. Funny how crazy life is when you sit back and reflect.

We thought its time to do her wish before she misses it and doesn't get to spoiled by all the wonderful things Make-A-Wish can make happen. We started the process back at the end of November. Doctors signed the paper work in December then the call saying Mariska was going to be granted a wish in mid January, and the granters would call in about 3 weeks, maybe sooner since we live close to the valley. The day we got the call was SO awesome since we didn't know if she would really get one or not. turned into one of those Jumping up and down super excited times. =D

There was some confusion with make a wish, I've told you all we're buying a house??!?! well if not gosh darn it. We are moving! yay we're SO ready for a house and a yard. Back to MAW I gave them our address since I thought hey we'll might just move in that time... well they we're fast. And sent things to the new house we don't yet own... whoops. When are Realtor called us it was one of those I just want to stick my head into a hole moments. Ha! whoops Sorry to the sellers family.... I called MAW and we got things fixed they over nighted two things to us. The first was a little bit of paper work saying more info about MAW. The other was a package we didn't get until the next day since we we're gone to Dance class. We finally opened it and it was a cute little castle with a key and a paper telling what it was for.

Mariska Loves the key keeps packing it around all day long, its really cute. Shes dieing to know what it opens!

I got the call from her Granters that day we opened the paper work. We talked about a day to set up a visit and see what Mariska would wish for!. I asked if they wouldn't mind coming to our house, didn't really want to take the girls out into the cold if I could help it. We picked today since they work in the mornings and Sam works in the evenings for a while. Then the crazy phone tag started. The other wish granter was sick *just getting over a cold* and didn't want to get us sick. We tried to pick a different day but between us moving and the wish building being booked we decided to take our chances and just have them come today after all.

SO much fun. They came over just before 2. They gave Mariska some cute little toys and a stuffed bunny for both the girls. Mariska was so shy, so getting her to warm up after she had burned all her sillies out earlier that day was hard. She was pooped.

We have been asking her all week about what she wants to wish for, shes so silly. She wants to eat dinner with the princesses, "since we can do that anyway we changed it a little" into having the princesses give Her a makeover. She loves dressing up and getting all dolled up.

The thing that came to her mind first when she was being a goof ball was she wanted a Peanut butter bird! I have no idea where this kid comes from, hehe. I asked her "so you want a live bird covered in peanut butter? :S " " hmm no" " how about one made of chocolate that you can eat?" " hehe yeah"

And for the just in case she doesn't get the first wish she wanted to swim with the "darfins" dolphins * but has to be 6 to do that one too! gesh* I asked her so you want to get INTO the water with them so they can pull you right? "yep" "oh *scared look on her face* oh nOOO! that would be kind of scary" "me how about you can give one a kiss and pet them?" " Yeah!!"

The warm up get to know you games pretty much reminded her she wants to do all those other things and she wants to do them now. mixed with oh boy you have a cold hasn't been sleeping well and need a nap, Made her get bored pretty fast. Ha

One of the granters said let me see about the peanut butter birds. She has family who makes chocolates and asked them what they could do and if they could get it done by 5 that night so they could give it to Mariska! think they we're sure about it, but said yes!

So after we did all the paper work, man there's a lot of signing on a travel wish! and picking out the right photo of Mariska they left coming back later

They had made cute little chocolate covered peanut butter cream filled birds! They we're so cute! Mariska took a bite and said " this is perfect just what I was thinking!" Penny candy Chocolates said they thought they came out so cute the are going to sell them for valentines day! Mariska helped create something pretty darn cute. SO much fun.

So We are going to Disney World for a week the end of April is our plan! and to stay at Give kids the world. We asked how much we should save for spending money, they said that's the beauty of MAW its all payed for and they will give us a card for gas food, and all the other goodies. Sam and my jaws just dropped and we tried not to break down a cry. Its going to be an amazing trip. We cant wait! I'm a little afraid about the long flight with two little kids and Kamiah being so young. But its going to be a BLAST! Thank you SO much Make-A-Wish. We are so grateful.

Loving her new Shirt and Hat. shes been pointing to the Make-A-Wish logo on the box saying they are going to give her a wish all week. Now its really going to happen!

both annoyed with the flash.

Forgot to get a picture with both the wish granters. This is Kimberly

They will call them Love Birds

The great, fun, and silly pictures

2012-01-13T14:26:00.000-07:00

Kamiah few days old

Did tell her to smile. *sign* gotta love crazy faces. She so LOVES her sister.

Kamiah's blessing day. Boy was that dress slippery.

Visiting Sam's Grandma and Grandpa Anderson. They are so sweet!

Now I was just playing with my camera and you all get to watch me not knowing what I'm doing. hehe

Happiest baby ever! I mean it. Shes a little morning person, every time she sees us all day she'll smile. Shes starting to giggle too now. Love her a ton!

Used to have hair.. now working on her ever growing bald spot.

sledding in the front yard. =) finally have snow.

Misky of so many colors.

Checking out the other kids snow people.

Merry Chirstmas

2012-01-09T15:43:00.000-07:00

Merry Christmas everyone. Hope you had a wonderful and safe holiday.

Mariska was pretty excited for Santa to come to our house this year. We got home really late Christmas eve so I told her I'd leave milk and cookies out so she could go to sleep. She woke up at 6:30am running into our room yelling "he came HE came!!" Her little face was priceless. She was delighted Santa left a note with the empty cookie plate. She loved her toy puppy and her Tangled dress, We hurried and opened all our gifts before heading out to church at 9! Sam's big gift was an tablet, Mariska was her Udraw tablet for the Wii. Mine *Melynda* was a sweet camera and Kamiah gave her little sing-a-ma-jig doll a ton of smiles. We all couldn't be happier.

Having little kids on Christmas morning is AWESOME!

We also got another huge Christmas gift. We Signed the counter offer on a house! Yet We'll be done with Apartment life by February!!! A yard for the girls to play and no more smoke coming into our bedroom windows.

I was contacted a few months ago and asked if we would share Mariska's story in a book. Its been pretty neat to have a chance to do something like that for her to see. Its just a short 1000 words, I"ll post again when it comes out. =) It was hard opening my self up and going back to all the days and months in the hospital, felt like it took Sam and I forever to really get it done. Every time I sat down to write I was hit by how much gratitude we have to our Heavenly Father for letting her stay with us.

We keep thinking about her donors family, We pray for them, to make the holidays a little less empty and to keep peace in their hearts.

Here's a few Pictures, We're going to turn the blog into a book soon. I've noticed the pages with tons and tons of pictures are my favorite so this one is going to be picture heavy.

Christmas morning

missed a few, Mariska Christmas afternoon

Our Tree, don't think you can see it. We have a one red heart for Mariska's old and new heart

At my parents for a later Christmas

I can just see it... "she got what I wanted" ha good thing its just I'm hungry

Happy 4th Birthday Mariska!

2011-12-10T04:36:00.000-07:00

Happy Birthday Our Sweet Mariska. 4 years ago we got to take you home for the very first time. You have always shown us patience, joy, endurance, and love. We wondered when we first met you what you would make your life become. Little did we know a CHD road was already layed out before you. You take on all the challenges life has to give with a smile on your face. We never asked why you came to us because we know you picked us to be your parents.

You bring such a joy to our home, dancing, telling jokes, your little stories, your smile and love. We love you Mariska.

Welcome baby Kamiah!

2011-10-01T12:28:00.000-06:00

Mariska is so proud to have a little sister. =) Here's some pictures.

Kamiah Mae Anderson

6 lbs 9 oz

19 inches

Born at 8:20 am

September 28th 2011

Due date September 22nd. 6 days late planned to be induced at 7:15am on the 28. Told Kamiah it was her last chance to come into the world on her own. Very glad she came own her own. We weren't fully sure the due date was right but all the ulta sounds measured her dead on with the date we thought was right. So happy she came on her own with out drugs and force. She was trying to keep her head lifted off my chest and look around hours after birth and has amazing muscle tone very much so in her legs. Nursing is going well, It was a little rocky but we're working to get over it. We love you little Kamaih so happy to have you in our family.

Here's what 40 weeks looks like. 3 days over due.

Welcome to the world Kamiah.

Tiny feet

Contractions started at 12:30. Finally at 2:30 and 2mins apart we headed for the hospital. Taken at 9am. Here's what a long night will do to ya. :o)

Proud daddy and Grandpa.

smashed fresh from the birth canal face. hehe Stayed awake for 2 hours after birth looking around.

First time meeting.

Upset because the nurse took Kamiah from the room to the nursery before we moved to the recovery room. She did not like having her sister taken away.

Mariska loves being a sister.

Little sister shirt we brought her home in. First diaper change at home.

Checking things out.

10-1-2011. 3 days old. She looks so much like Mariska.

Mariska age 1 day. Before we knew about her half a heart and going to the NICU

6lbs 11oz

Mariska a few days old. Before norwood. Taken at PCMC PICU.

Yesterday Mariska morning I layed down while Kamiah slept to take a nap. Woke up to Kamiah crying and to see Mariska was in the pack-in-play bassinet with a few toys working on laying down with her sister. So cute but a little naughty.

Went to the pediatrician yesterday *48 hours old* since we left the hospital a little early they wanted to see her again. Since she had a little jaundice that was a working its way up. She looks fine. Her oxygen levels are 97 and 99. She a healthy little girl. Mariska again was so worried they would hurt her. We talked about what would happen to Kamiah when she was born that she would have to get pokes in her legs just like she did as a baby. Mariska said she will hold her sisters hand so she doesn't get scared.

She blows us away with the amount of compassion she has for others. Always making sure others are happy. Sam Told her his shoulder hurt one day a few days later shes asking him if it feels better now. Most of us don't even remember little things like that, little alone check to make sure things are fine. She's such a sweet heart.

Rejection Free!!

2011-09-16T09:41:00.000-06:00

Mariska went into the cath lab Monday around 1 she was done and out by 2:10. She had a hard time going in, they let me stay just until they put the mask on. Poor thing was trying to be brave but was scared out of her mind.     She didn't ever ask for food, water twice but I told her why she couldn't and she seemed ok with the reply. Grandma came with me, we both on the other hand we're starving! haha shes my hero!!

The Cath lab showed the pressures in her heart are lower then the last two biopsy's shes had. Transplant came to see us when she was in the pacu. Said her BPM numbers we're 33 *around there I believe* in July they we're 140s last time in the 60s. This is just another way the body sometimes shows if its rejecting. They were very pleased with the number.

Her echo looks back to her normal again also. Since her cath was so late we didn't find out about the biopsy until the next morning. I told the team to call me before 9 so I knew what to do on meds.   Shes not rejecting anymore! C1 D1 50 AMR 0. Someday I'll under stand what that really means. They said its as perfect as it can be.

Talk about a huge weight taken off our shoulders! Didn't want to think about another month of rejection and a new baby with all the doctor visits. It about broke me to think about it. Prayers really are heard.

No baby news yet. Shes still cookin. Sam texts me once or twice a day asking if shes coming yet. Hes just a teeny tiny bit excited and is having a hard time waiting. My due date is the 22nd. I'm 39 weeks.  I keep thinking she'll come on Sunday, but only time will see. My doctor asked how long I wanted to go and when I want to be induced. Told her lets see what next week brings, under 41 weeks sounds good to me

Biopsy at 12..

2011-09-12T08:25:00.000-06:00

Asking for prayers for Mariska today. She goes into the cath lab for another biopsy. We're praying we finally have a handle on her rejection this time. She is nothing but energy still. =) Its all fine and dandy but its wearing us out! I started to call her the energizer bunnys' charging pad. Oh to have her energy.

I'm 38 weeks pregnant and due in 10 days. YAY for baby sisters. So want her to not be in rejection, I miss my non marshmallow little girly. She is very excited to be a big sister. She'll run up to my belly kiss her sister smile and run back and play. Mariska is one of the money caring people I have ever met.

We went camping the first week of September at downata hot springs in Idaho. They have a huge volleyball sand pit all the kids from the camp ground go and play in. She noticed some of the kids didn't have toys, so she grabbed all of hers walked over to each kid in the 3 groups and let them use one of hers. Then she would walk around making sure everyone was happy and had a toy. Even telling the others who we're throwing sand at the other little kids to stop and play nice. This kid was a born leader. Shes 3 remind ya and everyone listens to her. The 10 year olds just smile look at their moms like am I really following a little kid? She also since being on steroids is super gassy! We laugh about it, but its shocking she can give her uncles a run for their money hahaha at least hers don't stink. We love her chipmunk laugh and her never ending smiles.

Oh and lets not forget shes put on nearly 8lbs over the summer. Amazing when we have fought for every sinkin ounce all of her life. Atleast some of it will go away.

We are praying for her little Heart friend Kylie. Shes had her fontan at the start of the summer and now needs a new heart. Her family could use the prayers and comfort.

Blogs? lost??! say it isnt so..

2011-08-25T13:25:00.000-06:00

When we lost the domain name to Mariska's site.. * made it .com over the .blogspot.com* guess someone bought it? Weird. When I changed it back to blogspot so everyone could view the site again. All our blog buddies links are gone! Everyone! I'm sad. If you follow us mind dropping a comment with your site. Family, friends, heart buddies.

=) I'm gonna start over! if you think I should be following someone drop me a link to theirs too, It would be most helpful.

Thanks a Ton!

Heart is lookin' good!

2011-08-25T13:21:00.000-06:00

Went to clinic today. Have to say getting there for 7am echo, 8:30-9 labs. Then 10 for clinic made for a super long day. Atleast we had time to grab breakfast. Heres what she had to eat... Ate my moms pancake, half of her grits *think its in a two cup bowl* Half her donut, a few grapes, two strawberries, and 1/3 a bottle of juice. Good thing we all dont eat like that every morning! We got to see our little friend Kylie and her mom. Mariska and her we're so cute sitting there visiting and playing.

Mariska's echo looked good, back to normal. =D! We have been praying and praying it would. Summer is no fun if you can go and do anything. boo hoo hoo. Its been a hard week on me, Think all the stress and with the baby coming in 4 weeks. or 29 days. hehe Is finally getting to me.

We even have the paper for the tapering off her steroids!! Still stuck in a Go-no-where, see-no-one status. But freedom is in the clearing up ahead. I can amost taste it.

Next werek she goes back for clinic to make sure things are hunky dory. The on the 8th or around it she will need another cath. To check and make sure the rejection is gone.

This dose of meds for her has been making us crazy! Shes always been really happy... ok if you have seen her she bounces off the walls and wants nothing but to talk and talk or make you laugh. No breaks. Its fun for a while.. but burns out pretty fast. Shes been pretty moody for the past week. The Dont look at me, just do what I say and even if I dont say it make sure you do it right. Grumpy but still super silly.

Heres a recap of last night...

Mariska didnt want to eat much of her dinner. So we saw this one coming.

Mariska asking dad if she can have something to eat, so they are looking in the freezer and fridge. Sam Looks at me and asks she she can have a hot pocket.

Me "no"
Mariska " i"m still hungry.. can I have one of those" *hotpocket* Working on her crying face..
me " no, those are for lunches "
Mariska while grabbing her chest/neck.. working on tiers "but my heart is getting sick", falling to the ground, I really need one of those."
Me "you can have apple sauce or carrots"
Mariska "NOo its getting sicker! I have to have one...
Me giving her a look that still says I dont think so
Mariska "I cant eat"
me " Then you cant have one of those if you cant eat can you?..
Sam holds up a block of cheese
Me "How about some cheese?"
Mariska getting up from laying on the floor.. "mmmm ok, dad will you cut me some?
like magic no more crying or gator tears flowing.
Shes SO much drama then normal, cant wait until shes off the steroids. Shes such a turkey!

Rejection still going on...

2011-08-16T10:03:00.000-06:00

Mariska had a Heart cath yesterday morning to find out if her little body is still rejecting her heart. She was first case, makes it easy on keeping her tummy empty but not so easy to get out of the house at 5. Yesterday feels like a blur, Sam and I both didnt sleep well between the stress and the scary lighting storm.

Mariska was scared the night before. We talked with her for over an hour listening to her fears and giving her comfort. Her biggest worry was mommy why did they take off my panties! *last time they entered the leg artery and the neck* Poor kid, At only 3 she is so modest.

We took her down to the cath lab, she cried but still went to the nurse. When we went down to talk to the doctor the nurse said she was super brave. Asked for a tissue wiped her nose, layed down covered her eyes and said she was ready. Moments like those break my heart to see her having to be brave. She didn't have any trouble waking up, she was up drinking water and juice ready to get out of there. And very happy they left her pants on. They tell us it will get easier.. I'm sure with time it will.

We found out her chamber pressures inside her heart are higher then her last cath, but still with in the normal range. *numbers went up by 4 in almost all 4 chambers* They did an echo while she was there also. Her echo also shows her valve is a little worst.. but also still in the normal range. Little changes like those pretty much mean rejection.

We went down stairs to talk to the transplant team and find out what Dr. E had to say. Mariska's prograf level was low again! after being stable for 2 weeks. They bumped up her meds again. .9mls x twice a day. Hard to think less then two months ago she was on .4mls . blows my mind. We needed to wait for the biopsy to come back to find out if it was indeed rejection still. I didnt want to ask, but finally did. What is the next step to treat her rejection. Praying it wasn't going to be head to the CICU for plasmapheresis or ivig. The first one still gives me chills and nightmares, Its a beast to put it lightly. Told her if it was that I was going to break down right then and there. She said no, and if she needed it she'd be crying also. They said the changes came when she hit the half way mark on the tapper off her steroids, so it would be likely to go back there and hold.

They called a few hours after we got home. Home what a wonderful word. Said she was still in rejection, forgot if it was mild or moderate -forgot which it was a very long day. Said to bump her pedisone up to 1.6mls twice a day.

She has been putting on a lot of weight. checked in at the hospital at 15.5kgs. two months ago she was 13.2kgs. Shes our little fluffy marshmallow. To think 7 months ago you could see almost every bone in her body. Sure has come a long way.

Now we sit and wait praying the rejection goes away. Its hard not to miss doing normal things, going places like the store as a family, swimming, or church. It is draining, thinking about should we go to the park.. will there be someone sick? will she pick up something? Sometimes its easier to just stay away.
She has talked about going to Disney Land once a day for a good month, and is getting excited to go next year! She also cant wait to be a big sister. 5 more weeks and shes not the only child anymore.

Echo looks good. Day 4.

2011-07-21T14:30:00.000-06:00

Today has been a slower one. The transplant team has clinics on Thursdays so they are super busy. Mariska's Progaph is still low!! Shes getting .6ml and came in at .44mls That's a huge increase. Shes getting .7 tonight with labs on Sat and clinic on Tuesday and more labs. Her level was 6.4. Still below where they want us 8-10. Next year she'll have the target of 5-8 but thats two years post transplant. Sill kid. We are all waiting for her levels to jump sky high, but nothin. They keep asking if we filled her meds here, if we get her labs done here. Nothing has really changed other the she got sick a few weeks back. With a double ear infection. But no big changes.

Shes so done and wants to go home. As do Sam and I. Its hard being in the hospital never being left alone, becomes bothersome. Plan is to be discharged here in a few hours, hoping her meds will be ready for us when its time.

We had her echo just after lunch, They came to say it looks better. Wahoo!! When her body rejected her heart, which we think since her prograph level was so low, it attacks the heart valves. Her tricuspid went from mild to moderate.

We're looking at being on steroids for a month, with a fast taper off from them. That's what we're praying happens. Mariska has fallen in love with the place called Lagoon. She calls it her adventure rides. Hoping she gets to go a few more times before the summer is over. Who would have thought the kid who is scared at the play ground loves theme park rides. She is very excited about her little sister who is coming. Only 9 more weeks! We're super excited.

Thanks for all the prayers!

Post 200, Oy! And an update.

2011-07-20T15:10:00.000-06:00

Just when I thought everyone wouldn't remember us, They are proving me wrong. morning snack lady remembers us, The cleaning lady remembers. Cindy from parents resource remembers us. 3 nurses have stopped us to chat. Oh and cant forget our buddies with the IV team. Made a new friend. The garden lady, she let Mariska help water the flowers and borrow some sunscreen. =)

Mariska's Prograph is super low, STILL. They want her to be 8-10, Shes been around 6 for a few weeks. Last few times she was 4.5, 5.3, 5.6. Just slowly going up. Thursday we changed her dose from .45 to .5 Her level only went up .2! Few months ago if we moved it more then .01 She would go super high. Now we cant get her with in range. She'll be on .6 tonight. That's the highest. Shes also put on some weight. Over 31lbs now. The steroids have started to take effect, for the first two days she was a starving child who ate everything, was eating more then me. Last night shes starting to get the "round face" her meds make her a little chunky and makes her cheeks huge.

She tested positive for Herpies from the labs with her biopsy. *aka cold sores* Guess it showed as active and not something that has just been around in her body. So the test is to find out if it is an issue. At least that's what I think. Asked what the risks are, was told it can effect the liver and eyes, but if it was she would already be showing it. I'm praying it wont be a problem, more so since I think if it is she has to be on the vain eater meds to fight it. ugh.

Doctor E. just came in, Said we're still on target to go home tomorrow. She'll need an echo labs and her last dose of iv steriods. I need to find a time that works better for her on meds. With out risking if she wants to sleep in it doesnt cause troubles. I havent been so good at getting her to take them or giving them right at 12 hours apart. Something we will fix.

Gave her a new IV today. Got it on the first poke. yay!! only its her right hand so she cant color or eat very well. Made us feed her half her breakfast. Hard to wash hands with in iv too.

Thanks for the prayers and support. <3

Rejection.. One year ago to the date Mariska was given the gift of her new heart

2011-07-18T23:51:00.001-06:00

Dont want it to be true, would do anything for it not to be so.. Mariska little body is rejecting her heart. The good thing about rejection is its treatable. Shes back on steriods again a long with a handfull of meds that come with it. Good bye just two meds and hello 8?

She is in Cellular rejection level 4. With level 5 being the highest. Scary thing, this could have gone unnoticed for a while. Her body hasnt shown any signs of being affected. Counting our blessings we are able to get on top of this early and prevent any damage to her heart.

The Test they ran this time showed 130 rejection. For most people rejection happens at about 100. Last year when she rejected she was 2,500. Not fully sure what it means, just know its the way the body shows its being attacked.

Mariska did awesome today. Only in the Cath lab for an hour and half. Was scared in the recovery room but was calmed when she saw Sam or my self. Understood she had to lay flat for 4 hours! like I said shes amazing. They had two failed ivs one in each hand in the cath lab *iv didnt hit a vain or wasnt able to find one* We pulled her iv in her foot before we knew we had to stay. Then another failed on in her hand Finally found a vain in her left hand for her new IV steriods.

The game plan is to give her 6 treatments of mycofentale sp * just to sleepy to care* her iv steriod. They are every 12 hours so we should beable to go home thursday afternoon.

The effects are already showing. She is STARVING. I can understand now why parents of teens with transplants have to lock the fridge. Nothing is able to fill that hunger. Poor kid. Guess I'll make sure she gets lots and lots of vegies in, haha.

Thanks for the prayers. We find out if this treatment works in 1-2 weeks with another cath. Praying it stops it and we can start to get off meds again.

Cath lab

2011-07-18T05:00:00.000-06:00

I'll do a longer post later. Wanted to post Mariska goes to the Cath lab today for her first annual biopsy! Hard to believe last time last year what our lives looked like. Please keep her in your prayers that everything runs smoothly.

July 16th, First event with HopeKids

One year ago today!

Watching the door we'll use countless times the next year

Who doesnt love a good cut??... Yep it happened, She cut her own hair, atleast it worked out to be a bob. Other then the very very very short patch in the back. haha. Could have been worst, at her age I gave my self a mullet.. yep inch high from the ears forward. I was So in style. Feeling blessed Mariska didnt go that far.

What you cant see? the good 7 month baby bump. Mariska is gonna have a little sister in september! All looks healthy but I'll believe it when shes a month old in my arms still. Oh thank heavens for little girls. <3

Time for a picture or two.

2011-05-16T16:32:00.000-06:00

She wanted a picture of her silly potato head.

At the The Utah Renaissance Festival Couldnt help but to get a picture with some fairies.

One of the fairies gave her a little fairy charm. She was pretty excited.

Ridin that "pony"

Finally an awesome update worthy of a post.

2011-03-18T08:44:00.001-06:00

Mariska has had a little bit of a rocky few months. We played the game of will she gain weight or drop??! Not a game I like playing with a child. Rather it be me on Thanksgiving.

*Edit* Mariska doesnt need a cath until July her year mark!! Her Echos have all looked awesome
Mariska got to come OFF of her steroids last month. Now about 6 weeks ago. HUGE for news. She was doing really well off of them. But Her white blood count has been really low. 1-2 *they want her at the normal 5* Pretty scary seeing its the yucky cold and flu season. She did end up getting sick a few weeks ago. Not super sick just diarrhea for 10 days... yeah just. It made for some long nights and a joke for the potty training. Every time we try something like this moves us way back. She will be one day soon. I have hope.

She worked so hard to get to 27 lbs then to see her drop 2.2lbs in those 10 days was so heart breaking! She was still not really wanting to eat but just eating so she had enough energy to do what she wanted and nothing more.

After those 10 days She started eating I mean EATING again. eating like a teenage boy. haha Its awesome to hear the words I want more of *something* please. Or I"m still SOoooo hungry mommy what can I eat. It blew Sam and I away. Who changed my child over night?? Guess it was just those nasty cheek cubing drugs.   She went from two bites of what lets say pizza to eating 2 slices of a med. pizza. Still just watch her eat and thing WOW! Shes eating like a normal kid! and no feeding tubes. Hard not to say a little prayer of thanks in my heart.

I was fear full of her clinic visit Yesterday. Thinking ohh boy here we go. They will push the G-tube again cause shes lost some weight. ugh. She got on the scale and gained!!!! I was so happy I almost did a happy dance. 12.45kg Shes on the way back up. I'd better *knock on wood* ha I want this to stay.

She doesn't need to wear her mask anymore and we can finally sneak her into places that aren't very full. What something normal??

I'm a little over due for pictures, but thought I should get a post in before time slips again.   Mariska had a fun St. Patricks day. The leprechaun came while we we're away and made a HUGE mess in the kitchen. She didn't think it was very nice thing he did so she helped me clean it up.   The Other night while we we're getting ready to say pray. She said wait I need to say something. We look at her and she being the goof she is said " I am a robot I have to talk like this" something about the cows are making her to save them. We tried SO hard not to just roll on the floor laughing at her. Shes full of all kids of silly things.

We're praying for those in Japan. What a scary time. Your in our hearts.

Happy New Year.

2011-01-25T09:57:00.000-07:00

Phew we made it to the new year. Hard to believe all that has happened to our family this past year! We we're so blind sided about this time last year. They wanted to do a cath to see if Mariska could have her fontan or if we needed transplant.  Few months later we got the dreaded news. She needed a new heart the function and just so much leaking. then the real prayers started. Would she be able to get a match? Would we live at the hospital for endless months just waiting watching our little one slip away? She was so lucky to be healthy enought to be able to wait at home. But there we're countless times we almost weren't so lucky.

My last post I was beside my self. I'm better now. haha...   We did a feeding tube for Misky, that should be in still but shes been eating and doing well. giving it a test to see if it can just go away.

Misky's weight has been all over the place. her high was just over 30lbs and her low a month ago was just over 24lbs. Thats a HUGE drop. Shes on the climb back up.   Shes drinking Boost breeze and Kids essentials. Both have a nice 250 cals per 8 oz. Not sure how they taste, she doesnt seem to mind them to bad. I"m ok with it other then they are just loaded with sugar.

Mariska has almost stop the throwing up. Thinking it had more to do with the taste of the meds and then became a bad habit. At the peek we did the feeding tube she stopped eating for a few days. Nothing will stress a parent more then that.

Her energy level is back! Havent been able to say that for months on end. Shes dancing playing, and just in a better mood. Funny what a few extra cals will do.

Can you believe shes had her angle's heart for 6 months!? Such a blessing and answer to so many prayers.

Mariska on new years eve was done about 11 and wanted to go home. She we we're all in bed for the new year safe and warm.

Hope you all had a Merry Christmas and a Happy New Year.

Happy Birthday Pictures, Halloween, and Snow.

2010-12-06T14:45:00.000-07:00

Little miss bones.

Stopped at Daddy's work to say High while most the building was at lunch before their party. She was excited to see dad at work.

Shh Trick or Treating at Red Gear. Just Sams floor.

At PCMC That Pink pumpkin was her Favorite! She saw it when we walked in and ran to it squilling.

The horse that does have a name now. They voted.

Mariska Strawberry Shortcake Anderson

At Grandma and Grandpa Brownings Ward side walk trick or treat.

So scared of the monsters inside!

She bumped her nose.. thought it needed a bandaid.

Her Hidden Rainbow Cake. Cutting it open made Mariska cheer to see all 6 colors inside still there.

Opening gifts.

With Grandma Anderson. Her Abby Cadabby Party.

Making some music

Misky and Sam's Snowman. She took the nose out so she could eat it. Didnt like that it was now very hard so put it back.

Is it normal?

2010-12-01T18:33:00.001-07:00

those with a really weak tummies feel free not to read.   **

Hey Transplant buddies. How common is throwing up?!   Is it just a reaction to coming off the steroids or is it something more. Once in a while I can see, but Misky hasnt really been her since the ER visit and the pneumatosis/c-diff battle.

She throws up once if we're lucky every other day. Given her history I"m a mess. Shes LOST a lot of weight. Looking like she'll end the year weighting less then this time last year!.   Feels which I know not to be true. But inside feels like its all being brushed off.

Two weeks ago we met with the nutritionist. She said to cut out all water in her diet. Add cream to anything and everything. Make her go 2 hours between eating. In hopes she'll gain weight.

We also talked about giving her a pill to make her hungry. Its not that shes not eating or doesnt really want to. Its every time she eats a big meal for her * half a slice of pizza for instance* she doesnt keep it in.

Her high for weight has been 13.7kg shes now 11.5kg.... breaks my heart watching this happen to her. I dont pick her up under her arms in fear I might break her.

Will is pass I ask my self. Is it just something to do with the taper? does it have to do with all her past tummy things? is there a kink or blockage? will she be ok?

Shes still her cute self just not active almost at all. Feels like when she was going down hill waiting for her heart.

I'm asking those who are willing to fast for her on Sunday and to say a little prayer she'll start gaining again.

Miss Mariska is 3!

2010-11-17T23:49:00.000-07:00

Amazing she is 3! She turned 3 on the 14th. Had an awesome tiny, just the grandparents over Abby Cadabby Birthday Bash. She is such a little fighter. They have been 3 of the most stressful years of our lifes but they have also been the best and most worth while. We love our little girl with all our hearts. Happy Birthday my sweet heart!

*I'll post pictures soon*

Tomorrow it has been 4 months since Mariska was given a second chance at life and was gifted with a new Heart. The donor family will never be far from our minds. We pray for them and are over whelmed with their unselfishness to gift another life when they had to say good bye to their own. Someday we hope we'll know who they are and share our gratitude.

cath/biopsy number 6!

2010-11-17T23:42:00.000-07:00

The day before Same day surgery called and did all the pre paper work. Got a chuckle from some of the questions, havent been asked some of those in a very long time. The lady also asked me to list every med Mariska has been on for the past 30 days. Told her she was going to make me bust out the book. She laughed and said to bring it with us when we come in. They liked the printed med list we bought in with us. Love the small things that make everyone life better!

My mom *Grandma B* got to come with Misky and I for this cath. Helps having someone there with you. Thanks mom for all the help! <3 I never sleep well on nights before we walk into PCMC ever that night was no different. That trip we had with rejection made sure I would never again. Maybe with time I hope.

Mariska was on the grumpy side that morning, Next time we take her to the lab we'll give her something maybe after she picks a toy. She wasnt to happy with me leaving her there. Breaks your heart to hear your child crying after you and having to keep walking.

Her heart looks awesome and no signs of rejection!! Takes such a load off my shoulders when we get a good report.

No rejection also ment we could stop IVIG early!! cant say how happy I am about that. This months was going to happen at home. Which I was feeling uneasy about. Kind of like keeping the pain at the hospital and not having it come to the house.

Her docs didnt like the risk of doing IVIG again this month after some kids have had bad reactions to it. Mostly for the A blooded kids. *which she is!* there are to many A antibodies plasma in the mix wish can attack their own blood... shutting down other organs! yeah not want we want at all. Pretty scary to hear its happened to others.   She has had a really bad head ache about two days after each treatment. Last one took her almost a month to get back to her self. Think shes still feeling pretty crummy from it still.

Since her heart cath looked good and her echo looked the same also she got to come down on her steroids again. .4mls onces a day now. Cant wait until shes off this drug, and she can be back to her normal self.

Cant tell if its her meds that make her feel icky or if its something else like not being able to be around people being the social butterfly she is. She just hasnt been as happy. Kind of moody and unwilling to eat much. Sam says shes eating fine. Think I got used to her eating like a teenager and its messed up how much I think she should eat. Making things fun and changing it up so she'll eat it has been tricky.  Today she did eat squash and a bunch of noodles. And didnt throw up!

She is still throwing up now and then. Mostly in the evenings after meds. some of them just are just plain nasty. I want my happy willing to take her meds baby back. Anyone mind sending that back?

Tomorrow she has clinic. Also a bunch of labs. They forgot to get some durning her cath..... ... ... Yeah I know. I beg for finger pokes. Heart momma's anyone else not liking the new lab drawing team?.. They stress me out.  I'll stop there, lol you all know how I feel about that place. Just has to be done.

Heart Cath and Biopsy tomorrow.

2010-11-04T23:32:00.000-06:00

Mariska is doing really well. She stopped throwing up once a day for almost a week now. Changed to anti acid med. As long as she has something in her tummy she's fine and dandy. Over the moon that its not those bubbles again.

If you are willing, we would appreciate the prayers for Mariska and her docs tomorrow. Also for my self so I can remember everything said. Had a very bad migraine attack last night and just dealing with the after damage of a week long head ache. I will post when we know results. Borrowed a request from a friend to share also. I'll post it off and on all winter.

A FRIENDLY REQUEST
So here is our friendly request to our dear friends, neighbors and family. PLEASE, lets us know if you or your kiddos have been sick and will be having contact with Mariska. That way we can make a decision on whether we need to change our plans and stay home.
If you have spent time with her recently and end up getting sick, let us know as well. We understand that you may feel well one day and sick the next. This is in no way to make someone feel bad, but it helps give us an idea of what it could be if she does end up sick. For a regular kiddo, no biggie. But for Mariska this will save her multiple blood draws (and tears) as they run labs to figure out what type of illness she has. So think of it as doing Mariska a favor and Please just give us a heads up.
Also, if you happened to get the FLU MIST and will be in contact with Mariska please let us know so we can stay away for a couple weeks. We have received a letter from cardiology stating that because the Flu Mist is a LIVE vaccine it could be contagious to Mariska. Therefore, we are to stay away from those that have received the mist and ask those that will be in contact with her to get the SHOT instead.
Thanks for always being so so good about all of this. We hate asking this of others but we know of the major impact this could have on Mariska's health and in all honesty her life.

Halloween? is almost here

2010-10-28T17:07:00.000-06:00

I posted most of Mariska's pictures on my facebook page. Dont think I'll ever get them posted onto here. Feel free to look at them if you want.

A little update.   *its a bit out of order thrid time trying to write this*

Misky had a clinic visit today. Just the normal labs, echo and check up. Her heart Looks and sounds perfectly normal.   Mariska Has been throwing up once a day, I've been hoping its just her prograf which will make you sick if its to high. Which it is. 17 Her normal range is 10-14. So playing with that again. She has lost a bit of weight. 11.95kg. Before her ER visit she was 13.3kg. Not so good.   We're playing with a few other tummy meds to see which will work better for her and putting asprin on hold.
Her white blood count keeps dropping, which can be caused by two of her meds. which is a little scary seeing now thats all she has to protect her self from germs.
She had a little to much fun in the echo today. One of her medical staffs *forgot his title whoops* did her echo. She was singing the whole time. Ha shes silly. He told her he'd look for some candy to give to her when he was done. Forgot and came back she looks at him and says "trick or treat" must have bribed someone cause came back with a yummy likely to be someones personal stash of chocolate bars. Silly girl.

Shes doing awesome other then the throwing up once between 3-6pm for a few days. Her glucose was a bit low but think all the candy she had today fixed that issue.

Dr. E is a little worried about doing IVIG again with Mariska. Shes A blood type and there has been some issues with the ivig having A antibodies. = liver kidney and other organ failure of things go bad!! She'd turn yellow and be one sick kid. So after her cath on the 5th we will see if its worth doing.   If we did do them we have been setting things up with home health care to do them at home. Really hoping she doesnt need the last two.   She had a really bad migraine with the last two and maybe even 3 treatments which is on the list of a reaction so we'll see.

Starting to become angry with the people in the lab where she has her blood drawn... Tired of them blowing me off when I ask for IV team. blah. Guess I'll just have to be a mom there and just be forward.

Heres some pre Halloween pictures. We're planning to trick or treat at the hospital tomorrow, but heres the ones from today. =D

In clinic today they added to the system as Mariska "Strawberry Shortcake" Anderson. I love it. I didnt know this until the end. I was wondering Why so many kept poking there heads in to see her costume. =)

Mariska "Srawberry Shortcake" Anderson

Going to have family pictures done. Woohoo!!

Happy days at home.

2010-10-21T13:03:00.001-06:00

Mariska loves being home. Able to run an play all day. Shes doing very well. Every now and then her little tummy hurts or gets upset but those are rare days. I still take her to PCMC twice a week for labs to be done, and once for clinics. Today she had a check-up. Her echo looks good, they are happy with it. Starting to think about changing to once every two weeks! but not until after her cath in two weeks. They said they'll have Mariska withdrawls. hehe. I'm sure we'll have the same but about them. But will be a much welcomed change.

We're planning to have her IVIG treatments at home! I'm kind of unsure about that. Kind of like keeping the painful things away from home.. but will be nice not having to stay in a small room down at the hospital. Her last treatment she was really good until about Saturday *treatment was on Thursday* She had horrible migraines you could just tell she was in a lot of pain by looking at her eyes. Poor thing. Those never come alone always joined with throwing up, Shes still not back to her normal self since then. Looking forward to our last treatment in December.

She came down on her steroids today again. Now at 2gm .66mls. *down .14ml since the last time* We've kind of grown fond of those little chunky steroid cheeks.

She sure talks a lot more now with this new heart. Picking up more crazy words every day. We can sit and chat about something. has made play time a blast.

Thanks for all the prayers and following us. *We have family photos taken last night so some goodies will be posted soon*

Biopsy # 5

2010-09-30T13:08:00.000-06:00

Mariska's biopsy on Thursday came back great! Zero rejection =) Wahoo!!! We took off last weekend on friday to go camping in the Unitas. The weather couldnt have been better, Dare say maybe even to warm? hehe Misky got to caught 3 fish. She was so excited all week about going camping, and while camping every day she would say "we're camping, i love camping" Sam even got me to fly fish. Must say think I'll be starting a new hobby next year.

Today we had clinic at PCMC. Her echo looks great. A week or so ago we dropped half of her meds off the list, she was not doing so hot, throwing up everytime she had meds/foods. We've added them all back now she shes doing well. My poor carpet on the other hand took a hit. We're winging her off from her steroids. prednisone. She has been on .8, and by tomorrow she'll be on .4ml/1.2mg. She'll stay there for a few weeks until the next biopsy then she'll start the wing to be off them!.

Mariska's prograf levels have been almost a guessing game. They are with in range now but still bounce around, depends on how much she eats and if she has runny diapers. *sigh* She'll be off of Vancomycin by monday. not going to miss that bad boy, its made a lot of trouble.

Mariska's energy has slowly come back. Shes almost to her bouncy self again, Shes also eating more and its being digested pretty well. For a while had me very worried.

We're milking this warm fall weather to go and do some fun summery activities, Notinthg like the outdoors.

Thanks to everyone in our ward and friends who have brought dinner in for us. Dont notice how ran down you are until you dont have to fix a meal. Thanks for all the thoughts and prayers.

Tummy Pains.

2010-09-21T01:20:00.000-06:00

Mariska and I both had a crummy night for sleep last night. Shes trying to get used to not being waken up every 2 hours and getting the feel for home again. On top of her tummy pain shes still having. And the tons of dirty diapers we have been changing. Thought we'd wait until all this passes to really potty train her, but shes so ready. To day we had Clinics *will go into that more in a bit* She was doing the potty dance waiting for her blood draw. Took her to her first potty trip out side of home. Think she liked it, didnt want me to go with her until she needed help getting on. haha. At home she wanted to go potty and pooped twice on the pottty. Guess it wasnt to bad with her diarrhea. Poor thing. Is still having it a few times a day. Top that off with the strongest antibiotic I've ever seen doesnt help anything.

Sam and I really feel her tummy pain is all thanks to Vancomycin 2.6mLs three times a day for a week, 2 times a day for a week and then 1once a day for a week. Its a HUGE fight getting this bad boy down and keeping it there, doesnt matter what we flavor it with. Think the stress is hitting me again, Its hard starting over with a new drug.

This morning we had a clinic visit. ECHO, labs and check-up. Her echo looks normal =) yay! so her moppiness isnt because of that! Her blood labs I'm a bit upset about.. She has been poked so many times that no one is to poke her with out the words IV Team under their name!. So the lady today "thinks she has one"... had to keep my cool. Wish they would listen to me, and just stick with the finger poke Dr. E said was fine to do. Blah, makes me so frustrated not being listened to.

Dr. E and the team are worried about all the throwing up and redoing meds *about every med!* So they hacked her meds list to only the Must have meds. to see if that helps her tummy. Shes not disgusting food well or wanting to eat a whole lot. But shes getting enough to drink.

Sam and I have felt so out of the loop with the GI team. We have seem them.. who ever "them" are... 3 times since transplant or rather they have seem Misky. The last one I needed a break and took my first afternoon out side the hospital with out her, and missed them. To us it feels they are pumping her full of unneeded meds and because of that its causing other issues.. like belly pain, and C-diff!

Thought I should just vent and get it all out. there you have it. We are so blessed to have all the trained doctors to watch over Mariska, do whats best for her and what has saved her life. Things will smooth out and emotions will also. Just have to keep faith.

Two days ago Was Mariska's 2nd month angel heart anniversary. I think of the donor family often and they are never far from our hearts, we are so grateful for their sacrifice.

Bubbles bubbles pop pop pop!

2010-09-17T19:17:00.000-06:00

Mariska's "Bubbles" are gone! Finally got a clean normal KUB *tummy xray* Wahoo!!!

Posted a Video for Pennies by the Inch. Mariska got to help say part of a song. She was so cute and super excited to do her part. "Make it shine"

Primary Penny Song

2010-09-17T19:15:00.000-06:00

Juice and water. Ohh yeah!

2010-09-15T12:18:00.000-06:00

So her KUB (tummy x-ray) has improved and almost gone. Dr. E came in this morning to say we're going to hold off and wait for a day or two before we start drinking clears... then looked at her PICC line and changed her mind. Its looking bruised, and she just doesnt like how its looking. SO shes getting it pulled once we get her TPN *meal in a bag as we like to say* winged off. Sometime this afternoon that will happen. Then she'll get an IV for one of her heart meds. Things are movin now.

Thanks for all the prayers, =)

Mom mommy. can I have some?

2010-09-13T10:45:00.000-06:00

Yep we're still at the hospital. PCMC. as much as we love it here home would be wonderful. Mariska's pneumatosis is slowly going away. I think it looked almost gone in todays x-ray, but we'll know for sure when the doctors stop by to talk about it.

We still cant get Mariska's Prograf levels right. One day its 10 the next day its 22 then 7 and back to 24. Yesterdays was 26! Almost double where we want her. Funny thing is I think shes back on what she was before all this started. The C-diff seems a little unclear how long it takes to go away. Shes on day 7 out of 10 on the antibiotics for it. might not take that home. The doctors said its just a matter of time before someone gets it being in the hospital for so long. I think she had it before we went home last time. Just to many dirty diapers in a day.

yesterday night she had blood in one of her iv lines. Her lipids that always run. I'm still not sure what really happened it was about 3am. I woke to the nurse changing her beding. thinking maybe she just didnt clamp it or there was something drawing. I looked at her clothing her pillow case was covered, and the whole side of her jammies. Makes me worry how much she lost. I have to fight them to try and not waste her blood. Her blood levels are a bit lower but not low enought to worry about. Gesh. The nurse didnt tell the other nurse or right down how much she might have lost. It was a surprise to the morning nurse when I asked how much. nice huh. Most of the nurses have been awesome.

Mariska keeps saying her tummy is all better and asking in a whisper if she can have just a tiny bit of what we sneak to eat. shes to cute, Its sad not being able to give her just that tiny bit. But her spirits are still high, and shes always giggling or smiling. =0)

Almost a week.

2010-09-10T22:22:00.000-06:00

Whoops the blog slipped my mind this week. Sorry to those of ya where this is the solo place for updates. Mariska is doing well. Her energy is all back and then some. We did some cultures and she has C-Diff along with the Pneumatosis. yeah.. Its a bacteria with spores thats not killed by wonderful avgard *hand sanitizers* Lots and lots of hand washing. Before that we came in for Mariska vomiting every 20mins for almost 4 hours.

Her pneumatosis is slowly going away. Her transplant card said we could go home as soon as sunday! I'm not keeping that hope alive. Feels so close. She still needs a clean x-ray before she can start foods again. And the GI team wants to keep a eye on her while she does start.. Have a few words for the GI team that I never see! but guess things are going ok with out feeling like they are in the picture.

Being here for another week after almost a week and a half at home is such a let down. And Costly living here.

We all came down with food poisoning.. or Salmonella. All goes back to Friday night.. Misky and I thought it would be fun to make sugar cookies. Well you have to eat some before... Misky cracked an egg getting to the counter or so I thought. Guess the egg had a crack and she must have made it bigger. We had to run out for something, so I didnt get the counter all sparkling clean. We came home put a watermelon there for a sec. moved it to somewhere else after putting food away. Misky got sick sat, I got sick monday night, Sam and I ate the watermelon monday just after I had gotten sick. It was a huge watermelon so we cut it in half giving it to Sam's parents so it didnt go to waste. Yep I poisoned my in-laws! ha they are better now, but I really do feel bad.

Mariska Loves watching TinkerBell and My little pony's. She also lives her pillow pet Eeyore. Or Ho whore as she calls it. Yeah classy! LOL

She did a little part for a video being made by Pennies by the Inch! Shes a star. Well for a few seconds atleast. She thought it was pretty awesome, She gets to say "Make it Shine" in their theme song. It should come out on Wednesday.

Looking forward to the IHH heart walk tomorrow. Super bummed not being able to take misky, but I really want to go so I'm dragging Sam.

Back to the Hospital

2010-09-04T14:48:00.004-06:00

So Saturday morning around 3 am mariska starting vomiting about ever 20 min for a good 3 hours so went down to primaries through the ER, Because we needed to do blood draw down there in the morning.
They did an X-ray and Found that she has pnumetosis again. Doctors are kind of baffeled and not sure what is causing it. So misky was admitted last night into CSU again and it looks like it may be anywhere from 3 to 21 days here at the hosptial again. So we got a one weekend at home at least maybe nextime we go home it can be longer than that.

Thanks For all your Prayers and support

Home sweet home.

2010-08-28T14:38:00.000-06:00

We've been home since the 24th =) After picking up Mariska's Grocery bag filled with all different kinds of meds for her -yeah there's really that many! We waited for the discharge paper work and to be retaught what signs of rejection are and checked off her 12 meds.

This is what we came home on:
Prograf x2day,
Cellcept x3day,
Orapred x2day,
Septra 3xweek,
Valcyte x2day,
Nystatin x4day,
Asprin .5day,
Lasix x2day,
Diuril x1day,
Aldactone x1day,
Prevacid x1day,
Magnesuim 2tablets day,
multi vitamin.

Its just a tiny bit overwhelming.

Mariska is doing awesome! She begs to go to the park and play. If there are other kids she has to wear her mask which brings over a group of them to ask how come she has to wear it. =) She very good at leaving it on and knows when it can come off. Shes picked up a little more attitude now, HAHA just beware she's always known how to get what she wants so that hasnt changed. Shes also so much happier. She used to have such a cute girly laugh now its a belly laugh at everything! silly girl its still cute. Just with more soul.

We had her first post transplant out patient visit on thursday. makes for a long morning leaving the house at 6. She did super. Didnt cry after the blood draw.. something kind of wrong with that! but I'm very proud of her for being so brave. Awesome durning the echo but thats normal. Had a bif of the wiggles for the blood pressure, what can I say shes a tease.

She no longer needed to be on the Diuril, =) we're down to 21-23 dose a day. Progress.

She stopped taking naps back in January since getting her heart she wants them again, guess that was a sign? Over tired and wouldnt or just couldnt sleep. Nice to put her down at a normal time at night in HER bed.

We still have clinic visits twice a week at PCMC, She'll also have IVIG once a month. Shame the treatments cant get started before 1pm. Makes for a long long day. But I'll take a long visit day then moving back inside.

Thanks for all the prayers, its helped us stay calm and extra positive. <3

Its a 4 letter word..

2010-08-23T10:19:00.000-06:00

They said it!! H O M E. Thats right HOME tomorrow!! Eeep. so exciting. Mariska is going to miss all the stickers, toys, and crazy amounts of paint glitter and glue. I'll miss the breakfast cart lady, but I'm sure my body wont miss all the donuts I've eaten while living here. hehe But its so worth it to be home.

We are getting discharged tomorrow afternoon, after all the meds have been filled and I have learned when and what to give around the clock. Oy going to be a lot of work but we've knowingly signed up for that.

I took a picture of the computer screen that read No Pneumatosis present. It was so worthy of a photo.

Thanks for all the Prayers said for our family. The cute letters and comments.

18 days of NPO

2010-08-22T16:05:00.000-06:00

Haven't gotten around to blogging. Mariska has been keeping us pretty busy. =)!

Mariska was put on to a liquid diet, then yesterday afternoon she was moved to a low fiber diet. Still working on what is on that list. So far we've just done soft foods.

Mariska is LOVING having food again. She still wants chicken and pizza but we thought she needs to wait a bit for those.

Today she got to ride her toy car all the way down stairs to x-ray. Sam went with her today, think she was pretty excited. The x-ray tech gave her a bouncy ball and some styling glasses.

Her pneumatosis must be going down cause the doctors haven't said much about it. Just keep saying we're letting her eat!!

Asked Dr. E when she thinks we'll go home, just for a time line- need to know how many outfits have Sam wash and bring back. She teased me about me not wanting to know and just make it a surprise, haha. Asked her if it would be in two weeks she smiled and said I'd like to send her home this week while shes the head card for the week. *knock on wood!* Today was Sunday number 6!! really hoping we're not here for week 7.

Want to make sure I thank the people who have visited or bought us snacks and random things to make our stay better. <3 We love you and thanks SO much.

Run legs RUN.

2010-08-19T15:52:00.000-06:00

Today has been filled with new information! Started the morning with labs *love that PICC line in the mornings*. Echo was next, Misky got her first real blanket today. Love the simple joys. After echo we headed off to x-ray for her KUB *tummy x-ray* then back to the room for rounds.

Mariska and a different idea we came back then she wanted to go for a walk. Had to chase her down the hall with a mask. Silly girl was on the move. After about an hour, yes an hour of her walking around, its a miracle she has so much energy.

Came back for meds and rounds. The cards we're first. They reviewed her echo and x-ray. Said her x-ray looked BETTER!! Yippy! But is still not all the way gone yet. And also her Red blood cell count was low. 28. Should be around 35-45. 28 is the point where they go ahead with a transfusion.. yeah. She needs some more blood. She'll get it once it comes to the room. The cards are going to talk with the GI doctors again and see if she can at least start on a clear liquid diet!

Next was the transplant team. We are coming down on the steroids now. Shes at 4. This morning they went down to 3.7 and tonight it will be 3.0! seems like such a HUGE step forward. Once shes down to 2.8 she'll get the next heart biopsy onces shes been stable for 2 weeks on the level. Shes going to need IVIG every month for 6 months. The next one is due before the 3rd of September *cant believe it will be almost September!*

Mariska has been a BALL of energy today. Hard to keep up with the kid and pull her IV poll. Phew. She is so excited she has the energy to RUN, shes running everywhere. My friend came after 10mins she was ready to walk. We walked the halls on the 3rd floor elevator to elevator 3 times, then walked down to the 2nd floor did the same thing. And again on the first floor and the kid still wants to walk! What am I going to do with all this new energy!!?? Its awesome. Cant get her to wait so we can put some pants on, Shes speedy.

Just before we went walking one of the card docs came and said we have the green light to start a liquid DIET!!!! There we're cheers for that news. So excited I was almost crying.

Biopsy # 4 results

2010-08-16T16:59:00.000-06:00

What a day. If its ever a super smooth night its a rare one. Last night wasnt to bad, Mariska wasnt to much of a grump when they made her wake up this morning for her x-ray. Then off to the Cath Lab.

The resuts from her x-ray were so disappointing to hear. No change from the last one... We're back to this again.

Just got the results from the biopsy. Her pressures look good and NORMAL. yay. Shes over all is 0 rejection. No anti body rejection. 1C 1B I believe she said hard to hear Mariska was upset at the time. Just a very mild case but able to keep under control.

One of our Transplant docs did some digging looking for other cases like ours. She found 7. most took 16days to clear up and the longest was 21 days. Good to have a goal again.

Better go Mariska is washing her arms with bubble juice. haha. Thanks for the prayers, love and oh all the letters. =)

NPO day 14.

2010-08-15T22:39:00.000-06:00

Tomorrow we go down for biopsy number 4. Keep her in our prayers and close to your hearts for zero rejection to go with the wonderful echos shes been having.

We also will have another tummy x-ray done in the morning. This one has been such a test, just sitting around for 2 weeks telling her she cant snack or eat ANYTHING has been heart breaking. I'm praying tomorrow she can start eating foods again and her body was able to heal its self.

I'll post again tomorrow. Night

Things are movin!

2010-08-14T09:28:00.000-06:00

Should have posted this yesterday, but time went fast. Mariska had her KUB *tummy x-ray* yesterday marking day 10. Later that afternoon someone came and told me how it looks. The nurse before they came looked it up on the computer for me cause they didnt come until after 4. The computer results showed it hadnt gotten any worst and maybe better.

The Doctor had much better news!.. He said on the x-ray half of the pneumatosis was gone! Yes GONE! WAhooo! -Guess she just needed to finally have a dirty diaper again to get things moving.-

We'll check again on Monday. If its all gone we can start slowly feeling her foods again.

I'm so grateful for all the prayers that have been said for our family.

Still waiting..

2010-08-10T12:48:00.000-06:00

Dr. E came in this morning after we had Mariska's x-ray and her ECHO done. Said the ECHO still looks good, And theres still no change with her pneumatosis.

The GI doctors also came in and talked to me. Said there has still been no change, We're going to keep her NPO for a few more days. 10-14 days. We're going to stop doing daily x-rays, so she doesn't get a ton of radiation.
At the 10th day we'll do an xray and again at 14. If its still there no change the GI docs will talk to the infectious diseases center and go from there.

Not the news we want to hear. Keep her in your prayers so she can heal and we can go back home.

Yesterday we changed Mariska's PICC line. Its been leaking and kinking for a while. I got to watch them shoot dye into her and watch the screen. Pretty cool. Weirded me out when her x-ray head moved. LOL didnt think it would be a moving x-ray. Guess I should have learned a bit more before going into the room.
Her Vain was to small for the cath. It would flush just fine but when you go to draw it collapses the vain plugging the cath.
Glad she has a new one with two ports makes giving meds so much nicer with out all the beeping if she bends her arm.

Mariska is picking up more energy every day. Wanting to walk a little more. She was pretty happy after she came back from sedation. I walked into the room shes joking and teasing the nurse, Nice to see her more like her old self, the drug must have taken the edge off. Or maybe she just needed something for pain. Shes been off anything for pain for almost a week now. =)

CSU Children's Surgical Unit

2010-08-08T18:02:00.000-06:00

Yep we moved! now in 3080 chilling waiting for Mariska's pneumatosis to clear up so she can eat and we can go home.

Ran into Dr. E this morning. She said Mariska's ECHO today looked really good so they are going to start lowing her steroids medicine amounts. She also said she cant see the pneumatosis but took it to someone who looks at them all the time.. said its no change still, and maybe getting bigger. So we are starting her on another antibiotic hoping it cures the issue.

Really happy to have a window! yay for natural light again. =) Think misky is happy to get out of the room also. Now we're just waiting to go home.

Getting kicked out?

2010-08-07T12:08:00.000-06:00

We pulled the line out today! =) maybe tomorrow night will have less alarms going off, or I'll miss them so much and dream of them.

We also took off the bandage covering from her open heart surgery. Its healed up very nicely.

After the line was pulled we put in a new IV in her hand. Crossing my fingers we dont blow out or it doesnt fail at least for a few days.

Theres talk of sending us up to the step down unit today! From a heart stand point shes doing stellar. Wahoo. We'll move today depending on if theres a room upstairs for us or not. * The heart rooms are being taken over by all the other inpatients.* So it might be another night before we can get up there.

The only thing keeping us here now is her pneumatosis. Which might keep us here for days or weeks.. eek.

Mariska has been pretty happy today. Went on a walk willingly. Glad to see her get out of her room, had willing to get out of bed.

Shes keeping us laughing like always. Just a bit ago. She looked at Sam *daddy* and said *daddy's stinky, He needs to go to the bathroom" BAHahaha Her normal one I have to explain to about everyone is "Take her" or "Help her" . I told Sam one day to take her, please I need a break. So now she says it all the time when wanting to be held. hehe. Every day she surprises us when all she knows.
All the nurses treat her like shes 5 because she is so understanding. our nurse yesterday wasn't going to give her something unless she ask.. I mean shes two dont be so mean gesh. Its easy to forget shes still so young.

She is a such a miracle I dont know what we would do with out her and all the prayers to help keep her healthy.

Kicking "Napoleon" Out ta here!

2010-08-06T22:01:00.000-06:00

=-O its it really true?? We're stopping plasmapheresis.. or as we like to say plasma freeze. They could pull the line out today, but we're going to use it for some of her meds like IVIG and ganciclovir. Then we're pulling it tomorrow! It can be pulled once the blood thinner Heperin has been stopped for 4 hours. Some time tomorrow morning it will be taken out.

=) finally a step forward and not 6 back. *knock on wood ;)*

No more fighting with the stinky kinking tube. =)

Thanks for the cards Heres the address if you wanted to send a card.

Mariska Anderson
100N. Mario Capecchi Drive
Salt Lake City, UT 84113

Looking a little pale.

2010-08-06T13:07:00.000-06:00

Lets start off with Mariska's pnenmatosis is looking about the same... so that most likely means 5 more days of being NPO ( NO Food for you!) I've told Mariska the kitchen is broken and they cant cook. She seems to be ok with that response. At least for a little while. She hasnt said she hungry Thanks to the lunch in an IV and dont for get the fats. ;) She wanted a cupcake yesterday morning, durning her treatment she wanted Cheese. So just something to munch on.

Her ECHO looked the same also, a happy place to be right now.

Mariska and I had a pretty rocky night last night. went to bed late, 3am for me about 11 for her. Couldnt get her lines to stop kinking. Making all of the alarms scream at us. Atleast to did get to go back to sleep after 7am blood draws. x-rays, vitals, and more xrays. Shes doing pretty well happy playing, not being the huge tease like normal but I'll take it!

They are thinking about pulling her catheter line, forgot its name. We'll find out after we get labs back at 2. So we might get lucky and not have to do plasmapheresis anymore!. That line has given us so much trouble its crazy. If your giving meds threw it you almost have to hold it the whole time, if she moves the wrong way bends her arm to long the alarms go off. We're crossing our fingers we can get that puppy out.

Shes back on almost all IV meds... feels like 1 step forward 6 steps back. Guess that what little bumps mean. bleh I'm done with them.

Her red blood cell, Hematocrit, is really low.. not shocking, We waste 10ccs of blood then pull what they need for labs, a few times a day. Not forgetting the blood she lost while on the plasmapheresis. Later today they will give her so more blood. Ready for her not to be so pale any more. Funny I've never seen her this shade kind of fun. Used to be more blueish.

She just had a sponge bath and is teasing with the nurse sticking out there tongue out. haha theres my baby.

What day is it? how long has it been?

2010-08-05T18:06:00.000-06:00

Oh thats right.. 19 days at PCMC. phew days are all blurred together now! Mariska perked up a little last night. Sams parents came to visit think she really needed her goofy grandpa to play and make her smile! She's been in a pretty good mood all day. Gets mad when I leave, but she'll live.

Mariska's Echo looked a little better from yesterday, Yay forgot if I"ve said that, but its worth repeating over. Her x-rays looked about the same today, we'll do another around 6-8 to check again.

Her plasma freeze today went a lot better. Theres a kink in her catheter line.. yeah not awesome. with some pressures it worked fine. Something will have to change with that for next time.

Mariska made biopuddy. Its pretty awesome. paint glue and magic water. really helped me became my lil stress ball. hehe.

My brother graduate's from the air force boot camp tomorrow! We love you Tyler and are so proud.

Thanks for the love and prayers. Misky could still use more post cards or letters.

Bubbles?

2010-08-04T12:31:00.000-06:00

Mariska's chest x-ray popped a red flag.. Looks like she has bubbles in between her intestines walls down by her colon.. Not common with heart transplant but seen in immunosuppressant kids. Did a 2nd x-ray of the area. The GI doctor is coming up some time to take a look. She cant eat or drink anything until this is resolved. Hoping we cought it early and that will only be a few days and not something longer.

I'm hoping its just gas, ;) cause shes been very gasses. not cute little tutes there like some guy in the family *not saying names, you all know who you are. hehe* tough her how.

Now her catheter for her plasmapheresis has bubbles too! I mean really?! The nurse got them all out and all is well. Phew.

Keep us in your prayers. All the news is becoming so frustrating, putting her back onto IV meds at least all the ones that can be given that way. Over all shes doing well.

cellular

2010-08-03T18:12:00.000-06:00

The test show its still cellular rejection! and not her antibodies. Putting her back on heavy steroids to help get the numbers back down. She'll have another cath monday, an echo tomorrow to see if it helps. Her plasmapheresis or "plasma freezes" as we call it. some time tonight, should have been at 3:30 and its now after 6, Guess they have had a busy day.

Her test results only half came back so Dr. E had to get on the labs case on why didnt they do the full pannel. Its done now.

Our nurse Tara last day is today. after almost 30 years with PCMC! Way to go! we'll miss her shes been fun to play with all day.

Now we just wait for a few days before anything happens. Thanks for the prayers. We're in 2507 if anyone wants to swing by and say hello.

Hello PICU--CICU

2010-08-02T12:20:00.001-06:00

Today was biopsy number 2. Had a great night last night, pushing 7 hours of no one coming to bug us sleeping. =D Last night they put something in her PICC line and let it sit hoping to get it to work better for blood draws, So far I think it worked.. . NPO, no food before her cath. *thats normal ;)* didn't feel like we starved her this time. since it was over the night where she couldn't eat. Off to the cath lab...

After the cath was over we went down to talk with the doctor who preformed her cath. As we waited Dr. Everitt and the team walked by, hard when you hear them saying oh shoot. Then saw us, whoops. Oddly good to know they think its crappy too and not just something normal.. Dr. E talked to us and reviewed her cath results. She said it looks worst then the last two. Her pressures are high. Was 12 on the last one and now 25. Huge change and now her tricuspis valve is not working right also...

They put in a catheter port on her left upper breast area and then moved us back down stairs to the Picu.

Now they are going to put her on Plasmapheresis. Its a lot like dialysis, using the same equipment. It will pull out her plasma and put in new plasma to hopefully pull out the antibodies that are attacking the heart.

The Plasmapheresis will last for about an hour. Once a day. Maybe every day or every other day depending on how her blood labs look.

I'll call this more then a speed bump, but at least we are able to treat it sooner then letting her body reject the heart. Keep us in your prayers. I know Heavenly Father is watching and comforting her, I can feel the prayers sent for our family and the support is a wonderful feeling.

Just another sunday..

2010-08-01T15:14:00.002-06:00

Mariska is doing well. The chest tube site is healing up wonderfully, Her echo showed her valve working better, Just a little fluid to get rid off her heart.

She'll have a cath tomorrow, shes first case. for Biopsy # 2 Pray for Zero rejection

The 3k a pop IVIG drug look like it did its job. =) We'll really know if it did tomorrow.

Misky's PICC line is still having trouble. Had to flush it 6 times to get any blood return... The plan is to get it out while she's in the cath lab. Dr. E doesn't think the convenes of it is worth the risk of infection, no do we.

Her nurse is Matt again. He has nicked named her CoCo. so funny. he'll call her coco she'll say no I'm not coco yOUR coco. Sillies. =)

Wagon rides.

eating her 2nd dinner that night. Yummy pizza.

working out while playing bingo

Lunch time with daddy.

Crazy water free shampoo, that stuff is Awesome. ;) going into the camping bag. hehe

Playing with grandma and pa Anderson.

Chucky cheeks.

Going to her ECHO. Check out the tiny wheelchair, She wasnt sure about riding by her self.

Making a hospital buddy. Playing doctor, putting bandaids, giving meds, and doing an IV. Think it helped her a little =)

Cabby her dolly has bandiads on her face.

her food gets cut up to TEENY tiny Little pieces.

Washing her hair with water.

Playing in the kid zone. They opened it before anyone else could come, and cleaned it the night before so it was nice and clean. Fun to get out of the room.

borrowing toys from the play room.

Cuddling with daddy this morning.

Wagon ride with all her buddies.

Update

2010-07-31T16:56:00.001-06:00

So Mariska went in for an Echo today and Dr Everitt said she is very pleased with everything and the Mitral valve isnt leaking anymore and there is only a little fluid around the heart..

Yay Misky.. Hopefully this means we get to go home soon.

Rejection

2010-07-29T13:46:00.000-06:00

So here I was thinking oh today will be easy *no pokes or crappy news* This morning they went to pull blood from Mariska's PICC line *yeah the one in her arm to her heart* they flushed the line then went to draw the blood got the waste blood changed tubes and then nothing, couldnt get anything from her line, grr so we flushed it again the nurse said maybe they will be ok with just using the "waste blood" looks like its been ok so far. The nurse said it might just be a flap at the bottem opens when you push something in but closes when you go to pull.. kind of like a one way door?.. we waited a while she came back a while later and it works fine now. Phew!

During the while I talked about above, Misky went down for an echo. The nurse asked if she wanted to ride in a wheelchair or in the wagon, she picked the wheelchair. She found a peds one. That was SO stinking small and cute. Think Misk was sad she didnt get to ride with me like before. But soon got over it.

Her echo was pretty fast about 15mins. Then we came back up to the room. Childlife popped in and Asked if we still wanted some tips to get misky to take her meds better. She'll come back later today, and make a hospital buddy doll with Misky =).

Emily one of the transplant cords. Called and wanted to come up and go over some discharge training with me and to set up a time. Ended up having Misky's echo fall into the middle of it so pushed it back to 2.

Then She came up to drop some news... ready? cause I'm still not. Maybe its not to bad and its just the straw that crushed the camels back.

She said Dr. E and another Doctor looked at Mariska's echo dont think its better or really worst. Which means the nasty immunosppressive steroids arent taking care of her Miral valve.. And that they are going to start her on a a new antibodies rejection ivig drug. She also said they know the donors antibodies now and can treat with the IVIG drug.

The IVIG drug is a very slow iv med with a lot of allergic reactions so they have to give her Tylenol and benadryl to prevent it from flaring up. And that we're not going home tomorrow.... looks like after Monday or Tuesday.. They want to do another biopsy to see if this drug helps her heart or not.

If you still wanted to send a card might as well. We could use the good vibes our way. They can mail them to our house if she's home when they come.

Thanks to all of you who have sent a card or comment =) nice to know others are following our story and for all the prayers. I'll try and post some pictures later. The steroids have made misky's cheeks look huge. thought she was just putting food into her mouth keep it like a chipmunk. HAHA Love those cheeks. <3

Biospy Results

2010-07-28T11:19:00.000-06:00

Dr. Everitt Called us last night and told us that the heart is only having a mild acute rejection which is a good sign. She just needs to be on an I.V. dosage of steroids for a few days and they set a goal to have mariska go home on Friday. Yeah... So hopefully all will go well and we can leave soon..

Oh Me Oh My. Please Please

2010-07-27T17:04:00.000-06:00

Dr. Everitt came and talked to us about what the leaking of the Mitral Valve means, She explained that it is some type of Rejection of the heart that is causing the Mitral Valve to leak and that we should hopefully find out what it is exactly Tonight when the biospy results come in.

The First Type of rejection that it could be is a cell rejection where the cells dont recognize the new heart tissue and reject the heart. This is what we hope is the case. This is what they think it is so they are doing more steroids to stop the cells from rejecting it which means probably wont be out of here at least until friday.

The Other Type of Rejection is an antibody rejection of the heart. Where the antibodies see it as a foreign object and attack it. If this happens to be the case the with have to put her on a machine that is kinda of like dialasis that will pull the antibodies out of the blood. We hope this isnt what is happening because she will have to go into the PICU again and for another week. Which will not be fun for any of us.

So we are saying oh please oh please be the Cell rejection and not the Antibody rejection.

Thank you all for again for your prayers and support

Chest tube site.

2010-07-27T16:05:00.000-06:00

Misky is out of the cath and back into the room and has some lunch. Her pressures are a little high, but are excitable for a newly transplanted heart. =) While she was in the Cath lab they did an echo and put in a PICC line-yay for no more pokes!

Bonnie Clay looked at her scar and her chest tube wound. Said her scare is healing wonderfully. she put some strips on her tube site to hold it until she came around later. Leaked and they came off. ugh.... she stopped by the room and put a bandage on which is almost ready to come off. Really hope its just the fluid around her heart that's finding a hole to leak out of, We ran into Dr. AK on the way to see Misky in the PACU. He said hes not to worried about the leaking, and basically said the same thing. Hes going to stop by and check to see what it needs done and if the Wound team needs to come and help it heal. looking like an open half an inch open wound now. =(

Shes on a new steroid drug, not new just back to the IV because her Mitral Valve is having some leaking issues, hoping they can get her blood pressures down a little to help. Also maybe a sign of rejection. we'll know more when the labs ...are done.

Busy morning.

Pictures. =)

2010-07-27T10:50:00.000-06:00

Welcome to Misky's bubble.

Ready for a ride!

Her Piggy breakfast.

Her Poster!

Just starting her painting. Thanks Kids Crew.

Today. Playing with Daddy.

This is what I get for saying Misky give mommy a smile. hehe

Sounds like her Cath will happen around 11. Just takes a few hours. They have to go in from her leg, becuase she had some repairs done to the vains in her neck.

Her weight has been all over. checked in at 12.2. Onces we got to the floor she was 11.7. Few days she was 12.1. She should be packing on some weight with all the food she's been eating =)

# 1 heart biopsy

2010-07-27T10:17:00.000-06:00

Misky has her Cardiac Catheterization around 11:30-12. Keep her in your prayers and cross your fingers and toes there's zero rejection. Also that her chest tube site will stop oozing and heal the way it needs to.

Time for rounds. The pedi cards say they heard a low pitch sound... hmm guess we'll learn what that means after the cath? *bites nails*

Mariska is happy when shes not thinking about how badly she wants a drink of water. Tricky to keep someone happy when you cant feed them.

How many doctors can fit into Mariska's room. ;)

2010-07-26T14:26:00.000-06:00

Misky is still doing well. Think she misses a full good nights rest, as do her parents. Mariska is eating more day by day. Today I didnt think she was going to share any of her breakfast! She ate her bowl of fruit loops, then I ordered her french toast sausage, a plate of cut.. diced fruit and a blueberry muffin. She did share everything but the sausage and fruit loops. hehe. What is she doing to do when she comes home and its no longer a buffet of everything she likes.

Last night wasn't as bad as the few before it. Just had her nurse in and out all night waking her up for meds, vials, poor thing went to be very late. Shes making up for it now by taking a nice nap.

This morning she had her blood labs. Took them a while to find which overly poked hand would be best to add another poke. Once that was done she headed down to x-ray in the wheelchair on my lap. Think she enjoyed the ride the most today. Then came back feel asleep for a 20mins. Time for meds and blood pressures, O2 stats and the rest to be checked. Visited with Dr. Laura stopped buy and talked to us. She said we're just hanging out until she has her Cath on weds to check and see if cmv is really a risk or just a saftey step.

We changed some of her meds around. I'll remember the names better when I see the labels more often. Shes off of zantc and on something else like it. Silly drug should help settle her tummy but it just makes her well you know empty it. Shes also only on one IV med now. Just the one to treat cmv. Shes on a better time schedule now. No more 2 or 4 am meds. YAY!

She had an echo today. It looks good still a little bit of fluid and one of her valves looks like it is having some leaking.. we'll learn more about that on the cath.

The pedi cards came by.. all erm 6 was it? then followed by her transplant team. I was getting nervous seeing all those people standing out side! about 9 with the team. It was very overwhelming to say the least. Dr. Everitt is back from vacation now, so we got to see her again. She shes concerned about the fluid so we increased her lasix. She also said the CATH will be tomorrow.

And the word HOME maybe weds! back on friday for clinics or home on Thursday and back for clinics on monday. Just depends on what the biopsy shows. time to bite nails.

Misky is still fighting taking her meds. some of them are down right nasty so I cant blame her, but its something she has to take.

Thanks for all the support!

Oxygen Stats, and picture heavy.

2010-07-26T00:01:00.000-06:00

Lost track of the days after 4Happy Birthday Sam. He had his party in the rainbow cafe. Misky and I had cake later. haha they bought him a "I am Sam" bag. Just in case he forgets who hes is. ;)

Day 4First time Daddy got to hold our baby after surgery.bad pic, making her get up and walk. She wasnt to happy about it,Pfew the reward was to ride in the wagon around. Playing with puppies in her bed. After her last chest tube came out. She wanted to walk. Think she just wanted the rest of Sams donut, hehe.Feeling up to playing. Her with all her babies. =) Dr. K wishes he had that many toys as a kids. Misky was pretty excited to see her "Meko" Being spoiled Playing with HaileyAfter all the failed pokes. Warming up her hands and feet with hot packs. She didnt want to take the one off her hand cause it would get cold. Being silly taking pictures.

Last night we winged her all the way off of Oxygen.! She no longer has a leash. Might miss that thing, always came in handy when I went to see which room she ended up stopping to play. Her O2 stats stay around 99. Such a beautiful number.

After Mariska got the middle and last chest tube out not even 20mins later she said " I want to walk" That thing made it hard for her to do anything really normal like taking a deep breath.

Misky was pretty happy most of today, until she wanted to take a nap and it was time for vitals. She made me laugh all of yesterday and today. Everyone who'd come into the room and not hurt her she would say "Thank you"

This morning wasnt the best. Forgot to add I only want the IV team to pull her blood, so philbotimist came in to draw some labs... they have never ever! been able to get her vains or get lucky fishing around in her arms for them. So he thought he found a vain poke.. nothing, then starts the fishing.. nothing... goes to the other arm does the same thing, I had to tell him he has to stop or I'll loose it. good thing dinner was hours ago. blah. Then IV team came in and put a new IV in her foot.

Later the iv in her hand blew out and had to be removed, so we got lucky she had the one in her foot. =) yay.

The Surgeon's team is passing her to the cards. Which means shes stable enough to not need to be under Dr. Kaza's direct care. Awesome. He'll still check on her but shes not as high on the list =)

The new doctors that are following her now came by. Asked some questions for their records. Like did we know before she was born and all that good stuff. Dr. Laura said something that really peeked my interest. She said she was reading Mariska's charts and saw her donor heart said it is possibly has CMV but isnt for sure. She was going to check and make such which is it. If the heart does test positive for cmv she'll stay on IV antibiotics for 2 weeks -so just one more to go- crazy now my mind keeps playing with the idea of going home sooner pfft. silly me. only time will tell.

They are talking about doing a PICC line (IV from the middle of her arm to the top of her heart) if we're planning to be here longer then 6 days she'll have it done. It will save her arm from needing pokes every morning and the about every other day new IV line.

Everyone here keeps saying shes a really smart two year old, and understands a lot of whats happening to her. Shes started eating pretty well, now we need to work on getting her to take her meds by mouth better. Some of them are just plan nasty. She'll learn she has to take them, Pray its sooner then later with us.

Its nice seeing her so colorful, and my heart is filled with gratitude towards the donor family. Because they gave their child's heart my daughter will live a healthier live. Words can not express how we feel. We keep them in our prayers daily.

First night in he CSU

2010-07-24T11:16:00.000-06:00

OY! Forgot you dont really sleep on the 3rd floor, the bed is just for looks. Last night was just stat checks fixing the pluse ox so it reads right. Giving her meds iv meds then flushing the line. Had dreams about the beeps around the room. Poor misky didnt sleep so well either. About every hour there was something going on, like having a new baby again! Misky had chest x-rays this morning, then back to sleep for a while, then meds, Nurse change, IV team for blood draws and a new IV. Dr. Tanee (sp?) came to check on her.

After a few more hours, she got her Chest tube out! the one thats as big as my finger. Also took out the pacer wires. =)

Dr. T said the donor heart tested positive for CMV, So we might be here a few days longer then she'd need. To make sure she doesnt get it. Just something tokeep a look out on.

Her chest x-rays looked good. And now shes having an echo done to check on the fluid. She'll have a heart cath sometime next week for a biopsy to check for rejection. Keep your fingers crossed when that comes and pray or 0 rejection.

Misky heard a dog tag jingle and has been in a happy mood for a few hours now, =) really kicked in once the chest tube was out. Shes giggling, eating donuts, playing with toys and coloring. Nice to have a day where shes not a total grump. yay for smiles!

Fun having surpised medical staff saying she got her heart fast. =) Thanks for all the love and prayers.

We got a smile :)

2010-07-23T16:08:00.003-06:00

We were sent upstairs to the 3rd floor around 2:30 Yeah up to room 3079. At first mariska seemed a little scared being in a new place but she soon warmed up once the nurses left and we got the First Smile since she has had her new heart. She went back to her old self and wanted to read books and paint her fingernails and talk like she used to.. Yippy.

Although she is happy as soon any nurse or doctor comes in she immediatly goes quiet and gets scared, (For Good Reason). But overall she is doing really well. Earlier in the day we both held her for about 1 hour in a half and it seemed to perk her up a little. Dr Kaza said that she still has fluid around her heart but isnt really worried about it sense her old heart was so big it was just a way the body is filling in the excess space.

Thanks for all your continued support and prayers it helps so much.

Baby steps.

2010-07-23T11:28:00.000-06:00

Dr. Kaza comes around a few times a day. Kind of wonder when he sleeps. ;) He wants Misky to get up and out of bed 3 times a day. Last night was the first time she went for a wagon ride with the new heart, ha ha I know wait for it, I'll say that one a lot more. We had her walk from her bed to the door.. well the word for what we got her to do might not be called walking but keeping stiff legs and being pushed. Silly girl.

Today She got two thats 2! chest tubes out. WAHOO. Still has fluid behind the heart, Dr. K doesnt think that tube will really get it all but we are hopefull. Took her out for another ride. The cleaning guy came so we stayed out for a few more laps. Think it did her a lot of good.

She got both of the IV's out but got a new one in her other hand. at least she has the one off her ankle. Might hurt to bump walking.

SO the word Floor was said a few times today!! Waa really? moving to the step down unit??? not even tricked with maybe tomorrow? =) They have to get the discharge papers, so maybe around 1, and a jokingly in 12 hours. Aw thats better sounds more like it. **Edit We're waiting for someone up stairs to go home so we can move up**

Mariska isnt such a grumpy goone. She ate a little breakfast, which is a lot more then we could say yesterday. Speaking of yesterday. Told my mom if she wants to see her she has to bring a cupcake to get in, she asks how come, cause misky and I want one. Misky enjoyed a few blobs of the lemon frosting I enjoyed the rest. =) thats the first thing she'd wanted to eat all day. Thought it might hit the spot.

Found out a few days ago we have family here in the CICU. Crazy huh! Turns out Sams grandma's brothers granddaughter has a baby here also. I stop by now and then to visit. Shes got tons of dark hair, and is about 5 months younger then Misky.

Thanks for the letters. =) Thoughts and prayers. <3 We had visitors last night just when I thought there'd be none. so many in fact the transplant team called Sam to make sure everyone wore masks and washed their hands with hot soapy water just before entering the room. Feel loved. Those of you that wanna come just make sure your not sick or have been around anyone who has. Just a small cold could kill her. Not something I'd take lightly mind you. But dont let that stop ya if your well and want to visit. =)

Hugs

Discomfort

2010-07-22T17:08:00.000-06:00

Hmm Posting the same things over and over are just getting boring. :P

Now for an update. They took our her AR line *artery line in her wrist* YAY!! This morning during shift change. Is down to just two IVs. on her in ankle and the other on her left hand. Pacer wires, for just in case, oxygen tube, Three chest tubes and some band aids.

Misky is still a bit of a grumpy monster. Ate a breakfast drink this morning, For lunch she had a popcial yum yum. Oh and 2 or 3 cheetos. She got mad when I tried making her eat a chicken nugget. *sigh* She'll come around and want to eat again. Soon I hope.

Her Heart is working wonderfully. But she still has a lot of fluid around her heart (guess that should be normal givin all the new space, things need to get moved around in there) So they are leaving the chest tubes in until tomorrow.. yeah I know the word tomorrow again... this is tomorrows-tomorrow. Guess not the right one. hope tomorrow will be the day they come out. She had another ECHO today. =) Got to see what a 4 chamber heart looks like. Yeah it was pretty dang exciting. The tech said she'd give me a copy of her new heart and old heart on a CD. Super excited. Will be neat to see them side by side. She still has a lot of fluid in there but not as much as yesterday. =) they bumped up her lasix *just a diuretics) Hopefully that will dry her up so the chest tubes can come out tomorrow. Keep her in your prayers.

Sam got to hold her this afternoon! So jealous. My turn will come I'm sure. Shes having a hard time coming off of morphine and over to just Tylenol. Tylenol doesnt do more then take the edge, and morphine puts her to sleep drops her heart rate makes her ich, but takes the pain. soon we'll find the balance. oh shes away time to hold her =)!!

AR lines are outta hear!

2010-07-21T17:01:00.000-06:00

Mariska is doing well. Kind of a why did you do this to me grump. =) Shes looking more pink every where, not just a pink but she glows! Her skin looks so beautiful.

Dr. Kaza came by when the Nurse practitioner didnt want to pull her AR lines to hard. Pulled them right out. He stripped her chest tube. *Helped clean the tube and make a vacuum* enough blood came out so they are going to leave them in until tomorrow.

Her ECHO this morning looked good all but some fluild behind her heart. Which is another reason the chest tubes are staying in.

Today is Sam's birthday! Happy Birthday babe we love you. <3 <3 <3

When we came this morning she was asking for us. =( and was sad, Poor dear. In a few days I might need some one to keep her company so We can leave to eat and what not. Just no sickies.

Breaths of air.

2010-07-20T17:29:00.000-06:00

Talked of today being the day she comes off the ventilator. My sister and family came down to the hospital today, Visited then went and ate. Almost took her off when we planned to leave but decided she was to a sleep. The nurse took a break then came back while we we're gone. Forgot to give us a call when it happened must have missed passing it on. oh well. When we got back she'd had the breathing tube out for 45mins. They pulled it at 2pm. Shes been doing great. Seems a lot more comfortable now that its gone. YAY.

Shes working on getting the pain meds and sedation meds gone slowly. Thinking the chest tubes will go sometime tomorrow.

Mariska can start to drink clear liquids later this evening. After shes hit the 6 hour mark of breathing on her own.
Things are moving right along.
Loves.

Pictures. Her old heart and the first day in recovery.

2010-07-20T13:22:00.000-06:00

Misky and daddy Sunday morning. =) Just walked into the hospital.

Waiting room. Misky is all checked into the PICU and in the OR. My grandparents had there 60th anniversary on saturday.

There it is. It should be the size of a golf ball and it the size baseball so enlarged rubbery and flabby. Should be a harder and structed. Its the size of an adult heart. Its stringy inside. Amazing thats whats been keeping her alive

All the burned spots are from all the collaterals. You can see inside her heart better now. Above the hole theres two smaller holes. The one on the right is the Atrium, the one on the left thats Teeny Tiny! is her Aorta. Should be the size of a pencil but is the size of a noodle.

Matt, anesthesiologist Said when they saw her heart it looked like a wet paper bag. They'd touch her heart it would go all crazy. Its one very sick little enlarged heart.

Getting a chest x-ray. The cart out side is all the gowns, masks, gloves for the medical staff to keep on if they touch her to keep the gems out. The towers on the floor net to the tech are for the chest tubes drainage.

shes a little puffy but not to bad.

Her stats!! 95!!!! Had to fight back tears when I saw that. She used to stat 69 for a low 85 high on room air. AMAZING!

Her and all the meds.

12 hours or so after post op. perfect

Her heart rate dropped to 110 so they had the pacer on for a few hours last night.

her hands and feet are a little puffy.

Jessi my niece brought her some super cute hair clips. Misky has to wake up more to see what else =)

My little girl.

Working on PEEP

2010-07-20T11:51:00.000-06:00

Today they started a few other immunosuppressants. Added a feeding tube for one of the meds :o/ The Nurse said when she gets the breathing tube out she'll take that one out also.

Mariska is hanging in there. Shes not trying to sit up and remove things any more. She was a stinker yesterday. Told her she can go home when everything comes off. Whoops once we left she started trying to pull things.

They turned up the PEEP (pressure inside the lungs) to try and stop some of the bleeding. Her heart had started sending feelers you can say to the lungs in search of more oxygen for the heart. Had no idea the heart could do something like that.! So they had to cauterize all the vains to the lungs, Turning up the peep is like holding pressure on a cut helps stop or slow it down. Clear as mud? good.

Now the blood has slowed down and shes not moving and trying to cough as much. Looking to get that removed with one of the 3 chest tubes.

The pumps are drugs are all slowly being removed. Thanks for all the comments here and on facebook. Also thanks for the emails to the hospital.

The next post will be pictures!

Hearts

2010-07-19T22:58:00.000-06:00

We took a few pictures of her old heart Whats the vote??

Wanna see it? Vote yes or no ;) I"ll add a poll to the side..

Send a letter, mail a hug

2010-07-19T19:27:00.001-06:00

Sorry for not posting for SO long. Something was up with the laptop... user error ;) and then couldnt get blogspot to work at the hospital. I"ll have sam give an update on all of todays events.

A few friends have asked how they can send a letter or post card. You just send it to the hospital and they will get it to her. Heres the address.

Mariska Anderson

100N. Mario Capecchi Drive
Salt Lake City, UT 84113

I was talking with the social worker about what to have others do when they want to help, Most of the time I'm just not sure what I need help with. But I thought this would be good for misky to look back on and see all the love and prayers from all of her Fans. =)

Shes doing well, going to try loosing the breathing tube tomorrow instead of today. She has some un needed vains in her lungs .Collaterals. So they cauterised them and now shes having a little bit of bleeding. Shes been trying to sit up! silly thing. So they gave her some more of the gooood stuff to help her stay asleep so she can heal.

Update # 3 Yaaaa

2010-07-18T23:30:00.003-06:00

Cardiologist came out at 11:20 and said the heart is in Mariksa and the heart is working Great it will be about an hour more for them to close the chest.

Yippy...

Thank you for all your Prayers.

Love Sam & Melynda

update 2

2010-07-18T21:01:00.002-06:00

Just got an update. Shes going on the bypass machine now. Waiting for the heart to get to the hospital.

Melynda

Updates From the Start

2010-07-18T19:12:00.003-06:00

Update # 1

7:00 p.m. 2 1/2 hours after starting. The nurse just called and said they just finished put the all the lines in and sedating her and they just started the incision. They are not sure how long it will be from here yet.. we'll keep it updated

The Call!

2010-07-18T18:10:00.000-06:00

The madness has slowed down enough for me to get a post out.We got the call from transplant that they have a perfect matched heart for misky!! <3 Amazing, So grateful to the donors family what a wonderful and painful thing for a parent to do. We'll always be grateful for today for this news.

The call came at 8:30 we hurried got up, ready and out the door. Checked into the PICU at Primary Childrens in Salt Lake. Waited for a bed. talked to the attending physicians, met her nurse Laura. Talked to the nurse she had a few weeks ago she was surprised to see us back so soon. =) The transplant team was also surprised she was getting a heart so fast. Status 2 normal wait is 150-180 days. Shes only been listed for 35days. Truly a miracle. We have been blessed. Thanks to all the prayers, fastings, blessings, and her name being in the Temples.

When we got here they let her eat something since she wasnt going in until 4ish. FruitLoops, she ate all of them. Wonder if she'll blame this all on the food and never eat them again. lol

Late both of Sams and my parents showed up. Gave her a blessing of healing. After watching a few movies she feel asleep and took a nice nap. woke up when Doctor Kasa came when she had just woke up and want to happy. He went over all the same things as last time. Talked to the anesthesiologist Matt about all the risks before Doctor Kasa came in. Took her chest x-ray then Matt walked Sam, Misky Tyson my brother and I down to the OR. Gave her some versaid (sp?) Which kicked in pretty fast. He was looking at her trying to get a smile when she busted out laughing with a huge ol' grin. Then went back to being grumpy while they walked away. At 4:37

Now we're sitting in the Same Day surgery waiting room ALL to our selfs. With Sams Parents, My parents, Tyson, my Grandparents Browings, and soon to be my dads brother and wife. My sister Aleatha, Steve, and Jessi. My sister Tanya, her husband and two kids are driving in the morning for Washington. Gonna be a long night. Surgery will be anywhere from 6-10 hours.
Keep the prayers coming. I'll update as the news comes every hour.

Missed the bullet?

2010-07-08T14:00:00.001-06:00

hmm lot to upday. Mostly fun things and the places we have been.. I'll save that for another time. Today we had a check-up at PCMC transplant team. They wanted to do another echo and some labs.

Misky was really good for her ECHO. Did ok on the first blood draw.. the 2nd one she wasnt happy she had to do it again! She came home with One bear and 11 stickers, and 5 sugar free suckers. Pays to be happy.

Echo looks the same... labs look the same... she hasnt gained any weight since March.. cant be listed as a 1B until she falls under the 10th% for her age. *6 more weeks not not gaining and she will* for now shes still listed as 2.

They *the transplant team* didnt feel good about admitting her today. Theres many new risks of being healthy sitting in a hospital with ill kids. For now she'll be at home. We'll talk to the on tues day if shes doing well/same then we go in the next week but if something changes then we see them in a week.

Feels like we may have missed a bullet but the bomb is about to drop. Oh I pray I'm wrong... So many things to worry about with this new adventure.

Shes doing well enough to be a hand full in the hospital but is slowly getting sicker. Have a question for heart families. What do you do about church?? They say not to go and risk betting her sick but we need to be refilled spiritually. What are the options? :S

Thanks for keeping up with our slow but wild ride. <3

The call

2010-06-27T08:25:00.002-06:00

Got the call/page from the transplant team yesterday around 4pm yesterday. They had a potential donor! a perfect match for her. <3 Sam was just getting home from fishing, Misky and I we're out shopping. This might be a watered down version so forgive me for the mess I'm about to write. ;)

Walked up to the PICU then down to bed 2506 around 5. Hooked Mariska to all the standered monitors. Pulsox, blood pressure, heart leads and an IV. She was super good. Laughed and played with the IV team it was pretty cute. She wasn't such a heart poke being on blood thinners might have helped there. Talked with most of the picu doctors, then waited for Michelle from transplant to come up and go over the last paper work for us to sign.

Then met with Dr. Kasa *the surgeon* He is such a pleasant person to talk with. He looked at her ECHO and said it gave him chest pain looking at it. ( she is very sick in the inside) He walked by the room, had Sam get me and told the nurse. Are you sure thats the right kid? Shocked at how well she looks and is very active. Not what he thought he'd see that based on her echo. Said shes the best Hypoplastic he has EVER seen! and ever has pink lips. =) That is what prayers from all over the world can do. Shes a miracle!
He went over the risks on surgery with us. Said she was 3rd on the list. He got number 2 to back down, they took the bait as he put it. lol. The 1st in line was Standford's little one. Just waiting to see if the size would be ok. Recovery time looks like 2 weeks in the hospital. (kind of shocking was planning for a month yay!) Dr. K went over pretty much everything.
My dad wanted to know if we could keep Mariska's old heart ( joked about keeping it over the fireplace or in the meat draw to make my mom crazy. haha love my dad.) He looked at my dad and said "I think you've had to much sun" Think that took the rest of the night to gather that was a no, you dont reallly wanna keep it/ yo crazy! lol at the time it felt like he was just changing the subject. ROFL. He did say how ever he would bring her heart in for us to see!

Around 10 they said the other team is taking the heart. All the doctors said they we're sorry for all the trouble and she didnt get it. Also thought it would be pretty amazing for a lv 2 and only being on the list for less then 3 weeks to get a heart that fast! Looks like 4th of July will not be viewed form the "house on the hill". We're doing ok with it all. Feels like maybe to ok with it. Wanted to go camping this weekend while we can. =)

Thanks for all the prayers!! I update more on facebook added a tag. Your more then welcomed to get more of my thoughts there.

Hugs Melynda and Family

Happy News.

2010-06-14T22:21:00.000-06:00

Had a check up at PCMC today. The team wanted to check her weight and see hows she's doing over all. Shes still on 1/2 liter of 02. -Which has made a world of a difference. Shes back to her happy bouncy giggly self. We met with Michelle and Emilee they checked her O2 stats76-80 better then the 69 last week. Checked her blood pressure and then off to the scale.

Shes gained 2 ounces in less then a week. She has been a nonstop eating machine!! Granted most of it has been breads and junk like chicken nuggets, fries, pizza donuts and a few CupCakes. Lets not forget how much everyone spoiled her this week =). Gave up on veggies this week just wanted her to gain some weight. Looks like it payed off. Now back to eating the green stuff.

They talked to Dr. Everett who was pleased with her numbers. Said they didn't want to admit her today.!! YaY!! Soo happy shes doing well enough to be at home. We'll go back on the 1st of July for her "in a month check-up"

Thanks for all the prayers for our family. <3

A heart momma friend of ours took our family photos this week. Thanks so much Lori!!

Listed Today.

2010-06-09T16:53:00.000-06:00

The Heart Transplant Team called. She's on the list =) Status 2.

Thanks for all the prayers <3 <3

Pictures. =)

2010-06-09T12:21:00.001-06:00

Mariska wearing the holter monitor and being silly.

Our day at Thanksgiving Point Farm Country. She thought the pony ride was Awesome!

Oh the new things that have come to stay.

2010-06-09T11:11:00.000-06:00

After the last visit to PCMC we thought we we're good on visits for a month or unless an angels heart.
Well thats not the case. Felt odd not to go there for a month! Seems we've been there every other day and if not there we're on the phones with the transplant team. Its going to fast I say...going so very fast, but maybe thats a good thing??

So we find out sometime Today where she is on the Transplant list. *bites nails all day*

Back to the no visits for a month. Well Dr. Everett and the others looked over her ECHOs and didnt like what they saw. Also looked at her blood draws. Her Red blood cells are high. Which means her body isnt getting enough oxygen and is trying to make up for it. *more work for her heart* So they called and said they want to put her on Oxygen. Any one wanna chase her around with a tube? lol its lots of fun some times!

They also said to come back in on Monday. *feels like I'm was just kicked* They want to weigh her again and check her red blood cells.... And if she hasnt gained anything or lost She will be admitted! Yes Admitted to PCMC. With IV drugs.. SO we'll be in the wonderful ICU. This is a pretty sure she'll be there on Monday.. and doesnt come home with out a new heart. This will put her to the top of the list. trying to think of it as a blessing.

Its all moving so fast its hard to take it all in. Yesterday was another extremely hard day for Sam and I. With lots of tears. Seems as though we never really understood just how sick our little ones heart truly was. We're in the dark no longer.

Hugs

Thanks for all the kind comments on facebook <3 Melynda

I'll post again later.

First meeting with the transplant team and new drug.

2010-06-03T23:05:00.002-06:00

Sam got a call today. He gets all the fun calls from doctors. It was Doctor Everett. Mariska's soon to be new transplant card. Saying they want Mariska on a new blood thinner called Lovenox. Because her heart function is so low that they are worried about blood clots.

So IHC home health care dropped off the goods and a nurse came around 8 to show us how to administer the new drug. Lovenox main side effect is bruising. This medication is given via shot. We and every 12 hours. The nurse came over taught us what is needed to do it. Then it was mommy's turn. Cant say I'm looking forward to sticking her twice a day. But its better to be on the safe side. It wasnt as bad as I thought, and I can and will do it. *huge pat on back *

This call was the icing on the cake. Sam and I both finally let out the stress this is bringing. Now off to the update from the never ending day

Yesterday. First up was check in, not painful at all. Chest x-rax Misky doesnt care for, but we think its just having to take her shirt off in front of others. ;) Then back to cardiology, Finally off to her ECHO. Mariska doesnt like to lay down but with the right bribe she'll do anything. this time was 3 suckers and a blanket. She layed still for the full 45-60mins. WAY TO GO!!! She did super!
Then waited to meet with the dietician. Not sure how to feel about that one. nice lady, but nothing like pin pointing everything she eats, and being told the good old your child needs to drink more and eat more do you starve her?? kind of feelings. But is a much softer way. Mariska has been around the 25% mark most of her life. =) But we want a bit more fluff on her you can say so she is on a high protein high fat diet. Wish I could help her out on that one. hehe. So lots of expensive milks, ton of butter on her toast and cream in anything I can hide it onto.
EKG/ECG was next. Along with the normal check up, Blood pressure/ O2 stats. The nurse was really cute and played with her making it a lot of fun. Nice when she doesnt know you so the chance you'll stab her is low.
Then the next few are kind of jumbled. Linzeys fill in errm forgot the name, came and talked insurance and cost with us... dun DUN DUNNN.... Mariska has full coverage with medicad. We're so thankful to all of us hard working tax payers. =D Anywho she had the numbers down to the dollar dare say penny if we looked close enough. And Yikes!! The ending number is around half a mil.. pfft its nothin. but really WOW. still rubbing my eyes on that one.
Dortor Everett was next. She is really nice. for some reason Sam and I both we're thinking a man, but nope shes a cute tiny lady with a heart of gold. She checked out misky she gave us the skinny/basics about everything. To many things to repeat so I'll touch them as time goes on.

Sam's dad came to take Mariska home, just as they got her into the car I had to call him and say hey guess what we need her back... forgot the blood draws. So off to the lab we go. yay for Patrick, he didnt do it but helped fill the 2nd tube. Hes our favorite. Only person who was able to get Misky's blood on the first poke.

Now she gets to go have fun.

Into the meeting room we go to talk with the pharmacy pharmacists peoples. She went over the different drugs want they do and risks with using them. The first few main drugs are to crash her immune system to help stop rejecton. Then theres 3 or 4 to help with each side effect of the main drugs. Told us the risks of her getting cancer because of some of the meds. One is a blood cancer. After transplant cancer errm something like unto that, and the other one is skin cancer so she'll have to keep her skin covered with some nice SPF, which we do anyway.

Then lunch at the rainbow cafe *cheers in the back ground*

Back to the meeting room to talk to a social worker who tries to find out all your families dirty mental history past. Ok so its not dirty but was interesting. my favorite question was how is your relationship "rock solid.. with a few bumps* HA I crack my self up when I'm sick.

Finally back to meet with Emily the transplant coordinator who has poked her head in here and there. To go over everything else that needed to be covered or answered. Didn't meet with the transplant surgeon but thats ok I'd rather see him when I'm not sick =)

After it all we took misky to get a monster ice cream from IceBreg's. Think we're still feeling the tummy aches from that one.

Shes not on the list as of just yet. Still some hoops and rings to jump threw. Dr. Everett is going to present her to IHC/all the transplant centers/doctors on Tuesday and then she'll be presented again to the good doctors at PCMC. We should know by Wednesday where she falls on the list (heres the break down A1 sickest of sickies, B1, 2, and then 7 on the list but cant get a heart sick or something else keeps days on the list but doesnt gain anymore while in that status)

Thanks again for all of your prayers and comments on the blog and on facebook. Its nice to know we're not alone and have support others.

2010-06-01T19:50:00.007-06:00

Here are some pictures =)

She loves taking pictures. =) Good job Misky.

6am in the check- in waiting room

Recovery

Daddy (Sam) is a fly Fisher. I felt the need to inform you all of this. =D

Another big day tomorrow..

2010-06-01T19:21:00.004-06:00

I've put off on making this post for much to long. Heres a fast update to get you all up to speed..

Mariska did Super on her cath. She was happy all that morning, playing with the hospital toys in the waiting rooms. When it was getting close to her turn they gave her a liquid sedation drug. That made her have the super giggles. We walked her back to the cath lab, handed her over to the staff. This time is wasn't as hard with her giggling and being silly.

We waited for about 2 and a half hours when the pager went off saying she was done. Talked to doctor Day on how the cath went. It went smooth. The leaking in her tricuspis *sp?* value he said was mild ( the last echo it was moderate/sever) YAY happy news. Dr. D said there's the a list of 10 things that have to be just right to have the Fontan, he counted 5.. but the cards worked it to get all 10!

He had to go in via the leg artery and in a vein on her neck ( we had forgotten I guess that they took a vessel from her to rebuild her aorta. ) to gain access to every part he needed to check. Said her lungs looked much better then most. Pretty exciting seeing how she had a partly paralyzed diapram after the norwood.

The nurses in the cath lab said she was so funny and wanted her to stay there all day and play with them. =) shes such a people person! <3

Now on our way to recovery. Hard to keep a 2 year old still and not bend there leg. That was a bit of a challenge. Lots of popsicle's ice and anything else she could find to keep her entertained she used it.

Dr. William's came by while in the recovery room (very glad he did, took off a few hours from needing to go down and wait in a room) said he wanted to talk With the board and see how everyone else felt. He presented her that Wednesday... and got back to us.

Now your up to speed. Doctor W called and said they feel TRANSPLANT would be the best thing for her.

Thank you to all of you how fasted and prayed for our family. It has brought so much needed comfort and peace to our minds. The past few weeks have been a roller coaster on emotions. Posting it here felt as tho it is so official. and I've been in half denial about it. Just thinking the word transplant brings a wave of emotions down.

We trust her doctors that this is the best thing for her.

Tomorrow we go and meet with the transplant team. She'll have an ECHO at 8 then she'll have some blood work done. She doesn't have to stay until 4pm with us, So Sam's dad is sweet enough to take her while we're in meetings. We're so blessed with such loving family and friends.

Please pray for her and us for all thats to come. also for misky and I to get over our nasty coughs.

Love Melynda, Sam and Misky Moo

Cardiac catheterization tomorrow.

2010-05-06T17:14:00.002-06:00

AKA heart cath. Boy oh boy the day is almost here. We've prayed fasted, and prayed a whole lot for things to go well tomorrow. The cath part in its self to me is the least of the worries. Its the news coming after it.

Pray for her that the news is good, and for the cath to go smoothly.
For those of you who have talked to me today, I must say I'm sorry for being such a nervous mess! =) haha

Her Cath is set for 7:30am. We'll be there by 6.

No slumber parties at PCMC for Misky tomorrow. =D yay. Just need to hang around for 4-6 hours after then we're home free. I'll update tomorrow again on how it went.

<3

Easter Fun!

2010-05-03T15:09:00.007-06:00

Growing baby watermelons. Planted them on Earth Day and here's how they look now.

Mariska so wants to go swimming. put on all the old swimming suits and walked around the house asking when it was time to "kick and kick in the water"

Car ride to Idaho. She needed a nap but didn't want one. Had to show off that bottom lip.

Life threw the eyes of Misky

Silly girl playing with the camera again.

Sitting with Grandma & Pa Anderson's Cat. She is the biggest animal lover in the world!

Sleepy after a wedding being silly for her grandparents.

Little miss I believe that is your zipper.

Easter morning. Yeah candy for breakfast wasn't the best way to start that day.

Easter Egg Hunt at the city park. Boy was it cold that day. At least the 2 feet of snow melted.

being the wonderful helper she is, returning the plastic eggs to be used again next year.

Easter egg hunt at Sam's parents house.

The Three youngest girls. They sure did get a ton of candy.

All the girls cousins.

Coloring eggs. She was so proud of her eggs, everyone who came over HAD to be shown her Pretty pretty's.

I'm so grateful for my wonderful families. We have been so blessed with people in our lives who truly love us and would do anything to help. It means the world.

Mariska has her Cath this Friday the 7th. We're planning to fast weds-Thurs. Anyone who would like is welcomed to join. This cath will tell us a lot. Will she be able to have the Fontan, or need a transplant. Its such a sickening thought going to the hospital for either of those. Mariska is in the Lords hands, I have faith no matter the out come she is taken care of. We'll need lots and lots of prayers on Friday. =)

Her new favorite movie is The Incredibles, haha I have no clue why. Silly girl. So full of life always giggling or making silly faces. She knows what she wants and is able to sweet talk her way into getting it. Every night she says her prayers I want to record what her sweet 2 year old words. We help her get started then she takes over with: Thank you for papa and Blix (my brothers huge dog) And the bite ( my parents dog bit her finger a few weeks back) and water and kick and kick. Then a few new things every time. Goofy. I've rambled on enough.

Hugs Melynda

Hope you enjoyed the pictures

March's Echo Brings heart cath.

2010-03-24T14:30:00.008-06:00

Having fun at the park. YAY for warmer days.

Weeeee playing with the bigger kids. she loved this thing.

At the Jazz game with Grandma! (DeNece my mom)

Walking around

Washing toys

Whoops didnt see her put him in.

Poor wet Elmo

She was so proud of her Duck feet.

put them on all by her self.

cooking dinner.. Think we'll order pizza today.

This is what we found after she played with the camera.

Mariska on Valentines day. =) The ballon was Elmo her love.

Mariska had another ECHO today. yeah 2 in 2 months. yikes!

This one she got to stay awake for. She didn't want to lay down, but they talked her into by giving her two suckers and a stuffed toy kitty with the help of bubbles. Gotta love the things you do to get a kid to told still.

On the way to the hospital misky got car sick... yeah if you could smell us while we were there I apologize. bleh. She told the echo tech how she got sick in the car and made it stinky, or so we gathered from her half jibber jabber.

After the echo we Met with Dr. W. He said her function hasn't in proved or really even changed. Which makes him very concerned. -not something one likes to hear for anyone- so we're looking at having a Heart Cath in 6-8 weeks. To see if shes improving or not. Her heart function is not the best so after the cath they will talk as see if she still a candidate for the Fontan (3rd heart surgery) or if a Heart transplant would be better...

That's right... Transplant.. please pray this can be put off for many many more years.

Took everything I had in me to keep the worry off my face. Its to early now to say whats to really come but what ever it is will come. Mariska's O2 stats were the highest they have been for a year! a beautiful 81. Shes still very active and has great color. We changed some meds and amounts, And hope to see improvement when the cath comes.

After the visit we had lunch at the Rainbow Cafe. That place sure has a soft place in my heart for lunch.

We have faith what comes we will be able to handle by turning to the Lord. We're very full of hope and love things will come out fine.

Love Melynda

The Living Planet Aquarium & and overdue echo report

2010-02-10T23:40:00.007-07:00

Adding some pictures to the blog! YAY

Mariska had her echo, I've forgotten how LONG and slow the time goes when your in the hospital. You know the drill, starve your child the night before you do anything. :) Mariska did well with that part. We headed to PCMC at 5am got there just as the heavens opened and dumped snow. At 7am the tech and a few others had gotten stuck in the traffic so we waited a while. Forgotten the sedation drug(s) that gave Mariska, Very happy this was done via IV she was out so much faster this time around.

Her heart hasn't enlarged any more which is awesome news! Shes still having mild regurgitation with her tricupus valve. Dr. W said this would cause for another Open heart surgery but where she needs her fontan done sometime next year it can wait and be done with that surgery. Counting our blessings with that news.

She went in with a cough.. the same one shes had off and on since Christmas! Cant wait for the spring and all the winter bugs to go away. Despite her mild cough they went a head with it. Finished the Echo and the dr's were not happy with something they saw so we moved her to have a 3D echo done. Moving a sedated person is not a good thing. She has always fight the drugs which made the move not so enjoyable. Got to the next room ended up giving her something else to help her stay asleep, and got the images they we're happy with.

Went up stairs to help her sleep off the drugs, which wasn't to fun with her fighting sleep. She finally fell asleep slept it off, Silly thing was giggling and saying Good-bye to everyone we passed on our way back to cardiology. Talked to Dr. W. ( Dr. P has found a job back east we will miss him) Decided to add her back on to one of her old meds Dig.

So very Grateful things went smoothly thank you for your thoughts and prayers!

We thought it was time to do something fun a last week on Sam's day off so we went to the living planet aquarium . Such an awesome place. The high lights we're watching an octopus eat its lunch and change colors, and touching sting rays.

Mariska in the coral community.

Mariska LOVED this frog.

Mariska and her daddy watching a show.

Asked her if she wanted to touch it and this is the look she gave us, HAHA. NOOo way momma!

I was brave and touched them! So soft and furry.

Mariska's new favorite thing is ELMO which she wants to watch 5 times a day. Shes such a dramatic little thing. Loves to fuss over everything, making sure they have spoons shares her toys, food and smiles. Loves to play baseball on our Wii and is pretty good for being 2. Speaking of 2 she is into everything... my make-up, peanut butter, makers, Loves putting it on her face and saying me Pretty pretty with a huge grin. Hard to get mad with that look.

<3>

CHD Awareness week is February 7th - 14th

2010-02-01T12:25:00.003-07:00

Beautiful CHD Awareness Week Poem

Somewhere...someplace... today...

A family is waiting to hear...

Is something wrong with their baby?

The answers aren't quite clear...

This family has entered an unwanted world...

And they just don't know what to expect...

Somewhere...someplace... today

They first heard the words: heart defect.

And how they hoped this was not true...

And thought... this cannot be...

I too... know just how this feels...

For one day...this was me.

Somewhere...someplace...today...

A man and a woman embrace...

Their baby is in surgery...

They long to see her face...

They haven't got to hold her yet...

Without...a cord or line...

They pace the room awaiting news...

And hope she'll be just fine.

Prayers fill this busy waiting room...

And mom and dad are scared...

Somewhere...someplace..today...

The tiniest hearts are repaired.

Somewhere...someplace...today...

A child's growing fast...

Smiling,laughing,thriving...

His mom thinks...can this last?

It's almost easy...to forget...

That anything is wrong...

Somewhere...someplace..today...

Her child seems so strong.

Somewhere...someplace... today...

A little boy fights...

just to live A father holds his tiny hand...

His love...all he can give...

The doctor's are all baffled...

They fear that he might die...

Somewhere...someplace...today...

A family says goodbye... Somewhere...someplace...each year..

More than 40,000 families will see...

What it means...when something's wrong...

They'll face a CHD.

Today...for just a moment...

Stop...remember...reflect...

Make time to tell someone you know...

"I've been changed by a heart defect".

Author - Stephanie Husted

Little tid bits.

2009-10-29T13:56:00.000-06:00

Thought I would do a short post while I add a new playlist to the blog and Mariska is down for a nap.

Misky's vobabulary is finally picking up! yay. Shes learning about a new word everyday. Pretty exciting. She Loves to help with the dishes. washing them fulling and empting the dishwasher. Shes such a good lil momma. She has a doll she's starting to pack with her all over the house and its sure to always be by her side at bed and nap time. She still a lil girly girly with her small sweet voice and movements. Dancing is her favorite thing to do. At home and church. Shes Loves prayer time. Folds her arms and cheers when its over. lol Always makes us laugh.

She got her flu shot a few weeks ago. We're on the fence about getting her the H1N1 Vac. She'll start getting the rsv synagis shots again here soon. Poor thing.

We have a date for her next sedated echo. January 19 is the date. praying that goes smoothly. Hits me how fast shes growing. I think at that date we'll talk more on a time frame for her next surgery (fontan) She will have it at 3 1/2 Becuase her cardi doesnt like them to have it later. =) Scary but also a piece of mind knowing about when.

Mariska is excited as are we about halloween this year. Shes going to be Raggedy Ann. She has a cute witch laugh a spooky Heeheeheeee and a silly ghost Boo. Took her to the pumpkin Patch on Sat. She thought it was pretty neat to pick her own. And HAD to hold some of the hay from the hay ride. lol

Sam found a job. (forgotten if I"ve posted about this or not, haha so sry if its a repeat) Hes working for Red Gear full time (H&R Block bought them last year) He works on the text side of the software. He LOves his work place. Full of funny awesome people who all share the same views how lucky is that? We're planning to move this winter to a slightly larger apartment. Mariska Turns 2 in two weeks. Eek time has flown by this year.

Heart Hugs
Melynda, Sam & Mariska (HLHS post glenn)

A few Updated pics

2009-10-20T10:47:00.000-06:00

Facebook :o) and Summer time

2009-08-24T12:51:00.005-06:00

Mariska is doing just awesome. Feel blessed to say that! Misky becomes more of a little lady every day. Shes so silly, Always making funny faces laughing and giggling. Shes a bit of a monkey also, Loves to sit on the table or our computer desk and play. Shes almost running, just a super fast walk for now, I fear when she can unlock the front door and run, haha. She loves to say "I wana go out" or " I neee go out" Sounds like hes plugging her lil nose. Shes learned this crazy duck sound, not sure where she picked it from, A deep razpy WaaWaah Always gets us laughing.

I posted on Twitter and facebook a day we had a few weeks ago.. ohh what a day.

Started with me taking two sticks of butter out of the freezer so we could make cookies the next morning. We all went to bed, and in the morning found Misky with the two sticks of butter... well the papers to the butter. She Ate! all but half of one, which she smooshed into the carpet next to Sams side of the bed... As normal things come in three's. Later that afternoon I took a nap on the sofa, Mariska climbed up on the computer desk to look out the window. Being the smart cookie she is she took off her diaper and pee'ed all over the desk, she was nice enough not to get the mouse of keyboard, haha. The next part embarrasses me to say, That night we had chile for dinner, remember all that butter... She comes to our bed in the mornings while she was there she left a surprise hands Sam a piece of corn looks at it for a minute then it hits him OHH NOOOO! What a way to start a day :o)

Then the fight started to counter act the butter. 3 almost 4 weeks of 4-7 runny diapers a day, :- Took her in to the doctor after the first week, She lost some weight, Frustrating how easy it is to drop and so hard to add on. We'll take her back in this month to make sure everything is fine.

Off to some fun adventures for the month. We headed to Oregon and California with all my family. 3 sisters, 2 brothers both grandparents, and the kiddos, Had a blast! Checked out Crater Lake, then the Red Woods, and the Beach. I need to pick some pictures out and post them here, almost 2000 to look at, hehe might take me a while. Mariska loved the ocean and the sand. I learned getting sand out of her hair is kind of tricky. but so worth watching her play. x)

Sam and I are both on facebook if anyone wants to read the short updates I do. Samuel T. Anderson and Melynda Browning Anderson are our facebook names. Just say you follow our blog when you buddy, so I keep the picture files open to you.

Updates, Updates, Updates!!

2009-05-13T11:43:00.004-06:00

Boy oh boy its been a while. :) Mariska is doing awesome. We took her in for her 15/18month pediatrician visit 3 weeks ago they decided to combined the two and maybe hope Misky and the nurse can be friends again someday, Pooor thing, every time she sees her nurse she knows whats coming. Cant say I blame her. Next visit no more shots. Not sure if she had a side effect to one of the shots that got her sick or the fact we forgot the shopping cart cover and she licked the bars *sigh* all that work of being a germaphobic.

A week later after the shots she spiked a fever. 3 took about 3 hours to go from normal or almost 103.f. Gave her some medicine and went back down. :) After a week or 2 Sam and I both got what ever she had. Sam was over it in a week, took me down for almost 3 weeks with her cold/allergies. got to love em. She picked up a cough for a week. and Now I feel we're all on the mend or just over it.

Misky is walking! every where. :) has been for almost a month. She crawls up the stairs at Grandma B's house and loves opening her back door to let the dogs in. (her buddies) When ever she hears a dog barking she sticks out her tongue for the dog sigh in sigh language and then barks, to cute.

Little miss has a few new faces. One oh her newest is covering her mouth and pouting while squinting her eyes. I call it I cant believe it face. I get it every time we stay "stop" "no" "don't" or shaking our head at her.

We had a cardio visit on May 6th. Dr. Williams said every thing looks good. He would like to see her heart size go down but at least it hasn't gotten any better. Took her off of Lasix. Left Dig. and aspirin the same. Increased Enalripli to 2.mg. She will for sure have the Fontan when shes 3- 3 1/2. That's when he likes to sent them if they need it yet or not. Nice to have a time frame to count up to. Always wondering when she would need it is a bit draining. He also said she wont have any trouble with her weighing enough for the surgery because of how well shes gaining.

Her weight and height we're the same at both visits. 22lbs and 30inches. Oh she finally got a front tooth this month!! 4 molars and two bottom ones. haha and not a front tooth in sight that's all changing now. :)

Had our first PT (physical therapy) in Davis county today. Now that shes walking she doesn't really need the serves any more. Last visit we had was back in November!.. I canceled the one in December cause she was getting sick. Then we moved got lost and found are way back in to the system. haha The visits we did have helped her and us a ton on how to help her learn. Then she took off from there. Shes one smart cookie.

Just before every thing happened Sam was layed off from his job. Its been a bit stressful looking for a job that just doesn't seem to be there. But we're looking at it like a Looooong Vacation. Hes getting a lot of school work done. Keep us in your prayers that he'll find a job soon :)

Happy late spring :)

Heres some Pictures and a little update.

2009-03-30T16:41:00.003-06:00

Long time no post, hehe. heres a quick update for you all. :o) And some pictures from a week ago or so now. And some of her and her new crib.

Mariska is doing Great still. She'll walk with help all over the place, and sometimes feels brave and takes 2 or 3 steps to us and is working on walking while holding one only one hand. She is still boy crazy, Gets bad at church she sees a little boy and clams and screams for joy, like its her long lost friend that she ran into. haha its pretty funny.

She knows her dog sounds, elephant, cow and another one that slipped my mind. Still no front teeth, but shes getting 4 molars in. All at once, which is messing with sleeping in the house. We're excited that she'll have some more teeth then just her bottom two.

Shes around 22lbs now and growing like a weed. I looked over at her and said to Sam did she just grow a 6inches?! haha she was on her tippy toes, almost tricked me.

Some of her favorite things to do is Blow kisses to anyone who asks or leaves the room, such a sweet heart. Likes a little show called Choo choo Soul on Disney, Word World, And The Suit Life of Zack and Cody (we call that show her Boys.)

Thats all for now, Thanks for the comments. Also please pray for Mercydez Haws and Gracie Gladhill and there parents of sweet heart angels. They both went back to heaven this month. Your in our hearts and prays, words cant say how sorry we feel for your loss.

The box was much bigger then I thought it was going to be, had some of the apartment grounds keeps bring it up to us. :)
uncle Tyson was bored that day so came over and put it together while he waited for the pool to open.
Sam and Misky "breaking in" her new bed. haha My babies. ^^

Sweet Baby Gracie

2009-03-02T13:31:00.003-07:00

This Brings such sadness to me for the Gledhill family. Sweet Gracie needed a new heart after hers started to fail two weeks ago. I'm at lose of words to day. The new heart was unable to work the way it should so the help of ECMO was needed. Shes was no longer able to have the Glenn or the Berlin Heart. Her little body is just to worn out and cant make it threw another transplant.

We had a chance to meet the Gladhills at the "house on the hill" when Mariska was having her Glenn and Gracie was recovering from the norwood. That are such an amazing, strong family and so close to the Lord. They feel its time to let Sweet Gracie go today. They are going to donate some of Gracie's organs to help others have a second chance at life. Because they want to help others this shortens the time they have to say goodbye. Peace Pray for this family and their three other Children. My heart is Full and my eyes moist.

Were praying for you the Gladhill family, May peace be with you.

Merry Christmas. Little video of us for you to watch

2008-12-19T16:19:00.001-07:00

Send your own ElfYourself eCards

Look who's crawling!

2008-12-19T15:37:00.002-07:00

We finally got Mariska started in PT (physical therapy) She had her evaluation done on her birthday, poor thing she was so not awake all the way but did pretty well. Misky at the time was not able to get from laying to sitting. So I asked what I could do to help her while we waited to set up the first home visit. They told me not to just pick her up (ops our bad, hehe shh) To roll her a little over to her side hold her arm that's in the air and push her hip back to the ground, then she should put her other arm down and push her self up.

After three days of working with her every time I went to pick her up, I helped her learn to sit up her self. She learned pretty fast once the parents knew how to really help.

We plan to have PT twice a month come to our house and work with her for 45 mins. The last visit was the same day as her RSV shot so she was a little grumpy. We now put things in her way so she cant scooter on her little tush. Yup, she's a butt scooter, and is rather fast. (I'll post a video once I find my cables)

Last week shes has learned if she wants to get over something shes gotta be on her knees! YIPPY! Shes starting to crawl more and more. At first it was just showing off. (that would be her, showing off in her shy little ways) She would go Super turtle speed. this wells shes getting a little faster and braver.

I have to block her in the living room now, its been down hill once she found shes like to help the dogs eat their food as much as she loves to feed them her food. (that one happened on daddy's watch.. Still love ya babe!) She gets so excited when she things she can get away and into everything, and scoots and a little crawling to any that has buttons or cords. Her personal favourite is the POWER buttons. Gets everyone by surprise. :o)

Shes also starting to wear 12-18 month clothing. Shes still a little small but they work for her. I never really thought about her growing out of her 12 month clothing, she sure showed me.

Tooth #2 played peek-a-boo for a few weeks I think its her to stay. Silly Misky has two little bottom teeth.

Happy late Thanksgiving and an Early Merry Christmas!
Love,
The Anderson's

Mariska's 1st Birthday Party in Pictures

2008-12-19T15:09:00.000-07:00

-The Guests-

-Playing and opening Gifts-

-The Cake-

-Miskys Tutu I made for her Birthday. (She also used it for part of her Halloween outfit.)

Thanks everyone that was invited to come, and for spending the day with Mariska and spoiling her. :o) and a special to Anut Helena and her family for leting us have the party in her gorgeous home!

HAPPY 1st Birthday Mariska!

2008-11-14T11:21:00.002-07:00

my Look at how fast you have grown! Its been just one year, where has the time gone. You came to us at 6lb 11oz now your 19.5. You get bigger, sweeter, and cuter everyday, all the things that have have happened to you we have always been at your side on your little bumby ride. We're so excited to be your parents and get to help you all the time.

Happy birthday and we love you for all the little and big smiles, all the giggles and grins, for eating your food, for spitting out the paper that's in your mouth when your told, for learning all your new fun things, For picking us to be your parents. We couldn't have asked for anything better then you! We love you sweetheart.

Sedated and still all smiles.

2008-10-24T14:05:00.003-06:00

Mariska had her sedated ECHO on Wednesday all and all every thing went pretty well. The day started off by starving her before the visit. She ate when I woke her up in the night for her one last bottle so she wouldnt be grumpy until she could finally eat again.

She loves people so getting to see a ton of people at the hospital helped take her mind off of food. We did the normal weight and height. She's 29.5 inches long and 18.5 lbs. still tall and skinny, now shes started to fill out in more places other then her cute chubby cheeks.

We talked to the PA about the sedation, Misky had a choice of oral or two IV sedation meds. I was all for the oral. If you have to do one less poke I'm all for that. :) The only bad thing about the oral is it tastes HORRIBLE. The all should work for a few hours.

After misky was atached to all the wires and had her icky sedation med it we just waited and for it to start working. Misky was not happy with the poor PA who gave her the med, every time she came in the room she would start to cry like now what?

Misky was so funny. the med has the same effect as being drunk. The poor kid. She started to rock then started to make circles on my lap. Then she started to play Peek-a-boo with the ECHO tech. She had all four of us laughing. They let "her" watch tv until she started to get sleepy. The tech was changing the channel asking her if she like what was on. He got to Pirates of the Caribbean she got excited going OOHhhhh ohhohohohoh and clapping her hands. The closer she was to being asleep the more grumpy she became. It was neat to see her new pluming in her heart. That was the first time I've seen how much different it looks the her norwood heart. Blows my mind to think how it can even work with just half. Truly a miracle!

Once the ECHO was done and the cards we're happy with the picture, the nurse took her blood pressure in both arms when she got to the 2nd arm she woke up! It was like ok I'm done with my nap lets go play, and just as happy as any time when she wakes up. The nurse told us most likely we wont have to stay on the same day surgery floor for very long. :) Sam carried her up to the secound floor. as we were leaving to go up we passed her normal cardo nurse she thought misky was going to be sedated we said she was and boy was she shocked that misky was that awake right after. haha. Misky has always fought the sedation even when she was tiny. One the way up she was loopy and smiling more at every one then normal! once at the 2nd floor they told us since shes awake she just has to drink 4 oz before we can go. Misky was the life of the floor. ALL the nurses came over to see her cause she was being so silly. We gave her some watered down apple juice, witch she loved, as it was her first taste of juice. -later that day the juice was nothing 8 diapers couldnt fix. We had it in a sippy cup but ended up just poring some of it into her bottle. Which also helped water it down even more. She ended up drinking all 8oz! and had a little gram cracker. She was one hungary little girl.

After we checked out we went down to get her x-rays. She got to sit up in the big kid seat this time! She enjoyed that a lot better then having to be layed down on the cold table.

Then we went back to Cardio to talk with Dr. Williams. Dr. W called Dr. Pulver down from up stairs so we got to see both of them. They said the hicup or galup (just a noise) was still there. They didn't find any cause which is good and bad. He heart function is getting BETTER slowly deferentially not worst!!! Her Tricups valve is still leaking but not as much. Dr W used the word normal! I had to joke around with him on that one.

Her cards are still concerned about her heart. But where she looks great, is eating, and putting on weight they are happy over all. She is still a candidate for the Fontan (never really crossed my mind that we might not be...) We'll know more about time frame when we see them in 6 months!!

Pumpkin Patch

2008-10-22T00:04:00.006-06:00

On Monday we took Misky to her very first pumpkin patch and hay wagon ride at Day's Farm in Layton. She liked the wagon ride and the little boy that sat next to us, On the way to the pumpkin patch she was saying Ohhhh while looking forward at the pumpkins, we even got a Uht oh from her, it was too cute. once we got to the car and later at home we're pretty proud to thing we found pumpkins big enough to put Misky into.

Mariska also has her sedated echo today..(the 22nd) I'm a little ok really nerves just about the sedated part. It all makes me crazy. We're hoping and praying to find that the hiccup the doctors heard la st visit was just a here today gone tomorrow kind of a thing. Only time will tell.

The things I forgot.

2008-09-26T13:54:00.003-06:00

You'll have to see my sister Tanya's blog for some more pictures of camping, the train ride, and the hikes we all went on. Tanya's blog! She took some better picture of the trip...

Misky is waving her arms trying to dance to the "my girl song on the blog" She's such a ham.

The Anderson Family

Giggles

Make-A-Wish!!

The great, fun, and silly pictures

Merry Chirstmas

Happy 4th Birthday Mariska!

Welcome baby Kamiah!

Rejection Free!!

Biopsy at 12..

Blogs? lost??! say it isnt so..

Heart is lookin' good!

Rejection still going on...

Echo looks good. Day 4.

Post 200, Oy! And an update.

Rejection.. One year ago to the date Mariska was given the gift of her new heart

Cath lab

Time for a picture or two.

Finally an awesome update worthy of a post.

Happy New Year.

Happy Birthday Pictures, Halloween, and Snow.

Is it normal?

Miss Mariska is 3!

cath/biopsy number 6!

Heart Cath and Biopsy tomorrow.

Halloween? is almost here

Happy days at home.

Biopsy # 5

Tummy Pains.

Bubbles bubbles pop pop pop!

Primary Penny Song

Juice and water. Ohh yeah!

Mom mommy. can I have some?

Almost a week.

Back to the Hospital

Home sweet home.

Its a 4 letter word..

18 days of NPO

Run legs RUN.

Biopsy # 4 results

NPO day 14.

Things are movin!

Still waiting..

CSU *Children's Surgical Unit*

Getting kicked out?

Kicking "Napoleon" Out ta here!

Looking a little pale.

What day is it? how long has it been?

Bubbles?

cellular

Hello PICU--CICU

Just another sunday..

Update

Rejection

Biospy Results

Oh Me Oh My. Please Please

Chest tube site.

Pictures. =)

# 1 heart biopsy

How many doctors can fit into Mariska's room. ;)

Oxygen Stats, and picture heavy.

First night in he CSU

We got a smile :)

Baby steps.

Discomfort

AR lines are outta hear!

Breaths of air.

Pictures. Her old heart and the first day in recovery.

Working on PEEP

Hearts

Send a letter, mail a hug

Update # 3 Yaaaa

update 2

Updates From the Start

The Call!

Missed the bullet?

The call

Happy News.

Listed Today.

Pictures. =)

Oh the new things that have come to stay.

CSU Children's Surgical Unit