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Saturday, March 23, 2013

Jeremiah 29:11

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For I know the plans I have for you "declares the Lord," plans to prosper you and not harm you, plans to give you hope and a future. 




Love bug thought this was the pose of the day?

Whatever? She's a doll, belly showing or not!




We had our appointment with the cardiologist on 

Thursday as you know, and we got the results 

from the blood work done on Monday.

The results of her electrolytes were delightful! For 

the first time ever Ivy's electrolytes (potassium, 

sodium and Magnesium) were within NORMAL 

(or almost normal) range!!! This is very huge for a 

child on so many diuretics for her heart. Blessed!


But the biggest part of the blood test was the BNP.

BNP is a substance secreted from the ventricles or 

lower chambers of the heart in response to changes 

in pressure that occur when heart failure develops 

or worsens. The level of BNP in the blood 

increases when heart failure symptoms worsen and 

decreases when the heart failure condition is 

stable. The BNP level in a person with heart 

failure, even someone whose condition is stable, is 

higher than a person with normal heart function.

A BNP level below 100 pg/ml indicates no heart 

failure.

100-300 pg/ml suggests heart failure is present.

100 to 300 pg/ml indicates mild heart failure.

Over 300 pg/ml would indicate moderate heart 

failure.

600 pg/ml would indicate severe heart failure.




Ivy's BNP left us all speechless.

3800 pg/ml

this in not a typo


What on earth? Who on earth could be there and 

look like this! Her and that big old donut! Our 

fighter! Mini sized miracle. Determined and 

mighty!


Only a super star!


Only God! He knows! He is the only one who 

knows. We are just waiting on Him. We trust Him, 

we love Him, we believe He is in control and He 

has a plan better than we could ever imagine. He 

clearly is protecting our baby girl. She is nothing 

short of unbelievable and it is all because of one 

miracle after the other. Yes, lots of pain and 

suffering, yes, a few big scars, but all this and look 

at her! She is a happy, funny, loveable, adorable 

toddler living and loving life! 

Her echo shows some moderate to severe tricuspid 

valve regurgitation. This could still be from those 

high pressures in her lungs. She was in the 90's for 

pulmonary hypertension 3 weeks ago and she is 

down to the 70's today. So still severe, but 

trending down and we like that a whole lot! We 

have consulted with our Boston team. They are 

blown away too. Her repairs are working well. Her 

heart may just not know what to do with all of this 

newness yet? But honestly, we really don't know at 

this point. An MRI would help... but she has a pacemaker so we can NOT do an MRI. They do 

not want to cath her unless it is absolutely 

necessary and right now they don't even know 

what they would be looking for so there is no plan 

to order that just yet. The less invasive we can be 

while she heals, the better off she will be. She has 

been through so much already. We will continue 

to do echo's and check BNP regularly.

My hope is that everything will trend down in 

Gods timing. I believe in that. It may seem crazy 

but my heart is happy. We have been given more 

than our hearts could ever have fathomed and I 

know God's not done! My life is so RICH! And I 

would never want another. This road we are 

traveling is different than the road we had 

envisioned. But this road is so beautiful and has 

left us so completely full! 




And we press on! 

With Joy!







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19 comments:

sierrasmom said...

I can't imagine how you felt when you heard those numbers.she looks absolutely wonderful! We are continuing always to pray for Ivy Joy! Thinking of you all!
Love
Kathie

Anonymous said...

She is amazing-her spirit, joy, drive and endurance.
God's little miracle!
Praying daily in SC

Anne B. said...

I just keep hearing Lexi's words...."Jesus is not done yet (fixing her sister's heart) but he is doing the best he can". Oh how right she is! Prayers for Ivy's continued healing!!

Paige said...

She is amazing as is her precious family. To say this little miracle girl has touched so many lives is an understatement. I am with you on this, God knows exactly what he is doing and I trust in His miracles completely!!! Praying as always for your sweet girl and family!
Hugs friend!

ashley said...

she is a beautiful miracle. we still pray for her everyday, "our little friend Ivy", as my daughter says in her bedtime prayers. Ivy is our hero!
xoxo

Paula said...

A beautiful little miracle! Hugs and prayers always. Love your updates.

Amy said...

She is a beautiful miracle! We will continue to pray for Ivy Joy.

Shelley said...

You and your family are so amazing. I would love just a drop of the grace that you approach this whole journey with. I have been a heart mom for over 10 years to my bio son (TGA). He has been great since surgery at 2 weeks, but there are days that I am mad and sad. Your posts always point to the positive. You are an inspiration.

Kristy said...

So thankful numbers don't tell the whole story. We're still praying daily and sending lots if love!! Love, the Hunts

Shonni said...

So is SO TEENY, TINY and completely adorable.
Praying for ya'll!!!

Anonymous said...

God is in control!! as we believers know- continuing in prayer and always in my thoughts,Cathy in illinois!!

Shay Ankerich said...

SO SO precious and praising God on this beautiful Palm Sunday for your baby!!! XOXO

deborah said...

Just goes to show that numbers don't always tell the whole story. What an amazing story and Miss Ivy Joy is truly the star of this show. Just love her and keep on keepin' on with what you've been doing. She's amazing. :)

Sue said...

Ivy's friend Vivi in Indiana has NEVER stopped praying. I'm talking several times a day, meals, bedtime, group or family prayers. She also insists on praying first before any of her siblings and its always the same sweet prayer! I show her Ivy's pictures and she thinks she looks like her :) She's going to love the donut picture! Our prayers are with you!

Aus said...

Well there is no denying that she is blooming - and I'm sure they ran those tests a time or two (or 5 or 6) when they saw the results - all I can say is "only God" - and we'll keep y'all in our prayers!

hugs - aus and co.

Big Happy Family said...

Ivy, we will always keep you in our prayers. We love you and we love seeing you so happy in these cutie pie pics. We all think that donut picture is priceless.

snekcip said...

Man counts numbers, God makes "The Numbers count!

Continued blessing to Precious Ivy Joy!!

One Happy Mama said...

Praise God, Praise God. Little Miss is a walking miracle. And you my friend, have the FAITH Hebrews 11 talks about! Love you all!!~nancy

Ruth said...

God definitely gave Ivy the right mommy when He chose you. :-)

 
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