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Saturday, April 13, 2013

Next steps

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 For those of you who are not on Facebook or do not already know this
Ivy was admitted in to the hospital on Thursday after I suspected something more was going on with her heart.
After an echo revealed diminishing right and left ventricular function and hardly any squeeze at all coming from her heart, we headed to our room that awaited us at our local Children's Hospital. 
The heart shows all of her repairs are working as they should be. So why the sudden drop in our sweet baby's heart function? The suspicion is her Right Coronary Artery that has been hindering us since April of last year... And the secondary pulmonary hypertension that is a direct result of the issue that occurred with the right coronary artery and the time spent not knowing it was stitched closed. We need to do a heart cath to verify these suspicions. But we need her heart stronger for a heart cath. 
So Ivy is on Milrione and IV diuretics, being closely monitored, waiting for a day next week when she will get this heart Cath.
Our next step is sad but obvious. The only way to get a new coronary artery, is to get a new heart.
We are choosing to take a little blog break at this time. We have so much to pray, think, and learn about. We have very important life changing decisions to make as far as where this will happen and how we will go about it. Obviously there will be a lot of factors out of our control since we don't even know when or if this gift of life will be given to her. 
We believe with all of our hearts that this is still Gods perfect plan and we will get through it whatever that plan is. God has blessed Ivy with the strength and bravery of a Lion and the gentle soul of a lamb. She is like no other child I have ever met in so many ways. She has been through more than any one should ever have to. And yet here she sits beside me, heart barely squeezing, with round cheeks and a belly full of mashed potatoes, broccoli and assorted nuts, a box of fries in one hand and her blankie in the other, telling Swiper, No Swiping, as she watches Dora. She says please and thank you to everyone coming in and out of her room and shares her snacks with whoever asks nicely. She tells her visitors she loves them right back when they leave and she tells me thank you for the simplest things like fixing her pillow, changing her diaper, throwing away her trash. She scolds me for turning the lights off and shutting her door but says, It's ok mommy, It was just an accident I forgive you, when I spilled water all over this morning. She has a fight in her that no one can stop and when God says it is her time to come home, His will be done, until then, she continues to run her race and we continue to try our best to keep up with her and stand by her side. She is much stronger than us! Much braver than us! And much wiser than us! 
We thank you for your prayers and support during this time. We appreciate your comments of encouragement and read every single one. We are still holding on to the hope that she will spend her birthday at home (just as we were praying last year here in this same hospital..) with her family and friends and all who love her! 
You can find Ivy's Facebook page by searching Mission to a Million on Facebook. We may do small updates there as we see the need to update. 
Ivy's Birthday is May 6th, her little party is planned for May 4th. We are praying that she can celebrate her 3rd year and the gift of her life at HOME! We are praying that there is a perfect heart out there that God has intended to use for two children instead of one. To Him be the Glory, for He loves her So!









                                          













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77 comments:

Big Happy Family said...

Hugs Mary, you are incredibly brave, patient, and the most amazing Mama. God found Ivy the perfect home and she thrives because of all of that love. She was the bravest little girl in China. She is equally as brave now. What a special little girl. Our prayers are with you Ivy Joy.

Laine said...

So thankful you updated the blog as I am one of those not on FB...and we have not stopped praying for Ivy Joy ever since her last Boston stay....and we will continue to pray more fervently for your little treasure!
Hugs and prayers...

Jennifer Hnilo said...

Prayers...

Steven Kessler said...

Mary - we are praying for you all. She is still the cutest little peanut and we love her. Love to all MK

Debbie Sauer said...

Praying for all of you. What a strong, precious, beautiful little girl . Blessings

Living Benson said...

Prayers to all of you. Wishing you strength, peace and comfort.

kim647 said...

Sending prayers that all will work for the best. Our family is in our prayers. Hugs.

Diane said...

Praying with you, Mary.

Jessica said...

Praying ..... my sons birthday is may 2nd and He had open heart surgery at 6 days old. Thank the father above he is good now. But as one Heart baby mama to another know she will not be far from my thoughts and prayers. Praying not just for her but for you her family as well.

Ana said...

Thanks for the update. Sending loving and healing thoughts your way. She looks like such a sweet little girl! Hugs to you all.

Ana said...

Thanks for the update. Sending loving and healing thoughts your way. She looks like such a sweetheart. Hugs to you all.

Paige said...

praying for our precious girl!!!!!!

Sherri said...

I'm so sorry and I hope and pray hard that this sweet child of God's find that heart she needs. I am on facebook and will looking her up after i'm done. God does have a plan for this sweet girl of yours. I pray that God holds her and places his arms around her and keeps her safe during this difficult time. Lord, please oh please help this baby girl and give her family the strength they need to get through this. In your Holy name I pray AMEN!

sierrasmom said...

Mary...we are praying here for Ivy, for the doctors and for all of you. Ivy Joy has a place in our hearts and we will continue to pray for her healing. Your family is the perfect family for her and I know what ever decisions you make will be the right ones. Prayers and hugs,
Kathie

Jboo said...

Thinking of you and praying for sweet Ivy and your family.

janet

Ashley said...

Continuing to pray for Ivy. May you all feel God's grace and may he hold her in his arms and lead you to a perfect heart for your sweet and special girl!

Blessings, Ashley

godhasnoproblems said...

Oh praying, praying, praying even more than I already was! Trusting that God is going to continue to use Ivy's life - and the lives of the rest of your family - to encourage, inspire, and challenge others to live fully, and praying that He gives you grace and strength and reminds you of His sufficiency each moment.

(And sent you a FB message that probably went to 'other')

Preppy Pink Crocodile said...

Oh I am so sorry to hear of this turn for Ivy Joy! I think of her and your family every day and continue to pray for her. Her little life has touched so many in such a BIG way. I know you will make the very best decisions for her. Please know that many strangers love her and you and y'all are in our hearts and prayers daily.

Sending love and hugs,
KK

Sharon said...

I will always be praying for sweet Ivy, and her wonderful family. She truly is a beautiful gift from God. Blessings to you all.

Harlow Family said...

Saying lots of prayers for Ivy and all of the family may god bless you all

Harlow Family said...

Praying for Ivy and the whole family may god bless you all

Harlow Family said...

Saying lots of prayers for Ivy and all of the family may god bless you all

Candy said...

Prayers for Ivy's healing.

Anonymous said...

sending you our love, our prayers and hope that God's plan is a long full life for Ivy Joy!

I cannot ever think that she has been thru so much and been so brave for the perfect heart to not be somewhere out there for her.

hugs for your whole family and for all those that love Ivy joy

Hayden and her mommy in TX

Naomi said...

Thinking of you and your sweet baby girl! Hoping a heart becomes available soon, understanding the difficult decision another family needs to make. Ivy is a strong willed little girl and we will look for that miracle from above! Sleep comfortably and breath easy sweet girl! Thank you for the updates!

Peach said...

Sending prayers for continued strength and some kind of resolution, and please Lord let it be happy!!

Kelleyn Rothaermel said...

Sending prayers to Ivy and your family! Hugs and Kisses from Atlanta, Georgia.

Françoise said...

It is too difficult for me to say in English what I feels
I am by you and by your brave girl
Courage
Françoise frome France

Fannie said...

Praying for Ivy Joy as always!! She is a special girl and I know that God has a plan for her life!! Praying very hard for your family and most importantly, for Ivy!

"And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power for ever and ever. Amen."
1 Peter 5:10-11

Anonymous said...

The Lord has a plan for your precious daughter. Praying for you And the family. Just remember He won't give you more than you can handle. He is our faithful And merciful God!

Melody Lietzau said...

Mary,
I'm so sorry you are going through this. I know the pain and heartache of hearing your child needs a new heart. If we can be of any help please don't hesitate to call. So far We have had the best experience at UCLA. We fought hard to be there after a horrible experience at CHLA. Praying for that sweet girl and for a Miracle of healing. lots of love.

Paula said...

Hugs, prayers, positive thoughts. What a remarkable, beautiful little girl your Ivy is! So much fight and strength of character in such a little being.

Sarah Lynn said...

Our prayers, of course. What a lesson this child is being.

Jennifer P said...

As a very wise mother of a very special girl told me, "God will equip you." We are blessed to have met you and Ivy knowing that your heart for God's will and what you say here is the real deal.

Always in the prayers of the J's here, for Hangzhou and Boston reasons.

As for myself, I double the prayers that God will make a way where there seems to be no way and that it will be very clear to you and your family what is best for Ivy. We are in the same boat with Joshua just not as far down the road.

Love from NH

Lisa said...

Thank you for taking time to fill us all in. I respect your decision to take some time off. I pray that your quiet time with the Lord will give you all the answers you need and gives you peace. You are such a great mother, Mary, and Ivy is so full of joy because of the love that your family and your "village" have given her. And I know that your mama heart is equally full of that love, if not more. I know God is smiling at you and shining His light right into her hospital room. Go get 'em, mama bear.

creativeamber123@hotmail.com said...

Praying for sweet precious Ivy! My God put his healing hand upon her. Praying for you and your family as well for strength and determination to fight this battle. Ivy's story has touched more people than you will ever know!

Courtney said...

Sending prayers your way for this special little girl.

Wendy said...

Mary, I've been thinking about "my" sweet little hero and praying for her health and healing. Thank you for letting us know how she is doing. I'm so sad to hear that her heart is struggling so and am so sorry that you are all going through this most difficult time. We will all continue our prayers for Ivy, for your family, and for the medical team who is providing her care. Whenever I think of Ivy and of you, Mary, I feel such a deep sense of hope and light, of love and joy. Like Ivy, you are so strong, so wise, so brave. I can only imagine how hard this must all be on a mother's heart. I wish all of us from far and near could be there to help you, to support your family, to lift you up, to cook and clean and carpool. Please know that many of us are standing with you, even if it is from afar. Sending love from Boston!

Annette Duty said...

Mary - We are praying for sweet, sweet Ivy Joy and for all of you through this most difficult time. Such a little girl has touched so many across the world. Alexandria says "hi" to Ivy and hopes her heart is healed soon. God Bless each of you. Such a tender, loving family - God placed Ivy in such a loving home. He has a plan.

DiJo said...

Mary, Bryan, and family...
Faith, hope and love.... All of these beautiful truths resonate in the child that God chose for you... Because of these we can trust and believe in God's ultimate plan for your family.. He has used you, stretched you, and blessed you by placing her in your loving arms.. He has humbled all of us by allowing us to witness, to stand in the gap, and to marvel in His healing miracles. Because of Ivy Joy's Creator she is here today.. Because he chose a tiny little girl to do mighty things in the hearts of many... And I am trusting there is more to this beautiful story... For now, I will be reminded of his faithfulness in her journey. And, I will choose to trust in His promises.. That with God ALL things are possible.
Love from MN!
The "R's!"

John G. said...

Oh Mary, I am so very sorry. I pray for Ivy and your family. May God be with you and Ivy as the doctors decide on the next step.

Blessings from CT.
Caroline

Kathy said...

Thinking about your whole family during this difficult time. Great big hugs to your little fighter. She is one amazing little girl. Praying for all the right things to fall into place. Take all the time you need. Thanks for keeping us all updated.

Kathy said...

Thinking about your whole family during this difficult time. Great big hugs to your little fighter. She is one amazing little girl. Praying for all the right things to fall into place. Take all the time you need. Thanks for keeping us all updated.

jennifer said...

We are praying for you all. What a mighty little warrior you have there! I love and admire your heart so much, and know that you are God's precious gift to Miss Ivy.

Jennifer

Robin Snyder said...

My heart has been burdened for Ivy along your journey and I struggle with God on this, but reading your posts, seeing your strength and faith, I have complete admiration for the power you see in our Heavenly Father when I do not. No child should go through this and she has walked this road so strong and endured more than most. We will be praying for a new heart, but also for miraculous healing. Lifting your family up so high during this time. Love you guys!

Anonymous said...

No words can make the pain of the situation go away but we will pray for her and you! Blessings.

Mandy said...

Mary, praying for you and your family and Ivy (of course) as you walk down this path.

John 16:33 (Amplified)
I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world. [I have deprived it of power to harm you and have conquered it for you.]

kay said...

Thinking of you and praying that she will be more perfect than one can imagine soon. Love and hugs from Chicago, Kay

kay said...

You are all in my prayers and thoughts . Praying that she will be more perfect soon.
Hello from Chicago.

Kay

Anonymous said...

Every night we pray for her and throughout the day as we think of her and her sweet family and we will never stop! Love to you all Lisa Brad Lane and Lena Yi Yi

Jane Doe said...

Am praying, as always, for your family and your medical team.

Ladyblog said...

I've been praying for Ivy Joy and your family without ceasing, even when things seemed to be going so well. I don't understand why one little girl must endure so much and I will continue to pray for all of you! I can't even begin to imagine how you feel as her mother. I pray that God will heal her and provide the perfect heart for her that will help her to grow bigger and stronger and to have joyful childhood! Hugs and prayers!

Karin said...

Mary, I am praying for you, Ivy and your family. Hoping and praying that the cath will show a different reason for her heart issues, but if not, trusting with you in His perfect plan. We are 60-90 min. away from Boston, and if you or anyone in your family need a place to stay, please know we are here and you are always welcome.

Anonymous said...

so relieved to hear from you I am not on facebook and was really once again worrying about little missy --keeping all in prayer,Blessings,cathy in Illinois!!

Anonymous said...

praying for the Lords will to be done here in Ivys precious life!! We love her and one thing we all know is that our Wonderful God Loves Her So !! Keeping you ALL in PRAYER !! please TRY to update here on blog --no FACEBOOK for me!! XIE!XIE! BLESSINGS<Cathy in Illinois!!

nancy said...

Dear Sweet Ivy Joy, Our family is praying for you and your loving family. He is always watching over you, for you are His precious little child. Hugs and Blessings, The St.Martin Family in Sharon, MA.

anne said...

thinking of you and praying for you all...

Simply Fabowlous said...

I have been following your blog for almost a year now and I have been praying for your sweet girl. I will continue to do so and will pray for the specific things that you mentioned in this post. May God give sweet Ivy Joy and your family the peace and endurance during this difficult time!

connie said...

I am praying for the decisions and for His mercy to shine down on you, Mary. Your Ivy Joy has touched so many, and God continues to use your family in such a big way. Peace, my friend.

Anne said...

Oh, Mary,

I'm so sorry that you all are going through this difficult time. Please know that you, Ivy and your entire family are in my thoughts and prayers.

Anne in Colorado

Anne said...

Oh, Mary,

I'm so sorry that you all are going through this difficult time. Please know that you, Ivy and your entire family are in my thoughts and prayers.

Anne in Colorado

Anne said...

Oh Mary,
I am so sorry to hear that you and your family are having to go through another difficult time. Please know that you and your entire family are in my thoughts and prayers.

Anne in Colorado

Anne said...

Oh Mary,
I am so sorry to hear that you and your family are having to go through another difficult time. Please know that you and your entire family are in my thoughts and prayers.

Anne in Colorado

the beatties said...

Sending our love and prayers at this difficult time - Ivy has a very special place in our hearts.

CariP said...

We will be praying for sweet Ivy and for all of you. God knew just what He was doing when He made her your daughter. May He continue to strengthen you all and heal your little peanut in whatever perfect way He has planned.

CariP said...

We will be praying for sweet Ivy and for all of you. God knew just what He was doing when He made her your daughter. May He continue to strengthen you all and heal your little peanut in whatever perfect way He has planned.

Aus said...

Mary and family - prayers will continue as we hold you in our hearts -

hugs - aus and co.

Cynthia said...

I have prayed for Ivy Joy since I found your blog many surgeries ago. Your faith and her resiliency have inspired me over and again. I return often for news and have loved the pictures of her tutus and beautiful clothes, and oh, her smiles. Her love for Lexi is so obvious, and for each of you as well. May God hide you in the cleft of the rock and cover you there with His hand, and may Ivy receive His healing. I will continue to pray for you and for her. God is in control and it is such a beautiful thing to witness your clear understanding of that. I pray, oh I pray for Ivy's healing and for each of your hearts.

Debra said...

God bless you all. My prayers are for a new heart for Ivy and a healthy life for her. May God's peace be with you all

Jodi said...

Our family will be praying for sweet little Ivy and the rest of you as you sit waiting for God's answer.

Anonymous said...

Mary,Continued prayers for precious Ivy Joy and your entire family. ~Holly

Anonymous said...

Praying for you from Liverpool England xxx Katie

jnetntheboyz said...

Praying for sweet Ivy as I type this and for you and the family! Jeanette

jnetntheboyz said...

Thinking of you and your family this morning and as you walk this road of uncertainty, again. I am praying for sweet Ivy Joy as I type. Praying for wisdom for the doctors and healing for such a precious, brave little girl. Jeanette

Anonymous said...

Praying for Ivy Joy and your entire family from Portland, Oregon. Love you, little one.

--Mama to a beautiful China girl

Kathy said...

Praying for Ivy Joy and everyone else in her family and doctors and nurses caring for her.

Anonymous said...

I am not on FB but was was able to read your most recent update there..Huge prayers and hugs with your sweet and precious miracle baby today. She is such a fighter and truly a treasured gift..so, so many prayers and good thoughts for her ultimate healing are with her and your entire family now.
Also,prayers for continued strength and stamina for you, Mary. You are an amazing mother. ~Holly

 
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