Monday, April 26, 2010

Surgery still pending...

The operating room is still unavailable at this time due to previously scheduled surgeries in the heart OR's.  So, we're waiting for an open room.

Chrissie is hanging in there.  They've have to adjust some medicines and the ECMO and her ventilator to achieve the oxygen sats that they want, but that's why we have this life saving equipment on her.

We do have one miracle already on this Miracle Monday:  Chrissie's heart is in the correct beating pattern right now.  She's on a special medicine to help obtain this syncrhony (they've tried everything, including shocks and various meds that haven't worked so far), but this morning Dr. Porisch turned down the pacemaker just to test Chrissie's natural heart beat.  And guess what?!?  It was in synchrony!!!  This is a tally for us to add to our miracle list for Miracle Monday.  They set the pacemaker to only shock if Chrissie's heart rate drops below 90, and it's been hanging around 95-97 on its own for the most part, which is just miraculous!

We've had a little more explained to us about what they're going to do during today's open-heart surgery.  They're planning to keep her on the same ECMO machine after surgery, but they're going to change some things up in her chest.  They're going to do some pretty aggressive cleaning of her lungs and they'll clean out her chest.  They're going to remove the cannula that's currently in her right atrium (where the ECMO has been pulling blood out of Chrissie's right atrium and pulling it into the ECMO to be "treated" (oxygenated and a bunch of other stuff).  Currently it's being returned to the aorta after the blood goes through the ECMO machine, so the heart has basically been bypassed right now so that it could fully rest.  Now that the Echo shows that the entire right side of the heart (the right atrium and ventricle) appears to be strong and beating well, they're going to try to remove life support from that side of the heart to see what it's capable of doing on its own.  The right side should pump blood to Chrissie's lungs, and after they get her lungs all cleaned out, hopefully the lungs will be able to receive the blood.  They know they'll need to keep the left side of the heart on the ECMO machine because it's too weak to function on its own at this time.  So, depending upon how things go the OR, they'll either be putting a new cannula into the left ventricle or left atrium (they're not sure what's going to work best right now), and then the ECMO machine will pull that blood into the machine for "treatment" (that the left side of the heart would normally do) and return it to the aorta via the aortic cannula.  They will have to "drill" a hole into whichever part of the left side of the heart they decide to put the cannula into, and then they're going to try to figure out how to run it to the ECMO yet still be able to close up the chest.  (They need to get the chest closed due to high risk of infection after it's been open for a full 8 days now, plus the lungs need the chest closed in order to work properly with inflation.)

So, this is all a HUGE challenge.  Again.  It's going to be up to God and He must direct the hands of the cardiac surgeon as well as the entire team who will be assisting him.  We are petitioning the Lord for a miracle, and I am so deeply touched that so many of you are fasting and praying for our princess.  The Lord is being glorified, and He is pleased with your faithfulness to Him and oh how He is loving spending such wonderful quality time with you as you cry out to Him on behalf of our daughter.

I had the opportunity to read some of the comments to Chrissie today, which was such a blessing.  Stephanie is our friend who lives on our ranch who is taking care of all of our kids and animals and the ranch.  She wrote Chrissie a nice long letter of all of the things Stephanie loves about Chrissie.  I tried to read it to Chrissie, but broke down in tears, so Matt took over and read it to Chrissie.  Chrissie wiggled and raised her eyebrows and totally heard every word that Stephanie wrote to our sweet princess.  Emily, Stephanie's daughter (the pretty blonde in many of the photos with our family), has a sweet relationship with Chrissie.  Emily "babysits" Chrissie for atleast an hour every week day, and Chrissie LOVES "her" Emily.  (Chrissie says, "I want MY Emily.")  It's such a sweet relationship, and Chrissie has been instrumental in healing some broken parts of Emily's heart (emotionally).  Well, Emily also wrote Chrissie a sweet letter, so  I had Emily read her letter on speakerphone to Chrissie. 

Oh.my.word.  I bawled as Emily read her letter to Chrissie as Chrissie cried and cried and cried crocodile tears as she listened to Emily's words of all of the fun things they've done together.  Emily was so strong to read her letter to Chrissie; I was the one who lost it.  Chrissie shook her body with excitement, and she raised her eyebrows throughout the letter reading.  She was trying to open her eyes, but they just filled with tears as I soaked them up with a tissue.  Sweet, sweet, sometimes bittersweet moments, but Chrissie knows who all of us are, and she's comprehending everything we're saying.  Praise the Lord!

Once I saw how Chrissie reacted to Emily's voice, I was able to get all of our kiddos (Chrissie's siblings) on speakerphone to talk to her.  Chrissie reacted with tears and shaking and raising her eyebrows.  She knows her siblings, and oh how Chrissie LOVES them so.  I couldn't hold myself together listening to my kids speak sweet and loving words to their baby sister who lay on the hospital bed in a semi-comatose state.  Hard, hard stuff.

We've informed Chrissie that thousands of people are praying and fasting for her today.  We've let her know that we want her to keep fighting, to keep hanging on, to come back to Forgotten Saw Ranch to run and dance and play and swim and jump and sing.  Chrissie responded with raised eyebrows and lots of body movement as we begged her to keep on fighting.

We also told Chrissie to tell Jesus that she prefers to live at Forgotten Saw Ranch for now, and that she'll live with Jesus later, but if Chrissie decides that she'd like to live with Jesus now that we'll see her in Heaven one day because we will NEVER leave Chrissie.  We will always love her.  And she'll have a family to spend eternity with, whenever God chooses. 

I am so grateful for the gift of Jesus.  I seriously do NOT know how any family could go through this without the hope and saving grace of Jesus.  I am quite a mess today emotionally, I think because I've seen my daughter die twice, and I'm just not ready to see that happen again.  When we brought her into surgery the first time, Monday, April 19, I was able to tell her goodbye without even shedding a tear because I had such a sweet confidence that God had promised me He would heal her heart.

Now I am beginning to understand that yes, God did make me this promise, but Chrissie's heart may be healed in Heaven or on earth.  Either way, she will be healed.  Of course, I'm claiming on healing on earth on this Miracle Monday.  God knows my heart and my desires for my daughter's life.  He hears my cries, my begging, my pleas.  God's will is always perfect, and He is the only one who knows the number of hairs on Princess Chrissie's head and the number of days of her precious, perfect life, which will not be one day shorter than God has always had planned. 

I am just so grateful for faith.

That's what faith can do.

Broken hearts can be made brand new.

Praise Him and to God be all the glory, forever and ever and always.

Grateful for my Abba Daddy who loves my daughter more than me.  The One who gave His Son, willingly, so we could have this direct relationship with Him on this very day.  The One who secured our everlasting life with Chrissie, forever and ever and always, no matter what, because we have accepted His Son's gift of eternal life.

Have you accepted this precious gift?

They're coming in the room now to begin transferring Chrissie.  It's a huge ordeal just to get her and all of her equipment out of this room and into the OR. 

Grateful for the army of prayer warriors.

Love you all...

22 comments:

Petrie said...

Thank you for the update today! Chrissie is definitely hearing you and knows she's being loved on around the world! How precious the memories your whole family is receiving through this ordeal. I have always said to other people regarding their comments about our own adopted daughter's medical (heart) issues "Please don't say you're sorry about our circumstances, because we'd never want to go through life without the blessings these circumstances have brought us. We are not sorry about them at all!" I know you, too, will be thankful for the blessings and insight that arise from these darker days.

B. McKenzie said...

silly question - by why do they keep the tape on her eyes? do you think she would open them when she hears your voice or your other childrens'? She seems to respond so well with tears. Oh my heart just breaks for her and for you. here in St louis I am praying. Oh God please bind up and heal your child...let her live on earth awhile.

Qadoshyah said...

Wow, she is certainly hearing you all. That must be so incredibly difficult to watch . . . your daughter not able to do anything, but cognitively aware of who is talking to her and with her there.

Anonymous said...

Fasting and praying from my school and home here in California. I just ask that the Lord would cradle Christyn's heart in his hands, breathing his healing grace into it. May the Lord be glorified in this.

-Robin-

Anonymous said...

Praying for Chrissie.

Sarah Carel said...

I just had to comment...as I was reading your last post a song came on from the video I was watching...it's a southern gospel song called "There's A Promise Comin Down That Dusty Road"...here are just a few of the words of that wonderful song :
"Then He laid his hands upon this child He looked death in the eyes
He said all power in heaven and earth given unto Me
And with the voice sounded like thunder
He hurled death asunder and then He said little girl rise and be healed"
The timing to me reminded me again of the amazing power of our God and I just had to share it...
Even though I've never met you all I love your family dearly and most definitely little Miss Chrissy!!! Praying hard for you all today especially...
Love in Christ,
Sarah Carel
Columbia, SC

kym said...

Here we are in North Carolina, praying for Chrissie and your sweet family. Your words are healing to so many. I am blessed to be a small part of this Miracle Monday! Chrissie, God loves you so very much!

Melissa G said...

Praising God for an "in sync" heartbeat!!!! Please Lord, strengthen Chrissie's body as she goes into surgery....

Melissa G

Jackie Truitt said...

I am praying for Chrissie and your family! When I read all of these details, I can't help but fear for precious little Chrissie's life, but I know that her life is in GOD'S hands - and she is safe there! He is the Great Restorer and the Great Healer, and he can heal Chrissie beyond anything the doctors could ever explain, if that is part of the perfect plan. Everyone at HHBC is praying fervently for you all, and I am honored to do so as well.

Connie said...

Still praying! I am so grateful that you are holding on in faith, but recognize that God may not do what we want Him to do--He's not a "tame lion" that we can train to do tricks, and I so appreciate that I hear it in your writing that you KNOW he can heal her, He is faithful, He keeps His promises. He loves you, loves Chrissie, and He wants the BEST for her. We can trust Him WITH OUR LIVES!! Bless you, my sister in the Lord. I wish I could hug you or help in a tangible way, but I will pray. God loves that baby girl!

Sweeney Family said...

We will be praying continually while she is in surgery and afterwards. I echo what Petrie said, as a cardiac Mommy and fellow adoptive Mommy-- these times are gifts, even when they're so very tough to go through. God loves you all and Chrissie so much. Praise HIM for all of the faithful believers HE has sent your way.

Sweeney Family said...

We will be praying continually while she is in surgery and afterwards. I echo what Petrie said, as a cardiac Mommy and fellow adoptive Mommy-- these times are gifts, even when they're so very tough to go through. God loves you all and Chrissie so much. Praise HIM for all of the faithful believers HE has sent your way.

Anonymous said...

From Alaska to Florida, New York to California...Chrissie is being lifted up in prayer. Keep us posted!
God Bless,
Laurie
Wimberley, TX

Grace said...

Praying lots for your daughter, the rest of you and the doctors involved.

Also, Jiliang's mom Jill wants me to pass on this message: "Can you pass it on that I am praying fervently for her little girl and their family and I understand their fear as I am at the hospital now with Jiliang - my heart baby. I am a praying for a Miracle for them for Chrissie and I will be praying all day." Jill's blog is www.thekoeppefamily.blogspot.com

Jill tried to post this directly to you, but kept getting error messages.

Sincerely and with many prayers,
Grace

Carissa said...

I just heard a song on K-LOVE and it made me think of Chrissie. It's Jeremy Camp's newest, called "Healing Hand of God". Here are the lyrics to the chorus:

I have seen,
The healing hand of God,
Reaching out and mending broken hearts.
Taste and see the fullness of His peace,
And hold on to what's being held out.
The healing hand of God.

I hope you heard and were blessed b this song as much as I was! If not, here is a link to the actual song:

http://www.youtube.com/watch?v=2fCHSgCuh6M&annotation_id=annotation_681187&feature=iv

Lori said...

Lorraine, I can't imagine all that you all are going through but please know that your Chrissie--and your entire family remain in my prayers--that you are indeed, COVERED by prayer! It is hard to hear (even for me who doesn't know you all personally!) that sweet Chrissie has to go into surgery yet again--I wish that didn't have to happen but yet I KNOW God has His hand over this and that He is guiding her surgical team towards a victorious outcome! Among my prayers for Chrissie is that she feels no fear! That God is comforting her and that she KNOWS that whatever happens, she is going to be just fine with a heart that beats as it was meant to! Chrissie, keep fighting little darling. I imagine it must be tiring and so that is why I'm glad you had a chance to rest your heart and let the machinery do it's work. But now, sweet princess, God willing, you WILL be healed here on earth and go home to your loving family!

Christine said...

Thank you for sharing this miracle with us. Precious Chrissie-- she is in my thoughts.

Holly said...

Praising Him for all the answered prayers and for the way He is working and moving in the hearts of thousands hourly, daily...while we press into the throne room for your little princess.
His ways are a mystery!!
Blessings of peace that surpasses all understanding,
Holly from Purpose Driven Family

Jill said...

Lorraine,
I cry as I read your post! God is so good and you are right...HE and HE ONLY knows the outcome of all this...in the end Chrissie will have healing. I pray the surgery today will be a success and they will accomplish everything they set out to do. God will guide the hands of the people in that OR!!

I, for one, am praying that she may remain with her family here on earth for awhile longer!
PRAYING! FOR ALL OF YOU!
Jill in Ohio

Kathleen said...

Oh how my heart aches for you and rejoices with you in this roller coaster of life and love! It is such a testimony to watch you all walk through this with so much grace and submission to accept God's will - it does my heart good to know that - no matter what - Jesus is sovereign and His will is *always* better. Know that I am praying here in Wimberley and am eagerly looking forward to a day when our paths cross and I can say "It's Chrissie! I prayed for you!!"
A sister in Christ

Anonymous said...

I'm praying for Chrissie. As I've read your posts, I thought of something. Perhaps one of the ways that God intends to use this for good is through the techniques and procedures the surgeons are using post-op on Chrissie. Wouldn't it be wonderful if Chrissie's case leads to better understanding and new treatment plans that save the lives of other children who have complex cases and delays in getting surgery?

Darryl said...

I am praying as I type this. I don't know at what stage of the process Chrissie in in at this time but God knows. Angela and Caleb are home and I will enlist them as soon as I finish this. And Becky up at Dallas Baptist.

Darryl

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