Nov 30, 2008

Thanksgiving Break

We have had a very nice break. On Wednesday evening the kids and I headed up to Seattle to stay at a hotel and visit mom and baby. We arrived at the hospital and bumped into Miss Washington who was visiting all the sick kids. We visited with Mimi and Mia and the went to the hotel. My sister Beth showed up to visit and was able to stay with Mia so Mimi could come to the hotel and play for a while. The kids LOVE swimming, so we spent quite some time doing that. More swimming in the morning and back to visit the hospital. Mimi took the kids out to the playroom etc and I got to hold sweet baby for about 2 hours. We even had a nap together. This was the best B-day present I could have had. We left around 2:00 just as Mimi's parents got into town, so it was nice that Mimi was never alone on Thanksgiving. The kids and I headed over to my moms for dinner and turkey. We had a great time as usual with tasty food and good company. My mom didn't make it to her own party since she was with my sister Anne as she gave birth to her baby girl Eve. She is so cute and all went well.









On Friday we attended my grandma's Memorial Service. It was a very nice service, for a woman who lived a full life. We will all miss her greatly. On the way to the memorial, Jensen was firing off question after question. He asked:
Jensen: where did grandma-great go?
John: To live with her Father in Heaven, and to see Grandpa
Jensen: Where is she going to live?
John: She was a very good person and has a mansion prepared for her in heaven.
Jensen: Is her spirit going to be like a ghost?
John: Her spirit looks just like grandma, but just doesn't have a body back yet. (I told him all about Jesus' sacrifice and the Resurrection that we will all receive.)
Jensen: Is someone going to sell her home?
John: Yes, her home will be sold
Jensen: After she gets her body back from resurrection, where will she live when her house is sold? (I love that his mind is really working hard)
After all the questions and some thought, he said: "Dad, I just wish I could give her a hug and a kiss." Such a sweet boy.

Afterwords we all went to mom's for pizza and time together as a family. Mimi later surprised us by coming home for my birthday. Thank goodness, because I was about to go see a movie all by my lonesome. We had a nice low key evening at home.
Saturday I went paint balling with my bro Taylor, Step-bro Joe and Bro-in-law Tim. As usual we had the time of our lives. Taylor and I had a couple games where we just punished the competition. We also had a few games were we were punished. During one game, Joe was the last man on our team against at least 20 guys converging in on him. He was tucked into a bunker and the ref kept asking if he wanted to surrender. I was impressed that he kept yelling "never!" Twas funny to watch. Come to find out he only had two bullets left. Tim did great and was one of the last guys out each time. Good times. After some home improvement projects, my buddy Chris took me to a movie. Not a bad birthday weekend at all and especially under our current circumstances.

Oh, Jensen was really cute the other night. We found one of his long lost remote control cars (mow-control) and he had both of his mowcontrols tucked in beside him whn I was kissing him goodnight. He was so exited about the fact that he has two, but I thought it was funny what he said:
Jensen: Dad, wouldn't it be great if I had three mowcontrols?
John: Uh-huh. (I like this kind of kid strategy)
Jensen: Or sixteen?
John: That would really be something.
Jensen: What if I had a hundred mowcontrols? Then there wouldn't be room for any other toys in our house. The baby would be sucking on a mowcontrol because there wouldn't be room for a Binky.
Gotta love his imagination. I remember when I used to dream about this same kind of thing. He and I have a very symbiotic birthday present relationship. He gets me remote control cars/planes for my birthday, and I was getting him Transformers before he was old enough to appreciate them. It is fun having a boy for boy stuff.

Well, the best of all this weekend is that the doctor thinks that Mia should be able to come home by Friday. We are elated.

Soggy Computer

This morning I wake up the the words, "Daddy, your computer is all wet." I open my eyes and Ellie is standing there by my bed soaking wet. I began to tell her to just go change and then I shot out of bed with the image of a smoking laptop computer in my head. As I rounded the corner at the bottom of the stairs I first noticed "Lake EllieJensen" on our new hardwoods. Apparently the kids did the dishes early this morning and then commenced in some sort of water fight with the sprayer. The computer screen was closed, so it seems that all the water was able to drain off without harm. The computer was on the Dining room table 20+ feet away from the kitchen. You get an idea of the quantity of water we're talking about here. After about 40 minutes of cleanup and a full laundry load of towels, I thought I was done. Jensen had come down from his room and I heard him say, "but dad, how are you going to get the water off the ceiling?" At this point I finally could smile (secretly) about the mess. There was water dripping from the ceiling all over the kitchen. You must admit that they are thorough.

It s now 1:00 and the kids keep asking if I am still "disappointed" or mad

Nov 28, 2008

How did that happen?



Today is Mr. Man's birthday- Mr. Man senior. I would have loved to post some embarrassing pictures of him, but as luck has it- my hard drive is completely wiped out. No, no- not all of my photos are gone- that would be disastrous by epic proportions. The pictures of his handsome dimpled face are resting soundly on an external HD at home. You lucked out daddy!

This post is to celebrate what a "stellar" (picked that up from all of the nurses) man he is!

John and I met when I was 18.... a million years ago. We have had almost a decade of hanging out together- and have pretty much worked out the kinks, except for the fact that we STILL negotiate the temperature in the car ;-)

A few thoughts for today- I better hurry before SBM decides to wake up.

Happy birthday to the man who always makes me laugh. Even in completely inappropriate circumstances he is witty. I owe all of my belly laughs to him.

Happy birthday to the man who carried a recliner to the hospital so I would be more comfortable. He is always doing the sweetest things for me.

Happy birthday to the man who is always the last ready for church, despite my countdown. He thinks he is superman when it comes to getting ready.

Happy birthday to the man who makes breakfast for his family every Sunday morning... maybe that is why he is always late! Na... church is at 1:30.

Happy birthday to the man who sings to his kids every night- and will occasionally sing to me when I need him to.

Happy birthday to the man who initiates the family dance parties when he gets home from work. I really miss those dance parties.


Happy birthday to the man that can do anything according to his son!

We love you daddy- Happy Birthday!!!

Nov 27, 2008

Thanksgiving


Well- it's thanksgiving. Me and the girl are hanging out watching the parade. Yesterday I asked about a "day pass" to go home for Thanksgiving. He said he would have said yes, but two days ago her heart rate sped up a little bit.

She has been doing phenomenally and they hope to have her drug levels at a therapeutic dose so we can go. Mia's vocal chords are still swollen from being intubated for so long that while her oral feeds are improving, will be loving her NG tube for awhile.

Now on to what I really wanted to blog about:

I couldn't be more Thankful for anything this year! What a year/month/moment of blessings. I prayed so often for this one thing- and I was blessed with it. I am so so Thankful for my loving Father in Heaven who answered my prayer. I love this little girl and am so thankful to be her momma. Everyday I hold my hand over her chest and feel her angel heart beat. I think of her donor- and the incredible gift that was given to Mia. I don't know anything about this family except that I love them and I am so grateful to them!

John and I were getting ready to send our thank-you letter to the family and thought I would send along a few comments from this blog. If you would like to post a brief comment to the family- I will compile some and include it with my letter. Mia is so loved and the heart that lives on in Mia has been loved by so many- by all of you.

I hope you are all having a wonderful Thanksgiving Day! And I hope you all have something wonderful to be grateful for this day.

eat some turkey for me ;-)

Nov 25, 2008

Smoochy

We think we are really funny kissing with masks on. I in particular think it is hilarious. We have been wearing masks in Mia's room and I have several funny jokes about Michael Jackson and the joys of smelling my own breath. You know, even though the mask isn't very intimate, it could be great for couples that struggle with bad breath. I should patent that idea.


I have been meaning to make a post on here about my wonderful wife. I have been time and again amazed at her ability to persevere day in and day out as our trial has drug on. I know that on many occasions she felt as if she couldn't handle another day of heartbreak, bad news, watching Mia suffer with out even the comfort of holding her, or feeding her, and the waiting and waiting. Each new day she has been able to summon a smile and dig in for another day. I am always impressed at how well Mimi is able to take over much of the nurses jobs. I have many times felt amazed as Mimi is right in the action when Mia has had a scary episode etc.

I too have enjoyed her posts her on the blog. I find myself checking the blog several times a day to get the latest on Mia since I have to work. I in turn report to Mimi about all the cute things the kids are doing here at home as we chat each night. Tonight we (the kids and I) were moving all the furniture back into the bedrooms since we just got our new carpet installed. As we were eating dinner Jensen was rearing to go. He said, "Dad, I'm gonna work real hard until I am really tired and really sweaty." Ellie got mad that Jensen and I put her mattress on her bed. We took it off, and watched as Ellie single-handedly put her mattress on BY HERSELF. Amazing. It has been priceless to watch as the kids were so eager to dismantle the beds and shelves etc as we moved furniture and then put them back together again. Those kids can work a wrench/ alen wrench and screw driver better than some adults i know.

Meems. You are great. You are also very Hot.

Nov 24, 2008

EL PISO

WE MADE IT!!

I am laughing a lot because we are in the very first room on "the floor" which is separated from the ICU by a door. It really is a different world on the other side of the door.

When we got here- there was no nurse to chat with. I have got to know the nursing staff so well in the ICU that they just stop by or say hello when they walk by. I was singing the donkey song (from Shrek) to myself when Sara one of my favorite ICU nurses walked out after transferring us. We had a sad little minute saying goodbye. She was one of the nurses that saw me through the ups and downs of the wait of my lifetime. It was so surreal to actually leave the ICU- and to think that we won't be hanging out together anymore.

When Mia was being wheeled down the hall I was following behind with my video camera. I am a total nerd and had to film everyone's reactions to us leaving. Everyone was so excited for us- it was the happiest/saddest parade down the CICU hallway. She was waving to all her fans- not really- but I know she will miss them all.


These are my home girls! The last couple days Mia has been really popular. We get a lot of "new heart" visitors. Everyone wants to see her awake and happy. Many of these nurses feel a sweet connection to her and brag to the other nurses if they got more smiles than the other. It is fun to reminisce with nurses from when we were first admitted. When Mia was on the bridge I gave her a mastisol bath... total rookie mistake. I felt bad FOREVER! I was trying to be so careful taking off a dressing using what I thought was detachol (adhesive remover). I essentially covered her neck and chest area with liquid glue. I cried. They are packaged the same, but are different colors. We have come a long long way since the mastisol bath- even though I have finally forgiven myself- some of the staff like to remind me ;-)

This is Candice- I am going to miss her the MOST! She just donated her long hair- Love her!


We also got to meet Katie and Bryan- Maddie's parents. Maddie is darling! Hopefully someday soon we can get these little heart babies together. Katie wheeled in an entire wagon of Maddie blankets and brought a special one for Mia. This girl is wonderful and is always sending/bringing gifties for me and Mia. This is my huge "we're headed to the floor today" cheesy grin. The hair bow is compliments of the nurse trying to hide the IV in her scalp.


I never want to forget this day- we aren't home, but we are one step closer!

Nov 23, 2008

Princess Central


I never thought the day would come that I would have a little girl running around in princess clothes all day. I was excited to have a little girl that was into fairy tales. Well... we are in full blown princess mode at our house. Ellie got the Costco dress up chest last year for Christmas. She dressed up here and there with cousins, but was never as into as she is now.

Being the little sister she has been a good sport about playing whatever Jensen wanted to do. We thought it was cute that she wasn't super girly. Out of nowhere she is playing beauty shop and running around in all things princess. We always know where she is in the house from the noisy plastic shoes that are a permanent fixture on her feet. Ellie can rarely keep track of anything- but I am impressed with how many crowns/head pretties she manages to alternate. Last night she did my hair in her beauty salon. It was darling to say the least. As she was combing and twisting my hair she was repeating everything I say to her while I do her hair. She is strictly hair and lip gloss at her salon. Luckily she has a collection of lip glosses from my bathroom-I don't have the heart to take them back. John mentioned that every day Ellie can be found in her room reapplying nail polish on her toes. It is getting thicker as the layers go on. John found her applying nail-polish remover the other day and used most of the bottle in one sitting, so that's not an option. Just layer it on!

Many of you probably have girls that do this exact same thing... when did they grow up? I am cherishing her princessness because I don't get to see her- and I don't want to miss this time.

John introduced her to this music video- now she wants to watch it on a loop. She calls it the princess song- or sometimes the white dress song. * you have to pause the music on left to hear





Usually after watching this video she will run to me wherever I am in the house and ask me the following questions:

"Did you get married?"
"Can I see you get married?"
"Did you wear a dress with your daddy?" Daddy means John.
"Did you run to your daddy?"
"Mom, can I show baby Mia how to be a princess?" (can I play dress up with her)

Sometimes Ellie will ask John if she can marry him. Sometimes she says she is gonna marry Jensen. Really cute. Jensen plays along. I think mostly he doesn't get it, and doesn't pay much attention, so his attitude is like, "ya we'll get married. I'm cool with that."

There is a sweet magic in her eyes when she asks me about how I feel about her daddy. Sometimes she will run to me and say, "mommy, mommy, mommy, did you get married to your daddy?" Me: "yes honey, I married daddy." Then she will just walk away with a smile on her face- no words. The wheels are turning in there- and I have a feeling she will be a hopeless romantic.

Nov 22, 2008

Not so Fast

No floor yet. Mia decided to spike a temp hours before they were going to give us the boot... so we are still in ICU. They are having problems with her line, and will probably just take it out. It won't draw back, and it may be causing the fever. The fellow stitched it into her skin- she just can't keep that line in. I like the Hickman because they can draw her blood as often as they want. If they take it out, it will be needle city for us. They decided to put the milrinone back on for a day so now she has an IV in her scalp. This is her third unicorn crown.

Everything else besides the fever is going great! The nurses love her to death- I will miss them when we're gone. The new ETA for the floor is Monday. It would be so nice to flash forward to the day we go home... yes please!

Nov 20, 2008

Freedom- Smiles- Milk- and a Daddy Surprise.

Well I spent the better half of the day trying to get a good picture of Mia smiling. She smiled A LOT, and I have A LOT of pictures of the corner of her mouth. The nurse told me that she got her to laugh today... I'm not quite sure I believe her ;-)

It has been a wonderful day! Mia took the bottle TWICE- and ate it up. She loved it! It is so soothing for me to feed my baby! This was her face after the yummy milk. Poor thing has been waiting so long for someone to feed her.

We took a stroll back down to the CICU to show all the nurses just how big we are. I have to say it takes coordination to hold her the way she needs to be held, and to hold a mask over her face. Everyone was so pleased to see her without any connections. That's right! They hep locked her central line. Now we just have the feeding tube! Love it!


We got a great surprise tonight- DADDY! I told John how much she was smiling today- and he couldn't resist coming to see his baby girl. It is always fun to see him walk in the door when I am not expecting him!

We will be on the floor tomorrow- and I can have my cell phone ON- yay for me- so everyone who has called this past week and I haven't returned your calls- I can answer now!

Nov 19, 2008

We've Moved

We are still in the ICU- but we are now on the PICU side instead of the CICU. Our room is huge- and we are loving it. Mia is spending the majority of her time awake and happy. She really wants food. I keep sneaking her milk on her binki. She loves it, and kicks when I take her binki out to re-dip it. She is getting a swallow study today, so hopefully soon she will get something in that tummy.

Everything is going great with her new angel heart. She is doing wonderfully despite the fact that she has very toxic levels of Cyclosporine (immune suppressant drug) in her body. Two days ago her level was 664- yesterday 685. They have been holding the dose, but her levels are going up? Strange!! This probably doesn't mean a lot unless you have a transplant kiddo- but they want her level under 200.

We should be on the floor by the weekend. Then HOME!

* I caught a mini smile on camera.

Nov 16, 2008

Mia's Heart Sister


Little girl is doing great!! I just finished watching her echo and I am still amazed at how "normal" her heart looks. We are still here in the ICU. Her medications have been tapering off significantly. One medication (that keeps us in the ICU) is causing a little hold up. Mia has been on this drug for soooo long, and now that it is time to come off she needs a little encouragement. Milrinone is a vaso dilator and helps profuse her arms and legs. When they started the weaning process her hands and feet were cold. They increased her dose, and they are going to try and ween more gradually.

I held her all day yesterday- it was beautiful. We watched the notebook together. So, we will be chillin here until her cardiac output can adjust and she can profuse her extremities without the medications.

I have been meaning to blog about Mia's heart sister.

The day Mia arrived so did another little heart baby. They were born within an hour of each other at the same hospital, and shared the ambulance on the way over to Childrens. I think while they were in their little transport isolates they decided they were going to hold one anothers hand throughout their journey.

The girls shared a tiny tiny room in the NICU. When one alarmed so did the other. They often woke up at the same time, and cried in unison. The nurses often commented about how they liked to do things at the same time. It was their way of keeping the staff on their toes. Mia and Sophia had their first surgeries a few days apart. When I walked into Sophia's room after her procedure my legs were weak. Day after day we sat in the same room holding our little girls trying to take in everything that was going on with our babies.

We were discharged from the hospital on the same day, just a few hours apart. They flew home, and we ended up flying back :-(

Last week the unit coordinator called back and asked if I could have a visitor. I looked at the clock and thought- well, they must really like whoever it is to let them back. Then I started to get suspicious so I walked out to find out who it was. Sophia's mom met me in the hall and told me how they had just arrived. Sohpia had an obstruction and was flighted back over. Over the next next few days the girls got to be a few rooms apart. Sophia needed a stent placed, and they were off to the floor.

Sunday night- well you know what happened...

Talia, her wonderful mommy was able to come and see Mia after she received her angel heart. When she got here she told me she would be sending "heart vibes" to Mia- that she did!

I guess since Mia's heart sister was back she would be ok having her surgery. It will be interesting to see how much their lives parallel in the future.

They are back home now, and I am so happy that from our first good bye months ago we are on our path home as well.

Sometimes there are no words

Nov 14, 2008

A breath of her own

Mia was extubated today at 2:00- she has been breathing on her own and loving it. If you have ever been around a baby who has be intubated for awhile, it is the sweetest sound to hear them after the tube it out. You can barely hear her little cry because of the irritation of her vocal chords. Before when she would cry and I couldn't hear anything, now I hear the sweetest tiniest noise of a cry. I just wish I could scoop her up and hold her in my arms. I think I might get the green light tomorrow- THAT will be a good day!

Nov 13, 2008

Sharing the Love

A huge thanks to everyone who is loving our SBM (Sweet baby Mia) yep, I just gave my daughter a code name.

I know John and I both sound like broken records talking about how much love and support we have felt from all of you!! As much as I have suffered these past months- I have been living on my own "everyone I know is wonderful" planet. I can't remember having an interaction with anyone who wasn't super compassionate, loving, and eager to hear about SBM.


Just today there were quite a few people I was made aware of that are "Sharing the Love"


My friend sent me an email that made me cry. She went around to many of the staff at the YMCA where I taught dance, and had them hold a pic of SMB with a big thumbs up. What a cute idea! I can just imagine her running from person to person insisting they be as excited as she was. This is what I love most about her- full of energy. This is Lauri (on right)- thanks girl for hustling around the Y to share the love.

Someone I have never met decided to do a bike-a-thon for SBM. My friend emailed me about how the story was on the cover of BYU Daily Universe... thanks for Sharing the love!


Another package came to the ICU today from Sara Lyn Baril. She sent me one of her CD's- which I love- and her sweet son colored a picture for Mia. I love the cute art work we have received. I am so touched by everyone's children who have been so concerned for SMB. Many of you have told me how your children pray daily for her. I think those prayers count the most!! Thank you.

There truly has been an out pouring of love from so many people. All the cards, packages, voice mails, giveaways, comments- EVERYTHING has been so wonderful! I think this experience would have been entirely different without all of you! THANK YOU!

*I love the pic with the tiny hands holding the hearts. Noah's mommy made it- he has an angel heart too.

Miss Wide Awake

First of all, these are the two wonderful surgeons that operated on Mia. I can't say enough about them! They are amazing! They avoided me in the CICU because they knew how my heart raced when they came around. Dr. Permit (on right) would cover his face when he walked past our room, trying not to disappoint me. When I first saw them after the surgery and gave them huge hugs- I had to restrain myself from trying to pick them up. That might have been a little strange for them- but with how I felt I am sure I could of at least got their feet off the ground! It takes a unique person to go to school for EVER and spend their days saving lives.

I just wanted to show how many drugs are running through my tiny little girl. Some of these are just maintenance fluids, but it is A LOT of medicine. They have to concentrate her meds to keep her fluids low enough. Notice the IV pole overflow (the pump at the very bottom). She also has two pumps next to her warmer- some of these will be gone in the next couple days. They just removed the wires from her heart... it feels so great to have things OUT!

Mia has beeen wide awake- I can't believe it! Last night she was awake for hours just looking around. She is feeling much better and spending a lot of time looking around- LOVE IT! This is probably the last pic you'll see of her with the ventilator. Yep, you heard me right, they are weaning it, and it should be gone by tomorrow. Yay Mia!!

Ok- many of you have asked me where I was when I found out. Well, you'll just have to wait! JUST KIDDING.

I was in Mia's room- suctioning yucky stuff out of her mouth(I think she knew her angel heart was coming) when I got the call. It went something like this:

Unit Coordinator: Is Mia's mom in the room?
Me: Yeah
UC: May I transfer a call back?
Me: Of course....
Phone: ring, ring
Me: Hello?
Kelly: (transplant coordinator): Hi mimi, it's Kelly
Me: Oh Hi. (at this point I couldn't think of who kelly was- they know not to call me unless they were calling with good news ;-).
Kelly: One of the transplant coordinators.
Me: Hi- (Heart stopped beating.)
Kelly: I just wanted to let you know that we accepted a heart for Mia.
Me:
Me:
Me:
Me:
Me: REALLY? Immediate sobbing!
Kelly: Yes, we did. (at this point she said something else, but I couldn't hear anything).
Me: Ok, ok, ok, ok, ok, ok (in a panicked voice)
Me: REALLY? Still sobbing.
Kelly: Well, I have a lot of calls to make but I will call you back soon.
Me: Ok, ok, ok, ok, ok oh, oh... THANK YOU... ok ok, THANK YOU, ok ok ok, Bye.

Then I hung up the phone and ran to the nurse hyperventilating. She wasn't quite sure what had happened because I had been shaking my head and sobbing like I was really sad or something. When I told her "Mia got her heart" she hugged me tighter and we just cried for awhile. Did I mention I LOVE the nurses. Mia has been here for so long that they all have pet names for her. This nurse calls her "moma" it is so sweet. When Mia is sad she will say, "oh, I know moma, I know moma." Some of the nurses just love her like she was their own. I need to get a picture of her because she was the one with me for the experience that I have been daydreaming about for what seems like forever. My cell phone was in my car, so I borrowed the unit coordinators and started running through the hospital. My sister Nat had been here all day and had just barely left- I called her after I called John and she came right back. I called my mom, and went back to her room to stare at her until I was able to hold her. It was the most magical night! I will never forget how I felt- it was incredible.

Nov 12, 2008

Some interesting Facts


Speaking with the doctors at the hospital and surfing the net we have come across a lot of interesting information on heart transplantation. Here are some things we have found out:

History:
1964 - First transplant: A chimpanzee heart beat in a human body for 70 minutes.
1967 - The first human to human transplant, the man died from pneumonia 18 days later.
1984 - First successful heart transplant in a toddler: Two year old Elizabeth Craze became the youngest surviving heart transplant patient. (That is only 24 yrs of history and data!)
1995 - the first successful INFANT transplant happened at Loma Linda University. Eddie was just 4 days old.
In February of 1986 the second infant survived transplant there at the age of 10 days. It's an amazing story. There's a great article about them http://www.pe.com/localnews/rivcounty/stories/PE_News
1995 - The first year they were performing heart transplants for small children at Seattle Childrens. (That is only 13 yrs ago!)
As of the end of 2007, Tony Huesman is the world's longest living heart transplant patient, having survived for 29 yrs with a transplanted heart.
22 years after transplant, Dwight Kroening is the first heart recipient to finish an ironman competition. (We won't be encouraging Mia to do the ironman, but still you have to admit that is cool.)
There was actually a period of time in the 70's when research in the field slowed due to continued rejection. The improved life expectancy of patients after heart transplant is largely due to immunosuppressive drugs, which reduce the body's tendency to reject the new organ. This will be our main concern with Mia. We will need to watch her closely, as rejection can oft times be reversed. It is also not unheard of for a person to have a second heart transplant if failure occurs in a heart patient.
the first successful INFANT transplant was in 1985 at Loma Linda University. Eddie was just 4 days old. In February of 1986 the second infant survived transplant there at the age of 10 days. It's an amazing story. There's a great article about them http://www.pe.com/localnews/rivcounty/stories/PE_News


Statistics:
There were 2,192 heart transplants performed in the US in 2006, and 2,125 in 2005.
Each year, thousands more adults would benefit from a heart transplant if more donated hearts were available.
In the US, 74% of heart transplant patients are male (whoa.); 68% are white; 20%are ages 35-49 and 55% are ages 50-64.
Survival Rate: As of June 2007, the one-year survival rate was 85% for females; the three year survival rate was about 76%, and the five-year survival rate was 67%. Our docs have said that these have already improved. That is what is so encouraging about these numbers. They are old numbers. There is not enough history to go on for say a 25 yr expectancy, because 25 yrs ago, they didn't have near the knowledge they do today. The data that is being used to determine the 5 yr expectancy is 5 yrs old. There is new data today, and this Field is continually learning.
Currently over 95,000 men, women and children await life-saving organ transplant (heart, lung, pancreas, kidneys, liver and intestines).
Every organ and tissue donor can save and enhance the lives of up to 50 people.
Green is the official organ donation awareness color- Go green.


The actual transplant - what I thought was fascinating:
1. Is the entire heart transplanted? No. When I thought of a heart transplant, I thought of the docs putting in a heart, and connecting the tubular arteries, not unlike installing a new radiator. In fact, this is not so in the text book transplant. The back walls of the left and right atria will stay in the recipients body. You could say that it isn't an entire (intact) heart that is received. So, the surgeon actually cuts away the front part of the heart, leaving the back. Pretty wild.
2. How do they stop the heart? By injecting a chemical solution into the heart.
3. How do they fuse the breastbone? With steel wire. (Mimi has had staples for her surgeries though.)
4. How do they start the newly implanted heart? I pictured two wires touching the heart and giving it a shock. Not so. Warm blood begins to flow through the heart (by aid of the heart lung machine) and the warmth of the blood should "wake up" the heart and stimulate it to start beating. If this does not occur, it may be necessary to start the heart using an electric shock (defibrillation). Once the blood is flowing through the new heart normally and without any leaks, the heart-lung machine is disconnected and the chest incision is closed
5. Do they always close the chest after heart transplant. No. It is actually uncommon to close the chest in an infant, due to swelling and the need to leave room for expansion. In an adult they do close the chest. Mia had extra room in her chest cavity due to the large nature of her native heart, and therefor avoided a followup surgery by having her chest wired shut after transplantation.

Doesn't that blow your mind!?

I thank God for revealing his wisdom to mankind. Truly those that worked on Mia provided a miracle. Just wait until you see her chest thumping with that new heart inside.

Healing


Mia is doing well and seems to be resting. She has built up in immense resistance to pain meds. The nurse on duty told us that the nurses call her rock star. At first I was thinking it meant that she was tough or well loved, but then realized that it's because she can handle large quantities of drugs and still maintain a level of alertness. Mimi is the same way. It happens when a resistance is built up from having strong pain meds for long periods of time.

I was up in her room until about 2 a.m. last night just enjoying watching her toes and feet flex. What a gift we have been given. One thing that Mia does is put her right fist against her cheek. I think this must be the best thing she can do for comfort. She also will randomly start sucking on her lower lip-we could watch this for hours. A parents love for a baby is a powerful thing.

In a few hours they are going to remove the second of 3 draining tubes from Mia's chest. This one goes all the way up to the top of the incision (by the looks of the x-ray) so I'm sure she will be much more comfortable with the tube out(this is no small tube). Then we will have one more drain tube to go. They started her on a very small amount of milk this morning. They are also beginning to ween her from the ventilator by turning it down in small increments so Mia takes more of the workload. It is amazing how everything changed immediately after surgery. Heart rate down, saturation great, no more fevers. One miracle after another!

Nov 11, 2008

Day 2

Mia is doing Wonderfully!! My brain still cannot grasp the fact that it isn't her native heart beating in her chest. I feel like I have been walking around in the twilight zone all day. I am still quite sick- I can't figure out why my body is taking such a hit. There are so many emotions to deal with...mostly gratitude. Here are a few things that happened today-

My wonderful Aunt Lani made cookies! My sweet aunt has done so much for our family. Mia is so lucky to have such a wonderful aunt with such a culinary talent. The staff sure are enjoying them. Thanks Lan!

Sweet baby girl getting her very first post transplant echo. I have felt her new angel heart many times, it beats so perfectly!
It was crazy to see the new heart anatomy on the screen. I almost couldn't believe it! I have been watching echo after echo of a completely dilated right and left ventricle. Now, everything looks like it should. I did learn from the echo that she will always have a part of her stent that was placed in her PDA.
They took the dressing off today. I didn't know she would be all stitched up(they used glue before) but she has 26 stitches. For everything that went on inside that tiny body- it looks amazing!

These are the lovely echo ladies. Lara (on left) did a majority of Mia's fetal echos. I remember going in week after week fully expecting a miraculous recovery. She was always super sweet when Mia's heart looked the same as it did the week before. I love all the staff at NWCHC! If you are reading the blog- can you believe we made it??? Right after Mia was born she transferred up to Childrens. It has been nice having a friendly face that has known us from the true beginning of all of this.

To say that I am overwhelmed does come close to how I am feeling. There needs to be a new word for way beyond overwhelmed. Mia made it! I think this is why I feel like I am going to faint every five seconds. Praying and hoping, and enduring everything- and then within hours it's here. I am still struggling to process everything, but there will be many more posts to come.

A few hours ago she opened her eyes- and looked at me. It was the most joy I think I have ever felt.

more to come....

Nov 10, 2008

Our Best Day Yet

This picture was taken an hour before Mimi got the call.



Here is Mimi getting in as much time holding Mia as possible before they take her away.



Dad even got to hold his sweet baby before she had to go.


Mimi is giving Mia a last minute pep-talk before the big event.


It will never matter how desensitized we get from all the tubes etc, but it will NEVER be easy to wheel our baby to the Operation Room. And even more for a transplant.


This is moments after Mia returned to the room. The first time we got to see her. She had a really great (low) heart rate and her saturation levels were on the money.


This is our baby Mia with her new Angel heart. She looks so great. Her new angel heart feels entirely different beating in her chest. She is pink, and beautiful!


Here Mia is after surgery. She is now giving Mimi a pep talk. Between the anxiety and stress of the surgery of Mia,for the loss that another family- who is suffering somewhere, and for all the other moms with babies still waiting here in Seattle, she has just been feeling ill. I think a good nights rest will do wonders. I think we have both experienced every emotion possible today. Mostly we are in awe at the miracle that took place, and that transplantation is even an option. We are so happy, and so relieved. We are so grateful to the donor family, and their willingness to give. Our nurse tonight gave some really good insight. She mentioned how wonderful a feeling it is for a donor family to know that even though having suffered a tragic loss, that part of their baby is living. Their baby's heart is alive and beating and will be doing so for years to come. She mentioned that it is healing for them to know magnitude of the gift they were able to give. This gift is something we will never take for granted! The healing effects of selflessness and service are always present.



An enormous thanks to all the nurses, surgeons, pilots etc who did a wonderful job today. It was touching as the doctors almost seemed giddy after surgery. They were so happy about the condition of the new heart and that there were no hangups. I know that they have to feel so much joy in giving such an amazing service to babies and in turn to couples like us. We waited so long, and we could tell that they are truly happy for our blessing today.


Here I am with my mom. Her mother/my grandmother, passed away today at noon, just a few minutes before our baby was out of the Operating Room. I didn't find out until tonight and I have had many different thoughts flood to my mind. The first of which is my wonderful grandma holding this sweet angel baby that has given Mia life today. Grandma was a true Christian her entire life. I know that she is watching from above. She was always so good at watching after us kids, I know she still is. I am sad to see her go even though she has declared for months that she was ready to go and to be reunited with Grandpa. She led a life that was filled with service to others, and I think that when she was unable to give any longer, she decided that she was finished with her work here. She actually cared for my grandfather for years, while he had severe Alzheimer's, and while she couldn't even walk without a walker. I can't believe she is gone, but I am happy she is in a place of rest. I know that grandma will hug a baby this day, as she will rejoice with her husband and son who have gone before. I know that grandma will stand by Mia's side along with other angels to give comfort in the days to come. (I was brought to tears a few days back when my sister Anne commented that angels were standing by Mia's bed), so I know they are there. Grandma will continue to live on through her family as we have all been influenced by her example. Love you grandma. Thanks for showing us the way. I can remember from the time when I was just a boy when you would tell me that one day I would be the one to pick you up in my arms and carry you when you were too old and weak to walk. I hope I did enough to carry you in your last days. I will miss you until we meet again.



As we head into the next and more rewarding leg of this journey, I have to thank all who have given so much support. I know that Mimi and myself have been moved to tears many times over by the wonderful and inspired words of others as you have made comments to us as well as on our family blog. We have rarely had to stand on our own through these tough months. There is no method to sufficiently express our gratitude, but I will say again, that the inherent good in people has become more and more evident. All of the family, friends and strangers who have lent their shoulder, words, prayers, time and efforts. You have changed us.

King 5 News

Watch King five news from 5 to 6 tonight and see our baby! A few months back Amy, from King 5, interviewed us and has been really sweet as she has followed our story ever since via the blog world. She called me a couple of hours ago and let me know she is doing a short follow-up piece of our sweet babe. There won't be any pics from today unfortunately. I imagine she will use a couple of pics from before and give a report on her status. Thanks Amy for your kind words and your prayers.

Mia continues to look great. Will post some pics soon.

Spaghetti

Mimi said that the tubes all over Mia look like spaghetti and they do. There are a lot of them, but I think our tolerance to the shock of that part has increased. We are just happy to see her doing well. It will be a bit of a roller coaster for the first year, but they say the first week is critical. At this point we are looking forward to a roller coaster of improvements. At least now each step back will be a few steps ahead of any previous setbacks. We are so elated that she can now actually improve!

We just learned that the donor heart blood type is B, and Mia's we know is A. This won't pose a problem with a baby, and they confirmed that Mia hasn't built up any antibodies against A type blood pre-op.

So she looks good. All the docs and nurses are really kind and excited for us, which makes it nice. We can now see the end of this leg of the journey.

a GREAT Heart

Dr. Cohen said that Mia's hear is great. Not ok, and not good, but she got a great heart. The doctors have all said that it looks like a good stong heart. They had a relatively easy time prepping her as well because there was such little scar tissue from the hypbrid procedure that had been done.

We are waiting in her room for her now. She should be another 20 minutes or so. They are sewing up her chest cavity, which isn't typical. Normally the chest is actually left open due to swelling. The space where they took out Mia's over sized heart has lots of extra room since her heart now is substantially smaller. We are so relieved and so excited!

The heart is in and beating

As of 10:00 the heart is in and beating. It took them an hour to put the heart in and get it beating because at 9:00 they had called to say that she was prepped and that the heart had arrived. Truly amazing. We are so excited. She will be out of surgery in an hour and a half.

The kids have been really cute as usual. I was trying to get out of the house last night and told the kids that Mia was getting a new heart. They were like, "yay, Mia comes home tomorrow!" I had more explaining to do.

This morning Jensen was excited
Mimi: Your baby sister got a new heart today!
Jensen: She did!? (really excited voice)
Mimi: Yep she got a new heart!
Jensen: Oooo! Can we go to the store and get her lots of toys?
Mimi: Of course.
Jensen: Can we go to Target?

Off to surgery

At 6:15 we wheeled Mia off to surgery. We are so happy, and so nervous. I don't think Mimi is going to be able to go back to sleep, even though she has only gotten 3 hrs. The anxiety.

The surgery will take 5+ hours.

Update #1

We will try and keep posting as we go through the next few days. Currently Mimi is holding Mia who is sleeping peacefully. A good friend came up and together we gave Mia a blessing. I felt a great peace come over me. Here we will wait as we trade off holding our Mia until some time before 6 a.m.

Francisco is the surgeon currently in flight to get the heart. He will be back in a few hours and we will then be on the road to recovery. Finally!

Yes, I was in a accident on the way over. I was only 5 minutes away from the hospital when a guy made a left hand turn right in front of my. I smashed right into him. I actually had a pleasant experience. I hopped out of the car and informed the other driver "you gotta yield on a green light buddy." He was actually really nice and told the officers the truth. Did have to holler at the gal on the 911 call. She was crazy mean. My truck has minor damage to the front bumper, but the other guys Mitsubishi was mashed. Probably the only time I will ever get in an accident and not care one bit. I did enjoy the irony in those seconds as I was skidding into the guy.

Well, keep the prayers coming and Mia just looks so good and strong today. She is ready. I know that we have had to struggle so that the road ahead will seem easy.

Nov 9, 2008

Our prayer has been answered

We got THE CALL a few hours ago.... my heart has been racing ever since!!! I feel like I just won the lottery- only this is a million times better than that!! They are busily drawing blood, doing X-rays.... AAAAhhhhhhh!! I will explain more later.

She will be getting a heart from another blood type- this is pretty much all I know... and that she will be in the OR around 6:00 am.

Please pray for my girlie- and please pray for the wonderful family who has made such a selfless decision.

Someone will be giving updates as the morning progresses- I love you all!!

Oh, I just got off the phone with my husband. He was in a car accident. GEEZ louise!!! He is fine, but I need him here NOW!

Wasatch Wasps (clap, clap, clap, clap)


To all of the class of 99 (well the ones who read this blog anyway) We are looking for you!! Our reunion is coming up and it is going to be RAD! We are starting to form committees for our fantastic, wonderful reunion. Can you believe it will be TEN years this summer? I can't. My plan is to get as much planning out of the way while I am chillin here in the ICU. When Mia gets her heart I will probably be relying on those of you who sign up to help. (no pressure) ;-)

If you want to help go HERE and let me know. There will also be a face book group for all you facebookers- I don't know much about it, but I hear there are quite a few alumni. So watch out for that. We are going to be compiling a reunion book- so get ready to send in some bio information. Whoo hoo for the Wasatch Waspsessss !

*If you have already attended your 10 year reunion, what was your favorite thing about it?

Nov 8, 2008

4 Months Today

It's true. She is four months old today. Fun or no fun, the expression "time flies" does not apply here. I feel like Mia was born years ago. Last night I was thinking about how different my life was four months ago. When we were in the hospital waiting for Mia to enter this world, we had no idea how things would play out. I knew it was going to be a rough road, but all of my fears were about post transplant. Can she go to school? Can she play sports? Can she have babies of her own? All of these questions have been put on the back burner. I really was not anticipating the torture of watching her day after day working so hard...clinging to life...waiting for that second chance. Lately I have been soothing her (she does not appreciate the breathing tube) by holding my hand on her chest. It's incredible to feel her heart. Her heart seems so close to the skin, you can actually feel the muscle vibrating. Every time I feel her heart I am reassured by how much it is working. Her heart is working so hard... working every second of every day to keep her here.

There are times I wish I could flash back to four months ago, and enjoy the peace. How different my life was, easier...but not better. Mia and her fight have brought me to a place in my life, that now that I know what I know, I can never go back to the person I was before. Life as I knew it is gone, and will stay gone. The heartache is real, the hope is real- both levels of which I have never known until Mia.

Sometimes I feel like life needs to stand still, that everyone needs to stop what they're doing and realize the magnitude of what is happening to her. Why is everyone still enjoying life? Don't they know? Mia is stuck right where she is, unknowing of how wonderful life can be. Since her birth so much has happened outside of the hospital. Athletes have won metals at the Olympics. There is a now a new president of the united states. Historical events continue to occur, life continues for everyone...while one tiny baby has no choice but to wait.

This girl could not possibly be more of an inspiration to all around her. She has proven that miracles do occur. We love this little girl- and look forward to the day when she be able to come home with her family. I know all of your prayers are keeping her strong. Please continue to pray for her. You made it FOUR months Mia! We Love you so much!

Nov 6, 2008

Hallelujah



I got to HOLD her today!! My heart is soooo happy! We had a nurse who decided to put the doctors in their place. She has a reputation for doing so- so we were happy to get her today. Mia did wonderfully. Now, maybe they will be a little more relaxed- because they know she can tolerate it. I love this kid!!

*we really have a BA- zillion pictures like this... so get ready for more ;-) You can barely see her face right now... this one is much better! Isn't she stinking darling??? Just had to share my tidbit of good news.

Nov 5, 2008

I'm Glad you asked


There have been an onslaught of people wanting to help out our family and raise money. Thank you so much!!! Here are some questions I have received via email- just thought I'd post them. Mia is having a great day- she smiled at me today and is melting hearts near and far. So... here's the Q & A so far- feel free to ask away.

* If I'm understanding what I've read, then if you have $450,000, then they will put you on other donor lists to help Mia get a heart faster. Is this right?


Mia is currently on the list in region 6. Hearts can come from other regions if there are no babies currently waiting in that region. Transplant hopefuls are allowed to be listed at multiple centers to increase the chances of getting that organ. Due to the wait time, we decided to check out other centers. We were trying to get listed in Denver but they require a deposit of the remainder after insurance. Our insurance is a Washington state insurance which will not cover the cost of a transplant in Colorado. In that case we would have to pay the entire amount up front just to get her listed at that center. Crazy, I know!!


*So my next question is, do you have to pay the $450,000 only if she gets a heart from the extended list, Or is that the fee to just get her on the lists. Are the chances a lot higher of a heart coming sooner if she gets on the other lists?


No, we do not have to pay that amount if she gets her heart here. Yes, we have to pay that to get her listed in Denver… just to get her listed. It is kind of a catch 22 because if we go to Denver a heart might come available here. Denver is more toward the center of the country which opens up the population pool quite a bit, but you never know. That is the difficult thing about this- there truly are no guarantees and no one knows when and where there will be a possible donor. We truly want to stay here in Seattle because we love the doctors and nurses, and we live here. However, I would fly ANYWHERE if we could just get her transplanted. If we did get listed in Colorado and had her transplant there, we would have to live there for at least six months post transplant. It would be the more difficult road for all of us to go to Colorado, but we would do it. The center in Denver transplanted their A1 status, the same blood type as Mia a couple weeks ago.


*Next Question: So right now Mia is on the Seattle Donor list. Does this mean she can only get a heart from Seattle? If she gets on the other list, where can she get a heart from?


We are in Region 6. You can look on UNOS to find out which states are in which region. If listed in Denver, it is a completely different region. The heart can be out of the body for six hours. Hearts can come from different regions if there is no one waiting in that region and it can get up here in time.


*Is she currently #1 on the list in Seattle, or does it just go by whatever heart matches? How often do hearts come?


Mia is first on the list for her size of heart. Because her heart is so big she can accept a larger heart. She is second on the list for bigger hearts. There really is no way of knowing when a heart will come. Some babies wait 30 hrs, and some wait months…like us ;-) Parents have to be willing to donate, and it has to be a good strong heart. Currently there are 7 babies waiting for a heart here in Seattle- if there was a heart it would go to the baby with a blood type match first. Even though Mia can accept a heart from a different blood type, it would go to the matched type before it would offered to her.


There is no hard and fast rule on when hearts are available. One of the coordinators told me when Mia was born that the wait time is usually somewhere between two and four months. Some babies have to wait a long time. We live in the corner of the United States which limits the radius. Someone could argue that it might be better to be listed here because the lower the population the less demand for transplants. That would usually be the case, but right now there are seven babies- which is a lot! All of the information is available to the general public on UNOS- you can look up wait time, blood type, age- it is very interesting.


Please feel free to ask- the more people know about Organ Donation the better :-)




Part II:

We are so overwhelmed by the generosity of so many. I am amazed by the willingness to give of time and talents on Mia's behalf. In an effort to plead our case, I want to clarify so there is no misinformation circulating as to what our needs are exactly. As far as I know nothing false has been posted concerning Mia. We aren't currently pursuing a heart from another state, and even though all the donations that have come our way will still be needed for Mia and her heart transplant related needs, we can't put a number on what our needs are exactly. The reason we aren’t pursing a listing out of state is because if were were listed there, our insurance wouldn't cover any portion of the transplant, and transplants typically can cost into the millions. The extent of Mia's needs are unknown. Her health will always be fragile and her medications will always cost us a lot out of pocket. She may visit the hospital as a patient every month for the rest of her life, or she may come home and prove to be a relatively healthy heart transplant recipient. There are too many unknowns at this point. There are expenses that we currently face from her care, that were above and beyond her insurance coverage. She was life flighted one time and we don't yet know what that cost will be. We have two children who need the help of a nanny daily. There are transportation costs from driving to and from the hospital. At this point, this is what we know. Our insurance will only cover a transplant maximum of $250K. Childrens Hospital has awarded our family some financial help with various hospital expenses. We are always working toward ways that we can be granted financial mercy by those who care for us while we rely on the generosity of our friends to care for our older children on a daily basis to save the nanny money for other things. We are carefully spending and striving to explore funding options to the best of our ability. Any generosity that is extended to our family as a result of Mia's situation is appreciated and applied to those areas of our financial lives that are affected by her medical needs, as listed above. I did not list all of the things we face during this time, nor can I possibly foresee what the future holds in relation to any of my little Mia's health concerns. It is my greatest wish that she gets a heart. If your generosity for Mia is financial, rest assured, we will need it and we will use it for her medically related needs.


If your awareness of Mia’s situation leads you to advocate for organ donation awareness, or to help those who currently aren't registered to donate life, to do so, I will be forever grateful. No one can put a number on the value of the gift someone can give by donating their healthy organs and tissues to those who desperately need them.