"She is amazing!"

This is what I heard first thing as Gracie's cardiologist entered the room yesterday.  He started our conversation by telling me that Gracie has defied all odds once again.  This is one of the doctors who has been against this operation for Gracie--he really did not believe she would make it off the operating table--she just had too many strikes against her.  To see his reaction once again yesterday reinforces the magnificence that we have witnessed once again these past two weeks.  SHE SHOULD STILL BE IN THE HOSPITAL!!  And yet...she has been cleared for everything--she can go back to school, she can take baths, she can run and jump and play, she can, she can, she CAN!!

"This is the fastest, most complete recovery I have ever witnessed in this particular operation."  Not only is Gracie feeling terrific, her incisions are healed, her numbers are great, her Xray is perfect.  All glory to God!!  He has been ever present in guiding healers in the OR, in her hospital room, even at home.  AWESOME!!  As we sang the song, AMAZED, in church on Sunday, I had goosebumps, could hardly control my emotions.  You see, leaving that OR two weeks ago, knowing that the living God was in there with my girl, gave me the peace that passes all understanding that we read about in Phillipians.  The Friday prior to surgery, in my Bible study group, we had talked of God's presence everywhere.  He's right here right now!!  He was also right there as Gracie's heart was lifted out of her chest, while men and women were working on each detail just two weeks ago.  I could picture this as I left that room.  I could literally feel His Presence, pushing me out the door, letting me know He had this situation, He had my girl in His mighty hand.  I always know He is here, but that particular day, He gave me this reassurance in my heart that I could feel. 

AMAZED!  You dance over me while I am unaware.  You sing all around, but I never hear a sound.  Lord, I'm amazed by you.  Lord, I'm amazed by you.  Lord, I'm amazed by you.  How you love me.  This is the lullaby I sing to Gracie, has always been!!

The appointment yesterday was such a blessing.  Gracie was giving hugs to her cardiologist as tears filled his eyes.  We heard of Gracie's future--a bright one, indeed.  With every appointment, we hear of Gracie's short life.  This was the first time that didn't happen.  We are now talking of when she's an adult, we are talking of what can be done next, the possibility that Gracie will not need another surgery as a child!!  What??!!!??!!  Talking of issues that may arise when she's in her 30s--seriously??  We have had such a guarded heart with her life.  NOT ONCE has anyone mentioned adulthood for her.  We've always been given a limit, always learned to live in the here and now.  We never dreamed of her graduating from high school, going to the prom, having a job.  First, she was to live a month, then a year, then four years, then seven.  You can imagine how excited we are now to know that she has hope for a longer life.  Of course, none of us know how many days we have, but to be told over and over how many days she won't have has been so difficult.  We can live like she is living--that is sweet. 

Once again, we have witnessed the power of prayer.  In church our pastor has been teaching on that very subject.  God delights in the prayers of His people--it's like a fragrant offering to Him and He moves.  Would Gracie's outcome have been different without so many of us crying out to Him?  We will never know the answer to that, but we do know this.  Gracie was given some grim statistics and she's alive and well.  Her recovery has been amazing, she doesn't remember the worst day of pain, people have witnessed a miracle.  I believe in the power of prayer and I'm most thankful to be serving God, the One who hears, the One who answers, the One who desires good things for His people.  Sometimes we don't get the answers we want--I've also walked that road.  He's still good.  He still has a plan.  When leaving Gracie in the OR two weeks ago, I realized His plan could be to take her home to Himself--as difficult, as completely heart-wrenching as those thoughts were, I realized I would still love God.   She cried out, under that mask, "Mommy, help me."  I answered her, "God is here, Gracie.  He's helping you."  I knew without a doubt that she would wake up.  Hoping with everything in me that it would be my face she would be seeing, but knowing that if it wasn't mine, it would be HIS. 

I love you for loving my family!!

Gayle

Home, Sweet HOME!!

Unbelievable isn't it??  Yet, with God, with Gracie's life--completely believable!!  What a work He has done once again in her sweet body.  Don't get me wrong--I completely give credit to her terrific surgeon and medical staff---they have worked so hard, they have poured in so much...all into this little girl's life, into her heart.  God has gifted everyone with something--I'm so grateful for the physicians, for the researchers, for the caregivers--such a team of people who have been given such great purpose.  As Gracie's surgeon entered her room yesterday, without even giving it a thought, my arms were hugging this man tightly--I am so indebted to this individual.  Not once, not twice, but several times he has had his hands on my little girls very broken heart and God has used those hands to insert tiny devices, to move miniscule arteries--it completely blows my mind when I think of what that must be like.  I thank God for this man and so many others.

It has been busy!!  Life has been crazy!  If I was a betting girl, I would so have placed my bet on spending at least 3 weeks in the hospital--in a million years, I wouldn't have dreamed of bringing Gracie home in just one week.  Going into this surgery, we knew the risks, we knew the potential disasters that could arise, we knew the chances of complications were quite high.  SHE BREEZED THROUGH IT!!  Right now, if you walked into my home, you would likely hear something like this.  "Gracie, stop running, you might fall down.  Gracie, maybe you should eat a little slower so you don't throw up.  Gracie, stop running.  Gracie, slow down.  Gracie, try to rest a bit."  This girl is fixed!!  She is playing hard, she is talking non-stop with lots of great ideas, she is eating lots.  You would never guess that one week ago she had an extremely high risk open heart surgery.  AMAZING, completely amazing.

Yesterday, we visited with several of the cardiologists who know her history, several who were not in favor of this surgery.  All were in agreement that she looks terrific.  They are continuing to watch several of the things that could still be issues in her future.  She does have some fluid on the right side of her heart--we will have her checked out at Mayo until this is gone.  Her pulmonary artery to the right lung is still very, very small.  Her right side would be comparable to our left sides, meaning it is the lung that is larger.  This could still be a potential problem, but I have to say, I'm really not one bit worried.  I still believe that God knows her days--He knows her heart and He continues to prove Himself so faithful!!  I also had the opportunity to visit with the transplant coordinator.  From day one, Gracie has not been eligible to make any sort of transplant list because her chances of survival were small.  That also has changed with this operation.  She may qualify for a transplant after all--we are hoping this will be a long time from now, but are grateful to have this hope for a future.  This all just shows us that we know nothing here on this earth.  It is God who gives life, sustains life, and takes life away here on this earth.  Through knowing Him, claiming Him, we are given a life everlasting--that is it. 

In Gracie's mind, fixing her heart meant getting rid of her many scars.  She was very sad when the tape and bandages came off yesterday and her chest not only had her scars from before, but a bunch of new ones.  She cried and cried.  Heartbreaking.  She came home and our kids were telling her how cool her chest looked.  Curtis and Connor even had her take a red Sharpie and draw scars on their chests last night--it all seems better today.  She knows she is beautiful. 

I do have a sweet little story to share.  A couple of weeks ago at Bullfrogs and Butterflies (Gracie's church program), they learned the verse, CREATE IN ME A CLEAN HEART, OH GOD.  Yesterday, Gracie told me she was going to make me a picture of her clean heart.  She said it over and over again.  Instead of a fixed heart, she had a clean heart.  She believes that is what happened with this operation.  She got a clean heart.  It's actually quite profound when you think about it.  We go through so much to have a clean heart, to get rid of all our junk--we try to cover it up, we try to put ourselves down, dwelling on what we have done.  I think of Gracie and her chest being opened, the coughing, the endless coughing, trying to walk again, the struggle, the pain.  We don't have to go through all of that to have a clean heart.  God just cleans it up--Jesus went through the blood, the suffering, the trying to walk again, the pain, being opened up on the cross--He took it all for us--He gave everything for us to have a clean heart.  What we do is rather simple--just ask.  That's it.   Gracie may not understand it all, but she certainly has been teaching me through her sweet life.  She has been poked and prodded, bled, suffered.  Yet, she is now being given life.  What a picture!!

If this makes no sense, I'm still really tired--it's just sleep--no big deal.  I just want to share my heart a bit.  Life is good, oh...so good!!

Love,

Gayle

The days just keep getting better!!

Gracie had yet another amazing...and productive day!!  She woke up a little crabby, then Derek and Selah came in the door and she had a complete reversal of attitude--she was excited!  She has eaten really well today--I would say she ate a normal day's worth of food.  She went for lots of walks to the playroom and played.  At first, she just painted a bit, the next time was into the toys, then her cousins came for a visit!!  That was so much fun!  They completely decked out Gracie's hospital room--I'm so bummed I didn't take any pictures while they were here--they are four amazing girls, riding 8 hours in the car to spend a little time with the Princess. 

This afternoon she had her arterial line and all access removed because they don't want to chance an infection.  At first the plan was to just place another IV, but doctors don't think it's necessary!!  They aren't even checking her blood anymore because the numbers have been so great.  She is seriously on the mend!!  Then a couple of hours later they removed another chest tube, so she is down to one and it should come out right away in the morning.  There is talk of discharge.  I won't get my hopes up yet, because we know things can still happen, but really Gracie is flying through this surgery and will probably recuperate better at home. 

Tonight we are having a slumber party!!  I'm snuggling in with her in a tiny hospital bed.  She's already told me I'm hogging the bed--I am only 100 pounds heavier and it's a single bed!!  My goodness, girl!  I do think we are going to have our hands full for awhile at home.  It's good to see her personality coming back, it's just the demanding part that is coming back first :).  We are getting lots of hugs and kisses once again, but she is still pretty subdued and quiet.  Grandma is coming in the morning, so that should perk her up a bit!!

We have had some sweet stories around here.  I have some sweet friends, that is for sure!  One of them has been sending me cards every day.  EVERY DAY.  It's crazy how the experiences of the day are fitting the card.  For example, she sent me one that said she was praying Gracie's stay in the hospital would be a blessing to other people, that God would place people in our paths who need Jesus.  That very day God gave us a huge encounter with another family that would bless both of us, a new friendship, the hope of Gracie's life would give another woman hope for her child's life.  Beautiful.  Then a couple of other friends packed this huge bag of treats for Gracie and me.  I thought I'd be here forever, so I was so slow to open this bag--I was saving just a little treat for every day--now I can indulge!!  These friends also included scriptures, sweet quotations, little reads because they understand I don't have the time or focus for anything that would require thought right now.  The quotes/scriptures for each day are perfect for what we are going through.  They had no idea.  It's all God!!  A long time ago, I went through a Bible Study that talked of these God Incidents as "kisses from the King".  I have had so many kisses this past week--feeling extremely blessed.

Thank you so much for all of the emails, comments, and facebook messages--so, so encouraging.  I'm not sure why, but going through the stress of last Tuesday, encountering such risk--having SO MANY PEOPLE PRAYING completely gave this family all of the confidence and comfort we needed.  The friends we have made along the way and those of you who just heard about Gracie from another friend, yet take the time to lift her to the throne of Grace--you are a sister and brother in this great big family of God!  Thank you for following after scripture in carrying another's burdens.  As completely stressed as we were going into last week, we have felt an even greater peace as Gracie was held not in the arms of the dad or mom who adore her and take care of her, but held in the arms of the Father who created her, who gave her life, and thankfully moved the hands of the men and women in the operating room, breathing breath into her lungs.  Praise Him!!

Psalm 103:1-4  Praise the LORD, my soul; all my inmost being, praise his holy name.  Praise the LORD, my soul; and forget not all his benefits--who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle's.

 Love to you!!  Gayle and the rest of the Opps

Comets Win!!

Charles City took several students to the State Cross Country meet today and came away with the first place trophy for 8th grade girls and 8th grade boys!!  AWESOME JOB, COMETS and AWESOME JOB, BREUKLYN for bringing home the 6th place medal!!  WOOOHOOO!!

On the floor and a TERRIFIC SURPRISE!!

Gracie is officially out of the ICU and all moved into the step-down unit, our last stop before...dare I say it...HOME!!  We will likely be staying here a few days--does anyone else think this is amazing and fast???  Her Xray looks much better, she's pooped, and completely off of oxygen.  UNBELIEVABLE!!  Yet, with God completely BELIEVABLE!  We are so thrilled with her progress.

She continues to be somewhat depressed--that is, until Derek walked in the room tonight.  She yelled, "DEREK!!" and was smiling from ear to ear.  She was pretty excited to see me back, until he arrived--he completely took over!  She is now in his arms and will likely stay there most of the night.  Derek, Selah, Gracie, and I are having a little movie party while Curtis is out taking a much needed break. 

 I just really want to show you how much her color has changed from a couple of weeks ago.  It's amazing!

The color change is awesome!!  And it keeps getting better. 

On the mend...

I'm sorry I missed a day!!  Gracie has been so agitated and/or depressed that I haven't had a minute to even turn my computer on.  She is so, so sad...sort of shutting down.  I know this is all part of it, but so, so difficult to watch.  She still has a pretty deep cough and some tummy issues, but we are definitely on the mend.  Her lung Xray has finally shown a little bit of an improvement the past 24 hours, which is really great news.  I would say that is our only real issue.  Her lungs need to clear up before we can move out of ICU.  She is coughing really strong now though, which is awesome--she's starting to move some junk out!!  And her belly--so expected.  She's been on a ton of medicine throughout the surgery and the 24 hours following--it sort of stops things up.  Her belly Xray this morning showed no blockage, so it will just take a little time.  We have time!!

From a medical standpoint, Gracie's fontan is very successful.  Her numbers are AMAZING!!  Oxygen saturations are around 90 with blowby O2--most of the time, that is stuck in my armpit, so it's doing nothing.  She is usually around 75%, so this is wonderful and is giving her the sweetest, PINKEST, most kissable little lips and her fingernails--I can't stop staring--what a gift!!  She will be just fine!! 

I did run home last night so I can watch Breuklyn run in the State XC meet this afternoon.  I slept in my own bed and it was glorious!!  Curtis is camping out in MB5B18 today--Selah and I will join him when the meet is over and Derek will meet us there as well.  Connor has such a bad cough and wants to be there more than anything, but it's just too risky to expose to Gracie at this point.  She needs some healthy lungs!!

I will try to update tonight with pictures--I'm home without my memory card, so I can't right now, but the comparison of her lips is unbelievable--she's so pink!!

Enjoy your day!  I am on my way to cheer on Breuklyn and her fellow Comets!!

Gayle

A STEP in the right direction!!

Gracie is having a much better day.  Her cough is strong and productive--painful, but under control.  She is sitting in a chair, has went on a little walk, and has had some jello and juice.

Her lungs are clearer--they still have a ways to go, but it looks like we are on the right track!!  Woohoo!!

Her surgeon is completely pleased with how things are going--I am told the worst is behind us.  That sounds good. 

Check out the very pink fingertips--we haven't seen pink fingertips EVER on her little hands!

Gracie has been very agitated--and rightly so.  She is saying "no" to everything.  A few minutes ago, she looked me right in the eyes and said, "I love you."  Precious, precious!!

Enjoy the rest of your day!
Gayle

a little update

It's pretty tough to find time for the computer right now, but sweet little Gracie is sound asleep and it is quiet for right now.  She had a ROUGH DAY yesterday!!  They completely took her off all pain medications from noon-8:00 so she would fight a bit.  She was miserable--her lungs are really junky and they had to make her cough and cough and cough--not an easy task 24 hours after open-heart-surgery.  I can hardly take the suffering she is going through. 

Then about 9:00 last night her lungs looked really, really bad.  They even talked of placing her back on the ventilator.  They tried C-Pap first, which noone really thought she would keep on.  It was a large mask that tightly fit around her mouth and nose and it filled her lungs for her for awhile--she had it on an hour and a half!!  It was a bit of a fight getting it on, but she fell asleep and allowed it to do its job.  This went on until around midnight--she was a trooper!  I did send out a text to just a couple of friends to pray for her.  If she goes back on the ventilator, we start the recovery process over.  The past 36 hours have been really, really rough--I can't imagine a replay! 

Today, her voice is back, she's coughing stronger, she's telling the docs and nurses "no".  Last night she really wanted a drink--since the ventilator was a possibility they weren't giving her anything.  In a sweet, quiet, raspy voice she told her nurse, "apple juice now".  She got apple juice.  We aren't the only ones who have a difficult time saying "no" to this princess!!

As long as she stays off of the ventilator, we will be moving forward today--they are talking of having her walk. 

I don't have words to express our gratitude for the prayers, encouragement, and support we have received.  We are overwhelmed!! 

Psalm 147:3 (I think)  He heals the broken hearted, binding their wounds.

I'll post when I can!!

Love,
Gayle

rough day for Gracie...

Gracie is miserable, I'm not going to lie to you.  She has a LOT of pain, is coughing, uncomfortable, ticked off.  As a mom, this day is rough!  On the other hand, she is doing so well!  She was extubated at 10:00 this morning and is already sitting in a really big chair.  There are no major issues to deal with other than getting the gunk out of her lungs (I'm certain that is the technical terms you are looking for!). 

They don't have her very much sedated or on many pain medications--they are wanting her awake and coughing.  It's so hard to watch, so difficult to see her suffer--I cannot imagine what it feels like.  I have NEVER had anything even close happen to me and she's only four years old.  We all feel so helpless.  We are starting to hear her sweet voice, but she's asking for things that we cannot produce for her.  She hasn't been told "no" much in her life, unfortunately!!

The difference this time with this recovery is that this time we have hope for a longer life!!  And that makes this all quite bearable.  We know that next week she will feel a lot better than today and in a month, this will be a memory.  She will be able to run and jump and play.  I love the verses in Isaiah 40 that say, "But those who hope in the LORD will renew their strength.  They will soar on wings like eagles; they will run and not grow weary.  They will walk and not grow faint."

Through these past few days, we have witnessed so many friends and so many family members hoping in the LORD on behalf of Gracie.  Praise Him for His faithfulness who hears His people and loves those who call him their own.  We will walk through this journey, knowing He is carrying our sweet little girl and is completely preparing the way for her!  How comforting to know He is the One who has control and He is LOVE.  Wow!!

Curtis is probably ready for me to return to her room--I better run!  Thank you, thank you, thank you!!

Gayle

A Brief Recap

Wow, what a day!!   First of all, I am completely overwhelmed and grateful for the outpouring of love shown to our family these past two days.  I had a few minutes to check facebook when Gracie was first in surgery and many, many of my friends had Gracie's or Buzz Lightyear's photos as their profile pictures.  I'm still reading through the many messages and comments and am hoping there is a way I can print them all off--if someone is near a printer, I would love it if you could do that!!  I'm afraid if I wait until I go home, I won't have access to everything.  My heart is so full!!  I live in such an awesome community, I grew up in an awesome community, went to college with amazing people...what a terrific life to know all of you!!  I am blessed beyond measure.

This morning, leaving Gracie in the OR was one of the most difficult things I have ever done.  I knew she was going into something that carried some great risk.  She trusts me so much, looked at me with those big black eyes, and said, "help me, Mommy."  OH MY GOODNESS.  I couldn't--not at all.  I can't even tell you how many people were in that OR, but there were many, each with a very specific job to make sure Gracie had the best possible outcome today.  Although that comforted me greatly, I just couldn't leave.  After a few, "THanks for your help, Mom.",  "She's in good hands, Mom.", "Gracie's asleep, Mom", I finally got the hint that they really did not need my service anymore.  It's at that time that I was forced to surrender any bit of control over this situation and completely entrust my daughter to all of these professionals--that I did.  More importantly, I prayed.  "God, please be everything for her, be all she needs."

Throughout the morning and into the early afternoon, we received updates about how Gracie was doing--nothing out of the ordinary.  It was hard to get access to her vascular system, so it took quite some time to get her lines and IVs in, they opened her chest, they put her on bypass, her surgeon did his thing.  Around 1:30 Curtis called and said Gracie's surgeon wanted to talk to us.  That is when I freaked out.  Completely.  You see, we were planning on surgery taking all day, perhaps into the evening.  When he wanted to talk, I was certain it was not going to be good.  We went into the little room, waited a few minutes, and in he walked with an easiness about him.  This was going to be OK.  The operation was done...DONE!!  They were closing her chest and everything seemed to be working.  AWESOME!

We were able to be with her by 3:00 and she really looks great.  Of course, there are a few issues--one of her lungs has collapsed, she was running a temp--it appears to be going down, there are

some issues with her pressures.  Nothing major right now, but all a bit concerning.  Gracie is in the best place now--the most fabulous nurses are caring for her.  I actually went to the hotel tonight to try and sleep.  I think I better leave my computer! 

Sweet dreams to all of you as our little princess is having some sweet dreams of her own!

Love,

Gayle

Doing well!

This is my third time trying to update and now I'm running out of battery.  I just want you all to know Gracie is doing well.  She will be extubated tomorrow sometime.  Her chest is closed, her blood pressure is stable, fontan pressure is where they want it--all good news.  The only issue is she keeps waking up!  The little miss doesn't want to miss anything and the mom really doesn't want her to feel any pain. 

Sweet, sweet girl--AWESOME, AWESOME GOD!!

I'll fill you in our day when I return to the hotel for a bit!

Gayle

On bypass

At 9:30, they opened up Gracie's chest and at 10:30 they put her on bypass.  Everything is going fine--we are sitting with our pastors talking and every once in awhile one of Gracie's nurses comes in and gives me a big hug and we catch up.  It's awesome to be reminded that we are exactly in the right place with people who genuinely love our little girl.  We keep talking of where Gracie has come from, what she has been through.  Again, we stand in amazement at all God has brought her through!!

More later...

In Surgery

Gracie went into surgery around 7:30--she did so well until they placed the mask on her face.  Actually, we both did so well until they put the mask on her face :).  She fought breathing and was so scared.  Completely broke this mama's heart.  So, so hard to leave that room, but noone seemed to need my help in there.

Thank you so much for praying for Gracie--God hears, He knows our hearts, and holds our tears in a bottle. 

A nurse will be updating us every 2 hours throughout the day.  We have no idea how long this will take--noone is even giving us an estimate at this point.  I know it's a highly involved procedure and several unknowns.  Gracie's surgeon told Derek and me yesterday that it will be easier for him because something had grown 1/2 cm...just shows us how every cm counts. 

Thanks for praying!!

Gayle

The Roller Coaster Continues...

What a day we have had!!  Derek, Gracie, and I are now settled into our hotel room--they are playing pla-dough, making some fabulous cakes--I am just wanting to catch you all up on what is going on.  If you are my facebook friend, you are probably confused!  Gracie has a little cough.  With her, nothing is ever just a little anything, however!  On Saturday morning, she woke up coughing.  I brought her right to the doctor because of the surgery coming up tomorrow.  She was put on an antibiotic and the nebulizer for a couple of days--feeling fine, just coughing.  Well, today the cough continues--it's much, much better, but still a cough.  Because of the surgery she is having, she needs healthy lungs--her cardiologist thought it might be better to just reschedule and have the surgery at a later date.  I let you all know!  We were bummed because it has been quite stressful getting ready for this surgery, but realized that must be what is best.  We cancelled our hotel rooms, called my mom to stay put for awhile, and just went with it.  Gracie's surgeon then had his PA call and told us to come right in.  We had to haul Gracie out of Toys R Us, which didn't necessarily go well, but we were off to St. Mary's.  After looking at her, he decided we should go ahead with the surgery.  Her lungs sound clear, she has no drainage of any kind, she is playing well and feeling terrific, just has a little cough.  So we are on for tomorrow! 

It has been quite a week!  We have been so stressed out about this surgery.  I'm going to be a little transparent here, but this past week I have had so many morbid thoughts, vivid dreams that scared my socks off, so many doubts creeping into my heart and mind--it's been tough.  I feel so responsible for this surgery.  There...I said it.  I have pushed and pushed to have this done.  The plan was for a much less risky surgery, but one that would only give her a little time, no fix.  This one is higher risk, yet for a fuller, perhaps longer life.  It's a tough call when it comes down to it--I was all ready for the higher risk surgery until the past few days--now we are staring it down, it's in our face...it's go time. 

But then something went on in my heart yesterday...perhaps it's because of the many people praying for our family, but I realized once again that I'm not pushing for anything, just wanting what is best for my little girl.  Again, the promises of Psalm 139 that God has all of Gracie's days written in His book--nothing we do is going to change that, no decision we make can trump His plan.  He has this all figured out--we prayed and we went where we felt we were being led to go--that's it.  I am so grateful for God's love for Gracie--my sweet friend reminded me yesterday that He loves her more than I do--I can't fathom that because my love for Gracie is complete and bursting.  But God...He loves even better, even more.  I hold onto that today.  For the past week, we have been holding her tighter, holding her longer, watching every move, just taking her in.  Shouldn't we be doing that all the time anyways?  Shouldn't that be how we love others?  Focus off of me and onto another.  It's all perspective, isn't it?

Well, this has been a lot of rambling.  Soon the rest of our crew will be joining us, along with my mom and her pumpking bread!  We are planning a huge pool party in the smallest pool I have ever seen!  Pizza and chicken wings are the food of choice by the patient--it's going to be a great night. 

I will try to update throughout the day as we hear from the surgeon.  He is still unsure of what this will all look like.  She will be on bypass for quite some time and they will stop her heart for a bit--always unnerving.  He really has no idea how long it will take--but has given her the entire day. 

Thank you so much for praying for Gracie.  There is no greater gift you could give our family!  We love you!

Gayle

GRACIE

Because of some new friends and friends of our family I'm going to give you a brief glimpse into Gracie's life and how she joined our family.

Back in 2006 we had our paperwork logged into China to adopt a healthy infant.  Every few months a list of children with special needs was sent by email to those in the China program.  At first we were convinced a healthy child would fit better into our family--little did we know that God had a very different plan for our family!  After a couple of months of waiting, we decided to take a peek at that list and fell in love with a few faces.  Knowing we have private pay insurance, we determined we couldn't adopt a child with a health issue that would require a lot of hospital stays and surgeries, so we looked at children with facial deformities and missing limbs.  We were convince a little girl was indeed ours so we put our name in for her.  She wasn't.  And we were crushed!  But then...

Bethany Christian Services had us on their radar that we would consider a child with special needs.  In October of 2006 I received an email that talked of a woman in St. Louis who was going to give birth to a baby girl with Heterotaxy Syndrome, a rare defect that places the bodies organs on opposite sides of the body, mainly affecting the heart.  She would require 3 surgeries and lead a mostly normal life.  Chills went through my body as I knew this was going to be our daughter.  You see, I am a birthmom who released my child for adoption--that was the one issue I had with international adoption--I would never get to share my experience with my child's birthmom.  I understand what she is going through, wanting to give her child the best life possible.  Our family spent Thanksgiving of 2006 with our daughter's birthmom, beginning this adventure, falling in love with a child yet to take her first breath.

December 17, 2006, our lives completely flipped upside down.  We became parents to our fourth child, a sweet, precious 5 pound bundle of joy who had a very, very sick heart.  Gracie was born not breathing, immediately she was intubated.  We drove our separate cars to St. Louis, hoping we would arrive to a live child.  We did!!  Early that afternoon we laid our eyes on the most beautiful sight--a perfect tiny baby with a headful of black hair, covered in tubes and wires, beeps and alarms filling the room, a beautiful mom in the corner waiting.  Sweet, sweet Gracie Yan.

I became settled in St. Louis, waiting for the day that we could bring Gracie home.  Those days turned into weeks, which turned into months.  When Gracie was three months old, after several heart surgeries, a belly surgery, and a host of procedures, she was stable enough to take her first jet ride to the Mayo Clinic.  Once at Mayo we received the devastating news once again that she was a very, very sick little girl.  Already she had endured several surgeries (4 heart and 1 belly), she had been resuscitated several times, her heart anatomy was so inadequate.  They would need to operate again and SOON.  We were able to take her home for 10 days to love on her, give her body a much needed break from medicines and operations.  Looking back, when we talk to doctors and specialists, we realize that in itself was a miracle.  She had been on the ventilator for 3 months, yet here she was breathing on her own with oxygen saturations of 70 and drinking from a bottle, very little but she was sucking and swallowing on her own.  Already, we had nicknamed her AMAZING GRACIE!

Frightened completely, we brought her back to St. Mary's Hospital of the Mayo Clinic, with all odds stacked up against her to open her heart for an extremely high risk operation.  It was awful.  After 16 hours we finally met with the surgeon, who deemed the surgery unsuccessful.  He opened some arteries, but he couldn't fix her AV valve.  She was hooked up to ECMO--complete life support.  While in St. Louis, I met several other families who had children hooked up to ECMO--none of them survived.  So, you can imagine my fear when my sweet little girl, chest wide open, swollen so badly her intestines had to be opened up and let out of her body, was lying there on ECMO.  It was doubtful she would live through the night.

But God...

Gracie's surgeon told us he wanted to give her heart a week to rest.  The following week, Gracie went back to the ER to see if the valve was working.  She was in surgery several hours as he tried to repair her heart--on and off bypass, too much time had passed.  I called Curtis after hearing the doctor was ready to meet--had a horrible feeling about what I was about to hear.  And rightly so.  Gracie's surgeon said the surgery was unsuccessful and there was nothing more he could do.  We made the decision no parents should ever have to make--no not resuscitate.  ECMO would be taken off in two days, giving our children time to say "good-bye for now" and give our family some closure. 

March 16, 2007--the day determined to be Gracie's last day on earth.  After a night of weeping and praying, we went to the hospital.  Curtis and I had prayed for lots of things--comfort, for our children's sadness, for Gracie to feel no pain.  Our kids had prayed for one thing--a miracle.  Doctors unhooked ECMO, kids said "good-bye", Curtis and I were left in the room with Gracie and a huge cardiac team.  I was getting impatient, wanting to hold my baby one last time.  Finally, I asked.  Gracie's compassionate, kind surgeon said, "Her heart is beating on its own.  You won't be holding Gracie today."  as tears filled his eyes.  Just two days earlier, he told us "The only way your baby will live is if God performs a miracle."  A miracle is what we witnessed, right there in Rochester, MN!! 

After one month, we were able to bring Gracie home and actually since then, she has had only one more heart surgery, bringing her grand total to 8, not including several heart catheters.  She has only spent 20 nights or so in the hospital since April 9 of 2007, which is amazing.  She has done extremely well until the past six months or so.

Gracie has always been living with very low oxygen saturations, giving her a bluish color and tiring her out quite quickly.  She doesn't have a lot of stamina.  We have always know she would need another surgery--she actually has went a lot longer without it than anyone thought she would.  On Tuesday, she will be having a Fenestrated Fontan placed to reroute some bloodflow.  This surgery has been very controversial for her and is very high-risk for her anatomy.  It is not a good fit for her heart and we know that.  There just isn't a good fit for her heart, yet she needs something done.  Again, God is going to have to show up and do His thing in her heart.  We go into this surgery with some grim statistics for her and some gloomy outcomes, yet God...WE KNOW ALL THINGS ARE POSSIBLE!!  We have seen Him work, we have witnessed His miracles and we know that He has Gracie's days already written.  He promises us that in Psalm 139.  Man thought her last day would be in February of 2007, then February again of 2007, then March 16, 2007.  Well, she's still here and she's still amazing!!

Although we know all of this, our hearts are burdened.  He may take her home.  I can't imagine the thought, but my mind goes there often.  She lights up our lives.  She's completely wonderful--perfectly designed by Him for such a purpose.  She has us ALL wrapped around her little fingers, she speaks we listen.  She wants, she gets.  She loves like crazy--full of hugs and kisses.  She prays.  She laughs lots, colors lots of pictures, gets really, really silly, dreams big, talks a mile a minute, loves chocolate and candy, wears a crown constantly, makes the most out of each day!  Each of her brothers and sisters have a special relationship with her--Derek--oh, how she loves Derek!!  For quite some time, I'm convinced she thought she had 3 parents--he is smitten with her and she with him.  She makes him at least 10 pictures a day, wants to call him every time she does anything!  She even calls him "daddy".  I thought having our kids spaced out so far would mean they wouldn't be as close--it is just the opposite!  These two are two peas in a pod!!  Connor--he makes her laugh, he gives her anything she wants, he is patient, and kind, and loving.  Every day she asks when Connor is coming home--she gets into his stuff--he doesn't care.  Sweet, sweet, sweet.  Breuklyn--she's the big sister!!  She spends so much time with Gracie, the best babysitter ever!  So often Gracie gets these awful headaches and foot pain--it's tough to be on call when this happens.  It breaks Breuklyn's heart.  Breuklyn is so tender with her, she gets so excited when Breuklyn will play with her!!  Selah is Gracie's playmate--and patient she is!!  Sweet Selah will play for hours on end, and Gracie is always the boss.  Gracie can hardly stand it at home with me when all of the kids are in school--she misses them so!! 

As you can imagine, this is a difficult time for our ENTIRE FAMILY.  Gracie is such an inspiration to all of us, she is so much life in this family.  When she hurts, we hurt.  When she's scared, we're scared.  The good thing...when her heart feels better, so will ours.  When she laughs, we laugh.  When she acts silly, so do we!  Praying for healing, laughter, silliness, and HOME!

Lots and lots of love from our home to yours!!

The Opps

A New Blog!!

Because of some computer issues at our home and serious lack of any computer know-hows, I am needing to change my blog address! 

I do want to get this out to you as soon as possible because we are nearing the date that Gracie will have her next surgery.  On October 11 some very fine doctors and incredibly skilled surgeons will open her chest once again to hopefully reroute her blood flow and give her the best chance at more years of life on this earth.  This is a very high-risk procedure that has been on the calendar a few times already.  Actually, a year and a half ago, we were all set and received the call that it was too high risk for her anatomy.  You may wonder, and believe me--we all do...WHAT HAS CHANGED??  The answer is nothing.

There is just not a good fix for all of the defects Gracie has.  Typically kids with Heterotaxy follow a surgical regime that includes two of Gracie's prior surgeries and around 2-4 years of age they finish up with the Fontan.  With Gracie, the fontan has never been a good fit--there is a lot of controversy with her because her heart disease, her anatomy is so involved.  She not only has the Hyplastic Left Heart, but also has severe pulmonary artery stenosis, TAPVR, complete dextrocardia, a history of clotting...the list goes on and on.  There is a 10 Commandments cardiologists follow when deciding on the Fontan and she breaks most all of them, putting her at much higher risk. 

The Mayo Clinic had decided back in June that they would just give her a larger shunt and see what happens.  I was told it would put a lot of pressure on her one ventricle and her life would likely be very short.  We couldn't accept this and had her files and prior procedures sent to the University of Michigan Hospitals in Ann Arbor, which just so happens to house what many believe to be the greatest pediatric heart surgeon in the United States.  Dr. Bove spent much time looking over her files and believes the best outcome for Gracie to have a future would be the Fontan.  He would be willing to do it!!  As excited as we were...and are... that we now have this option, we were/are very, very scared.  After Dr. Bove's recommendation to move forward, Dr. Burkhart, at the Mayo Clinic is willing to perform this operation.  We completely respect and trust Dr. Burkhart.  One huge advantage to having the surgery done at Mayo with Burkhart is that he knows Gracie's heart.  He's operated on it several times--many close calls.  He is very skilled at what he does and has a terrific reputation with CHDs.  Of course, we already know that Gracie's days have already been written--Psalm 139 tells us that--it is so freeing to know that whatever decision we make--He has this all figured out already!!  Don't get me wrong, the past days have been extremely difficult as we approach this date on the calendar.  I feel so responsible.

Sweet little Gracie trusts us with everything.  We tell her something, she accepts it.  What if we are wrong?  What if this surgery is too high of a risk?  What if it takes her life?  Right now, she is fairly healthy.  She's quite blue, has low O2 saturations, is somewhat fatigued, but feels good.  If you ask her if she's sick, she says "no".  Right now, she is singing her songs she learned at preschool and coloring up a storm!  She has no idea!!  And neither would anyone just meeting her or watching her play.  So to place this happy, spunky little girl on the operating table is very difficult.  We have no idea what her future holds.  But we do know WHO HOLDS IT!  Without that, without faith, without believing and knowing that this life and its challenges are temporary, there is no way we could enjoy this next week as we know we will.

We really do appreciate your prayers for our family.  As you can imagine, this not only affect Gracie.  We have four other children who ADORE her--the stress of a sick little girl in the family can be overwhelming, the fear is very real.  Gracie continues to teach all of us how to love, how to live intentionally!

I'll keep you posted--promise!

If you have been following my other blog, please switch over to this one--and let your friends know that we have switched addresses.  Remembering Gracie's earlier days and the prayers offered up on her behalf from around the entire world--feel free to share!

Much love to those of you who love Gracie!!

Gayle