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Saturday, June 16, 2012

Surgery for our little peanut, here we go again.

Pin It I am cutting right to the chase on this post. My sweet Ivy Joy is not feeling well. 





She is puffy again as you can see in the pictures I just snapped. She was so sweet to wait patiently for me to snap these when all she really wanted was to fall asleep in my arms. 












She feels lousy!
The last 5 days Ivy has been experiencing some severe ~bloating~??, in her belly. I don't know what else to call it, or at least I didn't know. But it had me very concerned as her tummy continued to grow bigger and harder and her little belly button even popped out. The swelling began to come back in her legs and feet and face. Not near to the extent that we had in the past, but enough to have me making phone calls.



On Wednesday evening we headed to Phoenix Children's Urgent care. I wanted someone to look at her and tell me her belly was normal. I searched the Internet for hours trying to find something, anything like this and there was NOTHING! Well.... the doctors had not seen anything like it either. Not related to the heart, not on a baby that was otherwise looking so pink and happy and down right adorable... just sayin~
So they called my cardiologist, took some x-rays, tried to draw some blood from each hand, then her foot, then mommy put her foot down and said stop! Ivy's blood just would not flow! 
The x-ray showed a whole lot of fluid, a low liver, and left a lot to be questioned. So we headed home for the night and we spent the next day at the hospital. Ivy was 4 pounds heavier than her last appointment. And it was all fluid! Or mostly fluid anyway. Her belly was as large as the day before, her feet fluffy as can be. We had increased her lasix to 3 times per day but they knew something else was wrong. The concern was that she was having kidney failure. Our cardiologist was very very worried about that. After her echo and her blood work, drawn through ONE poke from the neck by our little angel nurse J.S who we absolutely love, we waited. And when the results came back our doctor was both relieved and sad. Ivy's kidneys are fine! Praise God!!!!!! But we are so very sad to say that she has left heart failure and needs surgery.... next week. 




Ivy's tricuspid valve is leaking so heavy that the blood is pouring out and falling in to her stomach and legs. She is weak, not walking, not able to do much of anything at all because she is in heart failure again. My sweet baby is amazing. The fact that she is eating (a lot), drinking, playing while laying down or sitting up, talking and engaging..... all amazing!! The 13 year old and 18 year old I spoke to at the mended little hearts meeting told me that when they had valve leakage before a valve replacement they could not get out of bed. The moms who's kids went through valve issues when they were younger said they had feeding tubes until they were 5 because they did not have the energy to eat! Yes, she is amazing, yes she has been through a whole lot and yes she will get through this too. We all will. She is such a special, amazing little girl. She is a mystery to the doctors. The way she looks so good, and then you see her lab results, and there is no way to deny that there is a God, and he loves this child and he keeps his promises and he carries her through everything!! Because while some may see her story, in an orphanage until almost 2 years old and all alone for so long, so sick without anyone. But we know, she was never alone, God has carried her, He has loved her, He has protected her, He has surrounded her with the right compassionate hearts and now the right family and the right brothers and sisters standing in the gaps, storming the gates of the heavens with prayer and petition for her!!!! He knew then and He knows now and He knows all!!! I find great peace in that!
So we were able to come home. The nurses were surprised to see her coming home... she is sick. But our sweet. awesome, oh so loved doctor knows Ivy. He knows she does better at home. He knows we wouldn't take an ounce of chance with her health or her life and we would be at that hospital in the blink of an eye if we felt there were any changes with her. So that's where we are.
I should hear from the hospital by tonight about the day and time Ivy will have surgery. They are thinking Tuesday but hoping for Monday. It is all about finding an opening in the O.R. 
We trust God, He knows the day and time and He knew this was coming all along. We have only been home 7 weeks but it has been 7 weeks of bonding and loving and healing. 
Now she is ready for whatever is next. They need to get a look at her lungs before they know exactly what they will be doing to her. 
He pressures are so so high. 
We need to make sure her lungs aren't too damaged from all of the time she waited un-repaired. 
Will you please join me in prayer that this is not the case? 

Thank you! Pin It

24 comments:

Lori Sloan said...

I don't know you, but reading about Ivy Joy has really touched me. I will certainly pray for her, your family, her doctors and nurses. I am so glad that she has a loving family and such a strong will to fight... that will get her through a lot in her life!

Yvette said...

Oh my heart is breaking for your mommy heart but with Jesus all things are possible (VBS this year LOL!) We will be praying

Yvette said...

Mary, I saw your post and I don't think I ever mentioned but Ivy is one very big reason why our little new chunkamunk is coming home. All I could think about was if you could take the leap (and a few other heart moms) just maybe so could we.

http://bringinghomeholland.blogspot.com/2012/04/here-we-grow-again.html

When we were in the hospital last week for Cav's amputation surgery someone gave me the book 'one thousand gifts'. I found so much peace as I sat in the waiting room.

Shawn and Ragena said...

Bless her heart and yours! I a so sorry but so blessed by your faithfulness. I am again in tears! I think and pray for you often and will contine too. May our mighty God continue to hold you!

Paige said...

Oh that sweet baby!! Our family has been praying for her!!! Madeline sat up in bed the other night, when you had not posted yet, an asked how is Ivy:) It is just precious that ALL my kids are praying for Ivy!
I got Diana's texts and have been praying for your sweet girl. Praying specifically for a Monday surgery!

Amy said...

Praying for you and sweet Ivy! Bring it Ivy! We are pulling for YOU!!!!

Catherine said...

Continuing to pray for your precious little love. What a trooper!

Sharon Ankerich said...

I am so very sorry and will certainly be praying for IJ and your whole family!!! Love and blessings!!!

Smith said...

God is Great! Praising His name for Ivy - her strength, her witness, & determination! I've kept up with Ivy's story since she came home. We are praying for Ivy, all of you & the medical staff!
Niki
in MS

Diane said...

I am praying for you sweet, sweetIvy. God is with you!

Maggie said...

Praying with you and for you and the beautiful, magnificent Ivy Joy. God bless your Mama's heart , I know that even with your mountain of faith, it is hard not to be fearful. Stand strong on the Word of God and know that he has a plan for Ivy Joy's life. She has touched so many people in such a short time. Keep fighting our little Empress.

Davey, Lauren and Ava's proud mom said...

Sweet girl- you are surrounded by your prayer warriors and in the hands of a mighty God who carried you this far! "the Lord determines your steps" so we will continue to pray for you and we will trust God's plan for you...His perfect plan!!'

You are so loved precious Ivy Joy!!!

Sharon said...

Just saw Diana's request for prayer on fb. I hate that she is having to go through this again. Prayers being said from Texas..for your sweet Ivy Joy..for tired mom and dad, kids at home and the dr.s. Will keep checking back and praying day in and day out!!!

Melody Lietzau said...

I was so sad to read this post tonight but trust the lord that he is doing mighty things through Ivy. We are covering you in prayer here in CA. Much love Mary to you and your sweet family. Love Melody

Kayce said...

We are keeping Ivy in our prayers as well as the doctors and hospital staff and your family too. The Lord has amazing plans for your sweet girl!

ashley said...

Praying for your beautiful baby girl. Ivy, God loves you!

K said...

Well, that explains why she's a watcher doesn't it? She simply couldn't walk or crawl or she'd die. I hope the surgery goes well and that she feels so much better afterwards. Will the valve be synthetic or from a donor heart?

Anonymous said...

As I have said before "keeping Ivy Joy and your family in Prayer" Come on everyone lets get a prayertrail to our Almighty One again for Precious Ivy ! Cathy in Illinoia

Jboo said...

Praying for your girl and all of you.

janet

Lainie said...

We will remember Ivy and your sweet family in our prayers!

Lainie

Lesanne said...

We're praying, praying, praying for your darling Ivy Joy.
Thinking of all of you, Leslie and Julianna

Marianne said...

Your post brought tears to my eyes, seeing her sad, beautiful face and feeling your anguish. Praying for healing and strength to get through this.

Big Happy Family said...

Love you Ivy, wrapping you up in love and prayers.

Anonymous said...

Prayers going up for your precious Ivy Joy.

 
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