Milestones and Memories

Today I spent a great deal of time reflecting on the past 6 years--it is getting close to the time we found out about a baby in utero to be born with a very serious heart disease.  We had NO IDEA WHAT WE WERE GETTING OURSELVES INTO!!!  We had no idea how our hearts would grow, how our faith would change from that of knowing to experiencing, independence to complete surrender.  We thought we had things figured out, our kids were doing well, our life was pretty cushy, our marriage was loving.  Life was good.  Today...it's better!  Way better!!!  One little gift, a perfect present from God, was to be handed to us.  Included in this sweet life were a huge variety of unknowns--from diagnoses to specialists, from hospitals to heartaches--we were getting on the ride of our lives.

As I read through much of Gracie's journal these past days, I was looking for one entry in particular.  You see, Gracie started kindergarten today!!  Six years ago that was a possibility, 5 years ago that was an impossibility, 4 years ago that was highly unlikely, and just last year at this time--not even discussed.  I read the words from 5 years ago bawling my eyes out.  We were told it was time to prepare for a short-term plan--at times, an extremely short-term plan.  

There were a couple of weeks that I struggled greatly after that horrific surgery in March of 2007.  She survived, but they couldn't get her to breathe--sort of a huge issue.  We spent a lot of time at the hospital --nearly 4 months with Gracie on the ventilator.  We'd have days where things would look good, then look horrible--all along we were given very little hope for any sort of future.  She had several times where her heart stopped for long periods of time--we were told to prepare for a short life.  

On April 3 of 2007 I wrote "I am not only wanting Gracie home, but wanting so much more for her than that.  That explains the pain and the desperation.  I do want many things for Gracie--I'm human with a heart that desires good things for my children.  I want her to wake up yelling Mommy, I want her to play in the grass in the sunshine, I want to take her to Disneyworld, I want her to go to kindergarten, be in a silly play, laugh until it hurts, eat ice cream, have a crush, fall in love, even be a little sassy.  I'd be dishonest if I told you that I never worry about her future--I don't want to go there, but there are many times I do.  I want to be her mommy for a long, long time.  If God chooses otherwise, I will be very sad, but I will also know heaven awaits us both."

On that little list, she's done them all--well, except for fall in love--maybe, sort of.  She has a pretty big crush on a certain little 6 year-old!!  Her life has not been defined by her diagnosis--not one bit!  If you know Gracie, she is the life of the party!!  And she's a KINDERGARTNER and so stinkin' proud of it!!

Sometimes I believe it's good to look back--we don't want to get stuck in the past, but we can certainly use it to remind us of all God has done!  He is good and He has blessed our family tremendously with a sweet little princess with a toothless grin and an extremely unique and amazing heart.  I cannot imagine this life without my little Gracie Cakes!!  When those sweet little hands are grabbing onto mine, when her teeny little lips pucker up for a good-morning kiss, when she asks for the 10th time each day if I still love her even though she did another bad thing...my heart skips a beat!  

As many moms were pretty sad bringing their little ones to kindergarten today, my eyes welled up with tears of joy, she is living life!!!!  

Back in the Hospital

Gracie is back in Rochester fighting pneumonia.  She had a pretty rough night, but is doing a bit better this morning.  She has had such an uneventful few months, I haven't even been on here!!  That came to a halt this past week.  On Monday, she had a pretty sore throat, like half of our community, so I brought her in.  No strip throat.  As the day went on she developed a cough, which is concerning with her anatomy.  We watched her at home.  Then yesterday morning, the cough was much worse, so back to the doctor we went.  he did hear some junk in her lungs, so he put her on a stronger antibiotic.  As the day went on, she became so sick.  Her breathing was labored, her color was poor, she had a much more frequent deep cough, and a high fever.  Our doctor met is at the emergency room and ran a few tests, her oxygen saturations were in the 70s, which was what they were pre-surgery. 

Gracie was buckled into the bed and off we went by ambulance to Rochester.  She sort of liked the ride actually and decided maybe Daddy could put one of those beds in the Suburban :).  When we arrived at Mayo, it was clear she does have pneumonia. She was given a large dose of steroids--not a good combination for our sweet little girl.  Wowzer!  She was a ticked chic!!  Thankfully, they have worn off and Gracie is making an appearance again. 

We just spoke with the doctor and it looks like we will be here a few days.  She's requiring oxygen to keep her sats up and is on a pretty powerful antibiotic.  All signs are moving in the right direction, however.  Now it's just dependent on how quickly she recovers.  I will try to update as I know anything--thanks for praying for us last night and tonight.  It's amazing how quickly life changes! 

Enjoy your day!

Love,
Gayle

"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.