4-everQuist: Bottle feedings coming soon

Monday, August 16, 2010

Bottle feedings coming soon

Due to MY adventure last weekend Severin was not able to start his oral feeds. Until today. We went to the Pediatrician, Teresa came to be the pack mule and carry Severins monitors because I can not lift more then 15 pounds. And all his crap is more then that. He weighs 8.2!!! He had his NJ pulled to his tummy, then an Xray to check the position. Tonight I had the Home Health Nurse come and make sure I placed his new NG tube correctly. I did it on the first try and only made Severin purple a little. The new NG tube is smaller and I was able to put it in the other nostril, and tape it to his face better. He is on 18cc continous feed for tonight. This will be the last night I can sleep. Tomorrow he will be on the every 2 hour schedule 'round the clock. He will take 26cc from a bottle, or as much as he can and then NG tube the rest. My Mom and Morgan are taking care of him tonight, so I can sleep and recover my own body the best I can. I had better get to sleep, or my mom will get mad. Does that sound like I'm 8 or what?

2 comments:

AnonymousAugust 17, 2010 at 6:33 AM
I love it! And no, you don't sound like you're 8! Since it's bottle feeds and not nursing yet, you know you still have help! I don't want you overdoing yourself and not getting better. I'll call and check on you later!
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UnknownAugust 19, 2010 at 4:46 PM
If I were you, I'd ACT like I was 8, and get sent to bed earlier than that!!! Hope you are doing fantastic!!!
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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!