4-everQuist: Good bye CICU, Hello CSU

Thursday, July 22, 2010

Good bye CICU, Hello CSU

By about 3:30 today Severin was transferred to CSU (Children's Surgical Unit) 3rd floor. Otherwise known as "the floor". He has the "suite" with his own bathroom and a view. He still has just a bit of oxygen, NG-for the study medication, NJ for fortified momma milky, and one IV for lipids-he needs lots of fats. He still has a hoarse cry, they haven't done the swallow study, so no oral feeds yet. We will talk about that tomorrow. Feeding and how he is going to eat once he is home is our last goal to accomplish. Yeah!

5 comments:

UnknownJuly 22, 2010 at 9:36 PM
Yay!!! I am so happy for you! This is such a blessing! I cant wait for him to meet Auntie Julie!!!! :)
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One Happy Heart FamilyJuly 23, 2010 at 2:18 AM
Yahooo, thats a big step closer to going home!! The floor is so nice compaired to the CICU. I love that you can sleep in the room and shower and not feel like you are a stranger to your own baby!! Good Luck praying everything continue's going GREAT!!
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Grandma KarenJuly 23, 2010 at 1:11 PM
Angee, what terrific news!!! Such a great picture with so much meaning. Thom I have to say he looks just like you! Sounds like he is improving by leaps and bounds, translated means miracles pouring down from heaven.
We love ya.
Karen
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BrendaJuly 23, 2010 at 1:33 PM
Wow, things are moving so much faster then I expected. What an amazing day!!! Everyday I look to see what new milestone he has accomplished!!! We are so very happy for your family and Severin's success, and pray daily that he will continue to strengthen. You guys look amazing in your picture with him.
Sending lots of love, Brenda
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ChristinaJuly 23, 2010 at 4:10 PM
Yea for the third floor. Love that shows improvement. Hoping for good eating and home soon!

Hugs & Prayers,
Christina from IHH
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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!