2015 to June 2016!

I decided to try blogger on my phone... and it was a big fail, so sad!   We've lost 3 or 4 great *I'm gonna do this blogging stuff again* posts!

SO in a nutshell before I forget again and anymore things happen I'll give you the super fast update!

Mariska's update. She goes to clinic every 3 months, her heart is looking wonderful, she has gotten to come down on meds. Her new goal range for tacro ( immunosuppressant med) is 5-8!   Her echo from last month looked good.   Also she's far enough post transplant that she only needs a heart cath biopsy every other year, unless needed. so NO CATH this year!!
  Mariska is 8!  She decided she wanted to be baptized as a member of the Church of Jesus Christ of Later-Day Saints.  Her daddy was able to go into the font with her. It was a wonderful day, filled with the spirit, surrounded by family and friends.   Mariska Just finished the 2nd Grade. She was given the award works well with everyone, at the end of the year.   She's looking forward to a fun filled summer with swimming and playing with friends. 

Kamiah now 4! is a little social butterfly, she lives outside and is very self entertained, and like her sister an independent spirit.   I love her smile, her silly blinks, and that curly golden hair. She's forever our little Goldy locks.

Baby #3 Did I tell you we were expecting?!  No? She's now 10months old tomorrow, how can that be? I just had her.

Winnrey our newest little Girl brought a sweet spirit into our home and hearts.  She is adored by her sisters. Winnrey loves to smile, army crawl, nurse and eat anything she can get her hands on.  She is such a content happy baby.   We found out she also has a small heart defect. VSD its a small hole between her two lower pumping chambers. No planned treatment for hers, if it gives her trouble later in life they can patch it, but so far no one has been able to hear it when checking her heart.


Sam and I are slowly becoming more wise and better parents. Sam Goes Bow hunting, flyfishing, backpacking or rifle hunting when ever he gets the chance, Hes love for the outdoors is one of the reasons I love him!   Sam was layed off last year, (march 31.. so his first day out of work was april fools day.. not a good joke! couldnt even tell anyone until the 2nd, since my family is a big bunch of jokers!)    Finding the right replacement has been a challenge, but we're blessed the market is opened up and he was able to find work quickly.
 Sam's working on learning the ropes with Forex, so hopefully he'll become a full day trader. 

Melynda  I'm working on keeping busy with the house and kids. I do a little photography and play around with my cameo, its been fun making things for the house, gifts or cards for friends. Live's going well for us. 

Biopsy results

ZERO rejection.  Such a wonderful thing to hear!

Still some small labs spending but the biggie is back.  Looks like we can keep our summer plans. 

Thanks everyone for the prayers and kind words on facebook.  Helps keep our spirits up knowing others care.

Annual cath

Mariska just had her annual cath this morning. She was super brave even a little excited. She likes to ask if they have any stuffed animals or blankets (she likes to feel spoiled when she leaves. Thanks to everyone who does donations!

She did well in surgery and Is recovering nicely. Her throat hurts a little, totally normal. She picked banana as her mask smell. Said she wouldn't do it again.  What's your kids favorite.   Her Pressures (13) are up from the last cath (9), but lower then the one before(18). Little on the high but normal side.

Should hear back from pathology later today what her biopsy sample shows.

She can leave at 4:30 has to stay flat for 5 hours. Can't move for the first one. She's doing great. I'll post again with results.

Cath quick results

Her culinary look beautifully normal!! Im so happy I am about to cry witg this news.   

her pressures are a little high for her but completely normal range.  

later today we will find out if her heart shows rejection.  Crossing fingers its clean.

Her White blood count is a little low, something to be watched.   Her meds being a little to high can do that to her also.  What does it mean if they are low? If she gets sick it will take her longer and more work to get over a sickness.

Waiting to go back into the pacu to see her

Cath day.

Mariska is in the cath lab right now.    Her cath doctors said if her presssures look good they dont nedd to check her culinary arteries. Which would mean no groin site access!   Home sooner today and a eaiser recovery.   Today we left daddy home to work and watch Kamiah. Ha work and watch a 2 year old. We got to take grandma. :)

Thank you to everyone who fasted for our family sunday. It has helped keep us calm and organized.

Rejection still, biopsy 2

Mariska had cath again November 20th

6am check in time is the worst part, but finding the results that day makes it all worth while. She went to sleep talking to the anesthesiologist  about his dog and what tricks he can do, ha he can tell time. Breakfast time and dinner time. Was the happiest I've ever seen her for a cath.    This one was smooth and she finished early. =) We played noisy games in recovery, until the kiddo next to us stopped crying then read books until she was ready to go down for clinic.

After the IV was pulled TX team told us not to pull it.. bad sign when that happens.


Mariska's heart chamber pressures are still extremely high,  TX said over all some numbers went up others down so they called it the same as the last one. boo hiss. They debated about admitting her again for another round of IV steroids but decided she could just go back up on the dosage at home.  She did go to school for a few days with her big 3m green mask on friday. but then missed all the next week (short week)

Her teacher sent home a bunch of homework and books to read and pass off. She was excited and read them all before we got home. She is starting to LOVE reading. I'm proud of her for her desire to learn.

Her cath showed rejection this time.

C 2.5 V2 ISHLT 1 PAMR 0

Still Cellular rejection. (if we had to pick a rejection to deal with it would be this one)


Last week she had labs. Her Cellcept (anti rejection drug she's always on) Didnt even show up in her blood. Now we're a bit worried. So rised that along with prograff her other main drug. Hoping they have finally become stable.

I looked at photos of her when school started she has changed so much! I love her chunky cheeks but wish it was back to normal again.  I tell her every day I love her cheeks and I wanna squish them. She'll look at me smash them together then pinch them for me. HAHA love her.

She had clinic yesterday Her heart still looks great! but her neck you can still see the vain pulsing telling us her pressures are still scary high.

One the 16th she will have a full cath (the enter in two places, and has to lay flat for 4-6 hours after. They want to check her pulmary arties and make sure they are still doing ok. The worry about those if they become damaged it would mean another transplant sooner then later. SCARY stuff.

Mariska's weight has been intersting. When she got sick her low was 37lbs now she's almost 52lbs!

We had a great Thanksgiving with my parents brother and his girlfriend. It was small and not crazy like most years. There is not a day that goes by where I dont think of Mariska's heart donor and their family. Their gift has let me have so many wonderful mermories with my sweet girl. They are always close to my heart.

Thanks for all your payers, wishes and thoughts. They have helped calm sole and have peace in my heart.

Biopsy results

No rejection! Squeaky clean biopsy.

Huh what?  I've gotten my self mental prepared for the "R" word. Could be a donor specific antibody rejection. That one comes back Monday.    Her pressures are crazy high which explains her jugular veins. We're a little baffled.

They ran a crypto culture... Or ran everything but it. Medical mix up. So another one was needed. Delaying it another day. Once that's clear she might beable to sneak into the play room an hour before it opens.. Maybe. Both of us are ready to be home. Feels like a week has gone in the last 2 days.  

We have discharge meds and papers set for Sunday afternoon so until then its the good ol game of hurry and wait.

Heart pictures

Here's Mariska's "old" heart!  Pathology said they keep all of the hearts (guessing transplant) they did a study on hers something about echos and how they read dense scar tissue. Her left side is tiny about the size of a thumb nail. He old us no one really comes to see their hearts after the year mark.   He has hearts dating back to 64'. Blows my mind. Guess as they get older they become more pink again too. 

Mariska hakf a sleep when they dropped by and wanted nothing to do with it. So I make her take a photo with me. :o)    she hasnt been she self this stay. The meds are making her super tired and she's still a little sour about no play room again.

Her class had a field trip today, breaks my heart but there will be others. She will miss another week of school and might get to go back on the 30. Im on the fence about her going to her class Halloween party. Time will tell. 

   Created by Photo Grid. Android https://play.google.com/store/apps/details?id=com.roidapp.photogrid iPhone https://itunes.apple.com/us/app/photo-grid-collage-maker/id543577420?mt=8

Cath lab

Mariska had her surprise cath today. She went down at 9:40. She's in recovery now.

Dr Day said her pressures are bad.

Will know this evening the results of her biopsy. To tell us what level of rejection.

She's did great. They had access from her neck, and didnt need the groin site.

We have it early. means less damage to her heart.

Keep her in your prayers please.

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

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.

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

cath/biopsy number 6!

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.

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.

Biopsy # 4 results

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. =)

Hello PICU--CICU

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..

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.