Jesus Take The Wheel

I know it has been awhile since our last post.  To be honest I have just been exhausted both emotionally and physically that its hard to get it out in a post.  Also there has not really been much to report on.  We are in the waiting stage. Waiting for a heart.  An exact match for our boy. This is a difficult stage.  I don't have a problem being vulnerable but I also don't want to bring every one down post after post.

I'm realizing more and more how much I like to have control over my life.  It is a daily struggle  to be okay with not knowing when we will get "the call" not knowing if my other son will have the same diagnosis, not knowing my diagnosis and how fast things with me physically will get worse, or knowing when my daughter will have her next surgery.  If I believe that God is sovereign over all things then I should rest in the fact that his plan is perfect and I really don't need to know.  But because I'm an ugly wretched sinner I do struggle.  Some days I'm just an ugly mess focusing on all that we are grieving the loss of and worried about the hard days ahead.  I listen to all the lies satan tries to feed me. Wishing I could so badly bottle up the good days when I'm strong, when I see God at work doing amazing things through are circumstances that it blinds me to all the mess.  I have longed for heaven more than I ever have before. I long for Jesus to wipe away every tear and right every wrong.  I'm so thankful that even in my darkest moments that Gods word holds true.  He will never leave me or forsake me. The Lord gives strength to his people, the lord blesses his people with peace.  I long to be past all this stuff in our lives but also do not want to miss out on all that God is doing through our circumstance.

Pray that God would help me to relinquish my need to have control, that he would increase my faith, and that he would help me to choose Joy in all circumstances.  Please also pray for Jonah.  He will be having his first heart echo on Thursday.  So far everything has looked okay with him, but they will be able to see more and get a better picture of his heart function after his echo.  We have told him about the test and that the doctors just want to see how good his heart is working.  Given his brother and sisters experience he is concerned that they might see something.  We have acted like it is no big deal but kids are smarter than we give them credit for.

Thanks for walking this road with us.

IVY IS AWAKE!!!

IVY JOY IS AWAKE!!!!!!!!!!!!!!!!!

2:58 PM | 

Praise the Lord for answered prayers.

Read more here!!!!

Update On Sweet Ivy

Ivy has been asleep for a very long time. And while we had moments seconds of what seemed like she was aware of her surroundings, nodding yes and no, even if for just a few seconds, today her eyes still wander when lifted open. She has a very invasive bi pap mask on that is blowing a hurricane in to her and she does not protest it or even reach for it. They say that the drugs are in her tissue and she could just need more time. However they were very quick to comply to my request of Neurology coming out to take a look at her. I'm so thankful that they include me in every decision and every plan. They never round without me, if I run to the restroom (there are none on in her unit), they wait, knowing I will be here. They always ask me if I have questions or concerns and they always spend as much time with me as I need.
She is getting an Echo right now, just to be sure all is well with her heart, and she will get a full eval from Neurology this afternoon. 
A music therapist came in today and played for her. Thank you Jen for setting that up!!! At PCH they use classical music as therapy for the healing process from day 1. Here they have no such thing. And PT and Child Life were in the room from day one too at PCH. Here we have not seen Child Life or any therapists at all and it's been 2 weeks. I think that is odd for the #1 hospital in the world, but we know they get that rating from the medical aspect. And it is well deserved!! 

Due to not breathing more than just shallow breaths (since she is in this deep sleep) her right lung has collapsed. It is a little better this morning, but still the bottom half is fully collapsed. 

Her body is not urinating on its own, she is requiring a cath again. She was without it for several days but after going all day Monday without making a wet diaper, they put the foley back in Monday night. 

She does move her arms and legs, she does turn her head. This happens every 3-4 hours for a few seconds, then back to sleep with no movement she goes. 

So my prayer requests today are obvious and desperate.

I have sobbed with a very heavy heart this morning. My little girl has been through so much. And she can't wake up to breathe on her own! I'm crying out to God today. I'm asking that He agree that she's been through enough. That He breathe life back in to her little body and reignite her spirit! That we see Ivy come back to us, today!  

My prayer request to all of your are obvious.
That Ivy would wake up.
That from a neurological view, there is no cause for alarm.
That God would continue to breath life in to her lung and her body.
And that God would continue to give me the strength that only He can provide. I have nothing left to give, but every day He makes me new again. I am empty at 1am as I lay my head on my pillow but at 5am I rise anew again. Filled with the strength to get through one more day. 
From Mary
I will be in great prayer today and my faith will be renewed and I will be reminded that when I am weak He is strong. For faith is being sure of what we hope for and certain of 
what we do not see. Hebrews 11:1


Friends please pray for this sweet little girl who has been through so much and please also pray for her mom Mary.

Active Again

I know it's been awhile since my last post.  We have been recouping from this viral infection Noah caught.  We knew it was bound to happen.  Even though  I had been faithfully, sanitizing, passing out vitamins and filling there belly's with Emergen-C there is just no avoiding it. Whenever Noah gets a fever we have to let the transplant team know so they can put him inactive on the list.  He needs to be free from infection to accept his new heart.  I have to say in a small way it was nice to not have to worry when my phone rang or be in a panik that at any moment we could get "The Call".  We are however thankful that Noah will be put active on the list again tomorrow. Thankful because its what he needs to continue to survive and feel good again.  We took Noah to see Dr. Chang today and he is putting him on a Beta Blocker medication.  We are awaiting the Treclear in the mail that Dr. Alejos ordered him that will help prepare his lungs for transplant.  This will make three, which to some may not seem so bad.  But a few months ago he wasn't on any and soon he will be on 15.  It's a lot sometimes for us to process as these things become our new way of life.  We know were not alone in this and that help us get through this not so fun road.

Please continue to pray for Noah.  We have updated his prayer map.  If you are praying for Noah in one of the states that doesn't have a heart sticker, please let us know we would love to add you and fill up his map.

Check out what amazing things God is doing with Ivy.....

A lot of you have prayed with me for sweet Ivy Joy and I just want to share her latest miracle-

God is always moving mountains as you will read on Mary's blog

(click here),

Blessed Beyond Words

Oh sweet friends I can't begin to describe the overflow of Joy I'm feeling right now.  Blessed beyond words to have this level of love and support flow out from each one of you.

Last night our wonderful Church family put on a cook out and pie auction to help raise money for future medical needs.  Raise money they did indeed.  They raised over $10,000.  Honestly it was so much more than the money that they gave our family.  They showed us that when one of the body hurts we all hurt.  They showed us Joy in giving.  They showed us sacrifice.  They joyfully served and loved on us so well. They showed our children that we just don't read God's words and commandments we act them out.  It was such an incredible fun and emotional evening. We are blessed to be apart of an incredible church body.

As I said in my facebook status "Thankful is just not strong enough of a word to convey the emotions I'm feeling right now. So much love, thought, creativity, organization, and fun went into providing such an incredible event. So blessed to be apart of a church body that really displays the LOVE of Christ so well. You all mean the world to our family. From the bottom of our hearts we thank you.

Also a special thank you to Amanda Oakes for her countless time, planning, and running of the event and her amazing team for pulling it all together.  Our family will never forget it.  

Thank you also to Lucy Nolan from Channel 4 NBC news for coming out, shooting the event, and even buying a pie :)

For lots more pictures go to our website at www.noahsheart.org

Please Pray For Sweet Ivy Joy

So many of us have followed Ivy's amazing story since she was placed in Mary's arms in China just eight months ago.  We have marveled at the way prayers have been answered for this precious child.  Now, more than ever, Ivy Joy needs your help...  She needs your prayers, and she needs your support to come along side her family as they prepare for their arrival in Boston on Sunday where Ivy Joy is scheduled for life saving open heart surgery on Friday, October 19th!

A group of Mary's friends have come together with a special fundraiser for Ivy Joy. The dollars raised will go to offset travel, hotel, meals, and incremental medical expenses for their time in Boston, and beyond.  So the purpose of this post, is to get you all involved.   This is how you can help TODAY!!

1.  Buy a Tee-Shirt or Buy multiple Tee-Shirts!  These shirts will be regular fitted heather gray tee shirts for women and girls.  The Team at Wild Olives has lovingly gone above and beyond to help us get the quality of shirts we all have come to love from their collection.  **The order button is at the bottom of this post or at the top of my sidebar.  I will be facilitating the distribution of these shirts when they arrive!  I am beyond thankful to Stefanie and Colleen for working behind the scenes to make this shirt possible!

2.  Spread The Joy by Spreading the Word!  Please share this post on your blogs, Facebook pages, Grab our button, etc..  We will take orders until Thursday, October 18th.  Shirts will be shipped as soon as they are ready, which we are estimating to take 3 weeks!    Tell everyone you know about this precious baby girl and how they can help!!

3.  PRAY for Ivy Joy, for Mary and Bryan and for the entire "S" family as they faithfully let Ivy go into this surgery she so desperately needs.  Ivy NEEDS prayers for protection, for healing, and for the strength to endure what is ahead for her to recover from this major operation!  Ivy's life thus far, is a reminder that "Nothing Is Too Big or Too Hard for God"!  Ivy is scheduled for an echo on Monday, a Heart Cath on Wednesday, and Open Heart Surgery on Friday of next week.

Mary will be updating her blog with Ivy's Boston schedule.  Please stop  and leave Mary a note of encouragement.  You will find Mary's blog here.

Thank you for loving this baby girl and her family!  Now please help us
"SPREAD THE JOY"!!!!!

Women's Regular Fitted Tee-Sizing

ORDER BELOW..  Any questions can be directed to joyforivy@yahoo.com

*SHIPPING is FREE

Note:  To order, click on the Women or Girls Shirt in the first drop down menu.   Then go down to the coordinating drop down for Women or Girls.  You enter one shirt at a time, by clicking on "Add to Cart!"  If you are ordering multiple sizes, go to "continue shopping" on your invoice screen..  If you make a mistake, no worries, just email me!!  :)

THANK YOU!!!!

Sizes

Women's T-Shirt $25.00 USD  Girls T-Shirt $22.00 USD

Women's Sizes

Small   Medium   Large   X-Large   XX-Large

Girl's Sizes

X-Small (3/4)   Small (5/6)   Medium (7/8)   Large (10/12)

  

She Continues To Amaze

For those of you who have just started reading our blog this year.  Our precious blessing who we adopted a few years ago, amazed the doctors who gave her a 30% chance of survival when she escaped death, and left the hospital five days after having major heart surgery.  The doctors were scratching there heads as they tried to figure out how her arteries had opened overnight.  It was a beautiful Miracle that the Lord allowed us to witness two years ago.  Since then she has continued to do great passing each and every milestone.  We knew she was gonna need another open heart surgery (the fontan) between 4-6 years of age so this heart cath she just had done did not come as a surprise for us.  The timing however was not the greatest. Ha! However the results of her heart cath did.  Before she went in for this procedure, the surgeon shared that they would most likely need to do some ballooning or put in a stent to help open up her pulminary arteries.  She talked about possibly needing to coil several extra blood vessels and checking her pressures.  I have to admit I was a nervous wreck.  The last time we went through this she was so fragile and she went into heart failure hours after this procedure.  I was praying that she would go in and amaze the doctors once again.  I was stunned when the doctor came out and said she looked great and that the pulminary arteries looked amazing.  They did not need to touch them, said her pressures looked great, and that they just needed to coil two of the extra blood vessels.  Could not have asked for better results.  This girl is a fighter and has endured a lot in her short years of life.  I love her to pieces and she continues to amaze us all the time.  I'm so blessed to be her mommy and marvel at all that God has done to save her precious life.  We will see Dr. Chang on Tuesday and discuss the timing of her upcoming surgery.  No doubt she will pass that one with flying colors as well :)  please continue to pray for the timing of her surgery as we wait for it and Noah's future transplant.  We are confident God has it all worked out but unfortunately we are just like those silly Israelites and forget every so often and worry, worry, worry.  Just like them we need to be bopped on the head to remind us once again.  He's never failed us.  Ha!  Thank you all for your prayers and encouragement and we apologize for not getting the chance to respond to each one but we read them all and they are so encouraging to us.