I've been doing really well with the anticipation of Nevaeh's surgery, until today. At noon I received a phone call from the University of Michigan that they have bumped Vaeh until next Thursday, May 15th. I am so upset because we had everything scheduled here for us being gone this week! Now we have to completely rearrange schedules! This will really put a wrench in Jon's work schedule:( I just wish the whole thing were over & done with! Now my nerves are kicking into high gear! Maybe I should have the doctor drug me until its all over - LOL! Oh well, I guess that there's a reason for everything!
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Look out world, here I come!
I know I'm cute, do you?
The Story of Kate's Kart Link over & see the story of Kate & their journey to Kate's Kart! Such a wonderful family with such a wonderful cause!
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"The will of God will never take me where the Grace of God will not protect me!"
Reflection of Heaven!
Nevaeh Kaylene Walp was born on September 17, 2006. She was three weeks early, and eager to join our family! The day after joining us, she was diagnosed with Tetralogy of Fallot with pulmonary atresia, VSD, MAPCA's (collateral arteries), right aortic arch, as well as PFO (Patent Foramen Ovale or ASD (Atrial Septal Defect)). We would soon come to learn that her journey would be filled with hospitals, tests, and many surgeries. She has now had three open heart procedures including her "full repair", as well as six heart catheterizations, and her PEG/ G-tube placement. She is now considered "repaired", & just recently we were able to have her feeding tube removed! We still face daily medications, & heart caths, as well as possible open hearts to keep up with her growth, although hopefully not for 3 - 10 years. Our next big hurdle is dealing with the diagnosis of pulmonary hypertension.
Despite all of her exentricities, she is an enormous source of joy in our family! She is an inspiration to us. We feel blessed to have her with us each and every day she is here! Thank you for stopping by to meet her and continue with us on this journey!
Despite all of her exentricities, she is an enormous source of joy in our family! She is an inspiration to us. We feel blessed to have her with us each and every day she is here! Thank you for stopping by to meet her and continue with us on this journey!
Memorable Quotes
"There are only two ways to live... one is as though nothing is a miracle...the other is as if everything is." - Albert Einstein
"Dont' tell God how big your storm is... tell the storm how big your GOD is!!" - Unknown
"Life is a coin. You can spend it anyway you wish, but you can only spend it once!" - Unknown
"Dont' tell God how big your storm is... tell the storm how big your GOD is!!" - Unknown
"Life is a coin. You can spend it anyway you wish, but you can only spend it once!" - Unknown
Posts
Journey with us:
Look out world, here I come!
Inspirational Verses
Jeremiah 29:11 "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future."
Psalms 139:13 "For You created my inmost being: you knit me together in my mother's womb."
Exodus 9:16 "But I have raised you up for this very purpose, that I might show you My power and that My name might be proclaimed in all the earth."
Psalms 139:13 "For You created my inmost being: you knit me together in my mother's womb."
Exodus 9:16 "But I have raised you up for this very purpose, that I might show you My power and that My name might be proclaimed in all the earth."
"CHD Definition:"
Congenital heart defect - This is really one of several code phrases for an intensive training course in learning the true meaning of Jesus, I trust in you. This training involves great spiritual growth and opportunity for deepening and greatly magnifying one's prayer life. There may even be a special retreat involved where one can really progress in prayer. The special code term 'open-heart surgery' is often used for this unique retreat that takes place in a hospital.
About Me
- Tina:0)
- I am lucky enough to be married to the most wonderful man in the world, and to be the mother to the two most precious little girls God ever created! And now on a journey through the world of congenital heart defects with our youngest daughter.
I know I'm cute, do you?
Gabby's Blog!
Blog Archive
our little heart friends!
- Addisyn
- Aiden
- Angel Colin & Drew
- Angel David
- Angel Grace & Luke
- Angel Hope
- Angel Kate
- Angelina
- Arianna
- Ashcer
- Averi
- Bentley
- Bilal
- Brody
- Carly
- Cassidy
- Devin
- Elaina
- Elijah
- Emma
- Grace C's blog
- Grace C's page
- Gracie B
- Hailey
- Isaac
- Kaitlyn
- Lindsay
- Logan
- Maddison's blog
- Maddison's carepage
- Moriah
- Nathan
- Nevaeh Hope
- Rhett
- Rori
- Stephanie "The Champ"
Other blogs Momma reads!
Kate's Kart
The Story of Kate's Kart Link over & see the story of Kate & their journey to Kate's Kart! Such a wonderful family with such a wonderful cause!
Links about CHD
Other interesting links
Nevaeh's Birthverse
Nehemiah 9:17 (NIV) "...But you are a forgiving God, gracious and compassionate, slow to anger and abounding in love..."
To find your birthverse:
http://www.birthverse.com/mybirthverse.cfm
To find your birthverse:
http://www.birthverse.com/mybirthverse.cfm
Daughter
Just think,
your daughter is here not by chance,
but by God's choosing
His hand formed her and
made her the person she is.
He compares her to no one else-
she is one of a kind.
She will lack nothing
that His grace can't give her.
He has allowed her to be here
at this time in history
to fulfill His special purpose
for this generation.
Roy Lessin
your daughter is here not by chance,
but by God's choosing
His hand formed her and
made her the person she is.
He compares her to no one else-
she is one of a kind.
She will lack nothing
that His grace can't give her.
He has allowed her to be here
at this time in history
to fulfill His special purpose
for this generation.
Roy Lessin
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The Chosen One
~THE CHOSEN ONE~
I had a dream the other night
It came to me so clear.
I stood before the throne of God,
Afraid to come too near.
God said to me,
I hear your prayers,
There you can't find.
I asked you here to talk to me
And help to ease your mind
I said well yes God,
I am upset
About my special one
That punishment is awfully harsh.
Whatever have I done?
God looked at me and shook his head
And said you've got it wrong.
I sent this special child to you
Because you are so strong
I searched and searched to try and find
Someone with love so rare
A parent so unselfish they could
Give that special care.
I try and save my special gifts
Like those you're speaking of
For special kinds of parents
I call the "Chosen Ones"of all the ones to choose from
I think this I have done
A parent who deserves my best,
An honor you have won!
-UNKNOWN
I had a dream the other night
It came to me so clear.
I stood before the throne of God,
Afraid to come too near.
God said to me,
I hear your prayers,
There you can't find.
I asked you here to talk to me
And help to ease your mind
I said well yes God,
I am upset
About my special one
That punishment is awfully harsh.
Whatever have I done?
God looked at me and shook his head
And said you've got it wrong.
I sent this special child to you
Because you are so strong
I searched and searched to try and find
Someone with love so rare
A parent so unselfish they could
Give that special care.
I try and save my special gifts
Like those you're speaking of
For special kinds of parents
I call the "Chosen Ones"of all the ones to choose from
I think this I have done
A parent who deserves my best,
An honor you have won!
-UNKNOWN
8 comments:
YES, there is a reason for everything and continue to trust in that. The 15th is Vaeh's day, for whatever reason. I know you just want this over with, but have faith that this is the right thing. I know what you mean about wanting to be drugged till it's done. :) Hang in there!!
Sorry about the frustrating delay, but I definitely believe there is a reason for everything. Hang in there, one day at a time!
Yes...there's always a reason.
We get bumped around ALL the time...and it's always worked out great!
Hope you can fix your schedules...now, you have more time to smoochy moochy on that cutie pie!!!
SMOOCH AWAY!
I know it's hard when your mentally prepared, they did the same thing to us. I hope Jon can get his scheduled worked out. It's all apart of a bigger plan. It gives Vaeh a little more time to show of all those new skills. :)
Thank you so much for introducing us to your precious Vaeh! Please know i'm praying as you prepare physically and emotionally for her surgery (again). Never hesitate to let me know if there is anything we can do for you.
For Prayer Support:
www.asherandjacobsfriends.com
My two little miracle nephews:
www.caringbridge.org/visit/asherandjacob
Oh no-so sorry about the surgery being moved! Like everyone else said-this is the way it's meant to be even though that's hard to see right now. Thinking and praying for you all.
The Domanicos
Tina,
I'm so sorry to hear about the postponement! Just remember that it's all in God's hands....His timing is best. I know how frustrating it is. We had family fly out from NJ twice for Emma's surgeries that ended up being postponed! I thought there'd be no one left to help when the time really came, but thankfully, it all worked out. This will, too!
Give that sweet girl an extra big heart hug from us! We have been keeping you all in our thoughts and prayers around here! :)
Lots of Love,
Wendy (& Emma, too!)
www.caringbridge.org/visit/emmanicole
just stopping by to say hi and read about precious little Nevaeh.
from Asher and Jacob's Friends
Karen H
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