Once Upon A Prayer

Wednesday, January 30, 2013

Day 69 - MIRACLES

This is the post I have been dreaming about writing for 69 days.  I have spent many sleepless nights formulating just the right words to say when this day would come.  And here I am, bursting with HOPE, and JOY, and PRAISE...and all of those words are eluding me!

What I can share with you is this...God has performed a miracle in "our" Lily Grace.  There is no medical explanation as to her miraculous recovery.  NONE!

On Monday, January 14th, Jacques and I walked alongside Lily's hospital bed as they took her off to the Heart Catheterization lab to work on her heart.  I was so excited about the huge potential for healing that this procedure held, and was hopeful that by creating a hole in her heart (fenestration) to relieve the pressure, this would also be our ticket home. 

Instead, the heart cath nurse came out many times during the procedure to update us on Lily's progress, and it was never good.  Lily needed a blood transfusion very early on (more of Papa's blood), and her blood pressure was so low that team became very nervous.  The surgeon had four goals that he hoped to achieve through the procedure, but ended up only doing one...the most crucial one, which was to create a 6mm fenestration and use two stents to hold it open.

During this heart cath we were also given the news that the 4th open heart surgery that Lily had on December 14th to attempt to reattach her right pulmonary artery to her heart (in the hopes of restoring blood flow and oxygen to her right lung) had failed.  The surgeons also reiterated to Jacques and I that Lily was really "sick".  REALLY, really sick.  They prepared us for what we would see in the recovery room.  I just kept thinking about how awful she looked over the summer after her Fontan procedure, yet nobody "prepared" us for what we would see.  They actually told us that she "looked really good" back then.  No words or explanation could have prepared us for what we were about to see.  The anesthesiologists had pumped her so full of fluids to keep her alive that Lily was completely unrecognizable to us.  Her legs were purple from the waist down, that initially worsened every hour.  Deep, dark, purple.  The doctors were unable (for days) to even get a pulse below Lily's groin.  Lily remained on a ventilator for 5 days after the heart catheterization.  Children with her anatomy do not do well on a ventilator, and it is always the goal to get her off the vent immediately after surgery.  For days, everyone (nurses, doctors, surgeons), kept uttering the words, "Lily is very sick".  Jacques and I are not strangers to the medical wold now. 

We knew that they meant our sweet baby girl was dying.  
Right before our eyes.
 
Hours after the heart cath, it was discovered through an echocardiogram that Lily's fenestration had clotted over.  We were now faced with the reality that Lily had a 6mm clot in her heart.  It was decided that any attempt to break up the clot would cause immediate death.  Lily still has this clot in her heart.  She is on high doses of anti-clotting medication in order to prevent future clots, but it will not help with the large clot she already has. 

While still in ICU, Lily began to make very small improvements, followed by huge setbacks and roadblocks.  Fast forward a couple of weeks.  Due to high spiking fevers of unknown origin, they decided to remove Lily's chest tubes.  Lily has had multiple chest tubes over the past 9 weeks. Her pleural effusions were so bad that on most days she was dumping 1,000ml of fluid from her chest.  The team discussed with us that perhaps these chest tubes had caused an infection, as evidenced by the fevers, and needed to come out.  So, this past Monday, the chest tubes came out.  We talked about the probable need to replace them within the next few days.

BUT...God had a different plan.  For no medical reason or explanation, Lily's lungs have began to improve on their own, without the help of chest tubes.  Every morning Lily has a chest x-ray, and every day so far this week, her x-ray has looked improved.  Yesterday, they even removed her oxygen!  Lily does well without the oxygen while she is sitting in bed, but when physical therapy came in she became very blue and her oxygen level dropped into the 60's when she stood up or walked a few steps.  This could be due to the fact that she only has one functioning lung, or perhaps that she just needs more time to recover. 

Yesterday, the nurse practitioner actually said the "H" word to me...HOME!  I burst into tears.  The current goals are to get Lily's Lovenox injections (anti-clotting medicine) to a therapeutic level, get Lily to eat (she has not eaten anything but ice chips in over 3 weeks), wean her completely off the methadone, watch her lungs for fluid accumulation, and monitor her electrolytes and sodium which have been a major issue this past week.

THANK YOU prayer warriors from the bottom of our hearts!  We are in the HOME stretch now...please continue to pray our Lily Grace home.  Our family is desperate to be back together again!!!

You, my friends,...
have had a front row seat to a MIRACLE!
 
LILYSTRONG
Now to Him who is able to do immeasurably more than all we ask or imagine, 
according to His power that is at work within us,  
to Him be glory in the church and in Christ Jesus throughout all generations, 
for ever and ever! Amen. 
Ephesians 3: 20-21

31 comments:

  1. TEARS OF JOY fall from my eyes, Emily!!! Oh YES, this update was well worth waiting for!!! And that picture...oh my heart!!! THANK YOU, LORD!!! We rejoice with you here today and always!! We are LILYSTRONG!!!!!

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  2. Praying hard so you all may return home soon!

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  3. crying...words cannot explain how I feel right now...restored...renewed...relieved...keep fighting Lily....we will keep praying. I cannot wait to see photos of her dumping out all the toys in the toy room. Hugs to you Emily.

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  4. It is so good to hear this news. Our 6 year old is concerned about my tears. We will pray that stay strong and that road home is short.

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  5. Thanks be to God and we shall continue to pray miracles for Lillly and see here home soon!

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  6. My adult, medical, doubtful, skeptical mind was listening to my children pray at the table last night. Each one, from the 13 year old to the 3 year old (we think, she kind of mumbles :) ), prayed that Lily would get better and go home. I prayed it as well, but I saw the pictures, read the medical updates and doubted. Emily, Lily and family, God....forgive me for ever doubting You. I cannot wait to share this update with me children.....You are so loved, Lily!! Be strong and brave, as you have been all along.

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  7. Rejoicing with you guys!
    Thanks be to our God!!!

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  8. Miracle is right. God is GOOD ALL the time! God bless you all!

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  9. So glad to here this good news. Thanks for updating us and hoping the trip HOME, comes soon.

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  10. Thank you Jesus! So happy for you.

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  11. My family, along with so many others, waited daily for prayers to be answered and to see Lily strong and healing. We cried along with you and held hope in our hearts that your little warrior would get better. I know it must have been daunting, having so many you never knew follow and want to be a part of you healing. But you had so many wonderful people on this planet pulling for your darling family. We are all rejoicing in your news now and so grateful you are seeing this lovely little one doing better. Congratulations on such wonderful news! We will all hope that H word is muttered daily until it's a reality. Much love from a fellow A family.

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  12. Many prayers being said in Chicago (Willow Creek) for Lily and all of you. We are so thankful to hear good news and will continue to pray for a full - amazing - awsome recovery!

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  13. This post has brought tears to my eyes. We've had constant pray for this princess and we serve a God that performs mircales and heals the broken hearted. My friend, we serve a awesome God that watches out for his children. Ask, and you shall receive! We love you, even though we don't know you! We will continue to pray!

    A fellow IM Mom in Canada
    Emily

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  14. I've been waiting for this post! Thank You, Lord for the Healing in Lily's body! It's wonderful to see Her Preciousness, tiny Daughter of The King, sitting up in bed. I'll be praying that her labs keep improving and that soon your family will all be together at Home. Kiss that Sweet Girl for me. ~ Jo

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  15. Praise you sweet jesus...it has been a privilege to lift your entire family up in prayer. I will CONTINUE to do so.....Tampa, Florida

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  16. Oh, she looks so good!! Praying she continues to gain strength and endurance! PTL!!!

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  17. PRAISE GOD! PRAISE GOD! PRAISE GOD!!!!

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  18. I have been praying for Lily every day, hoping that the lack of an update did not mean any more bad news. God is so good! Thank you for updating us with this wonderful news. Thank you Jesus!

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  19. Praise God!!! I've been praying for this sweet little girl and hoping that you would post this great news! She will continue to be in our prayers!

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  20. I had been checking in looking for a new post the last week or so. So glad to hear GOOD NEWS and that GOD is performing HIS miracles on Lily! (I first heard about you via friends on FB.) Hope you all get to go HOME very soon!

    Sue Smith

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  21. Oh praise the Lord!!!! We will keep praying for complete healing and can't wait to see the news that you're all going home! Your faith is so strong! I know that is the Lord! Thank you for sharing Lily with all of us...His mercies have been so evident in her life!

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  22. So glad to hear of Lily's progress. Keeping you all in my prayers.

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  23. As I just learned about you and your children through your father, I must say that all of your children have found their miracle in you and your husband!

    I am so happy to hear of Lil's progress, I will continue to pray for you and your family.

    Karen Corral

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  24. Emily,
    I continue to pray for you, precious Lily and all those taking care of her. Thank you,Jesus, for sparing her and breathing new life into her. May she make sure and steady improvement so that home will be home instead of a hospital bed.
    Sarah Risley

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  25. OMW......what a wonderful post to see. Even better is the picture of your precious jewel looking better than ever. Praise God from whom all blessings flow.

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  26. Praying for continued miracles for sweet lilly. While in the hospital with our foster baby for many weeks I stood on the scripture Psalm 40:1-3 He heard my cry....that all may know and put their trust in HIM". That is the ultimate goal. That it will bring others to trust in God. Keep standing on his word! God bless!

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  27. What awesome news!! Praying for your beautiful daughter. My son Alex was born with a CHD. He had TAPVR and passed at 22 days. I am always so happy to hear stories of the heart babies that make it. I know Lily will make it through this. Many prayers and hugs to you and your beautiful daughter!!
    Lora

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