Monday, November 30, 2009

HAPPY BIRTHDAY MIRACLE MASON!!!


Happy Birthday Mason, our miracle baby! Wow you are 2 today!
Weighing in at 21 lbs........2 open heart surgeries, and many, many
other medical procedures later you've come a long way! You
were a beautiful little newborn baby, who came 3 weeks early,
weighed in at 5 lbs 5 0z, but had a slightly bluish grey coloring.
Little did we know that coloring was due to your heart condition
that would change your life forever (and ours). We had assumed
you were just quite bruised from your fast delivery into this world.

We were wrong about that, but we wouldn't trade you or the
lessons you have taught us this last year for anything!! (Well,
maybe now I would trade just a little bit of my heart ache
for a new heart for you, Mason! So, you could run and play
with all your siblings and cousins!!!)



This picture was when we brought Mason home the evening
of Dec 2, 2007. He was 2 days old and was held by each
of his siblings, which was dearly cherished later....when he
ended up spending the next 7 weeks in the hospital.




It was time to change Mason's O2 stickers and canula so I
snapped a few cute pictures of him riding his little horse.





Ammon is giving Mason some loves on the bean bag.
But, Mason seems worried he might get pushed off!




Mason still loves drinking water these days, just not a whole lot
anything else! Too bad I can't add some calories some how.



Not walking yet, but still loves jumping in his jumper.
His legs are finally getting some chubs, and getting
stronger too. He'll walk when he's ready.



Mason is taking it easy here, on Thanksgiving Day.


Mason and Daddy on Thanksgiving at Grandma's house.



Preston and Braiden are always looking for ways to
entertain Mason. He was pushed around in this cutie box
for hours. He laughed and laughed the whole time.


Here is Mason saying "rah". He does this all the time.
He thinks he is scaring us. He also does this late at night
when he should be sleeping...but he is saying
"come on, it's play time"!!


Mason loves talking on the phone. And he also found
a new spot in the house where he likes to sit
since winter hit Utah....on top of the heater vent.



A true 2 year old. If you notice the pencil he's chewing on...
before he put it to his mouth, he was coloring with it on the wall.

I want to thank Mason's Grandmas on this day also
for all their help they give our family:

Mason and Grandma Marilyn (Mark's Mom)

Mason and Grandma SanDee (My Mom)



Mason is always smiling!


Mason is sitting at the bar doing homework with the kids.

Dear Mason,
I want to tell you how much I love you!
It's more than words can express. I am so grateful to
our Heavenly Father for allowing me to be your
Mommy. I am so so happy this day has come to
celebrate with you your second birthday! A few months
ago when your prognosis was quite grim and devastating
I cried night after night not knowing if we would still have
you here on earth to celebrate this day! As I look back over
the last 2 years, I want to thank you for all you've taught me.
I've learned patience, endurance, faith, hope, love, the power
of prayer, and Heavenly Fathers Plan to higher degrees
than I could have ever imagined! I still have a lot more
to learn and I pray that you still have many more birthdays
here with us.....so you can continue to help me learn
life's lessons. Happy Birthday Miracle Mason!!!

Love, Mommy

Wednesday, November 25, 2009

Chest CT and Angiogram Report and Happy Thanksgiving


I'm sorry it has taken me a few days to post the results from Friday's test. Mason is still not his happy self, most of the day, due to his nasty cold. He just wants to be held and snuggled (I love every minute of it...... but nothing else gets done)!


I spoke with Michelle (Dr E's nurse) Monday morning and then Dr. Everett Tuesday morning about Mason's chest CT and angiogram. (What is an angiogram? They put a die through an IV to provide a contrast as the blood flows through the veins and arteries).


The news is: there were no surprises. It showed his left Pulmonary veins as obstructed with no blood flow.......just as his heart cath had shown. At least it showed his right PV's still open with good blood flow. Honestly, down deep I had this hope of the CT spotting even just a tiny bit of blood flow in those left veins. But, I'm not losing hope in CHOP's and Stanford's belief that they can do a heart transplant, just connecting it to his right lung.


It is my understanding that Dr. R from Stanford wanted this test to see if it was the way his heart was laying ,because possibly the heart could be pressing against the veins, thus obstructing them. That would have been nice, but that is not what the CT showed. The results were burned on a CD and over-nighted to Dr R on Tuesday. I am not sure if we will get his opinion of this test before we meet with him at Stanford ( or, really known as Lucile Packard Children's Hospital) next Thursday Dec 3rd.


For now, please continue to pray with us that our sweet Miracle Mason will yet be touched by more Miracles from our Father Above. We do want what is best for our baby, and we will forever know ultimately "what is best" will be God's will...... but I do strongly believe that we have to do all that we can to show Him we are doing our part, have faith and hope in Him, pray like it all depends on us, and then leave the rest in His hands.



On this day before thanksgiving, I want to say there is so much I am thankful for, more than I can list on one page. Although, on this day I do want to say I am so grateful for my family and for the HUGE blessing Mason is to our family. And actually, the blessings each of our 5 children are in our home. I am grateful for prayer and faith in our Heavenly Father and Savior to help get me through tough times I face in life.


Happy Thanksgiving from our family to yours!






Also I need to say a "special thank you" to our friend Tyler who gifted us his frequent flyer miles to pay for our flights to and from Stanford next week. Thanks to Tyler, Mark will also be going with Mason and I. Originally he was not going to because of the cost. And thank you to all of you who are sooooooo kind to our family!

Saturday, November 21, 2009

A Long Friday

I got all the kids off to school and Ammon to Grandma's (he couldn't go to preschool with his runny nose) and left for Primary's a little after 9am. I checked Mason in at Same Day Surgery (even though he wasn't having surgery, this is where you check in for general anesthesia as requested by Dr. Everett)) at 10am.

While we there waiting, the sedation department for most CT's, MRI's etc... (they sedate w/ sleepy meds through an IV) also had Mason scheduled to be sedated by them. So they told the cardiac anesthesiologist who had been assigned to Mason's case that there must have been a confusion and he didn't need to do it.


Mean while at 12:30 Mason and I continued to wait for our anesthesiologist up in "same day", he went home, because supposedly he was done with his cases for his 24 hour shift!


Finally after checking with the nurses at least 3 times about why we were waiting so long..... as poor Mason got hungrier and hungrier (he stopped getting any kind of food/formula at 5am!), a nurse tech took us down to the "Imaging check in". They sent us to sedation, whom I told he was supposed to have general anesthesia ......yikes! At this point I discovered what was going on and was very frustrated! It was now 1pm!!!


After Sedation checked w/ Dr. E , they realized I was right and had to call the anesthesiologist back to the hospital, because all the other cardiac anesthesiologist were busy! NIGHTMARE!!!


By 230-245 he was finally sedated and getting his chest CT w/ angiogram! Which only took 5 minutes. ALL that for a 5 min. sedation ??!!


After recovering from his sedation we checked w/ Dr. E and the CT report wasn't finished yet..so we decided to head home in an effort to beat traffic!


All the radiologist told me was "it went well and we were able to get all the images needed". That didn't give many any of the info I wanted! But at least that means we won't need to do it over again.


I expected a call from Michelle, Dr. Everett's nurse practitioner, last night. But to top off our long day, I received no phone call! Hopefully NO NEWS means NO BAD NEWS!


Thank you for all the text messages, blog comments, and e-mails letting me know we were in your thought and prayers especially for this test yesterday!


I've got to go get Mason who's now crying....he has a brand new cough and runny nose! Darn it....it looks like he's going on round 2! He coughed and cried most of the night. It was a very sleepless night, but I will not complain because I had undivided time with my Miracle Mason. For I still worry and cry often about the unknown..... how long do I have with him here on earth?!


I will post with a report of CT when I get one.


Have a great weekend!
Loves to you from Mason!

Friday, November 20, 2009

Chest CT Today

I just wanted to post a quick update. Mason is feeling much better and his cough is almost gone! Yay! Although, Braiden and Ammon have been under the weather this week with different sickies so hopefully Mason won't go for round two. I can only sanitize my kids' hands, wipe everything w/ clorox wipes, and try to keep my sick kiddos away from Mason so many times in one day.....before they think I'm Crazy Mom!!!

Today, Mason will have a sedated Chest CT W/ an Angiogram at 11:30. This was requested my the doctors and surgeons and Stanford to get a good look at his left pulmonary veins (LPV's) which we found out were obstructed during his heart cath. And to make sure his lungs are healthy (well I guess really only his right lung his the healthy one) and clear of fluid or disease.


We will check in at 10am for his general anesthesia. (Which has to be done by a cardiac anesthesiologist.)


At around 12:30 I will hopefully receive GOOD NEWS! Meaning, NO BAD SURPRISES, and nothing which should give Stanford 2nd thoughts on Mason receiving a new heart going to his own right lung. I may not know everything today. I may have to wait until Dr. Rosenthall at Stanford receives his copy of the CT and angiogram. But hopefully today Dr. Everett and the Radiologist can interpret what they see at least.


Please PRAY with our family this day for a smooth sedation and good news after the CT.


Mason and I will travel to Stanford on December 2-4. On the 3rd we will have different appointments all day including meeting with Dr. Rosenthall about his final opinion on what is the best plan for our Mason.


(If you read a few post's ago that the 3rd of the month has brought us bad luck several times, then you might wonder why we are doing this on the 3rd??!! When Stanford normally has at least a 3 month wait or more for new patients, you take what you get and hope for the best!!! At least we are not flying on the 3rd though!)


I may not post any news about today until late tonight....Mason usually needs my undivided attention after a sedation. It makes him feel quite yucky :-(


I am very grateful for all of you who continue to send love and prayers our way!
THANK YOU!

Friday, November 13, 2009

The Latest and Greatest


This is exhausted Mason after a LONG night!





I will start with the latest update on Mason.

He is still struggling with a horrible cough!

On Sat., Sun., and Mon. nights it definitely sounded like croup. That tight, seal-like bark, very scary cough that put Mason and I outside several times during the night so he could breath in some nice cool air (to open up his airways). And thank goodness from our pediatrician Dr. W who now lives in my neighborhood (good for us, bad for him!!!), Sunday morning he brought Mason a dose of decatron (sp?). The one time med that helps loosen up the tight airways caused by croup. It seemed to help, because by Tuesday his cough was starting to sound much looser, but junky.


Now, its not that scary croup cough, but he's throwing up a lot because he gags on all the junk he's trying to cough up! Poor little guy! I hate seeing him throw up and especially when it comes back up through his nose (sorry if that's too descriptive). He screams, cuz I'm sure it burns horribly :( !!! Then yesterday , continuing and through last night and today, his oxygen sats have been dropping (from 80% where he is supposed to be to 60-65%) so I've had to up his O2 from 1/2 liter to 1 1/2 liters. His energy level is down and he is not his happy self. He coughed and puked all night! I pray that he can get over this ASAP.


I am sad he is sick.

I am scared and worried.
If the junk gets into his one good lung that would be
bad.

I am tired.

Mason is tired.

But, he will get better soon so we can go visit Stanford!


That leads to the
greatest news of the week.....I got a call on Tuesday from Stanford's heart transplant coordinator. She said that Dr. Rosenthall, their heart failure/transplant cardiologist, feels that Mason will probably be a candidate for just a heart transplant to his own healthy lung (just like CHOP's offer)! He doesn't want to give his final opinion until Mason has had a Chest CT (cat scan) to get a good view of his obstructed pulmonary veins and has come to Stanford for an evaluation. He would like to meet Mason and talk with us in person.


I have been working out the details the last couple of days. The
evaluation will take 2-3 full days of different appointments. As soon as I have the CT scheduled at Primary's then we will get a more definite date for Stanford. We will probably go sometime in the next 3 weeks.


I am so grateful for this news. Now that CHOP and Stanford are thinking along the same lines (and they are the 2 top rated pediatric cardiac transplant hospitals) I feel this will help us in our decision about what will be best for
Miracle Mason.


Mason needs a bath and some snuggling....so I will update more later as I get any new info. Thank you for all your prayers, support, & concern. I know
every prayer counts and helps our journey at this time!


p.s. A huge "Thank you" to a very special friend who sent some cleaning ladies over to rescue me
this week! (Again!!!)

Saturday, November 7, 2009

Under the Weather


On Thursday morning, on the way up to Primary's for Mason's cardiology checkup Mason started coughing a lot. I thought to myself "oh no, is he getting sick?" And sure enough, at the appointment I could tell he was starting to feel feverish and really yucky. As we started to visit with Dr. Everett he sneezed out lots of nasty drainage.... and she immediately said I think we better test for Swine flu and RSV before you go home.



The good news is that everything came back negative. Although he's still got some nasty bug, because he is on day 3 of fevers, a runny nose, and a horrible cough. In fact he's been coughing so hard he gags and pukes, and he's lost is voice! He's got a really sad little cry right now, kind of like coming off the venilator. It makes me so sad when he feels this way. It also cause me anxiety knowing he's only got one healthy functioning lung! I pray it does not get down into his lungs. That would not be good.


At the appointment he didn't have an echo, but Dr. Everett said his heart and lungs sound good. She kept all his meds the same, because he's doing so well (besides this sicky bug). And......drum roll........Mason weighed in at 20 lbs 2 oz !!!! Yay!!! At 23 months I can finnally put him in a forawrd facing car seat. We will go see Dr. Everett again on Dec 14 for a check up and an ECHO.
Hopefully Hevaenly Father will continue to send tender mercies our way, so Mason can kick this cold and not need to be seen before then!


As for the other hospital and doctors from whom we are waiting opinions....I have no news. Honestly they must think Mason has all the time in the world to wait for them!!! Stanford called Monday after their care conference where they talked about Mason(which was on Friday Oct 30 th) and said they needed images from his Caths and Angiograms. What? Those had already been sent 6 weeks ago! Anyways, hopefully we'll hear something this coming Monday.



For now, I am on my second day in my PJ's holding Mason, because he feels so awful he won't let me put him down to even get myself dressed. I will just keep rocking and snuggling my precious babe, ignoring the messes that are all around me. For those can wait, but he can't!!!



Here is a quote I read on Paul Cardall's blog the other day (I've heard it before also) and feel like it is very fitting to our Journey right now:




"Each of us will have our own Fridays—those days when the universe itself seems shattered and the shards of our world lie littered about us in pieces. We all will experience those broken times when it seems we can never be put together again. We will all have our Fridays. But I testify to you in the name of the One who conquered death—Sunday will come. In the darkness of our sorrow, Sunday will come. No matter our desperation, no matter our grief, Sunday will come. In this life or the next, Sunday will come!” Joseph B. Wirthlin






I must say many days feel like everything in my world has shattered into pieces, but at the same time feel so blessed to have this opportunity to be Mason's Mother. I have said many times, but will say again I couldn't do it without all of you. So many acts of kindness, whether small or big, help get me through some of my most emotional and tough days. I have felt since Mason was born that we constantly have angels watching out for us. And here is a quote from a talk given by Elder Jeffery R. Holland which talks of these angels:



He testified, "My beloved brothers and sisters, I testify of angels, both the heavenly and the mortal kind. In doing so I am testifying that God never leaves us alone, never leaves us unaided in the challenges that we face. Nor will he, so long as time shall last, or the earth shall stand, or there shall be one man (or one woman or child) upon the face thereof to be saved."



Until next time...... and thank you for all your continued prayers for our Miracle Mason.

Halloween 2009

Mason was our adorable little dalmatian puppy.


He wasn't quite sure what to think of all the costumes, but
enjoyed it because he was doing what his brothers and sis were.



Ammon was very proud to be a fire fighter!
And loves all the treats too of course.


Braiden was Mr. Yellow M&M for school and
a football player for trick or treating.



Preston was Mr. Orange M&M and he was sure glad he wasn't
a football player like all the other boys at school this year.



Kaitlin was a beautiful lady bug! (She was also
a lady bug when she was 1 year old. I don't know
how to scan the old non digital photos or I'd
put one up to compare how grown up she is!)



Here are the boys ready to go trick or treating!!




"Happy Halloween" from the Strickland Crew.





Carving Pumpkins (The night before Halloween)








We hope that your family had just as much fun on Halloween as we did.

With love from,

a lady bug, 2 M&M's, a firefighter, and a very cute puppy