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Friday, June 22, 2012

God's faithfulness is steadfast

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Yes it's a little obvious that she is always          eating!!!!!

 This Tiny little hand/arm has 11 holes in it!! And the IV went bad! 

 10 minutes of play requires 20 minutes of rest!




I am thrilled to tell you we could be going home tomorrow!
And I really don't need to tell you how ready for that we are!


The day time doctor here discussed with me that even though repaired, Ivy will never have a normal heart. Had her surgery been done at birth, her lungs would not be the way they are today, but some some of the other long term issues are because Ivy's heart condition was so complicated. Did he think she was born here and we chose to wait? Goodness I felt that way! 

And then my doctor told me that Ivy's Right coronary Artery is indeed blocked completely due to compression from the pulmonary valve implant. BUT...Ivy has blood flow! Her little body has grown new blood vessels and some blood gets through. Much less in a stressed state and a little more in a resting state but the left side of her heart jumped in and took over. Amazing considering she has enough trouble on the left side of her heart too! 

Praise be to God!!! They do not want to repair anything at this   time. She will gradually go up to 3mm of carvedilol. They should have her there by tomorrow and then we can go home!!!!!!!!!!!!!!!

She does still has that very high pulmonary hypertension and there is no medication they can try and treat it with at this time because they would all put stress on the right side of her heart and she can not handle that. So this means that she will continue to have lower than normal energy, and tire easily. The sad fact remains that Ivy's lungs took a huge blow by waiting almost 2 years for surgery. They still have lots of damage. But she is a 2 year old. They do repair themselves, it just takes time. They have faith that we will see better lung function in the future! Praise God!

We will start her in rehabilitative therapy as soon as we get home. They told us that being on ECMO is like being dead for however long you are on it. Your whole body is resting and machines are keeping you alive. Apparently kids who never had great quality of life due to illness, prior to ECMO need more time and more therapy to get their brains to believe that they are capable of doing things and pushing themselves a little. 






 Life is not measured by the number of breaths we take;But by the moments that take our breath away


Long term and even short term have not been discussed yet. Her limits have not been discussed either. If her doctor gets out of surgery before 9pm he will visit to discuss the rest. If not then he will stop by in the morning. 

And thats all for now. We came with the intention of going home with less Pulmonary Hypertension and tricuspid valve leakage and we go home with the same issues, new knowledge of more issues, new medications, a lot more scars and holes on her tiny body and a very grateful heart that 

God's faithfulness is steadfast!
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19 comments:

Shawn and Ragena said...

His faithfulness is steadfast! Your amazing strenghth and faithfulness is passed on to your sweet Ivy. She is so blessed to have you and your faithful, strong spirit:(even though I know as a mom it is soooo hard to maintain)Everytime I look at her I see Christ working in her life,your life, and so many others. We've prayed all week and continue to.

Paige said...

Oh that sweet baby, her little smile just takes my breath away. She is going to be ok, I just have a peace about it. I am so sorry that you are having so many ups and downs, hospitals alone are exhausting!! Praying for sweet Ivy and your precious family!!

Kristy said...

Praising God with you my friend. Although the news isn't exactly what we were hoping we can rest soundly in Gods sovereignty!! Loving and praying for you all!!
Kristy

Big Happy Family said...

Love you Ivy girl. You take our breath away with your sweetness . Praying....

Diane said...

Oh Mary. All this news must just seem too difficult to bear, but you will bring her home, and she will heal and grow stronger with the love of a mom and dad. She will have more options as she grows. And always, God is the master healer. He can help her grow strong no matter what anybody says!
I just want to share this with you. I was such a sick kid. I practically grew up at CHOP. The doctors spent so much time telling us what I could not do. I would always listen to them, and in my mind I would think, "okay. BUT GOD!!"
I was never supposed to have ANY children. And then, everyone told me to stop after three. We just trusted Jesus, and now we have nine biological children. :)
I know the doctors can spout all the statistics, and they look bleak, but NONE of that matters! Do you know scientists can not figure out how the bumble bee can fly? Aerodynamically, it's impossible. But the bumblebee flies because God told it too. :)
We are praying for a "bumblebee" miracle for your precious Ivy Joy!!!!

Georgea's Mommy said...

Love and prayers to sweet, amazing, miraculous Ivy and all of you. God has you in the palm of His hand. Beautiful Mary, as always, your faith & trust inspire me. Love you!

Anonymous said...

I think your love will heal her in ways medicine may not. She knows all of you love her so and she will grow strong and healthy in her own timing. God is faithful. He brought this angel to your family and you and He knows you will take the very best care of her. We will always pray for all of you. I am so grateful to God that He placed her in your care. Very glad she is going home.

God Bless all of you!!
Annette

deborah said...

It looks like you'll be able to enjoy more
'infancy' than most mamas. :) I, for one, would love that, but, not for those reasons. Ivy is the cutest baby on the block, for sure. That sweet little button nose and her rosebud lips! Aaahhh! She's adorable. Enjoy the babyhood. I sure do enjoy the pix of her and the updates on her condition. She's amazing and so are her parents and siblings. :)

Anonymous said...

I sit here weeping as I do so very often when reading your posts. Tears of heartache and joy for the precious life that God has seen through the past 2 years. Although we have never met, my family and my church are praying for you, Ivy, and your family. Love bears all...
The Carpenters from Alabama

Luciana said...

Sorry this little Jelly Bean (with the cutest bum) has to go through so much. I will continue praying. Lots of love... pls keep updating.
xoxo

Luciana

http://werbettertogether.blogspot.com/

Anonymous said...

Mary - the human body is amazing. It will always try to fix itself. Many, many times, the heart will find a way to get blood flow but growing new arteries. Ivy's heart is doing just that. She is strong. She is a survivor and she is God's miracle. I'm sooooooooo happy. It seems that you got pretty good news. As Ivy grows and her hearts and veins get bigger, more options will open up for you. Ivy is going to keep eating and getting stronger and bigger and one day she is going to put all this behind her. But for today, she is able to be in your arms and go home to her family. God is there with you - He is carrying Ivy's heart in His hands. I will continue to pray!!!!
Beth (in Cleveland)

Jennifer P said...

A teeny tiny superstar! Her quality of life is stellar compared to just a short few months ago. Grateful for that for yours and mine. Be blessed and so glad you are heading home soon.

dajmommy said...

Sorry that these aren't the "fixes" we had all hoped for...but I am so thankful that Ivy gets to enjoy her special moments with her family at home, as her body continues to heal.

As another heart mom, I have to remind myself that every day is a gift from God...and make it a point to decide what special thing we can do with that gift. We're making memories! Hold onto the hope and future she has with God...and know with Him, all things are possible!

Love and hugs to you,

Angie J.

Smith said...

Constantly praying for all of you! Ivy & your faith is such a blessing & encouragement! We love Ivy!
Niki
MS

Anonymous said...

God bless you all Mary! Sweet Ivy is such an inspiration and so much stronger than most.
Jordon

DiJo said...

Mary,
From the beginning we have known that with only man this would all be impossible... But, it is obvious that man is not in control of the very amazing Ivy Joy!!! God continues to reveal Himself through your miraculous daughter.. She is a beautiful example of his faithfulness and steadfast-ness!!!

Ivy Joy, we will continue to lift up your precious heart and lungs.. And, we look forward to the day when you are running and jumping and celebrating your very special testimony!

Love,
Diana

the beatties said...

Praying for Ivy as she continues to grow "God's own Coronary Bypass". As that happens, pressure on her leaky left side should become lower.
With our love
Marilyn & Brian

Christina said...

Will continue to pray for your sweet girl. She is such a little walking miracle:)

John & Michelle said...

Still praying in Athens, AL! (((HUGS))) Michelle & Piper

 
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