4-everQuist: Update #4 1:00

Thursday, November 15, 2012

Update #4 1:00

Just had a surprize visit from Dr. Kaza. He said everything was great! He gave me a piece of the Gortex conduit that is in my boy. It was an 18 mm in size, it fits on my finger, a little bit bigger than a penny

It is soft and a bit stretchy. A heart mom just came past and said she just saw him on his way to the CICU and he looks great! We can go be with him in about a half hour.

7 comments:

KatieNovember 15, 2012 at 1:00 PM
Isn't it crazy holding that tube? Maddie's surgeon gave us a piece cut off from hers too (the extra) and I was just amazed that that piece of plastic was saving her life, hopefully creating a better one for her. It still amazes me when I think of medical advancements and the equipment they use to help save little ones lives. So happy he's on his way to the CICU...hang in there!
ReplyDelete
Replies
UnknownNovember 15, 2012 at 1:30 PM
LOVE YOU GUYS!!! We are praying for Severin and you like crazy.
ReplyDelete
Replies
MelissaNovember 15, 2012 at 1:33 PM
Can't wait til you can be with him!
ReplyDelete
Replies
TraciNovember 15, 2012 at 2:48 PM
Our boys have matching tubes inside. :) I hope you're snuggling him now and he's sleeping peacefully! Hugs! (And tell Dr. AK hello from Team Maddox) Luv ya!
ReplyDelete
Replies
AliNovember 15, 2012 at 2:54 PM
Wahoo! So happy to hear this! Sev is a strong cookie and will rock the recovery!
ReplyDelete
Replies
ChristinaNovember 15, 2012 at 4:59 PM
I keep checking in. Know that You have been in my thoughts and prayers all day! Hugs!
ReplyDelete
Replies
Heart MommyNovember 15, 2012 at 7:55 PM
Thinking of you guys all day today!!! Glad things have gone well.. Kiss those now warm toes of his for Eden. She would smooch his face too!!!
ReplyDelete
Replies

Add comment

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!