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Thursday, January 10, 2013

ramblings from room 9

Pin It I was not going to post until tonight after Ivy was out of the cath lab. But sitting here with anticipation for what I pray will bring Hope, has left me with a need to ramble. Girls are like that. Or at least this girl is! My sweet husband is home with the precious family holding on to the same hope. And from afar, I feel so very lucky to be the family that we are. I was telling my girls earlier, that while I would not wish what we are going through on anyone, I am so grateful for who we all have become because of it. For I am sure that it for many, it feels good to be able to say, "we are so blessed by 3 healthy kids and a wonderful life and everything is just so perfect", but honestly, what would you ever gain? We have gained compassion and strength. We are enveloped in our faith and our family is closer than ever. My kids have a better relationship with their dad and their Father in heaven. We lean on each other better now. We are not afraid to ask each other for help. We find joy for all things, we know how to find joy in something as simple as a wet diaper! We know what it is like to miss each other desperately and we appreciate every moment differently now. We have seen suffering, real suffering, and we have seen pain that would break your heart. We know what love looks like in a whole new way, and no, we would never want to have life any other way. Do we wish that it was not this way? Of course, we are human, we love our darling little Ivy, we want her to be given no more of this suffering!! We beg God for this daily! But sometimes God answers our prayers differently than we expected. But he still answers. And this is our life, our family, our orchestrated by God time on earth. And at this time it doesn't involve bells and whistles, it involves a whole lot of faith, a whole lot of trust, a whole lot of hope, and a mountain of LOVE!!

Ivy Update
Ivy is in heart failure again and the large belly issues she has been dealing with is likely a result of that. The right and left ventricles have a lower function than she has ever seen. Her status was labeled critical on the consent form I just signed for the anesthesiologist due to the low cardiac function of her heart right now. She was ventilated this morning around 9am. They are performing a TEE Echo cardiogram (echo through the throat) and a heart catheterization as we speak. They are looking at the mitral valve and the right coronary artery. If there is anything they can do for the mitral valve they would need to do open heart surgery tomorrow and her surgeon is prepared for that. If there is anything they can do for the coronary artery they will do so in the cath lab today. I may update later tonight via Diana if she is still awake at that time and willing. 

Many of you have been texting emailing and FB messaging me about being here alone. I am not alone. I am wrapped in the loving arms of our father and surrounded so graciously by all of your prayers. I have a loving husband at home making sure our kids get the closest thing to normal while we go through this valley. And there is nothing that makes it easier to focus on Ivy and what we must face next through this valley than knowing all is well with the other half of my heart! We also need to remember that between the trip to China, the long PCH stay all the shorter PCH stays and the long Boston stay and a few more short PCH stays and now another Boston stay all in the course of 10 months........ My husband HAS to work so we can pay for Ivy's Cool Ranch Doritos my friends! So please don't worry about me. I am blessed with some very sweet new friends and old friends who would all be here in the drop of a hat if I just asked. And when the time comes, when I feel I am ready and the time is right, I will indeed make those calls. But for now, I am most calm and most comfortable, just being here alone. I can focus on Ivy, cling closely to God and have ZERO distractions! I am sure that all of you praying for peace for me has been a prayer God has not taken lightly. 
Our family is so blessed by my mom who will once again be flying in to help care for the crew (mostly Little Lexi) so that Daddy can go to work. After all, our hope is that Ivy is home eating her chips on her beloved couch in no time at all!!!



I asked for strength 
and God gave me difficulties and made me strong
I asked for wisdom 
and God gave me problems to solve
I asked for prosperity 
and God gave me the strength to work
I asked for courage 
and God gave me dangers to overcome
I asked for patience 
and God placed me in situations where I was forced to wait on Him
I asked for Love 
and God gave me troubled people to help
I asked for favors 
and God gave me opportunities
I received nothing I wanted and received everything I needed.
My prayers have all been answered. Pin It

52 comments:

Jen said...

I will keep lifting you all up in prayer. Hang in there, Ivy and Mommy!

Candy said...

You are a remarkable woman.

Anne B. said...

What do people do without faith? So thankful you know our Father in Heaven and trust him for all things. He hears our prayers for Ivy Joy!! (((HUGS))) from RI.

Jennifer P said...

Beautifully said, dear Mary.

Amy said...

Amazing and beautiful faith you have. Praying for all of you.

Lori said...

Praying as always in Texas.

Holly said...

Well said Mary!! I don't know what to say other than keeping all of you in our thoughts and prayers. Please know that we are here for Ivy,you and your family if you ever need anything.
Love and prayers,
Holly

Paige said...

all our love to you sweet Mary!!! Praying for a miracle for your littlest and peace for those at home. you nailed in on the head in all you say, I am so thankful to know you and see the hand of God upon you now.
Hugs and I sure wish I was in Boston to bring you a starbucks and a hug!

Martha said...

Continuing to pray for all of you.

Preppy Pink Crocodile said...

I have been refreshing your blog all day- totally stalking you- though I hope not in a creepy way. It's funny because you just never know who will make a big impression on your life. For a reason only God understands, Ivy has made a big mark on my heart. Y'all are always in my prayers. I am so grateful for the update and to know you are holding up OK right now.

Hugs,
KK

Jessica said...

You don't know me, but I have been following your story thru Jennifer Stone. I just wanted you to know that even people you don't know are lifting Ivy and your family up.....I pray for Ivy often!!!

alexa said...

I just can't stop crying. There are so many things I would like to say but I can't because of my english (It will be so easier in french)
Ivy's story changes so many things in my life. When I'm scared, when I'm tired,when I've got some problems,when I'm just having bad days, I think of Ivy and it changes all.
How can I be so sad when there is this little girl fighting and being so so brave.
YOU bring me back to faith, I pray each day before sleeping and I haven't been praying for so long.
So many things I 'd like to say.
You are in my heart, you are such an amazing woman, an amazing mother.
I pray so hardly for you.
Give Ivy a kiss from a mother in France who thinks that this tiny little girl has got the power to change people thousands miles away.

ashley said...

I am praying. My whole family is praying. An entire seminary in Orange County is praying for sweet Ivy. your words are so beautiful. your precious Ivy is so loved.

maggie k said...

Mary - Just let me know and I will be there in a flash but in the meantime I am continuing to pray for Ivy. My missal opened today at this: Psalms 18
I love you O Lord my strength,
O Lord, my rock, my fortress, my deliverer.
It seemed like the perfect pray for a tough day. Hoping tomorrow will be an easier one. Love Maggie K

3 Peanuts said...

You are an incredible inspiration of faith and God's love. I am sure you are appreciating the time alone with God and Ivy. You have our constant prayers.

Yvette said...

How selfish I feel - exactly what I need to hear from God through your writing. We are lifting you all up in constant prayers

John & Michelle said...

Praying with you in Athens, AL
(((HUGS)))
John, Michelle and Piper Conley

bbmomof2boys said...

Lifting you and your family up in prayers.

Many hugs from NC,

Carla

Anonymous said...

Thank-you, for reminding of everything I should be grateful for. I read your words and keep you and Ivy in my thoughts and prayers.

likeschocolate said...

Hugs from Atlanta! You are in Good Hands! Boston is the best!

Anonymous said...

Praying in tn.

Kristy said...

I know exactly what you mean... From our perspective of course!!! My heart is aching for you and we are praying, praying, praying, knowing that Zgod's will and timing are perfectly aligned!!

Jboo said...

Keeping Ivy and your family in our constant prayers.

janet

Kimberly said...

Praying for continued strength, peace that passes understanding, miraculous healing, God's glory to be continued to be manifest through you Mary, Sweet, Precious Ivy, Lexi, and the rest of your family. So grateful for your faith in Christ! Kimberly from Youngsville, NC (adopted Jake from China in June 2012)

Anonymous said...

Beautiful. Bless you all.

Thank you father for the strength and love you continue to provide to this family, for guidance and courage for Ivy and her medical team, and for peace and comfort provided to Ivy's loved ones. We ask that you continue to provide these things. In your name,

Amen.

DiJo said...

Mary,
This post is once again a testimony to why God chose YOU to be Ivy Joy's Mama!!!! You have never wavered in your faith.. Not for one single minute! Your light challenges us all to look up and give thanks for the every day moments in our lives! How is it that you encourage us, in this time where we should be encouraging you? I am so thankful that I get to know you not only in this blog world, but in real life too!!!!

I will be awake whenever you need me tonight!!! I look forward to blogging about God's plans for your baby girl!

Thank you for reminding us to be "Joyful in ALL things!"

Love,
Diana

The Byrd's Nest said...

Praying with you and for you in Texas! She is my hero:)

Wendy said...

Praying, praying, praying!

Wendy said...

Praying, praying, praying!

Sherri said...

You are such an incredible person. And I will continue to pray for little Ivy and her awesome family!

Blessings from Florida
Sherri

Fannie said...

I am constantly amazed at how you have such faith and strength in the face of such adversity. It is truly remarkable that you have so much going on, but still somehow bring me to my knees to listen more closely to him.

Mary, you, Ivy, and your whole family are constantly in my prayers. I know that God has a plan for Ivy Joy and I will pray for your strength and hers as he allows it to unfold.

"Now faith is being sure of what we hope for, and certain of what we do not see..." Hebrews 11:1

Anonymous said...

So thankful to have found your blog and have gotten to know you by following it. You are truly an inspiration,Mary, how could we ever get by without FAITH? Continuing in PRAYER for all of you and sending BLESSINGS and LOVE, Praying for the BEST for sweet IVY!! Prayerful,Cathy in Illinois and our prayerteam

The Whitledge Family said...

Praying for you here in Kentucky with tears in my eyes!!

Even Miracles said...

Holding to HOPE in a big way for you and Ivy Joy.
Prayers and love

Anonymous said...

Such beautiful words, Mary. Praying, praying for your sweet Ivy, you and your family. ~Holly

Ana said...

Prayers from NC!

Sharon said...

You don't know me but I also a mommy to a cardiac girl. I am sending prayers and healing vibes your way.

The Harlicka Family said...

Mary, you are such an inspiration as a mother and through your unshakeable faith. We will continue to be "here" for you and Ivy Joy and keep praying for you, Ivy and your family!

Ashley said...

Praying for your sweet, precious girl!!! And her incredible family!

Ashley

Anonymous said...

Still praying! May God bless you as you are such a beautiful testimony of faith and trust in Him.
Joy

Anonymous said...

I pray for you all the time. I have had two Fontan operations, and I am 55. I was at Texas Children's Hospital last year and was in ICU for 75 days. I know what you are talking about when you say that you wouldn't want is to happen but,even as it is happening, it is wonderful to feel and know the presence of God. It is a gift. Even though I was so sick, I never felt safer. You are always in my prayers and I

Anonymous said...

Think of you all the time.

Myra said...

I will continue to do my small part to support you in prayer Mary....my heart just aches at how much you sweet Ivy and your family has endured...I feel guilty because while I am trying to lift you up,u are actually the one inspiring me .....thank you for sharing these private moments.....

Anne said...

What a beautiful post! Keeping all of you on my prayers.

Anne in Colorado Springs

Karin said...

I am so blessed to see God glorified in you...to see Him holding and strengthening you and your family. Praying you will continue to find your strength in Him and that He will heal your precious Ivy. We all love her through you.

Kristi said...

Our little Ivy....sleeping beauty, tiny angel!! Love her!!!! And this post and your strength and faith. Hoping so much that with God's guidance, the Dr.'s will "see" what needs to be done to heal Ivy's heart and that it end up being 'a much easier fix' than ever anticipated. (I remember the occluded artery that, well, wasn't!)....This is Ivy we r talking about so this is possible, right?? Little miracle girl!!

The Simmons Family said...

You are one amazing momma. I feel you. Sometimes it's just easier to be alone in the hospital with Owen and I feel like I have peace when I am here. It's a whole mess of chaos and fear, but Heavenly Father gives us more strength and comforts us. No doubt. Many prayers for Ivy and for the Boston team that they will make the best decisions for her moving forward. I am so grateful that you have the best in the country working on her. :)

Lori said...

Simply beautiful, Mary! I can feel the peace of God as I read! Thank you for being so honest and vulnerable. Praying you sense His immeasurable grace as you wait for answers... and for healing. HOPE is still fully alive! Rest there! Know that you are loved, sweet friend! Lori McCary

TanyaLea said...

Oh Mary ~ I've admired you since the day I first met you before you had yet traveled for Lexie... but to say I admire you now, would be an extreme understatement! You truly are a remarkable woman of God and I can see His reflection in you!!

How people make it through this life without faith and hope in Him, I will never know!

It goes w/out saying that you ALL will remain in our thoughts and prayers. Day and night, I think of you, and pray fervently whenever His spirit prompts. I also give thanks for what He has already done and has yet to do. Praising Him for His divine GRACE, as asking that He will give you a peace that surpasses all natural human understanding! <><

Love you, sweet friend!♥
~Tanya

Alison @ Notyetwhatweshallbe.wordpress.com said...

This is so beautiful, Mary. I continue to pray for you and Ivy and the rest of your family! Keep hanging in there!

Twinkletoes said...

Praying for you and Ivy, as well as the drs and family involved.

Anonymous said...

Mary - I'm writing this through my tears. I lost it looking at Ivy's photos I'm praying so hard for your sweet angel. I feel you are in the best hands possible with Dr. Baird and of course God holding Ivy up. One battle at a time and this is today's battle. So many out here praying for your little girls.
Beth

 
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