4-everQuist

Thursday, November 3, 2016

Mom's Birthday

Severin is the hewhocannotkeepasecretifhislifedependedonit sort of kid. For 2 weeks he has been so excited for my Birthday. He would say "oh mom you are going to love what we got you for your birthday"
me:* oh really*
Sev: "yeah but I can't tell you so don't even ask"- then laughs hysterically
This is the reason:

The bum is on a spring so it wiggles when you move the card. Like it is shakin it's booty

You know you are a boy mom when your Birthday cards include body parts or bodily functions. Maybe someday Neleh will get me a fluffy, sappy card. But *not BUTT* for now we will get a good laugh.

Wednesday, November 2, 2016

Provo City Center Temple Dedication March 20, 2016

When Neleh turned eight, she was most excited about being old enough go to the Temple Dedication. In addition we were able to go to the Temple and see the Brides Room on a special Mom and Daughter Tour. They asked for no talking but she had questions and I had so much to tell her. So I ended up carrying her through the Temple so we could whisper in each others ears. At the end of the tour they had our Bishopric hand each girl a white hankie with the Provo City Center Temple embroidered on it. Neleh was so proud, now she had a white hankie for the dedication. I do not know if she will choose that Temple to be married in, but the experience with her there is a forever treasured memory for both of us. I look forward to the day I get to be with her in a Brides Room again in the House of our Lord. Although I do not want to rush it here any sooner....

My 'dates"

Tuesday, April 5, 2016

Brothers...

J: Sev get your feet off me! as he has his feet on his bare back under his shirt
S: But you are so warm....

Heart kid problems, cold feet...
HAHA!

Heart Month Day #29 Teach **Bonus DAY!!!!

Lucky this year Heart Month has an extra day!
Severin has taught us how to live in the moment, FOR the moment. He has taught us to Hope. He has taught us to see the good in every situation. He has taught us to have Faith. He has taught us to fight. He has taught us to pray. He has taught us to never give up. He taught me a different way to parent. This summer he has been asked to come and TEACH other parents with me in the Parent Hour at the Hospital. He is a natural in front of a crowd. Who knows maybe someday we will be voting Severin for President.

Heart Month Day #28 Love

So much LOVE! He began with LOVE. Everyone who has met him LOVES him. This boy brings the excitement to everywhere he goes. He LOVES everything. I ask him to pick one thing he LOVES the most, he can't decide. After much thought he says 'playing'! I hope he always has a LOVE of life!

Heart Month Day #27 Joy

JOY...
Every night when this little Monster finally stops and falls asleep. I am reminded of the journey we are on, His journey. That is joy. Joy for one . more. day.

Heart Month Day #26 Inspiration

Leave a comment if Severins Heart Journey has Inspired you in any way...
I have had the opportunity to meet many Adult CHDers. One is Michael. We met through a guy Morgan when on a date with. You may remember Michael from the blog post September 28, 2011 titled "our new heart hero- Michael" Michael changed me. He changed how I looked at Severin. I stopped looking at the "what ifs" and started seeing the "what now". My biggest fear is that I/We made the wrong decision for Severin's life. I didn't want him to ever feel like his life was a waste. Michael answered that. He never felt like his burden was a waste of his life. Michael has gone to Heaven. I never posted about that day. It is too sacred to me. He continued to inspire me upon his death, at his funeral, and even still on quiet days. He will always be in my heart.

The Day I Became A Heart Mother

One day my world came crashing down,
I'll never be the same.
They told me that my baby was sick.
I thought, "Am I to blame?"
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.
I will not give up on this child.
I will listen to your advise.
I will give my son any chance
No matter what the price.
I will learn all I need
To help my baby thrive.
I'll even use that feeding tube,
My child must survive!
Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
As I accept our fate.
When the monitors beep at night,
it serves as my reminder.
How many parents would love that sound,
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my baby's bed.
I watch him sleep for quite a while,
I bend down and kiss his head.
I cry for the parents whose hearts have broken.
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 begs, "PLEASE let him stay!"
From pacing the surgical waiting room,
to sitting by his 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 scar I trace with my finger
(It's the door to his beautiful heart).
God must have known how much I'd love him
(Just as He loved him from the start).
A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.
Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day....
When I became a "Heart Mother."
- Stephanie Husted
Mommy to Braeden HLHS

Every Heart Has A Story... This is Severin's

March 4, 2010 19 week ultrasound. We were told something was not normal about our babys heart

April 12,2010 Perinatology confirmed Tricuspid Artesia, Hypoplastic Right Heart Syndrome, Transposition of The Great Arteries

April 20, 2010 Fetal echo confirmed everything that "could" have been wrong with Severins heart, was. We refer to this day as "the holy crap day" Diagnosis: Tricuspid Artresia, Hypoplastic Right Heart Syndrome, Transposition of Great Arteries, Coarctation of the Aorta, Ventrical Septal Defect, Double Inlet Left Ventrical, his Pulmonary Artery is too big and his Aorta is too small.

July 7, 2010 Birth of Severin!

July 13,2010 First Open Heart Surgery

Modified Norwood, Damas-Kaye Stansel, Coarch. repair,BT Shunt, ASD created

Nov. 22, 2010 Pre Glenn Heart Cath

Added to diagnosis: Pulmonary Stenosis, and Aorta has a "twist"

November 24. 2010 Second Open Heart Surgery

remove BT Shunt, Glenn Procedure, replaced 80% of his Pulmonary Artery

April 16, 2012 Heart Cath
Stent placed in Left Pulmonary Artery, due to narrowing. Increasing LPA diameter 3 times the size, and making it "normal" size

November 15, 2012 Fontan Day!

Sev ROCKED the Fontan! He was discharged 5 days post op. We have never looked back. He is healthy, growing, and so dang smart! He sees cardiology yearly. And the rest of the time he is a NORMAL little boy!