Thursday, July 29, 2010

Is It True?

Yes! It is true! Mason's biopsy (#7 in less than 4 months, wow!) brought us GREAT NEWS!!
Yes! It is true! His results were a BIG BEAUTIFUL ZERO!!

Today my heart is happy and my eyes tearful with joy and gratitude.
It is true..... MIRACLES continue to bless Mason's life and ours!

It is true..... PRAYERS are answered (sometimes requiring great patience).
Even our darling little Ammon prays every night, "Thank you Mason's new heart. Help it work."

It is true..... this is only yet another milestone reached with still many more that lay ahead.
But, a huge mountain we have climbed so far! Every milestone is a huge victory in our journey!

Every milestone accomplished gets us closer to a healthy little boy running around with all the other kiddos! It is true..... Mason is a Miracle!


Mason was very happy to reunite with our little Lego wagon at home.
He loves to sit in it and have the kids pull him around the house.

Besides continued tweaking of Mason's meds he is doing pretty good. He hasn't had much of an appetite but hopefully as he can begin to come down on some of his meds due to yesterday's great biopsy, his tummy will feel better. I'd feel yucky if I was on 38 doses of medicines everyday too!

He LOVES being home and being able to play with his siblings everyday. And they love having him home too! Being home is great, although as Mom sometimes I wish there was more of me to go around.

Say a prayer of thanks tonight for us as we celebrate this great milestone. ZERO. Another true miracle!

Saturday, July 24, 2010

What Makes Mason Smile?

........and his baby blues sparkle?

Mason and I sure LOVE being HOME with our family, but I certainly don't have much time to update the blog!!!

Mason is all smiles while playing with his brothers and sister (and Daddy too of course). It is so great to see him following after them, (doing his bum scoot of course), and be able to keep up! With his old broken heart he would tire out after not very long of trying to keep up with "the crew". When he wants sister's attention he calls, "Kaaaaalin" and when he wants the boys he calls, "guuuys" or if wondering where they all went he'll ask me, "da guuuys?" (asking, "where'd the guys go?"). I love to see his beautiful baby blue eyes sparkling and his smile so big here at HOME!

Mason is NOT all smiles right now to most people outside of our little family, even extended family who he knows and used to smile to see. I just hope this will take a little time. He had some separation anxiety before we went to California, but now it is quite severe. Poor little man has been through so much in his 2 1/2 years of life that I definitely don't blame him, but it makes me sad to see how he fears so much now.

Mason is NOT all smiles to visit the transplant team at Primary Children's either. They were so excited to welcome us back a week ago Friday (and we went this Thursday as well, which will be our normal clinic day) but Mason did not act so excited. Nothing against the great team here at Primary's, but he's not ever excited to get blood draws, EKG's or echo', he had just recently started feeling more comfortable around our team at Stanford's Lucile Packard Children's Hospital. After almost 5 months he had started smiling at just a few of them and giving "high fives". And then, we left to come HOME.......adding more confusion to Mason's life.

Even if Mason didn't act excited, I was happy to be kindly welcomed back to the cardiology dept. here. Lucille Packard's CVICU, 3 WEST, and Transplant teams became our fiends and family while we were there and I will forever be grateful to how wonderful they were to us. But, at the same time it is nice to be back doing our clinic visit's at Primary's for they are the ones who have known my baby since 3 days old!

I pray Miracle Mason can over come his separation anxiety and all the fears that take away his beautiful smile around other people. I know it will just take TIME!!!

How is Mason doing?
Since we've been back home his echo's have been beautiful, proving his new heart to be ever so strong. His EKG shows normal rhythms as well. But, we're still having trouble getting his Cyclosporine levels correct. One day it will be way too high, and then with a very slight adjustment in his doses, four days later it will be way too low! The docs all say some kiddos metabolize this med differently everyday with no rhyme or reason, and that would be our Mason of course! This is requiring Mason to have 2 to 3 blood draws a week. Yuck! At least he has a port for blood draws which makes it much easier, but he still hates it. It's still a poke!

Next week: Biopsy #7 on Wednesday at Primary's. IVIG infusion on Thursday at Primary's (that's the 12+ hour long treatment!) Praying for ZERO rejection on #7!

Have a great weekend! Happy 24th of July "Pioneer Day" to you fellow Utahans out there!

Saturday, July 17, 2010

Home Sweet Home

We made it home!!!!

This picture was after our arrival to the Salt Lake Airport
as we reunited with our family on Wed afternoon.

The hustle and bussel of packing to come home, saying goodbye to our friends at Lucille Packard (CVICU nurses & docs, 3 West nurses, and the transplant team), saying goodbye to some of our friends in Palo Alto, taking care of Mason's last appointments and gathering all of his information to bring back to his doctors in Salt Lake........left me little time to get emotional. But after boarding the plane, wiping down our area w/ clorox wipes, and getting Mason comfortable for the flight, my tears began to flow almost for the entire 1 hour and 30 minute flight HOME.

Two days shy of five months ago Mason and I had said goodbye to our family not knowing how long it would be until we returned. Mentally I had prepared myself for 12 months ("hope for the best, but prepare for the worst" ........ and 12 months is not even near the worst length of time that families have relocated to wait for an organ transplant). As we had said goodbye at the security gate that night the fear of the unknown got the best of me. My tears began then and continued for several days. At times I would muster up enough faith to hold my composure, but spent many times a day on my knees pleading to my Heavenly Father to reassure me that I had made the right choice for our Mason . I would plead in my heart praying to my Father Above through out the whole day to comfort my family at home, to help them know that even though I'd left them temporarily to help Mason, I still LOVE them just as much and more!

You all saw the ups and downs of this Transplant Chapter of Mason's "Broken Heart Journey", but yet witnessed with me the miraculous way everything just fell into place. You have truly witnessed with me MANY tender mercies of our Lord sent down upon Mason and our family. I know with certainty that the Lord's hand was there preparing and making Mason's new chance at life possible. He was there during Mason's surgery calming the hands and minds of his surgeon and doctors to be very precise in all they did.

As I cried tears of joy and victory on our flight home. As I cried tears of gratitude for blessings of miracles that have been gifted upon my sweet baby. As I cried with excitement to go HOME to our family.......I began to cry for our special donor family who at this time I'm sure still mourns the loss of their dear child. Here I was crying with happiness that Mason had beat the odds and I was bringing him HOME a new beautiful healthy heart, and some where out there our donor family still cries because they miss their angel who has gone home to heaven. I said a prayer to help comfort this wonderful family, as well as thanking Him who made all this possible. Him who carried me at times of complete exhaustion and heart break. Him who has been so good to me.

Here are a few more pictures from our preparation
and arrival to our Home Sweet Home:

I borrowed a scale at the RMH so I wouldn't go over the 50 lb
weight limit this time. Mason was so excited to sit on it and
scoot around the floor with it just like he use to at HOME.

We came home to a huge sign on the garage from a dear friend,

signs made and put up by my darling and excited kids,

and the outside of the house and yard adorned with
yellow ribbons and balloons (Thank you Vick family).
What a great welcome back and homecoming!!!

If I tried to thank everyone who has helped our family the last 5 months (well, really the last 31 & 1/2 months since Mason was born) I don't think I could fit the list in my blog! Seriously, there have been so many family members, friends, neighbors, church members, and strangers who have served us in various ways I wouldn't even know where to begin. But, THANK YOU FOR EVERYTHING and most of all for your PRAYERS and LOVE!

I will try to update about Mason's progress at least once a week.

Goodbye, until next time.

Tuesday, July 13, 2010

Feels Like a Dream

Yesterday's appointment went great!

Mason's lungs look much better.

We were given permission to go HOME!

This Friday, July 16th, will be exactly 5 months from when we began our huge "LEAP OF FAITH", the chapter of Mason's journey when we said goodbye to our family to go get Mason a NEW HEART!

Walking by FAITH it has been for certain, accompanied by a lot of HOPE and BELIEF IN MIRACLES!

With many bumps in the road, lots of twists and turns, we acutally accomplished what we set out to do and now we are ready for our next chapter: Home With a New Healthy Heart.

Feels like a dream!

The next time I post hopefully will be from our HOME in Utah.

Please pray with us that upon arriving home Mason can stay healthy and continue getting stronger and stronger.

Even though Mason and I have been here in California away from our family, we have never been alone:

"And whoso receiveth you, there I will be also, for I will go before your face. I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you to bear you up." D&C 84:88

I love this dream!!!

Sunday, July 11, 2010

Prayers for McKay

One of our little buddies, McKay, from Utah is in need of some extra prayers. He and his parents are back in Phildelphia at CHOP where he had his third open heart surgery, the Fontan, on Friday. He had his first 2 surgeries at Primary Children's like Mason. McKay and his sweet MaMa Mindi have cheered Mason on and sent many prayers our way during this last year. Now it is our turn to send prayers their way for a smooth and quick recovery.

You can do it McKay! You are a Sweet Heart Super Hero!!!

Saturday, July 10, 2010

Twists and Turns

Mason has made it up and over another seed bump, another twist and turn in this chapter of our heart journey. Hooray for Mason!

We came home (well, to the RMH) from the hospital this afternoon. Thank goodness for a short 3 1/2 day visit. Mason's viral test and bacterial blood cultures came back negative. His white blood cell count is trending back down towards normal (meaning infection is getting better), his lung x-rays show a slight improvement, and his cough sounds much better. The assumption is that he has some bacterial pneumonia in the lower lobe of his left lung. We caught it in time with the 3 day course of IV antibiotics before it got into the blood steam (when it would have shown positive on blood cultures.)

Frequent infections in Mason's left lung because of his pulmonary vein stenosis is a concern we had going into this transplant, but our doctors here are not very concerned. The frequency should lessen significantly as Mason is able to come down and then off of steroids. And, as we saw this week and quoting one of our transplant docs, it is something "easily treated". I'll take dealing with this any day over Mason in his old state of heart failure and frequent sicknesses that would just about send him over the edge!!!

Going HOME will make keeping Mason away from germs even trickier, but as long as we do our best we hopefully can keep Mason out of the hospital and infection free.

Speaking of HOME, we will get the word on Monday. Mason has a blood draw, chest x-ray, and clinic visit w/ Dr. B. on Monday. If his lungs look good (or much better) and his white blood cell count continues going down we should be able to board a plane and head HOME to Utah within a week.

Thanks for all your prayers and positive thoughts to help Mason get over this bump in the road. I will leave you with this thought for the weekend:

"...our lives are made
in these small hours
these little wonders,
these twists & turns of fate
time falls away,
but these small hours,
these small hours still remain"
~Rob Thomas~
(Chorus from his song "Little Wonders")

Mason's journey has always been full of twists and turns, yet miraculous wonders in many ways. I truly believe Mason's fate is the plan our Heavenly Father has for him, yet He leaves room for our choices along the way. The hardest choices in this heart journey are hopefully behind us.......but certainly more twists and turns lay ahead. All these twists and turns I can handle, for I now have HOPE that many years remain of special small hours with my baby, my Miracle Mason.

Thursday, July 8, 2010

Not As Planned

Mason had transplant clinic today. We went planning to find out if and when we could go HOME, meaning really HOME to Utah, but it didn't turn out as planned. It definitely didn't turn out as we'd all hoped!!

We ran into a speed bump!

Instead of packing our suitcases to board a plane this weekend I packed us a suitcase to spend a few days at the hospital! What? Really? Yes, Mason was admitted this afternoon because he has a new nasty cough, an elevated white blood cell count, and a chest x-ray showing hazy, junky lungs. We're not sure if it's pneumonia, para-influenza, or something else, but Dr. Bernstein wanted to start IV antibiotics ASAP to kick whatever it is before it gets worse.

This is just part of what happens when my sweet little babe is so immune suppressed. He is still on very high doses of steroids because of not getting "ZERO" biopsies. This combined with his other anti-rejection meds completely wipes out his ability to fight off infections.

The good news is:
  • Mason's ECHO looked great today.
  • His O2 sats remain 97-99% even with this infection.
  • The antibody results from last week's test were good enough to allow us to go HOME.
  • As long as Mason's lungs clear up and white blood cell count goes down we will go HOME very soon, just not as soon as this weekend (which we'd secretly been planning!!!)

Please pray that Mason will get better quickly and we can go HOME to our family. Love and appreciation to all of you who continue to support our journey.

Sunday, July 4, 2010

3 Months Ago Today......

....Mason received the gift of life. A day a mother, who had been told just 10 months previously that the weeks left with her baby here on earth were numbered, will NEVER forget. There were times I gave into the reality that had been presented to us back then and cried for hours, but I always kept a glimmer of HOPE in my heart. I was not ready to give up! I knew Miracle Mason still had a mission here with us. I'm so grateful for those who supported my hope, prayed for miracles, let me cry on their shoulder, and BELIEVED in our journey.

I love you Miracle Mason with a mother's love that words could never express. You have taught me to HOPE, have FAITH, BELIEVE, and NEVER GIVE UP. You have strengthened my belief that Heavenly Father hears our prayers and that miracles indeed happen! Happy 3 months birthday to your Angel Heart! Love, Mom

Happy 4th of July!

I'm grateful this day for living in a free country. I'm grateful
for the freedom of many things, but especially religion. I was thinking today that in many countries people probably don't have the freedom to donate organs, let alone pray to the God they choose asking Him to bless their child with a second chance at life. And, asking Him to comfort the family who has sent their child Home to be with Him, and yet they thought to donate anonymously to save another child's life. May we all be grateful for the many blessings we have living here in a beautiful free country!!!

Friday, July 2, 2010

Look Who's 31 Months Now!!

At 31 months:
Mason weighs 25.5 lbs (that's all cheeks I think!),
loves playing w/ cars, balls, and looking at books,
favorite place to go is to the park to go on the swings,
least favorite place to go is the hospital (wonder why?!),
cruises furniture, but not quite walking yet (we're working on it),
must have his favorite blanky everywhere we go now,
talking and mimicking new words more and more each day,
and he is most happy when he's with his family!!

Here are pictures of the week (including Father's Day weekend)
that we all spent together and Mason was ALL SMILES:

Thanks to donated tickets and tips on great discounts we did
many fun things! I armed myself w/ Clorox wipes, hand sanitizer,
Mason's masks (especially for anyplace indoors), Mason's meds,
my camera, and off we went to make memories together!! When
I would let Mason go on a ride, slide, swing etc...I'd wipe it off
to sanitize it first, getting many weird looks from people- which
makes me think I should design him a shirt that says in real big
W/ GERMS! (don't you think that would be a good idea?!)

Kaitlin, Sammi, & Ammon

"I want out!"

Very happy to finally have a turn on something!


Kaitlin & Ammon

Kaitlin & Mason

A Visit to STANFORD CAMPUS found us at a
beautiful water fountain to throw in wishing pennies.
Ammon only had one thing in his mind.........getting in the water.

Here's Sammi trying to keep him out.

But, the second we turned our backs, he went for it!!!

Kailin threw off her sweater and went in to get him!

Ammon was very happy that he succeeded in getting all wet!
Mason thought it was very funny too and his laugh is so absolutely
adorable it made it difficult for me to get mad at Ammon!


Braiden, Ammon, & Daddy

I had to get a picture of this sign because of all
the speed bumps we've ran into on this journey!!!


Mason was in charge of this jeep ride w/
Preston and Braiden.

"Happy Father's Day" weekend to Mark!
We were very grateful to all be together.

Preston, Ammon, & Braiden

A visit to the wharf in SAN FRANCISCO
Sammi and Kaitlin rode a ferry over to see Alcatraz island,
while Mark and I took the 4 boys to the Exploritorium.

Preston and his invention

Braiden and his invention

Ammon found lots of fun things to do........of course!

Mason was very good about wearing his mask.
What a Good Boy!

Fun Times at the Park

Mason was very warn out by the end of the week!!
But, we had a great time!!!!

Thanks for celebrating 31 miraculous months with us,
as well as all your prayers that have helped us get
this far in our "Broken Hearted" journey!

***PS. Toward the bottom of the right column on the blog I have made a link list of all the companies who donated items to Mason's fundraiser. Please check it out! Thank you to all of you who made the auction possible by donating.