Wednesday, February 16, 2011

A Year Ago Today

(I really started this post on Feb. 16, but am finally finishing
it today, Feb. 23, because we are spending all day at
PCMC for Mason's monthly IVIG treatment.)

A year ago today Mason and I moved ourselves to Palo Alto on a mission, a mission to save his life. Mason's heart was very broken and failing. Along with that he only has one healthy functioning lung. Mason was very little and weak for a two year old. His time was running short. We had to get him a new healthy heart to keep him here on earth with us.

I had made a very difficult decision. It was not a difficult decision to go and save my baby's life, but very difficult to leave my family behind in order to complete our mission. It was not easy, but leaving my other four kiddos at home in the care of very good help, so they could maintain some stability and consistency in their lives, was the best way I could go forward with our important plan.

It was the biggest LEAP OF FAITH I have ever taken in my life, but it also felt so right! It was hard in many ways, but yet so very right. (Click on LEAP OF FAITH to read my post when we had made our decision and how we would do it.)

I depended a lot on HOPE, FAITH, PRAYER, LOVE, and Him (Our Father Above) who has a special plan for our Miracle Mason............ to start THE NEXT CHAPTER of our heart journey. (Click on NEXT CHAPTER to read the post about the day we left Utah.)

It's hard to believe it has been a whole year!! It's hard to believe we were gone from our family for 5 months!! (But, it could have been soooo much longer). I am very grateful for so many things along this journey. Especially to all those who've supported us with love, prayers, service AND for taking care of my family while I was away on an important life saving mission!

We all survived and have been back together as a family for 7 months now. I hope my other 4 kiddos know how very much I LOVE THEM. I know sometimes it is hard for them to understand at such young ages why Mason takes so much of my time! I try so hard to balance my time and spread my love to all. I am grateful to them for being patient and trying to understand!!!

Hip hip hooray and cheers to our one year anniversary from our big LEAP OF FAITH!! We made it!!

Monday, February 14, 2011

CHD Amareness on Valentine's Day

It's Congenital Heart Defect Awareness Month!!

Before Mason was diagnosed with HLHS on his very traumatic 3rd day of life, we had never heard of a CHD (or maybe, never paid enough attention to know that children and adults with CHD's create a very large poplulation in our world)). You always know that something could be wrong with your unborn baby, but how many people imagine that their baby could have a broken heart?? It's a terrifying and unimaginable experience.

Many parents find out during their 2o week ultrasound, but not all CHD's are identified at that time, like Mason's (And that was at the fault of nobody in our case. Mason's heart appeared to have 4 normal chambers.) All a parent wants in that nightmarish moment, whether during their ultrasound or unprepared like we were after birth, is some knowledge about what is wrong with their child and HOPE that he/she will survive.

One in every 125 babies is born with a CHD. It is the #1 birth defect in America. This year alone, close to 40,000 babies will be born with a CHD.

Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined.

Though research is ongoing, at least 35 defects have now been identified.
4-8% born with CHD have Hypoplastic Left Heart Syndrome --> Mason's Defect
4-10% born with CHD have Atrioventricular Septal Defects
8-11% born with CHD have Coarctation of the Aorta
9-14% born with CHD have Tetralogy of Fallot
10-11% born with CHD have Transposition of the Great Arteries
14-16% born with CHD have Ventricular Septal Defects

Miracle Mason is our Superman!
Miracle Mason is a CHD survivor!

Mason has fought for his life for 38 months now , but his battle will never be over. After going through 2 open heart surgeries his first 6 months of life, living with heart failure, and then surviving heart transplant surgery with only one healthy lung he will always have to fight off rejection! Mason will also always have to be careful of contracting infections especially lung infections. Transplant is not a cure. It is almost like trading one problem for another. But I will take the issues that come with Mason's lifesaving transplant over losing him to congenital heart disease and heart failure! He will FOREVER be on medications, will NEVER stop visiting his cardiologist regularly, and he will always have the possibility of needing oxygen therapy some day again because of his pulmonary vein stenosis .

Please consider becoming a blood donor and organ donor!

Please help us spread CHD awareness.

Their will probably never be a cure for the cause of CHD's, but with more funding and research, children born with CHD's will have a better chance of survival. Having a superman in our family has been nothing less than an amazing and joyful blessing, but many families lose their babies to CHD before they even have the chance to get to know their little miracle. I am grateful for our wonderful pedatricians office, American Fork Hospital, Primary Children's Medical Center, Lucille Packard Children's Hospital at Stanford, and of course the hand of our Savior who have all played a role in Mason's survival,

(Click on image to enlarge)

Tonight Paul Cardall is putting on his 2nd annual concert to help families affected by CHD's. Mark and I are going tonight and I am very excited! (It's not to late to get tickets!!) Last year I missed it because I was packing to leave for Stanford the next day and also needed to spend my last night home with my family. Can you believe it will be one year on the 16th (Wednesday) that Mason and I flew to Stanford, taking a huge leap of FAITH to get Mason a new heart?!!


Tuesday, February 8, 2011


Braiden turned 8 today!!

(This picture was taken in the fall of 2009)

Oh how Braiden loves his baby brother Mason.
He was so sensitive and worried about him when I took him
to Stanford to wait for a new heart last year. He called me in
tears many days concerned about Mason being able to get
a heart and come home. Braiden is a very tender hearted,
loving, and fun boy. I'm grateful to call him mine!

Happy Birthday Braiden! I love you!

Thursday, February 3, 2011

38 months & Steroids

On January 3oth Mason turned 38 months!
He is my Hero!
He has fought for his life each one of those months!

At 38 months:
Mason is finally warming up to his therapists that come out to our house . He has Physical therapy 1 x per week, Occupational therapy (for fine motor skills) 2 x per month, Speech 2x per month, and his preschool teacher visits 1 x per week. I am truly grateful for this home hospital program he qualifies for, because he is too immune compromised to attend preschool or therapy!

Mason's legs are getting stronger and his confidence is building....... thus soon he should be walking!! One of his issues I think is his 'steroid body' - skinny little legs and a very chubby tummy. He is quite top heavy! Though after many months of trying he will finally let two of us walk with him. One of us on each side of him holding his hands. He will take 10 to 15 steps. That's huge for our Miracle Mason!!!

His talking is coming along well also. His sentences are only about 3 sentences long and sometime only I can understand him, but it works for now. I've also taught Mason sign language since he was 1 year old, but now that he thinks everyone can understand 'Mason language' he doesn't use his signs as much. We still watch 'Signing Time' DVD's a lot because I believe they help with oral language too. (They help Ammon's speech too, so it's double duty if I get them both watching!)

Mason's fine motor skills are already pretty good, but is great to learn with him the different activities he would be doing if he were attending preschool right now.

On January 3oth, Mason also finally finished his steroid taper from the large doses he received during his last hospital stay. I'm so glad he is back down to his normal dose 2x a day, but am certainly anxious for him to come completely off of them. Steroids are a medical wonder drug because they can do many great things...........but along with that comes some nasty side effects. Our hope is to come off in April after Mason's ONE YEAR post transplant check up, catheter and biopsy at Stanford. When he comes off steroids he will also get to come off of his anti-viral med (Valcyte), his anti-bacterial (Bactrim), eventually off of his 3 blood pressure meds (Verampimil, Valsartan, and a Clonidine patch), and his 2 anti-acids. He takes all of those because of being on steroids. He will still take at least 2 meds for life. Those are his anti-rejection meds.

There was one good side effect that came out of the large burst of steroids......... an APPETITE. Yes really! Look who's eating......

BBQ potato chips

Mason would eat chips breakfast, lunch, and dinner if he could!
(Okay, shhhh sometimes he does, but at least he's eating.)

A Bowl of Cereal

Just like the big kids.

Some of the other things he's eating are: fruit leather strips ,
(The ones from Costco. He loves them!), string cheese, yogurt
gold fish crackers, apples, eggs, shredded chicken, pasta, and pizza
Even though he doesn't do well on dairy based formulas, he seems
to do fine with cheeses and yogurt. He's not quite eating enough
calories though to survive on yet. I still supplement with G-tube
feeds at nap time and bed time. But hey, it is a great start back
to surviving without his GT button. Although as nasty as all his
meds taste, I am very very grateful for Mason's GT button!

Another side affect of steroids (as well as Cyclosporine- one of his anti rejection meds) is growing lots and lots of hair...........

All those thick curls are cute on his head, but.......

on the rest of his body........ not so much!

I hope to switch to Prograf (instread of Cyclosporine) when he
goes off steroids so he can lose some of his extra hair. I think
I've mentioned this before, but Stanford's team doesn't like to
put their transplant patients on Prograf (which does not cause
the extra hair growth) while they are still on steroids. Sometimes
combining them together can cause blood sugar issues. Poor little
Mason hates bandaids, EKG stickers, or the dressing around his
port when he is accessed for IV use because he knows it hurts
to take them off.......all that darn hair!!

Okay and another secret,
Mason grows hair across his whole forehead and he gets a big
uni-brow, but I either use "gentle facial Nair" or we shave him
with hair clippers. His chubby cheeks already draw enough
attention that I don't think he needs all that extra facial hair too!

One more thing.......his hair used to be curly and BLOND! Has
anyone ever seen steroids or Cyclosporine change hair color too??

The most obvious side effect are Mason's rosy chubby cheeks:

Look at Those Cheeks

( And definitely not a side affect: sleepiness! This is a rare occasion!
After that big burst of steroids it got even worse. He wakes like
he's having nightmares several times a night and screams for up to an
hour each time. But I will say this week that has started to lessen back
closer to his normal steroid sleeplessness.....which still isn't great!)

More Cute Cheeks

Steroids can also make you very irritable and grumpy!! Which is Mason a lot :( But, towards the end of the steroid taper over the weekend we began to see some smiles and playfulness. Mason pulled out muffin tins from my baking drawer, sat on them, and scooted around the kitchen, just like old times. Oh, how he was laughing!!! I can't wait 'till he's off of the 'wonderful but awful' steroids to have Mason happy ALL THE TIME....... or at least more often :-)

Miracle Mason, Our Little Scooter Boy

Tomorrow, February 4th, will be 9 months since Mason received his Angel Heart!! Has it really been 9 months? Were Mason and I really away from our family for 5 months? It is so hard to believe that is all in our past now!!

Today I am so grateful, as I am every day, for Mason's donor family and the sacrifice they made to give my baby another chance at life. I am grateful to my Father Above and His Son who've made IT ALL possible.