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!
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!
ReplyDeleteLove
Kathie
She is amazing-her spirit, joy, drive and endurance.
ReplyDeleteGod's little miracle!
Praying daily in SC
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!!
ReplyDeleteShe 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!
ReplyDeleteHugs friend!
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!
ReplyDeletexoxo
A beautiful little miracle! Hugs and prayers always. Love your updates.
ReplyDeleteShe is a beautiful miracle! We will continue to pray for Ivy Joy.
ReplyDeleteYou 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.
ReplyDeleteSo thankful numbers don't tell the whole story. We're still praying daily and sending lots if love!! Love, the Hunts
ReplyDeleteSo is SO TEENY, TINY and completely adorable.
ReplyDeletePraying for ya'll!!!
God is in control!! as we believers know- continuing in prayer and always in my thoughts,Cathy in illinois!!
ReplyDeleteSO SO precious and praising God on this beautiful Palm Sunday for your baby!!! XOXO
ReplyDeleteJust 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. :)
ReplyDeleteIvy'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!
ReplyDeleteWell 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!
ReplyDeletehugs - aus and co.
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.
ReplyDeleteMan counts numbers, God makes "The Numbers count!
ReplyDeleteContinued blessing to Precious Ivy Joy!!
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
ReplyDeleteGod definitely gave Ivy the right mommy when He chose you. :-)
ReplyDelete