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Monday, January 7, 2013

Please Give us strength

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This is overdue, Ivy is my top priority and she's keeping me on my toes.
Ivy is not having a Cath today. And today's news is not good.
 Yesterday during morning rounds I expressed my concerns regarding Ivy. I felt she was the wrong color, seemed uncomfortable even though her swelling was gone, couldn't even sit up for more than 1-2 minutes and as her mom, my intuition said something was wrong. They said they would watch her closely and after I showed my nurse the a video of Ivy the day we were admitted to the hospital she asked the doctors to come talk to me. They said that my intuition had not been wrong yet and they ordered an echo. Sure enough, the leaflets inside of Ivys brand new mechanical mitral valve were not moving. She has a clot! My heart stopped, this is something that should never have happened. Ivy's blood was thin when we came in, like it should be. Her INR was high if anything. Her Coumadin was stopped and they moved her to lovenox in preparation for her Cath. The guess is that since they were giving her massive diuretics perhaps she did not absorb the injected lovenox? I don't know. I didn't want them to use lovenox because it is in the form of shots. Why not heparin? I will never understand. I'm not a doctor but I knew, I begged my husband to say no to lovenox as he was with her when the desicion was made. She didn't cry for the first shot. That's how bad the edema was. She cried terribly once the edema was gone. 
I'm rambling... My poor little brain is spinning!
So we made a mad dash to the Cath lab for a fluoroscopy. They let me go with her and they took a look at the valve with mommy by her side and no sedation. She is so incredible! The fluoroscopy revealed no movement, the leaflet is stuck. So the leaflets that move her blood in the right direction through the mitral valve, is not moving. Clot! Devastation is all we can say. They immediately consulted with our Boston team and all agreed that while extremely dangerous used alone on such a tiny patient, TPA was Ivys only hope to dissolve the clot before it ends up in her brain.
So the TPA was started yesterday and ran all night. The dose was doubled this morning. She has had several Echos and another flouroscopy, and my heart breaks at the results, no change. The leaflet still has no movement. At 6pm, her dose will be tripled and then even if they do not get the results we need, they will have to shut the TPA off in the morning. This is a critical time, the dose is so high for her tinyness. We are watching closely, terrified of a brain bleed. Terrified period. My girl is such a fighter! In all of this despair, she has perked up just a bit and is back to ordering us around. She's sick of this all though. I'm so thankful that even though she may not have the endurance to even sit up for long,  She woke up this morning and shouted, Mom, where are you? (Yep, she mostly calls me mom!) I said, Right here. And she said, look, it stopped raining! I thought it was funny since its not rained in months but my friend Jaime said perhaps God reminded Ivy in her sleep that the storm she has been enduring for so long will soon be followed by a rainbow! 
So now where to pray? If the valve does not change we will need to get on an air ambulance and rush back to Boston. The valve will then need to be replaced. And we all know what Ivys heart and body have already been through. The specialists here are already working with Boston in case that does ends up being tomorrows emergency. We need to pray the valve moves! And pray that if that's not Gods will then that this Precious Little Girl could please be given rest. And please pray for our family. This change of events is devastating. And we really are not prepared to seperate again if we need to head to Boston. Most of all, pray that Ivy's life would glorify the one who made her! 


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121 comments:

Yvette said...

I have no idea the words brut know my heart is breaking and my prayers are continuing

Anonymous said...

Dear Lord please be with little Ivy and her family. Give them the strength to bear whatever you decide lies ahead. Lord I pray you decide to heal Ivy, please give them good news in the morning.

Courtney said...

Sending prayers your way from Ohio.

jennifer said...

Praying. Praying. Praying.

Kelly said...

Know I am praying and have linked your blog on my blog and every place I can asking the faithful to offer prayer on Ivy's and your whole family's behalf! None of this is a surprise to the One Who created this precious girl with His own incredible hands!!! Praying!!!

Half Gaelic, Half Garlic! said...

I am so sorry Mary. I wish I could say something that would help ease the pain and give you peace and comfort knowing that everything was going to be okay.
Please know that people are praying from coast to coast for you and your precious girl.

I hope tonight is the night that she will pull through and avoid the trip to Boston.

Sending lots of love and strength your way,

Lisa


Anonymous said...

Praying in San Diego!

Anonymous said...

Praying, praying for Ivy Joy ~Holly (RI)

Martha @ Berrybliz said...

Praying for complete healing

Lori said...

Praying in Texas for your sweet baby.

Rachel said...

Praying for you!!!

Avery's momma said...

Praying in Michigan

lizzielou said...

praying and praying and praying. for healing and for peace and for Jesus to wrap His arms around you both so that Ivy can bounce out of there! xoxoxoxoxoox

Catherine Capps said...

Praying for Ivy!

"I will lie down and sleep in peace for you ALONE oh Lord, make me dwell in safety" Psalm 4:8

praying for peace that passes ALL understanding. wisdom for the doctors and guidance of their hands by The Great Physician.

Anonymous said...

Praying

Ladyblog said...

Praying for strength for Ivy Joy and for your family!

John G. said...

So sorry Mary. I wish there was something I could do. We will keep Ivy in our prayers. We will pray for you and your family so you have the strength to get through this difficult time.

Hugs from CT.
Caroline

the meaklims said...

I can't find the words... just know that we are praying and praying.

Holly said...

Love you all and praying nonstop!!

stacyh said...

Praying for you, your family and your sweet little Angel. You are an amazing person with incredible faith. Our God is so good and will take care of sweet Ivy Joy. I have been praying for you and your sweet baby girl ever since you have been in China. My whole family feels so close to this amazing child of yours and will continue our prayers. Thanks for the updates and stay strong. Stacy

Lisa said...

Oh dear Mary, Ivy's precious life is already glorifying the one who made her! We are all here with you, my friend, and YES we will pray for your family! We are here for you! I am just so thankful that you are surrounded and supported by such an amazing rally of love...God's love...shining through in humanity! If it is God's will to take Ivy Home, then we will be right here. But for now, we are still praying for MIRACLES!!!!

Patty said...

Praying in NW Pennsylvania. We love your family. Please keep us posted.

Paige said...

Mary, I have no words but that we are praying fervently for you, precious Ivy Joy and your wonderful family....

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight. (Proverbs 3:5-6)

this is the only verse I can hold on to when life is in a place of no comprehension of His ways.....
Hugs and my love to you as you try to stay strong for your precious child and family

Amy said...

Praying for sweet Ivy, your family and the doctors. Your continued faith is an inspiration.

Turtle Mom said...

My thoughts and prayers are with Ivy Joy, your family and her medical providers. God Bless you all!

Sister Kim said...

I am praying for Ivy and your family. May God's will be done... I also posted your blog on my facebook wall. May God comfort you all...Sister Kim, OSB

Anne-Marie said...

we'll pray for Ivy and your family

Anne-Marie from Quebec, Canada

Dardi said...

Mary ~ Ivy has been & continues to be on my heart. Praying for your continued discernment where her care is concerned (so proud of you for trusting your "mommy gut") & endurance for you & Ivy. Big hugs.

Grandma Shelley said...

There are no words that I can say to you, except that I will lift Ivy Joy in prayer, along with her family. She is so lucky that you are so intuitive, and are willing to speak up for her. Our God is an amazing God....
hugs to you all from ND.

sierrasmom said...

Oh Mary...my heart is breaking for all that Ivy has endured. Please know that our family and our church and our friends are all praying or your sweet girl. I am praying for complete healing....praying for strength for you all...and praying that through it all you feel Gods presence. Love and hugs to you
Kathie Hikade

Elaine said...

Just filled-in my husband on the new developments going on in Ivy Joy's little body. We will both be praying through the evening (and night) that God's hand will move and Ivy Joy's clot will disolve! Praying you will find strength and rest in Him as you walk another day of this battle. Remember you are not battling against flesh and blood...and know that you are giving Him glory every step of the way! With love from one "heart" family to another - the Horton's

Wendy said...

Praying and sending love from Massachusetts!

Randi said...

No words. Praying for Ivy and your family.

Kimberley said...

There are tears in my eyes reading this. Praying. With all my heart.

Fannie said...

Praying for Ivy Joy and all of you with all my heart Mary!!!

Pat said...

Praying with all my heart here in Pennsylvania.

Kristin said...

Praying!

Nicole said...

Praying!!!

Maggie said...

Mary:
We are praying for you, the ever strong Princess Ivy Joy and your family....it breaks my heart to see you write how much she needs rest. Where there is life, there is hope and while I know God's will always prevail, Ivy has a lot of living to do. You are a true Mama Bear, Mary.....totally trusting in the Lord. May he wrap his arms around all of you this evening, providing you all with perfect peace.

Anonymous said...

continuing in tearful prayer to get the valve to move !! Your Faith is so strong ,Mary, Ivy's life does GLORIFY our Lord! I will get this out to my prayer team for Ivy and your family and doctors!! Sending Blessings and Strength to you ALL!! Cathy in Illinois!!!

Angel said...

Such sad news....As a parent I would be heading to Boston with her right now. Better safe than sorry. Emergencies are too scary.
She is in my Prayers for a miracle.

my3 kids said...

We will not stop praying for you all...we pray that Ivy's valve starts working tonight and that your family will not have to return to Boston..we pray that Ivy will not suffer anymore pain. Sending you a great big hug from Canada xoxoxo

Janice

Jamie Lynn said...

Praying from Massachusetts!

Anonymous said...

Sometimes you just want to say "Really,God?". It's so hard for us to understand the "Why?" But I'm so thankful that I know a God who just wants us to trust him! I'm praying specifically that you will just trust Him to take care of all the details! Our God has done great miracles in this tiny girl, and I'm praying with expectation that we will see another very soon!

Love and prayers!
Lauren in Florida

Luciana said...

The Bible says: “"The desire of those fearing [God] he will perform, and their cry for help he will hear, and he will save them."” (Psalm 145:19)

“"Jehovah is high, and yet the humble one he sees."”—Psalm 138:6.

Jesus said: “"Keep on asking, and it will be given you."”—Luke 11:9.

“"throw all your anxiety upon him, because he cares for you."”—1 Peter 5:7.

And praying I still am, dear Mary. This clot is being dissolved right now, for it is not God's will for Sweet Jellybean to suffer. He loves her so much.
Praying fervently. With much love.

Kristiana said...

We serve a mighty God who desperately loves our little ones. I'm praying! God, please do these things for Ivy that your name would be lifted high and that we may proclaim your faithful and glorious works to our generations!

Stefanie said...

Oh my goodness. Will join so many who are lifting up your precious girl tonight and tomorrow -- that the clot be MOVED!

Kim said...

Praying!!

Even Miracles said...

Continued prayers for healing. Ivy Joy may the angels watch over you and may His healing prevail.
Amen
May you all have strength and peace

Teachn18 said...

Dear Lord please keep Ivy in your loving hands. May you surround Ivy and her entire family with your loving hands. Continuous prayers from FL!
Much love,
Krissy

the artist's daughter said...

Our hearts are breaking for your beautiful family. Ivy is such a special girl. Heavenly Father chose her family well. Someone I respect told me last week "The only prayer that Heavenly Father will answer your way 100% of the time is a prayer for strength." We along with our little China girl are praying so much for your family and your sweet daughter. Thank you for your amazing example. You have changed us all for the better. We love Ivy and we love your family.

Christy said...

Praying for you in Arizona tonight. Praying the valve will move and that you will feel God's everlasting arms holding you close as you wait.

Denise said...

I will be praying for Ivy, your family and her doctors.

Hugs from Georgia.

Kristi said...

Praying

Anonymous said...

Praying in Florida for your precious baby girl and your family.
Praying for healing and for peace.

Raegan said...

Prayers coming from Indonesia!

Anonymous said...

praying for your sweet girl

Ana said...

Praying in NC!

Jessica said...

Praying for your sweet Ivy. as well as your whole family.

Anonymous said...

Praying for you, sweet Ivy, and your family. God CAN do this.

Deb

Anonymous said...

Praying through tears. My only prayers are for Ivy's valves to move and the clot to go away. Please Lord, heal Ivy. I beg of you. Lay Your hands on her and heal her heart.

Beth

Anonymous said...

On my knees in Pennsylvania

Anonymous said...

:((( Sending many many thoughts and prayers!

John & Michelle said...

If I could give Ivy my heart tonight I would! I believe GOD is still in the miracle business!

Annette Duty said...

Mary - we continue praying for all of you. I've shared your blog with everyone I can think of; and in every adoption group; with my family; and with all my friends just asking that they please pray. I know if we all come to Him in prayer, He will hear us. Our Father is faithful, loving, and kind. On the way home from work as I thought about Ivy praying for a healing, a song came on the radio on KLOVE - "Lord Above, I need a miracle..." And I thought, you know, so rarely do we step out in faith and just pray to God for a miracle. We always think, we'll save that for the really serious situations (and it's as though we think maybe, we only get one miracle a piece?) Well, I prayed, God, we need a miracle for Ivy Joy and Lord, I'm praying for that miracle for her. We need that blood clot gone and the valve to work again and to be on our way again for a healing. So, that is what I'm praying for that Ivy is healed. I also pray for each one of you. As parents, as her sisters, as her brother, as her aunt, uncle, grandma/grandpa, as friends of her, I pray for such incredible comfort for all - peace that surpasses all understanding. I pray that we do not let fear overcome any of us but know that God is faithful. He is with all of you, I know this to be true. While we all wish we could do something, anything for Ivy and all of you, I do know that Prayer is the answer. God is faithful to answer prayer.

Bless all of you!

Hugs and warm regards,
Annette, Alexandria, and John

Anonymous said...

praying for you and your family ...bless all of you ..... The O'Briens Newfoundland

Judy Winship said...

Praying for God's girl, your sweet little one and your family. Sending another all call to pray. He hears, He rescues! Keep standing firm, even
when you are exhausted and disappointed at the very least.

the beatties said...

Praying for your precious Ivy with all our heart, all our strength and all our might.

Melanie said...

Oh Mary...our family is praying hard for that valve to move and the clot to dissolve! Praying for your precious girl to be healed, praying for strength for you and your family, praying for her doctors, nurses and all involved in her care, praying for a miracle. There are so many people praying for sweet Ivy Joy and God hears each and every one of us.

jaxgatormom said...

Mary-I am so sorry you are going through this. I know how you feel. A very similar situation happened with my son when he was a baby and we ended up on an air ambulance back to Michigan from Florida. My heart aches for your family and what your sweet baby girl is going through. It is so overwhelming, but not for God. He's got this. No matter what. Just like He always has. I pray for all of you tonight for rest, wisdom, and for God to give you all strength each minute. Although we have never had the opportunity to meet, this Mama's heart is right there with you and we are all praying you through. Your family is so loved and I pray that you will feel the Holy Spirit's arms wrapped around all of you.
With many prayers and hugs from our family,
Angela

Laine said...

Praying fervently in Alabama!!

Anonymous said...

Way to know your child,mom. A heart cath with a clot would have been bad. Admire your courage and wisdom. And Ivy Joy is blessed....and a fighter-all good.
Praying that joy comes in the morning.

Ron Stevens said...

Continued prayers from NY........

Anonymous said...

We are on our knees praying for a miracle in this little bundle of joy. Ivy i know is my inspiration and many more. Our mighty and strong God will 100% give his plan for Ivy. Lord, give Ivy's family and friends peace and hope thru this suffering. Continue to use her in mighty ways to show your love. Help the doctors and caregivers to give Ivy what she needs, and to see You thru her. Please wrap all of us in your comforting arms. It is all up to you, Lord. In Jesus' strong name, Amen.
Prayer - Harper (MN)

MaddJaxMom said...

Prayers from Colorado for Ivy Joy...

Anonymous said...

I'm behind on reading Jesus Calling, so this is actually yesterday's (January 6th) but thought it was timely and wanted to share it:

I'm behind on Jesus Calling, this was yesterday's and was timely for me and thought you might be encouraged by it so I'm posting again (sorry!):

Jesus Calling Daily Devotional - from January 6th

I am able to do far beyond all that you ask or imagine. Come to Me with positive expectations, knowing that there is no limit to what I can accomplish. Ask My Spirit to control your mind, so that you can think great thoughts of Me. Do not be discouraged by the fact that many of your prayers are yet unanswered. Time is a trainer, teaching you to wait upon Me, to trust Me in the dark.

The more extreme your circumstances, the more likely you are to see My Power and Glory at work in the situation. Instead of letting difficulties draw you into worrying, try to view them as setting the scene for My glorious intervention. Keep your eyes and your mind wide open to all that I am doing in your life.

Ephesians 3:20-21 " Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think. Glory to him in the church and in Christ Jesus through all generations forever and ever! Amen."


Sarah said...

Praying with all my heart! Lord, please watch over precious Ivy and help her little body to heal!

Anonymous said...

Jesus healed eveyone who came or were presented to him. It IS Gods will to heal. By HIS stripes we were healed. Praying peace and strength and hope for tour family. Declaring healing for Ivy. God bless your dear girl and your family!

Rae said...

Praying for Ivy and your entire family.

Alison @ Notyetwhatweshallbe.wordpress.com said...

Praying for you and your family and your sweet baby

Preppy Pink Crocodile said...

Praying, praying, praying!! And sending you a bloggy hug.

KK in NY

Tim and Monica Kane said...

Praying from Alaska!

Kerry said...

Mary, you do not know me, but I am a dear friend of Jennifer Stone. She has consistently kept the Kansas and Missouri delegation of Team Ivy updated on your precious girl's progress. I have especially been touched by Ivy and your family's journey. I want you to know what an inspiration you have been, and how special Ivy is to have you as her advocate, caregiver, and mommy. My husband and I are praying for you, for your family,and for little Ivy. How I wish I could give you a hug and hold Ivy's hand with you as you wait and pray. May God wrap his loving arms around you and give you His peace.

alexa said...

No more words. My prayers are all for Ivy and you and your family.
Alexa

Laurane et Juline nos 2 petits Amours said...

Nous prions pour votre petite princesse IVY, et pensons fort à vous.
Courage,

Sylvie (FRANCE)

Rebecca said...

Prayers from Fairbanks Alaska

Aus said...

Praying for you guys here in Cincy - hugs -

aus and co.

Anonymous said...

Prayers all the way from Portugal. Team Ivy knows no boundaries.

Leah Mei said...

Praying for the clot to dissolve NOW!

Tina Michelle said...

Sweet, sweet girl! You are all in my thoughts. She needs a break already!

Debi said...

Sending prayers and love from Michigan.

Anonymous said...

You have my prayers. Signed, another Mom

Anonymous said...

Have they tested for Heparin induced thrombocytopenia? (P4 antibodies). Not sure where you are, but Boston commonly tests for this. Patients exposed to heparin can develop antibodies which cause paradoxical appearing clots, especially postop patients. Lovenox is low molecular weight heparin and can also cause clotting in HIT+ patients. Usually platelet count is down but not always! Sometimes the clot is the first sign, and she should be tested immediately and anticoags switched to IV argatroban in the meantime. I am surprised at how many outside the medical field in Boston know of this, but it's easily googled and it's common enough with catastrophic results if not caught. The antibodies may go away in time, but if a person is HIT positive, they need to avoid all heparin. This may not be the case, but it can't hurt to test.

Jo said...

Praying, praying for God to work some more miracles on your sweet girl.Praying for strength for your family too.

Anonymous said...

Jesus, Jesus Jesus.... Please be with Ivy and her family. Touch that little heart and make it whole.

Praying and crying with you in MN. Another mom of a chinese treasure...

Lynilu said...

Adding prayers from New Mexico to your list. You are all in my heart.

Kristi said...

about to drop to my knees in prayer for Ivy and her family....

Heather said...

Praying for all of you.

anne said...

prayers from Virginia...

Noemi said...

Praying fgr precious Ivy Joy!

Anonymous said...

Mary,
Standing with you, Sweet Friend.
Always.
Amy and Ben

Anonymous said...

Praying and sending love and strength this morning.

3 Peanuts said...

Mary, I am on my knees praying for sweet Ivy Joy. I have tears as I type this as she and your family have been through so very much. I will whisper prayers of healing as I move through my day /and please update us as you can.

Love,
kim

Anonymous said...

Praying in Indiana for your dear sweet baby

Our Journey to Grace and Olivia said...

Although I do not know you personally, as a fellow adoptive mom I follow your story. I am encourged and inspired by your authenticity and transparency and your faith.

Today's post literally ripped my heart out. I could feel you pain, your panic and your fear. I also feel your clinging to your faith to carry you through and see you surrendering all to the Lord.

I am right now going before the Lord and asking for peace to flood your spirit, for the good news to pour in, for a fight and perseverance for you, Ivy and your family.

Claiming victory!

Anonymous said...

Praying from around the corner in Glendale.

Anonymous said...

praying in Virginia...marianne

Anonymous said...

over here at your blog from three peanuts -- many, many prayers and good thoughts for ivy and your entire family from terry in pennsylvania

Anonymous said...

I am praying for sweet Ivy.

Jen said...

I am praying for you in Cincinnati...

snekcip said...

Dear Lord, I know YOU already know this precious child life story. You are the AUTHOR of her life...the ALPHA AND OMEGA. The beginning and The End. We are lifting IVY JOY up to you. We PRAY....Touch, Heal, Restore her precious body. We PRAY...give her comfort. We PRAY...work a miracle in her body. We PRAY....return her to her family. Lastly...We PRAY...for acceptance of YOUR WILL...again and forever...we WILL PRAY.

Anonymous said...

Praying in Ohio

Anonymous said...

Praying in Nebraska!

Anonymous said...

Many heartfeltl prayers being sent your way from Bangkok, Thailand from an adoptive mother of a boy with TGA.

Twinkletoes said...

Praying for you in PA. Please stay strong.

Kristin Burnett said...

May God bless and heal your little girl!

Jennifer said...

Praying in Western Pennsylvania. Sending hugs . . .

Anonymous said...

Lord Hear Our Prayers.

Praying for healing, praying for a miracle, praying for wisdom, praying for peace, praying for hope and a future, praying for understanding, praying for strength, praying for a surrounding of love and support, praying for answers, praying for faith, praying for your entire family, praying for Ivy.

Jessica said...

prayers from edmonton alberta

Mama to Mia said...

Surrounding Ivy and your entire family with prayers here in Oregon--

Lynne, mama to Amelia MeiYun, age 7

Jessamyn Fields said...

Praying always.....Momma to Fierce Pierce a BCH boy and Heterotaxy angel

 
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