Wednesday, July 13, 2011

Heart Buddies and Prayers

Have I ever commented how amazingly special the "heart world" is? Before Mason was diagnosed at 3 days old I was completely oblivious that this world even existed. But, let me tell all of you how wonderfully supportive it is to be a part of this heart world. As "Heart Moms" we understand each other, we cry together, we laugh together, we learn from each other's experiences, we pray for each other, and we truly love each other. We love their heart kids like they are our own. Never does a day go by that in my personal prayers and our family prayers we don't pray for "Mason's Heart Buddies"!

During Mason's recent hospital stay we met some new heart buddies. Two of which are 12 years old, my Kaitlin's age. These 2 were very healthy one day, and the next day very sick and in need of a new heart. This is hard for me to fathom, even being part of this heart world. I just picture this happening to my own daughter! It's one thing to know from 3 days old (or for some since your pregnancy) that your baby will have a tough road ahead , but completely another thing to have a completely healthy pre-teen collapse and need CPR before your eyes!!! Okay both scenarios are hard and just make me want to shout........ "appreciate each day of life with your kids and loved ones like it could be your last!" You just never know what tomorrow brings!!!

Please pray for our heart buddies............

This is Abby.
She is a 12 year old soccer player from St George Utah.
She received a new heart YESTERDAY!

This is MiaBella.
She is a 12 year old soccer player from Salt Lake.
She received a new heart on June 5th.

This is Shakeara.
She is a 22 year old young wife from Preston Idaho.
She was born with a CHD and has had several surgeries.
She now is experiencing heart failure and liver problems.

Now this is our heart buddy Kaidence from the very beginning
of our heart journey. She has had vocal cord issues since her
heart transplant in December of 2007. She spent the night at
Primary's while we were there this last time after she had
another procedure done on her vocal cords. We were right
across the hall from each other. Her mommy and I had fun
catching up while Mason and Kaidence played together out on
the third floor patio. It was so wonderful to see them play together,
for 3 1/2 years ago they were two of the sickest babies in the PICU!

And how's Mason doing?

Mason has enjoyed being back home!
We spent the 4th of July at baseball games,
his most favorite way to spend time lately.

He was happy to see his little baseball game buddy
Kiersten.He had missed hanging out with her
while he was so sick and in the hospital!

Big brother Preston bought him a blue sucker at
another baseball game last week. Not the best color lips
for a heart kiddo! Especially his first day off of O2's
from his recent pneumonia! (Note to self: only
red suckers for Mason please!)

Mason did pretty well coming home from the hospital, except for completely mixing up his days and nights! By day 5 he was able to come off daytime O2's!! Woo hoo!!! But........ by night number 6 he began to have relapse. He coughed so hard all night that it caused him to throw up. He also had a low fever. He had hardly coughed since his discharge, so I was worried the pneumonia was coming back. Dr W, our pediatrician, checked him out for me that next day and sure enough...... his left lung sounded very junky. His left lung wasn't completely clear when we left the hospital, but definitely not this bad. Poor little guy and his left lung that just doesn't want to behave itself!!!

Mason is now on another round of oral antibiotics (Omnicef) which hopefully will do the trick and back on O2's day and night. I'm praying we don't have go back to the hospital for IV antibiotics. Mason has lost all of his steroid chubs now (I think from the strong IV diuretics he received while in the hospital and from coming down again on his steroid dose), but on top of that he has lost weight from his constant antibiotic induced diarreahs. I'm trying everything I can (by mouth and G-tube) to help put some weight on this skinny little kiddo but everything seems to go right through him right now. So please add to your prayers that Mason can gain some weight and get stronger. He needs to put some meat on his bones so he can walk!!!!

Thank you to all of Mason's fans and supporters. Thank you to all my "Heart Mommy" friends for your friendship and love. Thank you to all those who continue to pray for my Miracle Mason.


The Simmons Family said...

I loved this post! Massy has the same little chicken legs as Owen...I just know he'll be walking soon!

Kyle and Alli said...

Mason is looking so much less steroid puffy, even with his little skinny body! I agree with the red suckers... it makes me laugh everytime I give Grant blue ones. Bad idea! Hugs to you guys!

Ali F. said...

Ahhhh! beautiful!

Djinni said...

Always GLAD to support you and Mason. I thank Heavenly Father every night for all of my friends in the Heart Community. It is such a blessing to have a great local support group. Several years ago I felt so alone here in Utah going through heart trials with my son, although I had support from heart moms on the east coast, it wasn't the same. I'll keep praying for Mason. I hope to visit with you more someday in person.
Heart Hugs, Djinni (mom to Isaac "

Moffitt Fam said...

We too are grateful for the heart world and the support it gives us!! On Wednesday we lost another sweet heart hero. Her name is Sophia Hall and she was only 8 months old. She was at Stanford for a while but then came home a month ago because they could no longer help her sick heart. Her family has been so strong through their trial! On another note, Tyler is going in for his fontan on Wednesday! So if you could please keep him in your prayers!! We are always thinking of you and Mason!

madelyn said...

You are so right - the heart community, while not one we willingly chose, ROCKS!!! We are humbled to be able to pray for Mason. I pray the junk goes away soon and he will be back to eating and gaining weight. We went through a long, 'skinny' spell. Ava is now 52 inches and 61 pounds! Mason will get there, little by little, pound by pound. Praying for stronger, sunnier days ahead.

Jennifer said...

Your blog always helps me to "find center". Thank you for that!

Tory Miller said...

Just wanted to say hi! I saw you guys at old navy yesterday.(kinda felt like I was seeing a famous person! ;)) Mason is so cute. I was the one at the checkout with the screaming baby in the car seat! I have been following your blog ever since Masons big day and I'm always glad to see him doing good and sad for you when he is sick. I cannot even imagine being in your shoes. Thanks for sharing your story!