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Friday, March 9, 2012

Waiting at home

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Ivy is home! She was discharged and we are home with a VERY happy, VERY content little sweetie! She remains in critical need of heart surgery, labeled in heart failure, waiting for a Homograft, a donated human pulmonary valve of a toddler. 

Ivy's pulmonary valve is only 1/8th the size of what is should be. Because of her age, her size, her very special heart, the pulmonary valve HAS to be from a human and has to have some tissue from the part of the heart it is attached to still connected to it. So with our needs being so specific, they have not been able to find a match. They have contacted all of the operating rooms and they are hopeful that one will come available in time but right now, without an actual valve being prepared for her, without a valve anywhere in sight, we really didn't have a need to remain in the hospital. We are so very happy to be able to have Ivy at home. She is free of all of those cords and beeping monitors and nurses in and out. The nurses were so very sweet with her and so helpful with everything but the poor gals were so overwhelmed with concern for her as they are not used to running to a beeping monitor showing oxygen saturation at 32 and finding a tiny girl sitting on my lap wolfing down a second cup of chocolate pudding, a pediasure in her hand (empty), kicking her feet and clapping while mommy sings BINGO! She is quite the talk on the 5th floor at PCH. Everyone comes in to listen to her VSD, I guess one this size isn't observed often. 
So what's the plan?  I wish I had better news but the truth is Ivy needs this surgery very soon and we can not do it without this valve. Here I thought it would be complicated enough with just the intense surgery she has been waiting on and now we are faced with the reality that it can't happen yet. We have our girl, we have an amazing team ready to go, we have the help set up and we have no valve. Stinks! But it is just yet another great reminder that we are not in control here and we do not need to be! It will come and surgery will happen and timing will be what it was planned to be all along. We just need to enjoy every day, every minute, because that minimum 2 week hospital stay is going to be.... long! Hard! Draining! And Not Fun At All!
We continue to trust that Ivy is going to be healed soon! We covet your prayers. We delight in every email, every comment, every text and every phone call! We feel your love!
 Swollen eyes and sore leg but such a little trooper. 

 A box of wipes is the best cheap toy. Pull them all out, blow your nose, stuff them all back in, start over!
Blowing kisses to mommy

Always has the energy for a little attitude!

The cath causes a little swelling in the leg. Makes her look like she's finally got a little baby chubs going on there :)
























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31 comments:

Deborah said...

I'm praying for you and your sweet Ivy. God's in control and knows where the heart valve will come , from the most perfect little heart. I will pray and honor daily until she's home from surgery.

GreenGirl said...

I worked for a year in the cardiac transplant unit as a teacher at CHOP. Trust me when I say I saw miracles daily. Praying for your family!

jennifer said...

I could not sleep last night, so I've just been praying for Miss Ivy! Praying that God will sustain her little heart until the valve is ready. What a little miracle she is!

John & Michelle said...

Praying for you in Athens, AL this morning and will continue too! Put the specific prayer request on my fb page! Many are lifting you this morning!

Mary said...

I'm a friend of Diana's, and just wanted to come over to your blog to tell you that your family is on our hearts and in our prayers!

Amy Root said...

We serve a living, mighty, healing God. I am on my knees in prayer for you and your precious Ivy. Mary, I will never forget the look on Brian's face when you called from the hotel with the news of Lexi!! I can only imagine the joy when the Lord heals Ivy--completely with a brand new heart, crafted for Ivy, by God's hand.
Much Love in Him,
Amy Root

Amy said...

I've followed your blog for a while now (well before Ivy), though I've never left a message (I'm kind of a lurker). And I followed with bated breath as you went to China for Ivy. I've thought of your family almost daily. Though we don't know each other, I hope you can feel my prayers for Ivy's health, and that of your family in general. Good luck!!

Anonymous said...

Praying for Ivy!

maggie said...

Mary - I know that Ivy is in the right place and that her heart will be healed. But I know that it is an anxious time for you right now. I am praying for her and you every day. Love Maggie

Michelle said...

Praying!!

Trumbullfamily said...

There is no doubt in my mind that a valve will come soon. Our sweet little baby girl will get all fixed up and will soon thrive! Love you IVY
Auntie Kim

Tera said...

Mary- Your daughter is a breathing, living miracle. I am trying desparately to control my tears since I'm at work. Between reading your blog and Diana's, it is very difficult! Praying, praying, praying for Ivy...for her special heart, for the special heart of another, for her mommmy and daddy to have strength during the wait, and for the surgeons who will perform the surgeries.

Melody Lietzau said...

Oh man these pictures bring back memories of our little miracle. Praying that they will find exactly what ivy needs soon. You are so right God's got this and he knows the perfect time. I love your perspective Mary. Going through this with Hannah made me more stronger than i ever imagined myself to be. God is using you and so many others through this journey. Love you and praying, praying, praying.

Julie said...

sending you thoughts of comfort and peace that a valve will be found and your little blessing will be on the road to recovery!!!
Our family is blessed by organ donation as my dad received a heart almost two years ago!! I know your family will be blessed by the same selfless gift!!!

xx from TX

snekcip said...

Visiting from Diana's blog and although I don't comment often, you and your baby girl are often in my thoughts and now in my prayers. I left a comment on Diana's blog that I would love for you to read when you get time. Praying for a complete healing for Ivy Joy.

Kristi said...

I am so happy you got to bring your sweet girl home while you wait. That's got to make waiting just a little easier.

Sharon Ankerich said...

Oh sweet Mary~ I have been praying continuously for you ALL~ SO much emotion with this whole thing. I know what you mean... just getting her home so she could have surgery was SO big and now the surgery is so complicated!!! Praying God's will and grace toward you all. I went to sleep praying for you last night and you were first on my mind this morning!!! I just know God is going to take care of Ivy~ SJ's open heart was delayed a little when she has her's because a little boy waiting on a heart transplant got a heart that very day. That waiting room was a celebrating room!!! We were all instantly connected!!! I am praying the same miracle for the valve!!! God knows!!! Love you! SHay

KandK said...

Hi Mary,

I'm visiting from Diana's blog. Ivy is an "Angel", so, so precious. Thank you for sharing your journey to Ivy and now the journey to Ivy's healthy heart. So happy to hear you are home with your sweet baby girl while you wait.

We are all praying for you and your family.

“Trust in the LORD with all your heart; and lean not upon your own understanding. In all your ways acknowledge Him, and He shall direct your path.” Proverbs 3:5-6

God Bless,
Diane

Teresa said...

We are praying for sweet Ivy and we know without a doubt God's timing is perfect!!!

Big Happy Family said...

Praying for our sweet Ibee. Love you Mary.

Paige said...

Mary,
Prayingfor your sweet Ivy over here in Beijing:)Hope to hear great news while we are here over the next 2 weeks!!!! She is so very precious and I know God will answer all these prayers on her behalf!!!

Terri said...

Praying for your sweet baby girl!

Sammy said...

God bless you and God bless Ivy! So wonderful she has your love.

Anonymous said...

I am praying for all of you and Ivy. She has found a wonderful family and they have found her. This did not happen by accident. It is His plan. Praying for a donor. May God heal her for the life she deserves.

DiJo said...

Ruby and Sienna went to school today and passed out Ivy's bracelets! They told me that during prayer time today every child prayed for Ivy at their individual tables!! That was 14 little sweet voices lifting up your baby girl to Jesus!!!! I have know doubt those precious prayers were heard! It just makes my heart smile!!!

Did she finally give up the candy bowl!!!!!

Love ya,
Diana

Lee and Sarah VanGrunsven said...

Mary- I just know God is hearing the many many prayers being said for Ivy! He will deliver, in His perfect timing.
'Rejoice in Hope, be patient in tribulation, be constant in prayer' Romans 12:12
I"m so glad she is home with you for now while God plans out her surgery.
Love to you all

The Greig Family said...

I'm praying like crazy for little Ivy! I followed your journey and absolutely fell in love with your baby girl. She is certainly something else!!! Just precious beyond words. Thank you for sharing your story. We are currently waiting on a little guy in need of TOF surgery. The doctors over here could not make a whole lot of sense out of his file, so we are going on faith that his little heart will be repairable once home. You and Ivy are a true inspiration to many.

Jennifer P said...

Enjoy your time at home. Hopefully you will move on in the healing process very soon!!! Ivy is so beautiful.

Faith, Hope, and Love said...

Praying for your beautiful Ivy and for you too. :)

Your pics are ADORABLE and the socks...well they are cute as can be!

What a little fighter your Ivy is! It is her pereseverance and the love of her family that is going to get her through. I believe!

"Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours." Mark 11:24

Love and blessings,
Robin

cve said...

Ivy is so sweet. I recently began following your blog through hopping over from the Doughty's site. (We attend the same church). A family at my daughter's preschool have founded an organization for children with congenital heart defects. I don't know much about it or about Ivy's condition, but I figured I'd pass along the website in case it was helpful or encouraging to you. http://www.heartwaves.org/ Praying for God's hand to cover Ivy and her family!

Wife of the Prez said...

Oh Mary, I am so sorry for the uncertainty right now. I cannot imagine. Well we are in a waiting phase but we do know the plan. It is just the doctors want to give our girl more time to grow and her SATs are in the 70s so that is great for her.

I noticed in the labels that you put "TGA, VSD." That is what our big girl has. She had a fontan surgery and is doing great. I never really understood it all, but she wasn't a candidate for the full arterial switch. She was already 35 months old and damage was done and her VSD was actually 3 large ones ... anyway, just wanted to throw that out there.

Continuing to lift you all in prayer.

 
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