Saturday, December 10, 2011

Happy 4th Birthday Mariska!

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.

Saturday, October 1, 2011

Welcome baby Kamiah!

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.

Friday, September 16, 2011

Rejection Free!!

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

Monday, September 12, 2011

Biopsy at 12..

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.

Thursday, August 25, 2011

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

When we lost the domain name to Mariska's site.. * made it .com over the* 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!

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!

Tuesday, August 16, 2011

Rejection still going on...

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.

Thursday, July 21, 2011

Echo looks good. Day 4.

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!

Wednesday, July 20, 2011

Post 200, Oy! And an update.

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

Monday, July 18, 2011

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

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

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

Monday, May 16, 2011

Time for a picture or two.

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"

Friday, March 18, 2011

Finally an awesome update worthy of a post.

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.

Tuesday, January 25, 2011

Happy New Year.

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.