I've been on a support group online for families affected by tetralogy of fallot. In checking the message board this morning, there was a post from a woman who's nephew was born with tetralogy. His name is Edgar, and I'm not sure how old he was, but he had not yet had any surgery to correct his defect. He had "extreme TOF with pulmonary atresia," which is very similar to what Nevaeh has. He had been doing fairly well, but today she posted that he has passed away. He wasn't able to have surgery in time. They live in Zambia, I believe. Please keep Edgar's family in your prayers through this rough time in their lives. I can't imagine what its like to loose a child. I know I have had nightmares about such a thing, and it saddens me to know that people have to go through such terrible times. Again please keep Edgar's family in your prayers!
skip to main |
skip to sidebar
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!
Add Snippets to your site
_______________________________________
"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
|
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
No comments:
Post a Comment