The Week That Changed Our Lives

Yes I realize I have not updated since I said we were going to Boston. We did go to Boston and Mason did have an open heart surgery while we were there. I updated his FB page with small updates while we were there but haven't really gone into detail about our experience. He has to go back in January for another open heart surgery and FINGERS CROSSED it will be his last surgery and he will be able to live life without worrying about surgeries. I will update with all that and pictures from our trip another day. Today and this week is all about the start of this crazy rollercoaster we have been on the past three years. I want to start it out with two of my most favorite heart mom poems written by Stephanie Husted. The first one I relied a lot on the first year, the second one just seems so relevant with  my "auto pilot" "I'm just fine" ways:

I am a Heart Mother

One day my world came crashing down,
I'll never be the same...
They told me that my child was sick..
I thought, am I to blame?
I don't think I can handle this...
I'm really not that strong..
It seemed my heart was breaking..
As, I'd loved him for so long.
I will not give up on this child..
despite your best "advice"..
I will give my child a chance..
No matter what the price..
And I will learn all that I need..
to help my child to thrive...
I'll even use that feeding tube..
My child will survive!
And he'll needs lots of therapy?
And he just can't gain weight?
Alright God I can do this..
I will not curse our fate.
The feeding pump beeps,( at 3:00 a.m.)
It serves as my reminder..
How many parents would welcome that sound?
Tomorrow Lord, I will be kinder.
Another angel earns their wings..
and I run to my sleeping child's bed..
I watch him then, for quite awhile..
(I bend down and kiss his head)
Then I cry for the parent's whose lives have been broken..
And I look to You wondering why?
Oh Lord, I just can't know your ways..
No matter how I try.
And yet, I trust You hold his life..
(and guide us through each day)
My mind says savor each moment he's here...
But my heart whispers,"Please let him stay".
From... pacing the surgical waiting room...
to sitting by his hospital bed...
From... wishing for a good nights sleep..
to learning every med..
From... wondering will he be alright?
to watching him reach out his hands..
with every smile, my heart just melts..
(despite life's harsh demands)
For all who see that faded line..
I look to them and smile..
You see my child is loved so much..
I would face any trial...
That same scar I trace with my finger..
(It's the door to his beautiful heart)
You must have known how much I'd love him..
(Just as You loved him right from the start)
A heart mom is always a heart mom..
(wise beyond all of her years)
And for those who have angels in heaven..
Our hearts share in all of your tears..
On Mother's Day I will remember..
You chose me for him(and no other)
And I will embrace that beautiful day..
When I became a "heart mother".

Heart Mom Lessons

Heart mom lesson number ten...
Forget who you were and who you have been
Life is about to take a detour
And you will be shaken to your very core.
You've just found out something's not right
How will you make it through this plight?
What can you do? What should you expect?
Of life with a child with a heart defect?
Heart mom lesson number nine
You'll learn to say things are just fine
When people stop... to just say hi
There will be days...you long to cry
Bound by worry...fear... and stress
At times...you'll think..."I am a mess."
You'll smile, when you long to whine
Then say..."thank you"...were doing fine.
Heart mom lesson number eight
You'll learn just what it means to wait.
Patience is a virtue right?
Who really needs to sleep at night?
A hospital room... not a permanent state
As each day passes... home must wait.
Patience is knowing...things won't stay the same
Patience is accepting...a changing time frame.
Heart mom lesson seven here
Our children's futures still aren't clear
Innovations continue to thrive
Each year more children will survive.
These children and their familiies
Will rise to fight these CHD's
Research is imperative
Our kid's deserve a chance...to live.
Heart mom lesson number six.
It's clear life holds no easy fix
If life were perfect...in every way
I guess...I'd have no need to pray
I'd still be living...blind...and dim
Forgetting I must lean on HIM..
I cannot change the way things are
But prayer makes God...seem not so far.
Heart mom lesson number five
Cherish this day...your child's alive
Today we frolicked in the snow
(Did he like it? hmmm...well...no)
I watched him smile..as snowflakes fell
I thought...thank God...he's doing well
A bundled boy...warm hat...one glove
No doubt about it...this is love.
Heart mom lesson number four
There is always time for more
More messes that need cleaning up
More cartoons on t.v
More yes...I'm gonna tickle you
(The best things remain free)
More bubbles in the bathtub
More stories...one more song
More this little piggie went to market.
One more...just can't be wrong.
Heart mom lesson number three
Their special hearts...help us to see
Did I always understand?
That God holds our lives in his hand?
Before my child...I took for granted
The gifts in my life...that God surely planted
Before my eyes...I missed them...how?
My heart child came...I see them now.
Lesson number two...take heart.
It is okay...to fall apart... It's not easy,we don't know
Will we watch our children grow?
God looks to his angels...saying see why I chose her
She is not afraid to lose her composure
In her heart...she feels defiled
But nothing will stop her... from loving her child.
Heart mom lesson...number one
It must be said...we're never done!
That day...will never come you see
We'll always face uncertainty
But I will face each day unknown
Taking heart...I'm not alone.
These lessons... remind me to cope
Stand strong...believe...and always hope.

3 years ago today we found out our baby boy was very sick.  We were having a lazy day, I mean what new mom doesn't just want to chill in sweats and watch TV with her kids?  We needed a new computer so I decided that before naptime I would take the boys and we would go to Staples to look at a computer I saw in their ad.  While I was getting Mason out of his bouncer to put him in his car seat he stopped breathing.  I have no idea what went through my mind but all I remember is turning him on his stomach and doing back blows then turning him over and rubbing his sternum.  He started breathing but didn't look okay.  Don't ask me why I didn't call 911.  I called the pediatricians office and told them what happened, the nurse kind of blew me off, told me there wasn't an appointment until that night and if I was really that worried to take him to Instacare.  So I put both boys in the car and drove to the ER.  When I told them what happened they looked at him in his car seat and I don't think really take me very seriously either, that is until they put the oxygen sensor on his fluid filled foot and his oxygen was in the 70's, he looked pink.  His body was completely modeled and he was so so puffy.  I just thought he was getting chunky. Zac rushed to the hospital from work.  They put him on oxygen and started with blood draws to check for infection, nothing.  So then they decided to do a spinal tap.  The day went on like this, test after test.  Finally the ped on call came up to the ER and ordered a chest xray.  That is when everything started to change.  He told us he was going to admit Mason to the ped's floor where he would run some more tests and consult with Primary Children's.  At that point it he said Mason's heart was very big and he had some pleural effusions.  Then came the echo.  I don't think the echo tech was out of the room 5 mins when the doctor came in saying Life Flight was on it's way to take Mason to Salt Lake to Primary Children's.  At that point we still thought pleural effusions was what was sending him. It was almost 10pm at that point.  I don't remember much after that.  When we got to Salt Lake all we were told was that he was sick and he had a few Congenital Heart Defects and told us a few of them.  They had some more testing scheduled for that next day.  The next day they did a Cardiac MRI that they had to intubate him for due to a picture they had to get.  They gave him med to stop his heart for a split second to get a picture they needed.  We waited in the waiting room.  Then came the cardiologist.  She took us into a private room and our world was flipped.  She said, Mason is very sick.  He has a heart defect called Hypoplastic Left Heart Syndrome.  That didn't mean anything to me at that point.  She proceeded to tell us that it was the worst of the heart defects and that if he was born a decade sooner the only option we would have would be to take him home where he would pass away.  I only remember pieces after that.... stuff like "you have the option to take him home and put him on hospice to keep him comfortable before he passes."  "he is in heart failure, I am shocked the rest of his body hasn't shut down"  "Surgery is an option, it is a rough road and not promising if you choose to go that route" "Transplant is an option but he probably wouldn't make it long enough to receive a new heart".  The conversation was ended with us choosing to try the surgery to save him.  The next day was a blur, we met with social workers, surgeons, anesthesiologists, different hospital teams.  Signed a bunch of consents, talked to research/study teams, it was never ending.  On October 29th he had his first open heart surgery.  When signing the consent with his surgeon, Mason was given a next to nothing chance of making it through the surgery.  His nurse cried with us as we walked him to the OR doors, she was one of the first to fall in love with this amazing boy.   Surgery went better than expected and his recovery was smooth and better than anyone ever imagined.  The rest is basically history! He has exceeded every ones expectations with how great he has done.  We are defiantly blessed and have a lot of angels helping him and us out every step of the way.  I have no doubt about that at all.   This new way of life we were put into is always teaching us something.  It can be mean, ugly, unfair, nauseating, frustrating, joyful, amazing, and beautiful.  It is something that has brought our family closer together and is reminding us constantly about what is important in life.  So today, the day I will never forget, we celebrate.  We celebrate our family being together, the friends we have made, the love we have felt, the prayers that were said, the support that we have, we celebrate it and remember it all.  Today is a good day.

We are heading to Boston!

Well it is time that I start updating here alot more often especailly where some of you don't have Facebook for me to keep you updated there! Where to start...... WE ARE GOING TO BOSTON, and not for a vacation, or to move there.  When looking up the top rated pediatric cardiology units in the United States I came across Boston Children's Hospital and they were in the top because of a surgery they were doing for kids with Hypoplastic Left Heart Syndrome kids.  It is called the BiVent or Staged Left Ventricle Recruitment.  After reading about it I found some moms of kids that had gone the procedure, told Zac about it and we decided it felt perfect for Mason so after sending his records to Boston and talking to his cardiologist we knew it was perfect if he was a candidate for it.  Boston got back to us and told us he was an ideal candidate for it! The surgeon called himself to talk to me about it and answer any questions that I have.  He made us feel even more at ease with it.  His surgeon is Dr. Emani.  Then Mason was assigned a cardiologist over there and she has called and emailed and talked to us a bunch, her name is Dr. Banka and also makes us feel so comfortable with everything.  They have given us their emails and told us to email them anytime we have a question.  I have and they both get back to me within 6 hours! Pretty dang amazing if you ask me, you can tell they are all about their patients and families and making them feel comfortable!  I am having some nervousness just for surgery itself and the fact that a surgery came faster than I was expecting but it still feels so right.  We have to fly to Boston in the first of June for some preop appointments and for some procedures before surgery, then his actual surgery will be on June 7th.  It is coming up so so fast!  We feel so blessed where his heart adventure has led us to and can't wait to better his life. Here are a few links to the surgery that he will be having

http://childrenshospital.org/newsroom/Site1339/mainpageS1339P917.html

http://vectorblog.org/2012/11/building-a-whole-heart-for-children-born-with-half/

I will update the blog alot more often now to keep you in the loop.  We are doing some fundraising for expences that this is going to bring.  His insurance will cover the surgery so that is a big relief.  Another HUGE weight lifted off our shoulders is that we have some family that lives near Boston and has offered for us to stay at her house which saves us alot of money on a place to stay(Thanks again so much Marge,  I don't think I will every be able to express how thankful we are for you and opening your home to us).  So what we are having to raise money for is airfare for our family, our bills while we are gone(they told us to plan on 6-8weeks) because obviously we will be too far from home to go to work, and food.   On the right corner of his blog is a donation button.  You can donate to Mason's account by clicking on that.  We are also selling super cute Team Mason shirts, the picture of them is below, to raise money.  They are 12.00 a shirt you can pay through the pay pal donation button on here and if you want it shipped just add 5.00 per order.  We are so grateful for the amount of support we continue to recieve from friends, old and new, and family and feel so loved that we still have so much support with Mason and the decisions that we make as a family to better his life.

Our little snow man... He LOVES playing in the snow!

The Team Mason Shirt

A Day to Celebrate

Mason is TWO!!!!!

 

 

I am feeling so blessed today knowing we made it through another year, and a good year at that! It has been over a year since we have had an admission and Mason is doing great and acts like your typical little toddler boy! Two years ago it was uncertain he would make it to the next day, let alone to two years old! Mason is so fun and spunky! He loves Mickey Mouse, Elmo, anything with wheels, bubble baths, his blankie, oreos, and most of all he loves family and people in general.  Everywhere we go people are drawn to his loving personality.  He says hi to everyone and tells them something about wherever we are. Nobody can ever get enough of him.  He is definatly one special little kiddo.  He is still on the small size but you know what they say, dynamite comes in small packages.  We had his birthday party over the weekend and one of our family members said, watch when he is older he will be in extreme sports! He is really that crazy and active plus on top of it he is super coordinated!   He weighs 19.4 lbs and is 30 inches long.  His heart is still doing really good so we are hoping we can stay healthy through the winter and keep our roll of no admissions. I have to thank my good friend Stephanie for taking these great pics for us, they couldn't be more perfect! You can see more of her work here.

 

Happy Birthday Mason, we love you so much and are so glad you are apart of our family! You have taught us more about life in the past 2 years than somepeople learn in a lifetime.  You make us want to be better people.  Your big personality can change any bad day into a good one! Keep fighting, we know you can win!♥



Update

 My goal for the summer is to update alot more than I have been! I have people ask me all the time how Mason is doing because I have been a slacker at posting! Mason is doing the best he has ever done.  He acts like a typical crazy 20 month old boy! He runs, kicks and throws balls, talks, plays trucks, he likes to swing, and go down slides, loves guns(I guess some of these come in because he loves to do anything Ryder does), loves Toy Story and Transformers. He likes to hide things from people and is one of the silliest little kids with such a huge fun personality!  You wouldn't think anything is wrong with him by just looking at him.  He still has things that makes him tired.  He still can't climb all the way up the stairs in our house and when he has been running around for awhile his lips turn a lovley shade of blue and he starts to fall down alot, but none of that phases him and he doesn't let it stop him either.   We still haven't been able to go longer than 4 months without having a cardiology with sedated echo and even though he is doing great they still have us coming in that often with a sedated echo everytime,  I used to have a hard time with it saying things like "other kids get to go longer so why can't Mason" But I have come to terms with Mason is his own person and even though one kid can go 6 months and others 1 year Mason, as they always say, is not their typical case and he is a little more compilcated in his heart anatomy having the other defects, leaky valve, and extra vessels.  We have his next cardiology appointment with the sedated echo in 2 weeks and I am expecting nothing but good results. Thanks for keeping tabs on our family! I feel lucky to have such a great support system with our friends, family, and even from people we have never met!

♥ 

I love this picture so much! Thanks Ali for snapping this cute pic at the park!

Our Heart Hero Mason!

So a friend and fellow heart mom of mine made this for Mason..... Isn't is simply awesome?!!! Thanks so so much A.Rae, I love it!

The best thing about a blog.....

Is it can turn into a place to vent and release feelings! Mason has had a cough since December 1 and it hasn't gotten better at all. He also is starting to look a little puffy in his face and belly. Worried people should not be allowed to use Google because what happens when I look up those symptoms??? They are all signs on heart failure! I called his cardiologist and told him what had been going on and they got him fit into an appointment on the 27th for an Echo and a good check up. I have alot of hope that it isn't failure that it is just something else that is random and no big deal, but still makes me a little nervous. I keep reminding myself that faith and fear can't occupy the same space so I am trying to push the fear out so I can keep the faith in. Other than that he is doing pretty dang good for such a fragile little guy. We(and when I say we I am really meaning me) are ready for summer to come back especailly now that we are in full swing of RSV season and are now starting to be homebound to keep us all healty so we don't give anything to Mason. Well there you have it, my release for the day :) Thank you to all of you who still read the blog and keep us in your prayers! The power of prayer is so amazing, and you all have a special part in our little Miracle. ♥

Slacking!

Well it has been too long since I last updated!!! I swear once Halloween is over time just goes by so fast! I am trying to think of what has happend the last few months so I will start with our last Cardiology visit we had in the first of November. Mason was so good and didn't cry during any of it, orginally because of his leaky Mitral Valve getting worse we were going to have to have another Echo done this month(December) well the appointment went SOOO good that we were able to cancel that, everything else was so good we actually get to go a full 6 MONTHS before having to go back! Seriously was the best news we have gotten since we started this heart journey a year ago! Mason has loved the holidays, he LOVES Christmas lights! He is still a tiny little squirt but his big personality makes up for that! Oh another thing.... HE IS WALKING!!!! They told us he prob wouldn't walk until he was close to 2 because he wouldn't have the energy to. Well he may be lacking half of a heart but he is sure not lacking ANY energy! Today the physical therapist came and we signed the papers saying we no longer needed their service. He is not delayed in anything anymore. He is doing sooo good! It is hard to believe a year ago they told us we more than likely wouldn't get to bring our sweet baby home, but Mason has proved in many ways that the odds don't apply to him. ♥

At our ward's Trunk or Treat



I can't help but post this daddy picture

Mason before his first hair cut

My handsome monkey after his hair cut

Somebody doesn't like santa

An everyday battle at our house. Mason LOVES to pull Ryder's hair. Ryder doesn't love it so much but I couldn't help but get a pic of it.

♥

The Day I Became a Heart Mother

I Am A Heart Mother

One day my world came crashing down, I'll never be the same... They told me that my child was sick.. I thought, am I to blame? I don't think I can handle this...I'm really not that strong.. It seemed my heart was breaking..As, I'd loved him for so long. I will not give up on this child.. despite your best "advice".. I will give my child a chance.. No matter what the price.. And I will learn all that I need.. to help my child to thrive... I'll even use that feeding tube.. My child will survive! And he'll needs lots of therapy? And he just can't gain weight? Alright God I can do this.. I will not curse our fate. The feeding pump beeps,( at 3:00 a.m.) It serves as my reminder.. How many parents would welcome that sound? Tomorrow Lord, I will be kinder.Another angel earns their wings.. and I run to my sleeping child's bed.. I watch him then, for quite awhile.. (I bend down and kiss his head) Then I cry for the parent's whose lives have been broken..And I look to You wondering why? Oh Lord, I just can't know your ways.. No matter how I try. And yet, I trust You hold his life..(and guide us through each day) My mind says savor each moment he's here...But my heart whispers,"Please let him stay". From... pacing the surgical waiting room... to sitting by his hospital bed... From... wishing for a good nights sleep.. to learning every med..From... wondering will he be alright? to watching him reach out his hands.. with every smile, my heart just melts..(despite life's harsh demands) For all who see that faded line.. I look to them and smile.. You see my child is loved so much..I would face any trial... That same scar I trace with my finger.. (It's the door to his beautiful heart) You must have known how much I'd love him.. (Just as You loved him right from the start) A heart mom is always a heart mom.. (wise beyond all of her years) And for those who have angels in heaven.. Our hearts share in all of your tears.. On Mother's Day I will remember.. You chose me for him(and no other) And I will embrace that beautiful day.. When I became a "heart mother".

-Stephanie Husted

Well today is that day! Today marks the one year since Mason was Life Flighted to Primary Children's Medical Center. I am soooo grateful for the advancement in modern medicine and cardiothorasic surgeries in the past decade so our sweet little baby Mason could still be here with us today! We are so thankful for all the staff at Primarys for taking such good care of him and of us during the past year! I wouldn't have wanted to at any other hospital! We are so blessed and instead of today being a downer day it is a day of celebration for an amazing heart warrior!!! WE LOVE YOU MASON!!!! ♥♥♥

This is the pic from my phone of Mason in the ER before he was sent. I can't believe how much fluid he retained over the 3 weeks. It was because he was in full heart failure, but he pulled strong and defeat the very slim odds they gave him. If you saw him today you wouldn't know that anything was wrong with him,(except now in the cold weather his lips are a little bluish) but other than that he looks PERFECT!

♥

Surgery

Mason had a minor surgery on the 7th. He was born with clogged tear ducts and they never opened on their own so they had to put him under to do it. I'm not going to lie I was super nervous about him being intubated and under anesthesia again, but I worried for nothing! They told us the day before to plan on staying overnight because he was a heart kiddo, but he did AMAZING, so they let us go 3 hours after surgery! He also had an echo while he was asleep, right before he was getting discharged I asked his nurse in recovery about his echo and she said she'd go check on it well when she came back she said, the report says the valve is more leaky and there is significant change in the echo....... it made me sick! She said you need to pop into cardiology on your way out and talk with them. So we went straight to cardiology and Mason's doctor wasn't in clinic but was in his office so he told the front desk to put us in a room and he'd look at the results and come talk with me, when I told him what happened he didn't like the way she told me that because all it was, was the mitral valve going from a mild leak to a moderate leak. He upped one of Mason's meds and is hoping that that takes care of it. He is still worried about it and so he wants to see him back in November and then do another sedated echo in December to make sure the leak is back to mild..... I don't know why but I have a really good feeling that upping that med is going to work! So I guess I will just keep going with the power of positive thinking, and faith!

♥

PARTY TIME!!!!

It's Offical..... Mason is ONE!!!!! He had such a good birthday! At first I was sure I was going to do a HUGE party for him because of the last year but when I really thought about it I decided against it and just did immediate family. He is having eye surgery on Friday and Flu season is here so I thought the less people there the less he is exposed to the yucky stuff right before surgery. It worked out great that way because there wasn't much commotion and so he was able to cruise around and be his cute little self without getting overwhelmed! Like I said he is having surgery tomorrow, it is very minor. He has clogged tear ducts so they have to go open them up and they are going to do another echo while he is under. I know it isn't that bad of a surgery but I just hate the fact of anesthesia again and having to be intubated for it(even though it will come out right after) but he is such a strong little guy he will do great!!! ♥

Ready and waiting for the Birthday boy!

I did a heart picture chain of pictures from his first year

Opening presents with Ryder

The first of the cake!

The party kids!

Obviously you can tell he loved his cake!

After cake we he just wanted to play on his 4wheeler

The crash after all of the party excitement! (yes that is cake in his hair!)

♥

The Day Mason was Born.....

Our sweet Baby Mason turned ONE this week! What a blessing he is in our life! I saw a quote today that I loved and it said "We are not lucky, we are blessed" It is so crazy to think when he was born we were just so excited and were expecting a healthy baby and even had a "healthy" baby for a few weeks before everything happened! I am SOOOO grateful for the extra defects that allowed a little blood flow to pass through keeping him alive when we didn't know. We love this little guy so much and can't imagine what life would be like without him. One year is such a GREAT milestone for him! He will just keep beating the odd's one year at a time! Although leading up to his birthday I struggled with emotions thinking a year ago I never would have thought we would be where we are now and gone through what we have gone through. He had a great small birthday party that I will upload those pictures later but I thought I would share the pics from the hospital when he was born. He was born on October 1, 2010 at 4:00 in the morning. He had a rough delivery where they lost the heartbeat at the very end and thankfully he was born right after that and they were able to get him out and crying. He weighed 5lb 14 oz and was 18 inches long. ♥

Right after delivery (yes he was really blue when he was born, then pinked up for a bit)

Sleeping is what he definatly did best!

A proud big brother!

Our first picture as a family of 4

In the car on the way home!

A Shot in the Arm for Mason

A Shot in the Arm for Mason!!!!

Well the flu season is among us....BOO!!! While some of you might find this "overboard" or "harsh" to us it is not. To us I would explain it maybe as harsh reality. For Mason's safety we are advising that if you plan on being around him AT ALL that you will get your flu shot. There is the assumption that if you get the flu shot you will get the flu, well guess what that is false. This is straigt off of the CDC's website:

The flu shot: The viruses in the flu shot are killed (inactivated), so you cannot get the flu from a flu shot. Some minor side effects that could occur are:

•Soreness, redness, or swelling where the shot was given
•Fever (low grade)
•Aches
•Nausea
If these problems occur, they begin soon after the shot and usually last 1 to 2 days. Almost all people who receive influenza vaccine have no serious problems from it.

The flu would be life threatening to Mason, and it wouldn't be a question of he might be admited to the hospital if he got it, it is a guarentee that he would be admitted and it would be to the ICU, I don't think YOU would want to be the cause of that, would you?

Because of the risks if you don't have your flu shot you won't be allowed at our house this winter that may seem rude but I'd rather seem rude and avoid the hospital this winter than hold my feelings in and be at the hospital away from Ryder and Zac for weeks because Mason caught the flu. Also if we do decide to attend family events such as Thanksgiving, Christmas Eve, Christmas, or New Years Eve parties outside of our house and we bring Mason, if you plan on holding him or getting close to him we will be asking if you got your flu shot and if you didn't you will just have to wait until the summer to cuddle with him. The more people who get the flu shot the less people who get the flu, crazy concept right? So really it isn't only for Mason's protection but for your own family's also. I know alot of you have kids and babies in you homes so do it for them also! So come on all the cool kids are doing it and get a

SHOT IN THE ARM FOR MASON!! ♥

Crazy Summer!

So it has been awhile since I last updated so where to even start?!! We obviously got to come home and the first blood culture was contaminated so he was good there. After that we have had a fun and busy last of summer. We attended heart camp which was a blast! We are apart of a support group called Intermountain Healing Hearts and they have some fun events and that was one of them. If you want to know more about them or donate to them in Mason's name go to www.intermountainhealinghearts.org Then there was another hospital visit. Mason had a small seizure so we had to go back to primarys and stay the night in the Rapid Treatment Unit but they said everyone gets a free pass with those and if it happens again then they will want to do CT scans and EEG's. He is going to be having eye surgery on October 7 with antoher sedated echo. I can't believe Mason is going to be one in less than a month! I'm so excited to hit that milestone and for him to beat the odds that they gave him! He proves to be a fighter every single day and we couldn't be more proud! ♥

He pulls himself up to everything!


Ryder and Mason at Heart Camp

My little Hawaiian Baby

Mason's first campout! (In grandmas backyard)

The boys

My favorite picture from our family pictures done by Stephanie Tueller!

Back Again!

Well we are back at the hospital again. Only made it home for 12 hours! So this morning the phone started ringing at 4am Luckily (yes I said luckily) it was turned down so I didn't hear it until 7. It was the Pediatric fellow up here saying that we needed to get back down here to the ER because Mason's blood culture grew back positive. Mason was still asleep and I didn't find it that emergent so I let him sleep awhile longer before heading back. Once we got here to the ER they were waiting for us so they took him right back to a room and we started everything over again. Luckily this ER visit was a lot shorter! They drew labs and his white count has gone even lower and with that positive blood culture they admitted him because if it is true that he is growing a bacteria then he wont be able to fight it. The bacteria that grew back could be a false positive because it is the same bacteria that grows on your skin so it could have just been contaminated, but they are keeping him until the one they drew today comes back. And also he has been extremely sleepy so they just want to watch him again. Anyways that is the latest with our little guy! We are hoping for the contaminated blood culture but we are glad they are being cautious.

Crazy Couple of Days

Well the last few days have been a rollercoaster I must say. On Monday night Mason felt a little warm so we took his temp and it was 99.4 and he was just kinda fussy so I was giving him Tylenol but wasn't to worried at that point then on Tuesday he just seemed to be getting worse on Tuesday afternoon his temp was 100.5 so I took him into the pediatritian's office to be looked over everything looked good but at that point his temp was 102 so they ordered labs. It is so hard going here just because they are not used to poking kids that often let alot heart kiddos with really crappy veins so it took 4 arm/hand pokes, a heal stick and a scalp stick to FINALLY get the blood they needed. The pediatritian on call called me that night with the results and said his white count was lower than normal and his CRP was a little high so he wanted me to take Mason back to him on Wednesday to be looked over again, me being the worrier that I am I called his cardiologist Wednesday morning to let him know what was going on. Before I took Mason into the pediatritian his Cardi called back and said if the doc can't find a reason for the fever that looking at the labs and symptoms he wanted us to take Mason to Primary's ER after the doctor, well there was nothing obvious that was causing everything so to Primary's we went. We checked in at 4pm. Mason was super fussy and they would just tire out so fast, he hated everyone that walked into his room regaurdless if they touched him or not. They sent him to chest xray first and that came back that he had gained some fluid pockets but still nothing that would cause the fever and labs. The longer we were there the worse Mason started to look after a little while they had to put him on 2 liters of oxygen which is a lot for a baby his age. After 7 hours in the busy ER (we think they had a trauma come in) they came in and said they were going to admit him to the floor. They needed to start an IV and do some labs. So after 8 hours we went up to the CSU for the night. I finally got Mason to calm down and go to sleep at 1am. During the night they were able to bring him down to 1 liter of oxygen. First thing this morning they took him for a sedated Echo to make sure his heart function was still good and then a CT scan of the chest to make sure his Sternal infection didn't come back. While he was sedated they were able to come down even more on his oxygen! When he got back to his room he was pretty tired still and they were kinda thinking that they would keep him another night to make sure he was eating and awake okay. Well he woke up great and ate a bottle but they were still thinking of keeping him but after talking to them we came to the agreement that we have all the oxygen supplies at home and he is simply happier at home so they decided that they would let us bring him home after they got the results back that the echo and CT scan were good. His fever is gone now too. He is back on oxygen but they are not sure what caused this little crazy minute. All the viral tests came back negative so who knows, but as soon as we got home he was so happy! He is still not 100 percent but I'm sure he will get there faster here at home than at the hospital. We have to see his pediatritian tomorrow and next week then see his cardiologist in a few weeks. We laughed thinking he maybe thought he missed all his nurse friends but when he got there decided that he really didn't like them after all, it's nice to have some humor and something to laugh at in these situations. We hope he doesn't decide to miss them again anytime soon! We are so happy that he is okay and that this was just a minor thing in his heart journey. Thanks for everyone for keeping him in your prayers and thoughts! We are glad to all be home together!♥

We have a little Champ!

Mason had a cardiology appointment on Tuesday and things couldn't have gone better!!!! I am sure that it was our best appointment to date! First we had a dietary appointment and he is growing perfectly! He weighs 14 lb 8 oz, woot woot! He is still pretty small for his age but his length is short for his age too so he is perfectly portioned and even has chubby cheecks and starting to get some fat on his legs! Then we had his cardiology appointment, he always does chest xray first and when they took the picture me and Zac both felt like it looked better than the previous ones. When we had his last appointment when he got taken off oxygen his oxygen saturations were averaging 79% but when the tech came in to do is vital Tuesday they were 92%!!!!! We couldn't have been happier! His EKG was good and the only thing that wasn't "GREAT" was his blood pressure, the first one they did was 160/102, YIKES!! But he fell asleep after Dr. Mack checked him over and it came down a whole ton (I can't quite remember what it was but it was much better) So his weight might start to make him grow out of his blood pressure medicine so if it goes up again they will just increase that. His chest xray was clear so NO MORE FLUID!!! :) His cardiologist was SO PLEASED with him that he feels we might be able to go 6 months before having another check up! He told me to call him in about 3 months and if we feel he is doing good then we will schedule another 3 months from then! We are so proud of our little champ! He is so perfectly imperfect! I can't believe he will be 9 months old next week! We are so thankful for everyone who has been such a support to us the last 9 months and for all of you who still check up on him! Also thanks to you all for understanding that he still can't (and will never be able to) be around sick people. He is doing so so good and we would HATE to do anything to comprimise that! Thanks again for cheking up on him, we really do appritiate it! ♥

No News is Good News!

I can't believe it has been a month since I have blogged on here!! But rest assured no news has been good news! Mason is growing like a weed and is such a happy baby! He still has some fluid but it isn't causing any problems or getting worse so that's that I guess. His cardiologist isn't happy with his weight but I am so I I guess we will have to agree to disagree on that subject. I took him to his pediatritian yesterday and he weighs 14 lbs at 8 monts old! Small for his age and still not on the charts but he is gaining weight faster than the average baby his age so I'm sure he will catch up in no time. The cardiologist he has now is not one that we started with so I'm not sure if he knows Mason was only 5 lb 14 oz when he was born then to go through all the surgeries and hospital stays 14 lbs is pretty dang good. He sees the cardiologist on the 21st and I'm sure his weight is on the top of the list to be talked about but I think Dr. Mack will understand more when he sees his growth chart and how each time he is closer and closer to being "on the charts". He is impressing his physical therapist on how fast his motor skills are progressing. He has been sitting up all the way on his own for about a month now and that is right on track. He rolls all over to what he wants. He is pretty wild and wants to be moving all the time so when he learns to crawl I am going to be in TROUBLE! There will be no stopping him. He is starting to wave and he plays Peek-A-Boo and Patty Cake. He will eat anything you give him (minus he bottle, he hasn't been a big fan of that latley) He is so fun and I couldn't imagine life with out him. I'll try to update as often as I can but like I said before.... No news is good new especailly with our Baby Mason!♥

He is such a ham for the camrea!

Waiting to be fed!

Cute matching Brothers on Easter

♥

It's All Good!

Oh how I LOVE good news!!! Yesterday Mason had his chest xray to check for chylo. I had such a good feeling that things were going to be okay because I had been measuring his stomach and watching his breathing after they changed his formula and he kept doing good so I was really hoping that his xray proved to be good because he was acting so good. Well it didn't look better, but it didn't look like chylo either!!! YAY! So they are hoping that his body will just absorb the fluid that is in his chest cavity so they will just keep doing regualr xrays so watch it. On a different note, when Mason was diognosed at Primary Children's I am pretty sure I would have thought it was the end of the world, except for an amazing family who became such a support to us. Their little boy was in the room next to Mason with some complications waiting on the third surgery, the Fontan. I'm sure without them I would have gone of the crazy train, but they were such an example to us and watching the mom made me know that I want to be the kind of mom to Mason like she is to Carter. And the dad is always so positive, (plus he introduced us to the slushie machine in the PICU) so anyways they have been in the hospital for 10 weeks straight with a problem that wasn't really getting better, they were told that they would be able to go home today but last night that changed and Carter is having to have another open heart surgery after what was supposed to be the last one. This family is truly AMAZING!!! I feel like we have a friend for life with them and really they are one of my biggest role models. Please pray for their little guy and their family. They also have a baby so this whole time they have not been able to be all together as a family. It will be such a happy day when they are all home together. I am so grateful for their kindness and their support, I only hope someday I can be half the support for them that they have been for us. Thoughts and Prayers for their cute family is much appreciated! ♥

Never in the Safe Zone

I guess once we start feeling like things are going good and we are somewhat "safe" for a minute they decide to worry us about something else. They called us back last week about the random vessel in his heart and they are not concerned about it right now but they didn't mention what they were thinking about Mason's chest xray being more wet, so yesterday on our way to Ryder's soccer I got a phone call from the nurse, she told me that Mason's doctor is very worried Mason has something called Chylothorax (click here for definition). It is fairly rare but pretty serious, but they way it is presenting itself he really feels it might be. The way they are going to find out for sure if that is what it is they are going to switch his formula. The formula he is on right now is a fat malabsorbtion formula so it makes it hard because the only way they can see if that is the problem he needs to be on something that isn't fat free. The dietician will call us today and tell us what formula we need to give him, then we will go down to Primary's 2-3 days after being on the regular formula and they will do a chest xray and if it is even more wet then it will look like we will become part time residents of Primary Childrens once again. I am nervous being so far away from there when they do this trial because if it gets bad enough it could put him in respiratory distress and I really don't want to watch him leave on life flight again. But I guess we will just see how it goes. This is life as we know it. Our life will always be unpredictable and anything can happen at anytime. So I guess it is pretty safe to say we are never really technically in the "safe zone" But we love this little guy more than words can ever express, he is so fun and his personality is the best! I can't imagine life without him, he has made us stronger and continues to teach us life lessons. Thanks to everyone who still checks up on him and still prays for him, we really appretiate it! ♥

Sedated Echo Appointment

♥ Yesterday was Mason's sedated Echo appointment at Primary's and boy was it a LONG day! We checked in at 11:50am and went straight to chest xray to check on that fluid that was there last month and to make sure the increased Lasix got rid of it then we went back to his room in the cardiology clinic to get prepped for his echo. The nurse came in and did his assesment and then called the IV team to put in an IV for his sedation meds. They put them in what they called moderate sedation. Obviously Mason didn't love the IV team but they got his IV without a problem which always makes for a happy mom! Then they took us back to the echo room where they gave him 3 sedatives, Ketamine, Versed, and Nubain. Those knocked Mason right out! The echo lasted about an hour and went very smooth! Mason didn't move the entire time which is great because with him being on those meds before they can develop a tolerance to them so they don't work as well. After it was over we had to go up to the surgery post op for him to wake up. We had to be there until he woke up and could eat something and keep it down. While he was waking up I requested for them to turn off his oxygen and do a trial to see how he held it on his own. They turned it off at 2:25 and at 2:55 when we got discharged from there his oxgen still was good! YAY HE PASSED!!!! After all that we headed back down to cardiology to find out the results of the xray and the echo. I had been nervous all day well actually to be honest I have been nervous since they said the words possible heart failure. They were so behind that we didnt see the doctor for and hour and a half! He started with the echo, NO SIGN OF FAILURE!!! But they saw something they hadn't seen before, they found a small vessel in his heart that is in a place where there isn't supposed to be a vessel, 3 different doctors looked at it and couldn't figure it out so that has got them kind of confused, Mason's cardiologist wasn't there today and he has done a heart cath on Mason so the cardiologist that we saw is going to talk to his doctor about it hopefully today. Then the chest xray.... it was more wet, another confusing thing because he looks good he sounds good and he passed his oxygen so that is another thing he will discuss with Mason's doctor. Everything else was good his EKG was good and they were pleased with the way Mason looks. So all in all it was a very good appointment just now the waiting on the unknown of what's going on. Before I could take Mason off his oxygen they wanted me to do a trial at home this morning and he also passed here! So he is offically off oxygen in the day! YAY! He has been on it for 4 months, and I know that isn't that long compared to other kids like Mason but I'm glad he is strong enough to not have it anymore! Although now I'm a little nervous and he will prob get spot checked alot for the next week. I am so proud of him he continues to be such a little fighter! We love him so much! ♥

First offical Oxygen Free picture!

His goal range is still between 75% and 85% and it was 83% at the end of his trial this morning so just where we want it!

Welcome to Holland

I read this poem for the first time when we were in the hospital with Mason the first time and felt it was so dead on and the more time goes on the more I feel it is true. I've been thinking of one of my good friends who is going through a hard time with her baby right now and this poem kept coming to mind so needless to say I sent it to her and am going to post it on here for me and for all you other moms going through hard times regaurdless of what it is, just remember to stop and look at the things you have been blessed with through the hard times.

WELCOME TO HOLLAND

By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this… When you’re going to have a baby, it’s like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” ” Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely hings …about Holland.

6 Month Milestone!

Mason hit his very exciting 6 month birthday yesterday!! I remember being sad with Ryder when he turned 6 months because he was growing so fast but with Mason I was so excited because that means he is still here, so keep on growing buddy! He is such a sunshine in our life he can make any of us happy at the drop of a hat. His eyes and smile melt my heart every second of everyday! Mason we love you and keep fighting, we are here to fight with you!

WE LOVE YOU MASON BOO BEAR!!

Sitting like a big boy in his Bumpo

Handsome Boy

Brothers!

Holding his toes

Things Mason likes and can do at 6 months old

-He loves his brother still!

-He likes to suck on his fingers

-He is interseted in our dog

-He is a squealer!

-He is very ticklish

-He likes to suck on his toes

-He can hold his head up while on his belly for a few seconds

-He can roll from Belly to Back

-He can roll side to side

-He likes us to do patty cakes with his hands

A little video!

Mason is still doing pretty good, still sweating like crazy but his sedated tests are April 20. We haven't heard from the Race yet but from what I read there were over 500 people there!! WOW! What a huge support we got! I still cannot thank everyone enough who came out and supported us! I think that is the day that made me fall in love with Cache Valley. Here is a video of Mason. His smile is so addicting and his eyes are to DIE for! He loves to squeel all the time and honestly I LOVE it!

Prayers for Xander!

Our heart buddy Xander needs all the prayers he can get right now! Xander is also Hypoplastic Left Heart and is a few months younger than Mason. He is still in that scary stage between the first two surgeries and he has come down with RSV. RSV is really bad in healthy babies and is very deadly for heart babies, especailly with ones with such a special heart like his. He is struggling but trying to fight so hard at Primarys right now and could use all the extra help he can get! We are rooting for you Xander!! We are sending our prayers and heart hugs!

Long Day of Appointments!

First I would like to thank EVERYONE that came to the race on Saturday! There was an AMAZING turn out. I feel so grateful for all of our family, friends, ward members, and strangers that came and supported our little guy! I haven't gotten the official number of people who participated but when I know I will for sure post it!

Today we had a long day of appointments at Primary's. Almost 2 weeks ago Mason had a basic hearing test and didn't pass so we started out our day at 9am in Audiology. They did the ABR, a more advanced hearing test. The instructions they gave me was he needed to be sleep deprived so they told me to put him to bed 3 hours late wake him up 3 hours early don't let him eat until we get there and don't let him sleep on the way down.......... I was thinking in my head, YEAH RIGHT! How am I going to keep my 5 month old awake from 4am to 9 during a 2 hour drive?! Needless to say I put him to bed at around 1030,(3 hours late) woke up at 6(1 hour early) and I tried to be very very intertaining on the way down but yep he fell asleep by the time we got to Brigham City! He only slept 30 mins but I was a little nervous they wouldn't be so happy with me! When we got there he was wide eyed but he was such a good little boy and when I fed him he fell asleep in my arms and they were able to do the test and he PASSED with flying colors! We got done with that at 10:30. His Cardiology appointment wasn't until 1:00 so we had to kill time, luckly/not luckly our good friends are admitted and we hadn't seen them since November so it was SO nice to see them, especailly because the mom really helped me out and kept me strong during the Noorwood, she is such an example to me so I loved seeing her again, and of course cute little Carter! Then also my other good friend had appointments at the U so I was able to see her and her cute belly before she has such a precious baby on Tuesday! (I'm sure you are all interested in the play by play of our day, sorry for that! haha) By the time we were done with all of our visiting it was time for Mason's appointment. He gets a chest x-ray every time so that is where they send us first so by the time we see the Doc he can look at it. First in the room they did his oxygen trial to see if he could come off of his oxygen, he failed so he is still on oxygen. After that the doctor came in and the first thing he told us in his x-ray his lungs were kinda wet and his liver looked enlarged. So he felt his liver and it is enlarged....... He also has been sweating a whole ton. Well those symtoms could be sign of heart failure. But they are hopeful that it is more because his lungs are a little wet. So they upped his Lasix to try to really dry him out and our next appointment they we do a sedated echo to look at the heart and see how it is functioning. (His echo after the Glenn showed decreased function) They are hoping upping his Lasix will be the easy quick fix and that is what we are hoping for also! So we will be watching him closely for more signs or if the sweating doesn't get better! The good news of the day is after all of that the PICC line got taken out! YAY!! The first thing I did when we got home is gave him a bath! It has been 2 months since he has had a real bath so I was pretty excited for it and he seemed to like it also!

His Chest Xray from the front

From the side

I took these in radiology of their computer after they took the picture before they put them in the computer and it is hard to see the wetness in these ones but when the doc pulled them up in the room it looked more wet.

Same old Same

So nothing that new going on around here. Just loving every moment together and loving how much more personality Mason gets every day! I am amazed at the little guy how fast his strength is coming! He can now lift his head while on his stomach and yesterday he rolled from his belly to his back then last night from his back to his belly, so I feel he is starting to catch up a little! We are still struggling with the dang PICC line, this week it clotted and it has clotted before but you could still flush it you just couldn't get blood back but this time nothing was going in and nothing was coming out so we had to go spend an hour in infusion therapy to get it worked out. My friend Katy has been so great and helps with Ryder anytime I need it so THANKS Katy! You are the best! Tomorrow is the Braveheart run and we are so honored that they picked our family to raise money for their first annual race! I met some of the cadets tonight and they were all so nice! We are still so grateful for all the hard work they have put into this! Mason has a day full of appointments on Thursday so fingers crossed we will come home oxygen free!

My cute litte St. Patrick's Day boys!

Our Heart Hero!

Once again took advantage of a picture while switching oxygen stickers!

Time is Flying!

Well obviously we have been home for a bit and I haven't posted anything! So where to start?! I guess we will start from when we got home, he is LOVING being home and we LOVE having him home! He came home still on oxygen and with his PICC line, UGH that PICC line might just be the death of me! He has had it for almost a month and still nothing is figured out with it. Home Health is coming almost daily drawing labs to see the antibiotic level in his blood and it is always too low so he is at 190 mg of Vancomycin. It makes me kinda nervous because a side affect of Vancomycin is hearing loss and he is on a lot for a little guy, so needless to say he is going to have a hearing test done on Monday. Also the dang thing has clotted twice! So I cannot wait for that to come out, It gets to come out on the 24th, WAHOO!! He also has had a post op appointment and they did a trial to see if he could go off his oxygen and he failed :( But they will try again on the 24th and fingers crossed we will come home without a PICC line and Oxygen! Up to 3 Ealry Intervention has come in to evaluate him and he is at 5 months on most of his skills and development except his gross motor skills. He is only at the same level as a 2 month old in that section. He is barley starting to lift his head off the ground while on his tummy and he doesn't put any weight on his feet so that puts him behind. But they will have one of their PT's come out and work with him to get him back on track. I cannot belive he is already 5 months old!

Things Mason loves/does:

He weighs 11lb 2oz (still not on the charts but growing!)

He is 23 1/2 inches long (1% yay)

He LOVES his mom! ♥

He thinks his brother is the funniest person ever!

He likes to eat his toes

He is curious about new people

He likes to watch the dog

He LOVES toys!

He smiles at anything, even when he is crying

He brings so much love into our home!

We love you Mason boo!

I had to take advantage of him pulling his oxygen stickers off of his face and get a picture of him oxygenless! :)

He is so happy most of the time!


His smile is contagious!