4-everQuist: February 2012

Wednesday, February 15, 2012

Where in the HE double hockey sticks did this kid come from????

I've decided to call him "Kamikaze" literal translation is "God wind" or "Divine wind" He goes through life on full throttle, never looking back. He has recently discovered how he could get up on the top bunk. Oh I can see the blood, bruises and broken arms now!!

Oh how I love these kids!

I asked Johnathen to read the kids a story while I ran upstairs. This is what I came back down to

So cute! He is reading it to them in Severin's crib. I don't want to know how they all got in there.

Severin the Famous Pianist

Watch out Paul Cardall you have some competition! He plays in his pjs!

Sweethearts Dance MMHS- Morgan and Scott

Dinner at Magleby's Scott and Morgan

Ok this next one proves she is my daughter and a total goof! But it does show the tights I searched for for two hours and paid 12 bucks for!

A date is just not complete without a trip to Walmart to ride the pony!!! So glad she choose to ride side saddle...

Happy Birthday Neleh!!

Neleh got a Barbie house for her birthday! My Dad made this one for my little sister and I when we were little. When my parents moved they didn't want to take it with them. So I made a deal with my sister that when her daughter out grows it then I get it for my daughter. I didn't even have Neleh yet. My dad and I did a barbie home makeover for a month. The best part was seeing my Dads face when I told him I wanted to tile the kitchen! As you can see it is a huge house. Neleh has to climb in it to play. I know this will bring her HOURS of entertainment just like it did for us. (The boys like it too)

Neleh and Lilly. Being Princesses- of course!

Neleh had a friend party. It was a Tea party and we ended up having 13 kids, ages 6-2. Now that was a housefull! I was so thankful Jeni wanted to stay with Lilly. We had fun little foods. I can't believe I didn't get any pictures of the spread! It was so fun making little foods, and watching the kids "serve" themselves. There was a lot of mess but the kids had fun and that is what it was all about.

Jan. 30 2012, Severin 18 month check up

Here are the Stats: Height: 31 inches, Weight: 24.1 lbs. Dr Paxton is pleased with his growth. We discussed the next surgery**big sigh. Severin is right on track, on the smaller end but doing very well. And the BEST part of all, NO SHOTS!!! Mommy had her thinking cap on at the 15 month check up and did them all then. Such a wise Mommy.

Wednesday, February 1, 2012

CHD Awareness Week Feb.7-14 2012

"Their stats" vs His stats
"CHD" Isn't that what old people have? "Less than .03% chance of these heart defects happening." Who cares it happened to my baby - so that makes it 100% for him! "Only 60% chance of survival." Not today.
PreDiagnosis: 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 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
Fontan in summer 2012
My Son is not a statistic. He is a SUPER HERO!

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!