4-everQuist: The " DO"

Sunday, July 11, 2010

The " DO"

I finally got a picture of the totally awesome hair do. They will change the O2 monitor tomorrow and I asked if they could wait and let me wash and do his hair again- just little mommy indulgences. I always change his bum too. It's the little things that I can do to feel like his mom. He had to get some blood today. They have had to take a lot for lab work. Surgery is scheduled for Tuesday. I might be able to hold him by next weekend. When I say "I" I mean "we" because I will share him a little bit with Thom. He gets cuter everyday. He likes to hold hands and listen to Dads voice. I worried that I wouldn't know how to comfort him, but the Mommy instincts are strong, and he is good to let people know when he doesn't like what they are doing. You know like stops breathing. This is just the way his normal is going to be and it is us who needs to figure it out. I plan on a mellow day tomorrow, I hope Severin does too. Thank you for your suppport.
Loves

5 comments:

utdaisyJuly 12, 2010 at 9:26 AM
Hey #2 (who's really #1)...Congrats on your beautiful baby boy! Michael was a little bummed Severin missed his birthday by 2 days, but we're glad everything went well. Please let us know if there is anything you need...babysitting, housekeeping, meals...we're really pretty versatile. Tell Neleh we missed her yesterday, too:)

Every time I walk the halls at Primary's, I feel the comforting spirit of the sacred work that goes on there, and I hope it will comfort you as well. Severin is in great hands. We've been thinking of you and we will be praying for a successful outcome tomorrow. Keep your chin up! Love from #1 who's really #2
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BrendaJuly 12, 2010 at 3:34 PM
Love the Hair!!! Looks like you guys are getting all cozied up and enjoying your time with him. Look forward to hearing more, but mostly seeing you all safely at home. Love ya lots, Brenda
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covesmomJuly 12, 2010 at 3:47 PM
Precious boy, I love him! I want to kiss his little cheeks and that squishy little bridge of his nose:) Love you guys so much and still pulling for you and praying my heart out
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michelleJuly 12, 2010 at 8:23 PM
He is so adorable! Even with all of that fun stuff he gets to have on him he is so beautiful! Best of luck tommorrow we will be thinking of your lil family and praying that he does great! Hope you got to spend sometime with your family today and loving each second you get with that precious babe! Hang in there! Lv the Jensens
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AllisonJuly 13, 2010 at 7:41 AM
Today is the day right?? We will be watching and praying for a successful surgery with no complications!!
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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!