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Before I post anything here, I always double-check with God what I am supposed to write.  As a result, there are many things going on that I have not written about, but tonight I have been given more permission than I’ve had in the past.

Last month, leading up to Liberty’s original heart procedure, I had wondered if I was supposed to ask for miraculous healing in advance, and eventually I did.  Two nights before her surgery, I was talking to God about it, and I could feel two answered options in front of me.  One was the answered yes to Liberty’s miraculous healing request.  The other was the answered yes to the BIG PRAYERS God had originally stirred in both Liberty and me back in Dr. C’s office the day we discovered her right aorta wrapping her esophagus.  

Some of those BIG PRAYERS were for the entire hospital system itself to be corrected to “save much people alive.”  Some of those prayers were for the doctors, nurses, and staff to be set free from spiritual bondage or strongly encouraged to be bold in their walk with God.  Some of those prayers were for patients to be set free from harmful practices and allowed to be healed in the name of Jesus.  (I want to clarify that I did not have a bad opinion of this hospital, although it sounds like I did.)  Obviously, we did not know any systems, staff, or patients yet, and we did not know specific requests to ask, but God miraculously poured faces and needs into our minds, and so we prayed.  And in that prayer, we surrendered to be used any way God had for us.

Back to two nights before heart surgery.  I was praying, and I realized God had two open hands before me with two completed answers to prayer.  But I could only have one.  Either Liberty could be miraculously healed ahead of surgery, or we could have our BIG PRAYERS answered.  God had no judgement for me attached to either request.  He wanted to do SOMETHING BIG at the hospital with or without us; He was just offering to let us be part of it if we wanted.

I wrestled.

Eventually, I reluctantly told God I wanted to be part of the BIG PRAYERS answered instead.  The deciding factor was that God had so miraculously given those BIG PRAYERS; they had not come from me or Liberty.  I felt like a terrible Mom, and I felt like I should get permission from Liberty before making a choice like that.  So the next day I sat down with Li to chat.  As usual, she spoke first.

“Mom, I think I have to not be healed in advance.”

“What?  Why?”

“Because if I am, I don’t think the BIG PRAYERS can happen.”

“Hmm.  Why do you think that?”

She hesitated.  “It’s just something I know.”

“Are you okay with that?” I was curious.

“Mostly.  Kind of.”  Then she flashed a brilliant smile at me.  “Yes!”

When we were discharged after two days I was surprised, and I felt like we were not finished being used by God.  It was not surprising that Liberty ended up being sent back, no matter how awful I felt about it.  I even had a panic attack when she was life flighted.  Several, actually.  God sent a lab tech named Brandie to pray with us and speak Truth in the first emergency room before L was life flighted during my first panic attack, and He sent my neighbor and his dog to help me through the second one while our car was being packed for our return trip, because God is just good like that.  Jeremy helped me through the third on the drive down and the fourth after we arrived.  And then God took over and gave me Great Peace that passes all understanding.

During our first visit several things had happened that needed to be addressed, and on our return, God immediately gave us meetings with people who could address those issues and introduce system changes.  They took our concerns seriously, and began those process changes.  

But systemic change, especially in a big institution with poor internal communication is a slow thing.  We saw some immediate small things, but very little true change at first, and we encountered repeated problems that should not have ever happened.

Regarding staff and patients who we had prayed in advance for, God has done many, many things.  I’ve had the ability to pray with and for multiple people here.  Many amazing conversations have been had.  I haven’t blogged about any of them because most are personal and private between that person and God.  A lot of what God has done I only know about through faith because God has told both Liberty and me after this or that wonderful encounter that He has just used it for that person’s ongoing future and the future lives touched by that person.  Other things I know a tad about because people have been coming and telling me afterwards how God has impacted them.  Those are encouraging conversations, but on the surface none of this has felt very big.  Not like what God had put in our hearts to pray beforehand.

This morning, I told God I felt discouraged about Liberty’s health and discouraged at the lack of evidence of Him making any BIG difference here through us, and I asked Him to show me evidence of what He had going on behind the scenes, please.

Today, I encountered a serious problem for the third time this week after being assured last week that the patient safety protocols had been addressed in a certain department and in the computer system.  I took bold action and addressed it myself, bypassing all protocol and risking however they discipline unruly parents.  (Assuming they must have an unruly parent protocol in place.)  Thankfully, God had orchestrated it so that my actions and conversation were witnessed by people who had the authority to make things move.

Tonight three separate things happened that show me the huge, rusty, inactive gears are beginning to grind into something better for all patients.  That is all I needed to see.  God can do all the rest incognito.  I just wanted to SEE with my physical eyes that He was truly up to something big inside this building.

That is something you can pray with us for.  To save much people alive. 😊
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Before I tell you the hard stuff, I want to start with a praise.  Remember all that brain confusion and dizziness I had talked about a few posts back?  Well it is gone!  It turns out one of the drugs L was on was causing that!  The nurses figured that out and pitched it.  Hooray!  

Something I have not talked about on the blog, probably because it is too hard to wrap my mind around, is that my daughter is permanently damaged.  During her heart surgery one or more lymph vessels were severed, and they are pouring out chyme.  She is attached to a vacuum that is attached to the hospital wall.  They are trying things.  So far they have tried waiting to see if it fixes itself, and they have tried the embolization, but they don’t actually know how to help her.  If I wanted to take her on my own anywhere else for treatment, I couldn’t.  She can only stay alive with this vacuum.

This is a hard concept for Jeremy and me, and we have worked to shield Liberty from it.  But she is a smart girl, and she has started figuring it out.

Pray for her.

Even the embolization, if it had worked, would not have been an ideal solution.  Now, the purposeful damage done that they hope will create scar tissue this week will also create life-long problems.  We don’t know exactly what all those will be, but we know some of them.

She is in pain.  The failed embolization and consequently ruined parts of her lymphatic system hurt drastically.  She gets x-rayed every two hours, and moving into position for that hurts.

She is tired.  Tired of hurting.  Tired of loneliness (life after covid in a hospital is extremely isolating.)  Tired of all the energy it takes to keep living.  Tired of her lack of ability and lack of activity.  

I know emotions go up and down.  I know all of this is to be expected.  I know these are all thoughts I have slowly processed through over the week.  I know she needs to go through this herself, but knowing this does not make it any better.

We called our pastor and some friends today.  I was hopeful those calls would help, but Liberty ended the last call early because it was too hard to talk with happy people who can move about on their own.  She told me she wished she could pass out just to get some relief from living this life.  In order to escape for the moment, she asked to watch TV, but a side-effect of the contrast dye she was given during the embolization is that her brain cannot handle stimulation, and TV is way too much stimulation.  She can listen to lullabies and slow, soft music, so we tried that.  But she had too much pain and nausea to relax.

All afternoon she’s been asking me for reassurance that she will get out of here some day.  I’ve prayed with her, I’ve sang with her, I’ve praised God with her.  Next I gave her a couple hours to just be quiet and think, and I prayed for her.  God kept putting one thought in my mind.  “If I never heal you, what will you do?”  I knew I was supposed to ask her.  So later this evening, I did.  

“My Tweet, if God never heals you, what will you do?”

She weakly began singing to me with her head poised over the vomit bag, “Where You go, I’ll go.  Where You stay, I’ll stay.  I will follow You.”

My heart smiled.

Tonight she tried to settle in to sleep, but her chest tube hurts and her IV arm aches.  Not to mention all the other things.  But those two were bothering her the most as she snuggled into bed.  She is all stocked up on pain meds, so that was not an option. We talked about how Daniel might have felt in the lions’ den and how Shadrach, Meshak, and Abednego might have felt going into the fiery furnace.  Sometimes life doesn’t feel good, and you have to live it well, anyway.  Live it valiantly. 

She pleaded, “God, just the chest tube or the IV, but don’t ask me to live with both at once!”

“But He is asking, Liberty.” I had to tell her regretfully.

“Okay, God,” she gasped out.  “Then You’ll have to help me with this, too.”  I watched as her muscles relaxed, her body calmed, and she fell fully asleep within three minutes.  That was two and a half hours ago, and she is still fully asleep!  AND there are no x-rays scheduled through tonight!  

Thank you, God!!!


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I am thankful to see God in the middle of all this.

They cut her old tube and shoved a new tube into the remainder of the old tube and taped it.  Done for now.  I guess?  I’m not sure if this is the permanent fix or a temporary fix.  It looks very temporary to me, so I’m guessing they plan to do something else tomorrow.

Two x-rays to see if the internal part of the tube has shifted.  Two x-ray technicians walked in separately from each other to take two different sets of pictures.  The first one wrote this on Liberty’s thankful chain: “I am thankful to see that even through difficulty we can still be happy.  I am very encouraged for such an opportunity to see this.”

The second one wrote: “I am thankful for The Thankful Room.  We need more of these here.”

He’s not done. 😊

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Liberty’s chest tube (the tubing itself) has ripped open.  They’ve never seen this happen before.  Lots of uncertainty on how to handle this.  They taped it temporarily, and waiting on someone to tell them what to do.

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Liberty has been returned to us.  They were not able to do the embolization as they had hoped, and they were not able to find the actual leak.  Also, a piece of wire broke off in her lymphatic system during the procedure, and they were not able to retrieve it.  They did some purposeful damage above and below the general area of the leak, hoping to create scar tissue in the next few days that will eventually slow the leak.  They also injected an irritant into her system hoping that, too, will create scarring that will slow the fluid flow.  Over the next week, we will find out what has happened.



I am not overwhelmed with peace like the song says.  But I do know that God is here, and He cares.  And no matter how tired of this I am, I will keep getting up and keep going.

Liberty still has not come out of anesthesia.  Just like after her surgery, she is taking a long time to wake up.  She has vomited several times, and she hurts.

Jeremy has been sitting here holding me and taking care of decisions and logistics.  He’s also been speaking to the nurses about what we know Liberty would want. He’s been telling me God is good.  

And He is.
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Please leave off the word “soon” on anything you are sending to Liberty.  That word makes her sad, because she has passed the timing for “soon” to have been accurate. 💔
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She is still in the first stage of the procedure

The doctors are sitting still, waiting on her body to do it’s thing

Her lymphatic system is still, more still than most, and the stuff they put in there is very slow at moving through

We wait still

Peace be still
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Pray for full success.

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Today is the day of her embolization around noon.  PLEASE PRAY HARD!

1. Accuracy and success

2. No unexpected disasters or side-effects

3. No long-term troubles

4. God to do something wonderful for the people helping Liberty

5. Liberty’s calmness (and ours)

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I keep remembering more fun things to post.  Saturday, when Liberty was fighting a big battle with discouragement, I got out some cards that she has received and taped them to her bedroom wall.  We both feel like it has made the room happier.

Our updated thankful chain is wrapping around the room nicely, but we've hit a logistical snag.  If we continue the direction we are going, the chain will: 
1. Cause trouble with the bathroom door.
2. Make me have to stand on my bed to hang it up.
3. Wreak havoc with my privacy curtain in my area of the room.
4. Create some chaos we would like to avoid with all the medical cords and equipment on the other wall.

So Liberty and I have discussed all our options, and we've decided to layer the chain back the way it came.  This is going to take some puzzle logic on my part, but I like puzzles and logic.  So this will be fun.

Here is our updated Thankful Chain and Liberty's card section.  She has decided to start coloring Bible verses and taping them where everyone walking past can see them on her wall even if her curtain is closed.  She is hoping to encourage a lot of people that way.





Today, she commented on how happy the new cards and pictures posted made her room feel, and she decided she wanted to make other kids' rooms happy, too.  So she asked her nurse to tell her how many kids were on this floor who needed pictures for their wall, and now her nurse has delivered the two below pictures to two unsuspecting patients.  :-)

She's going to work on the rest tomorrow. 
 
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Oh!  I forgot to tell you yesterday Liberty gained a pound, and today Liberty gained a pound!  :-D  We high-fived and celebrated.

Liberty has created a game.  Well, Liberty has created many games since she has been here.  One is a game she plays with her chyle container.  I haven't learned about the physics of it, but it has a liquid seal, and in the water chamber area there are two balls.  One is large and one is small.  We've asked (but haven't googled), and no one can tell us what those balls are for.  It was hysterical the first time Liberty discovered she can move the balls three feet away from her by breathing heavily and by speaking with force.  So now she sings in a big voice to make those balls move up and down in the chamber.  The nurses have gotten used to it, but it always startles them and makes them laugh.

Another game she plays is when she is walking the corridors.  She is trying to beat either her previous time or her previous pace or some other unsuspecting person in the hall.  Sometimes she wins; sometimes she loses, but she always has fun.

A game that she has not won ever yet is called Liberty vs. The Chest Tube.  You see, she is putting so much liquid out that she cannot keep up with her hydration.  So the nurses have taken to measuring her output, and then she attempts to drink enough to replace that much output.  She is up to drinking two gallons of water per day, but now she's found out drinking that much is only sending her to the bathroom every thirty minutes, and her chest tube is STILL overflowing.  To add insult to injury, the nurses are counting her urine output as well as her chest tube output.  Liberty has declared that this is cheating.  It should only be the tube against Liberty not the urine and the tube ganging up on her.

She keeps us all laughing, and she is loving every minute of our laughter.

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This is Missy writing again.  I am so grateful to my friend who wants to remain anonymous, and who is blessing me enormously by filling in here when I am overwhelmed.  

Friday evening was my time to do battle with the enemy and win.  Saturday all day, Liberty was in battle and losing.  In fact, she wasn't really even trying to battle.  She was quitting.  God has conquered fear and pain already with her last week and early this week, and she has been experiencing great joy and peace.  So much so that the hospital staff have been commenting and stopping by to find out what is making this difference.  This time He was working on doubt and discouragement.  My poor girl.  Once again I could do nothing to help her but pray fervently.  All. Day. Long.

God gave us a wonderful nurse named Martha who took a lot of time to listen to Liberty's heart.  Just being able to speak about her thoughts to a neutral party eased the pressure a little bit.  Liberty struggles most with the unknown timeline.  We have absolutely NO idea how long we have to be here, and adding to that, every time we think we have fixed a problem, the fix creates another huge problem that has to be solved.  She is losing confidence that any new procedure or surgery will ever be completely successful.  Additionally, as you read in the previous post, she has gotten extremely dehydrated.  Her skin is tenting, her brain is slipping, her balance and eyesight are missing.  Her physical weakness frustrates and discourages her.  Martha listened quietly to it all and asked questions and shared stories of her own, and Liberty slowly released all the words.

Then God sent us Cassidy.  Cassidy was our night shift nurse.  Liberty's depression had been a topic of concern amongst the nurses especially because it was so unexpected to them.  Cassidy gave Liberty a bath and tucked her into bed while I quietly shared truths from God's Word.  Jesus felt this way just before His crucifixion.  His entire body cried and ached in Gethsemane from the stress and sadness ahead of Him, and His loneliness skyrocketed when His friends wouldn't even stay awake to pray for Him.  King David cried out to God in despair, in anger, in frustration, in every feeling.  He didn't have to have it all together, every time.  "I feel so sad, Mom," Liberty started out speaking but was quickly overcome by sobs.  I felt relieved that she was finally acknowledging her grief.  "What do I do with this feeling?"  

I stopped and listened for the right answer.  Who even knows these things?  "Just be sad.  Tell God you are sad."

"And ask Him to fix it?" she wanted to know.

"No.  Tell Him you are sad, and just be.  But be with Him."

Cassidy had been listening this entire time.  "I'll go finish my work with my other patients and come color with you, Liberty."

Liberty's face lit up!

And that is how the three of us colored until 1:00 in the morning.  We shared Bible verses together, we encouraged each other in the Lord by telling stories of His goodness to us in our pasts, and Liberty won her fight against discouragement.  She kicked that spirit to the curb and then ordered it completely out of the hospital in the name of Jesus.  :-D

After Cassidy left, the two of us stayed up talking in the dark about life and hard things and our wonderful God.  We began praying for so many people and situations and things that God wants to do.  And even though I personally didn't fall asleep until around 4 am, and work up around 6 am, my soul is refreshed.  Liberty fell asleep around 4 am as well, but the nurses came in every hour to mess with her tubing and check her vitals.  I let her sleep until 11:30 this morning (Sunday morning), and we have had wonderful, happy, laughing fellowship all day again like normal.  

I am loving the long term effects this hospital stay will be having on my girl.  Fighting all these huge battles now while she is young will clear the way for bigger things to be accomplished in the future.  That's not to say that she won't have to refight ever again, but just like in my life, every time we win something once, it makes it easier to win again. 

God is so good to us!

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Wanting to help a friend long-distance is a challenge that we all know better after almost two years of social distancing, but even though the technology makes it easier to keep in touch, it doesn't solve the awkwardness that comes with not knowing how much to gently push for more information when you know that your friend is likely being bombarded with inquiries and suspect that the weariness is setting in.

So, this evening, I've been casually interrogating Missy via text in the hopes that I could write a second post for her and update everyone on what's been going on in the last couple of days.

Physically, Liberty has become extremely dehydrated. The symptoms of dehydration and the need for round-the-clock IV have added to her emotional distress.

The emotional distress seems to be a combination of two factors: loneliness and worry. According to Missy, Liberty "absolutely does NOT want to do this procedure on Monday." Despite the support of chaplains, psychologists and nurses who have all taken the time to talk things over with her, that doesn't change the reality that "This is horrible and hard." 

Added to this is the isolation of being away from nearly everyone she loves:

"[Jeremy] left yesterday [Friday] morning. He and sisters and grandparents went Christmas tree hunting with aunt, uncle, and cousins. Liberty was extremely sad to miss that. Jeremy returned at noon today with Mercy and VeeVee and grandparents. They stayed outside the hospital doors, while Liberty is on the third floor, and that made Liberty more sad. Now they are all driving to our house, sleeping there, going to church . . . in the morning, and then returning to Ohio for drop off. Liberty is terribly sad. She misses her friends, her church, her sisters, her grandparents."  And Daddy left.

The silver lining is that grandma left them well stocked up with food, so Liberty still has a supply of nutritious, yummy food prepared with love.

I leave you with a song... well, actually two, but they're together in one YouTube video. When the Lord laid the song "The Warrior is a Child" on my heart a few days ago, I was thinking of Liberty, but now I think that this song, so dear to many of us from our teen years, is a picture of Missy, standing bravely in the midst of this battle and perhaps yearning for a moment of peace to look heavenward for a smile from our Father. 

The second song is, "Do I Trust You?" It includes this line: "I will trust you, Lord, when I'm blind with pain." I don't think many of us who have not been there with Liberty can truly appreciate the amount of physical pain that she has endured, and yet, Missy assures me that, through it all, she has never let go of God.

Dear Missy and Liberty, I'm praying these songs for you.
https://www.youtube.com/watch?v=6Pzu-jWpcdw 

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Our days have settled into a routine while we wait for God to heal Liberty’s thoracic duct.  They don’t want her lungs collapsing again, so she is always hooked to a vacuum pump attached to the wall, and the sucked out fluid gets collected in a chamber.  We were joking with the hospital staff that Liberty should get a star inset into the hallway floor for holding the record for most chyle ever out-putted. 😄   

Mornings always start between 4 and 5 am with a chest X-Ray to check on Liberty’s fluid level.  The x-ray technician sneaked into our room this morning and went straight to the counter by the sink to fill out her thankful strip.  That cracked me up and encouraged me at the same time because she did not know that anyone was awake in our room.  That meant she did it solely because she wanted to which tells me it was doing something happy inside her, so that made me happy as well.  I got up to help her maneuver my sleeping Liberty into position, and she whispered her thankful to me.  Then she said, “You can’t see it through my mask, but I am smiling, and I’ll keep right on smiling when I leave here! (Rule 4) I love this thankful chain idea!”  How that made my heart sing!

Between 5 and 8ish a.m. I generally lie awake praying and wishing I were asleep and telling myself not to accidentally fall back asleep too soundly and miss my opportunity to get dressed and presentable before the day shift nurse comes in and the doctors start making their slightly unpredictable rounds.  I do this every single morning.  You’d think I’d have invented a better routine by now.

Eventually I give up on getting any more sleep and give myself a sponge bath at the bathroom sink then change into clean clothes and stuff my dirty clothes into a bag to be washed later.  There is a laundry room on the sixth floor.  Brush teeth and hair, fill my water bottle, spend time with God.  I’m reading Acts right now which is hugely encouraging!

Then in come the day shift nurse for introductions and night shift nurse for goodbyes, and eventually the doctors make their rounds as well.  Lately there haven’t been any big developments.  Just more waiting instructions.  Liberty’s embolization is scheduled for Monday afternoon, November 29th.  It is a procedure that has never been done here, and I would like you all to pray hard about this.  Pray however God leads you.

I order breakfast for myself and prepare breakfast for Liberty.  They are trying to dry up her lymphatic system which runs on fats, so she is on a low fat diet - less than 10 grams of fat per day.  Yesterday I told you she had lost 11 pounds and gained 3/4ths of a pound.  Well today she has lost that 3/4ths plus more.  That was discouraging.  She is losing her ability to think clearly, see clearly, and hold herself upright.  Please keep praying for her. 

I try to let Liberty sleep as late as possible for two reasons: sleep is good for her, and there isn’t much else to do.  But I don’t want to risk her getting discouraged by inactivity and just sleeping all day long, so I usually wake her up around 8:30 to 9:30 a.m. I wake her slowly by turning the lights on and opening the window curtains and turning her bedtime music off.  Around this time, my breakfast gets delivered, so there is a little noise while I chat with the tray delivery person about their link on the thankful chain.  That frequently gets turned into a bigger conversation than just the chain.  Then I eat my breakfast while Liberty groggily comes to, and the day nurse comes in to do vitals on her own and establish her baseline for the day.  Liberty chats with that person and gets helped to the bathroom.

Once she is settled into a good spot back in the room, I bring her her breakfast and try to get her to eat.  Eventually, we get her up and take her first walk.  She is very unsteady, so it takes two of us to keep her upright and cart all of her attachments as well.  The last two days she has been energetic and wanting to “go fast,” but her energy only lasts in spurts.  This morning she did three long rounds and wanted to do more, but our nurse didn’t have the time to keep going.

We tucked her safely into a reclining chair where she sat while person after person after person came in for one reason or another to talk about various procedures.  

Daddy arrived with my suitcase and weekend supplies. He and Grandpa and Grandma were leaving to see Mercy and VeeVee who have been feeling very homesick recently.  We already knew one of us needed to go see the girls, and when their aunt and uncle said the same thing on the phone, we worked to make it happen quickly.  We discussed all kinds of arrangements and eventually hugged a long goodbye.  It feels empty here without Jeremy nearby.

I prepared lunch for Liberty and even though she liked it, I still had to coax her to keep eating.  She doesn’t have enough energy to sustain eating.

Another bathroom break.  Bathroom breaks are ordeals because first you have to call the nurse and then wait until someone is available.  Then it takes fifteen minutes to get all Liberty’s attachments unattached and her up and to the bathroom.  Liberty moves very slowly nowadays.  Then there’s the time in the bathroom, and another 15 minutes getting her back where she belongs and resettled.


I have tried for two days to write a post.  Any post.  And this is the one that I started on Friday, but Friday was a day of discouragement.  I was being poked by the spirit of "What If?" and I wasn't remembering to trust what God has already revealed to me.  So my writing ability had dried up.

Thankfully, when I cried out to God for help late Friday evening, He pointed me towards a friend who was able to repeat to me exactly what He has been saying since the beginning of November.  What a relief!  I was able to return to my job with peace and a smile.
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This has been a wonderful day!  We decided the night before that we were going to take Thanksgiving off from being in the hospital, so we started by sleeping in. Apparently the hospital staff were in on our plans, and no one woke us up!  No early morning lung X-rays, which is Liberty’s usual first thing in the morning procedure, no doctor visits, no rounds updates, no nurses checking vital signs.  We found out later all of those things were supposed to happen, but our wonderful nurse stopped everyone outside our door and sent them away.  God must have told her we needed a break.  He is so good to us!  I’m very glad she listened!

By the way, to everyone praying for Liberty’s pain, you need to know that she has gone a day and a half with zero pain medication.  The nurses are saying this is unheard of for patients with a chest tube.  But God. 😃 Thank you for continuing to pray about that.

Liberty and I sat and watched and read many of the messages from you all.  What an uplifting thing!  We haven’t even gotten to half of them yet.  Liberty gets tired out very quickly, and it is nice to have more to look forward to tomorrow.  Thank you all!  Several of you sent thankfuls to be added to Liberty’s chain.  We love that!  I said we should set a goal of wrapping our room in thankfuls, but Liberty wants to sneak our chain out the door and start covering the hallway in thankfulness.  She’s ambitious.  



Yesterday or two days ago, Liberty saw a little girl in the hall with a chest tube and attached container like Liberty’s.  We immediately began praying for her and her family, and the next time we saw them we waved like crazy.  The poor girl looked absolutely miserable, so Liberty called out from her bed, “Look!  We have matching chest tubes!  Isn’t that cool?  I have a chest tube, too!”  The girl’s parents stopped and tried to get her to respond, but it was pretty obvious she was in a LOT of pain and did not want to be conversing.  Liberty smiled and told her, “Chest tubes hurt, don’t they?  I’m praying for God to help yours not hurt so badly anymore.”  Over the next two days we prayed for much more than that for her and her family, but I’m getting ahead of myself.

Later that first night I left our room to get some water, and I ran into the girl’s father.  He told me that the thankful signs outside Liberty’s door had been a huge encouragement to him and his wife.  I felt moved to pray for them, and he ended up telling me their story.  Charlotte is five years old.  She was a twin, but her sister passed away.  They have three other kids at home as well.  Charlotte was born with only one working heart chamber, and she is on her third heart surgery.  They are hoping this one is her last until she needs a transplant as an adult.  The parents both lost their jobs to come here.  The mom works at a gas station and the dad works at an RV factory, and neither job would give them two weeks off.  They drove here and stayed in a hotel the night before Charlotte’s surgery, and when they got up in the morning to drive to the hospital, they found their truck had been stolen along with everything inside.  Someone from the hotel drove them to the hospital to get there in time for her surgery.  Please keep praying for this family along with us.

The next time we saw them in the hall, both mom and dad stopped and asked if they could add to Liberty’s thankful chain.  So we passed strips and markers out to them, and they wrote their gratitude.  We also exchanged names and phone numbers.  We kept praying fervently for them, especially for Charlotte who seriously did not want anything to do with us, to her parents’ chagrin.

But today!  Today, Nate stopped by our door with a sucker for Liberty from Charlotte!  Liberty couldn’t accept it because of her strict diet, so she passed the word that she would rather have a thankful strip added to her chain from Charlotte.  An hour or so later, Brittany came by saying Charlotte was requesting a thankful strip! 😃  Liberty and I cheered!  Brittany carried the strip home to Charlotte, and Liberty got to work drawing a picture for Charlotte of the two of them holding hands in their hospital gowns.  Now, Liberty has a coloring page taped to her wall of Minnie Mouse colored for Liberty by Charlotte!  We are so happy!  Charlotte even stopped by our door to say a very quiet “Happy Thanksgiving” to us. 💖

In the afternoon Daddy came in with a special Thanksgiving dinner he and Grandma and Grandpa had worked very hard over just for Liberty and me!  Hooray!  It was very tasty, and Liberty is thrilled that they brought salt and pepper shakers for her personal use.

We got to hang out with Daddy and call Mercy and Victory at their cousins’ house, and that was wonderful even if it did make Liberty cry from missing her sisters.  As Liberty and I keep reminding ourselves, it is so happy to be crying and not dying!  (PS: I know a few of you have been praying about Liberty’s inability to cry.  Thank you!  God has heard your prayers and granted her enough health to be able to cry and not die!)

Healthwise, this has been Liberty’s best day ever.  She has been experiencing tachycardia episodes ever since she arrived, but they gave her IV fluids last night.  Her heart has slowed way down, and she had so much energy today!  She has lost 11 pounds in the last ten days, and today she gained 3/4ths of a pound, so that was happy, too.  

Also, today we decided Daddy needed to go be with Mercy and VeeVee for the weekend, so we are super excited on their behalf.  Please keep praying for all my girls and for Jeremy and me.  We need your prayers badly.
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HAPPY THANKSGIVING, EVERYONE! 😃

First off, thank YOU.  We received so many videos and messages and things we haven’t had time to go through them all!

Secondly, I thought I’d tell you about our day.  Several discouraging things happened in a row on Wednesday, and Liberty was already feeling down, so those things made it all worse.  I decided something drastic had to be done.  

I, too, have been feeling really discouraged, and Wednesday morning when I woke up I talked it over with God.  He told me to get dressed. You see, when I packed for Liberty’s heart surgery ages ago, I packed sweatpants and comfy shirts thinking I’d be overnight in the hospital a bit, and I packed two nicer outfits for going home: jeans, nice shirts.  When Liberty was life flighted, I had not yet unpacked my hospital suitcase, so it got brought along full of dirty clothes.  The dirty clothes had been washed the day after we arrived by my amazing parents, and I’ve been wearing sweatpants and comfy shirts all week.  But this morning God told me to get dressed for living.  The sweatpants were placeholder pants, meant to keep me comfy while I waited to get back to my real life.  God showed me THIS is my real life, and I need to LIVE it fully whether it is what I would have chosen for myself or not.  So I put on my jeans and good shirt today, and I prayed for God to show me creative ways to introduce life back into my girl.

By the way, no matter how badly Liberty has felt physically or emotionally, she has always gone out of her way to engage deeply with every person who enters her room.  Today, God sent Lindsay to visit us, and she offered crafting supplies.  Liberty decided to make a paper chain to decorate the room.  But you know Liberty.  A simple chain would never do.  Her chain comes with rules.  Thankful rules.  Which got taped with medical tape to the outside of her room door.



It’s working!  Every doctor, nurse, housekeeper, dietician, specialist, etc. has been informed that they’ve entered the Thankful Room and must abide by the rules.  Liberty even contributed a few strips herself throughout the day.



And then tonight, breakthrough!  God won in her heart, and I’m excited to see what He does with it! 😃

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We have all been waiting to see if the chylothorax would heal on its own, given enough time, but it seems apparent from the data that Liberty’s is not.  We’ll see if God decides to do anything unusual for her, but here are the options presented to us now.

1. Starve her completely for seven days in an effort to stop the outflow long enough for the vessel to heal.  (Not recommended.  Doctor said that course is HARD on patients.)

2. Exploratory surgery to find the leak and attempt to repair it.  (Not a single person involved in this wants to take that option, but until today, that was our only other option.)

3. It turns out, the internet googling I did in the middle of the night and linked to previously came in handy because it taught me about a newish technique developed by Penn Medicine in Philadelphia called percutaneous thoracic duct embolization.  Our surgeon studied at Penn when this procedure was being developed, and he called around at Penn to see if anyone knew how to perform this and would be willing to help Liberty.  It turns out, someone who studied the procedure works at this hospital and is willing to try it.  The embolization has never been done here before, so Liberty would be the first.  She was also the first to receive a thoracoscopic heart surgery from this hospital, and we see how well that turned out.  So we’d appreciate prayer.

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Missy asked me to help her write a blog post that helps to fill in some of the gaps in Liberty's story, because she understands that it's frustrating to all of us on the outside to be craving information on how God is answering our prayers. But, sitting down with my notes, I completely sympathize with her, because it's difficult to know how to start.  So, I am going to split this into two posts, starting with more in-depth prayer requests, because I think that will be the easier part, and it gives all of us ways to be involved. So, here they are, in no particular order.

1. In addition to sending Liberty video messages (per the previous post), please pray for liberty's spirit to be uplifted. This is repeated from a previous post, but if you're anything like me, it's easy to forget from day to day what the specific prayers were, so please pray for her to keep holding on to God. For now, our young fighter needs to rest in God, put down her sword, put on the shoes of peace and belt of truth, and be surrounded by a shield of faith.

2. Keep praying for the chylothorax to heal and for Liberty to regain the ability to swallow normally. She had hope that the surgery would free up her esophagus, but she is still having difficulty swallowing. Pray for the speech therapist to be able to figure out the problem and that the solution will be non-invasive. Please pray that she will have the strength to sit by herself.

3. For Jeremy and Missy to know when to speak and when to be still, to be diplomatic, to be full of grace and peace, and to be lights of God's love to all they encounter. Pray that the staff will feel at ease with them.

4. Please pray for God's spirit to fill the hospital, for angels to surround it and protect those within. Pray for the patients, families, and staff to feel uplifted, and there to be a revival because of the light of those who love God. 

5. The family has encountered several places where the hospital could use some improvement. One big one is the dietary department; for example, the menu that Liberty has to choose from due to her dietary restrictions is far too limited. Happily, the staff is open to ideas, and Missy's mom is there with a big heart and a recipe book, cooking for Liberty in the hotel room.  Missy’s dad drives the food to the hotel, and either Jeremy or Missy comes down to get it.  They are having many conversations to get kitchen things changed for future patients. Please pray for wisdom for Grandma, and for her all the staff and decision makers, that the Lord will use them to provide better food for the children at the hospital.  

Praises
1. Praise the Lord for friends who have been sending messages of prayer, scripture, and encouragement.
2. Praise the Lord for hospital staff who have been so helpful and are listening!  They have even requested help from Grandma in the nutrition department!
3. Praise the Lord for Liberty's slow but steady physical recuperation from heart surgery and from her one and a half collapsed lungs. 😊

-A friend in prayer


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Liberty needs encouragement badly.  Please send her a short video via my text, email, or Marco Polo.
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https://www.rch.org.au/rchcpg/hospital_clinical_guideline_index/Chylothorax_management/

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 What is chylothorax?

Finally, Liberty and I slept.  This is the first sleep I have gotten since Friday.  Liberty slept about four hours a couple days ago while her daddy was on guard, but tonight she fell asleep around 11:00 pm and is still sleeping!! 😃

The nurses all know how scared of them she has been even though she treats them so kindly and asks them questions about their lives and their scientific jobs.  They have gone so far out of their way to make her feel comfortable, and tonight it has finally paid off!  Please keep praying for our ministry to them, and to the housekeeping and maintenance staff who come into our room to accomplish something and find themselves in the middle of long conversations with Liberty.  And praise God with me for their ministry to Liberty.  

We’re being told we for sure won’t be home for Thanksgiving, and probably not by Sunday either.  Maybe a few weeks if all goes well.

The treatment described in the article I linked to above is not what the doctors described to us.  Our doctors are saying if God does not heal the leak on His own in a few days, they will reopen her heart surgery site and go exploring to find the broken lymph vessel.

Please ask God to seal up her leak His way.  We REALLY REALLY REALLY do not want to go back into surgery.  REALLY

We ask with our hands open though, God.  We love You and trust You in everything.

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Liberty asked me to post this song.

Truth I’m Standing On

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1. Her lymphatic system leak has to heal.

2. She is really struggling with fear from things that happened the first time she was here for the heart surgery.  Ask God to remove all her fear and replace it with trust.

3. Sleep and rest - she is choosing not to sleep so that she can stay on guard to protect herself from the nurses and doctors making accidental mistakes.  This is the spiritual battle between fear and trust I referred to in my earlier blog post.

4. God to move mountains at this hospital to change their drug plan and their food plan and their computer communication system.  He is already making moves.  Ask Him to open the way to better care for His littlest ones.

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1. Liberty’s vital signs have been completely stable, and they are saying she has the ability to be moved from the ICU now.  However, they are keeping her here at the moment because the doctor is unsure if and when she may need to go in for a possible surgery, and it doesn’t make sense in his mind to move her to a new spot, just to go into surgery and then bring her back to ICU right away again.  

2. Her pain is managed overall with minor breakthroughs here and there.  Plus, we’ve been on a big learning curve to figure out the best way to handle everything.  Please keep praying for her sensory issues.  Those are really bothersome to her here.

3. The doctors and nurses are going above and beyond to make all of us feel extra comfortable.  We are very grateful for their care.

4.  God has never left us.  Even in the hardest parts, He has gone out of His way to talk with us and get our attention when our focus is off.  He has used the body of Christ to send scripture and songs full of encouragement and admonishment.

5. Liberty’s spirit has fought through a battle and found a resting point.  I do not believe that particular battle is finished yet, but it’s on its way.  Pray for overnight sleep and rest for her, please.  God created her to be a warrior.  It is what she is good at.  But God is asking her to lay down her sword and put on the shoes of peace and the belt of truth and let Him use the sword on her behalf this time.  She is struggling to give up her favorite part.

6. Mercy and VeeVee are having a wonderful time with their cousins in Cincinnati and being very well cared for.  Please keep praying for them.

7. My parents drove us down to Indy following Liberty's helicopter, and they are making a huge difference helping us and cooking for Liberty.  Please pray for them as well.

8. Jeremy has been exactly the man I needed in all this, and the perfect protector and provider for Liberty.  Please keep praying for his heart and for wisdom.

9. We have made so many friends here!  God is good to us.

10.  God has been fighting for me to be able to say that He is good, and I’m glad He fights for my heart ❤️ 
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1. At the moment, more than her body, pray for her spirit.  She is under attack.

2. Pray that God stops the fluid leak.  If he doesn’t, exploratory surgery is in her future.

3. Continue asking for God to use us to minister and to be ministered to.  He has already gotten some BIG things rolling.  Pray them along!

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They got her vital signs stable around 7 Sunday morning, but the stability cannot be counted on.  Any time her body pumps more fluid through the tube it has the potential to send her into cardiac arrest.  Which happened once in front of me.  They are counteracting by pushing IV.  Lung has partially inflated.  Fluid is still copious and not stopping.  She is in pain.  Doctors unsure of cause or next step.  We are taking things day by day.

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The surgeon just called.  Her lung has collapsed, and they are performing an emergency procedure to drain the fluid.  They are doing it now.  We are still driving to the hospital.  Should arrive in about an hourish.

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 She is being life flighted.

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The latest report is too long.  Basically, the hospital had been giving Liberty something she was allergic to, and it got her into a life or death situation.  We have been dealing with that ever since.  No details right now.  I am too tired.  We are home.  Liberty is on high doses of benedryl around the clock to keep her breathing while the stuff works out of her system.  They’re guessing three days or so.  We’ve finished day 1.

Please continue praying for her and wisdom for us.  God has a good plan.
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I’m getting lots of welcome home texts, so I figured I’d better clarify here.  We are staying in Indy right near the hospital.  Liberty is not up for a long car ride home. Please continue praying for her and wisdom for us.
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They don’t waste any time around here.  Boy howdy!  Liberty is being discharged whenever she wakes up from her nap.  She’s had several tests this morning that came back great, and we are all set.
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“Thank you all for praying for me!  I feel MUCH BETTER.  I SLEPT!”

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Liberty has slept peacefully the entire night, and she is still sleeping now!  To quote her and her sisters’ favorite song “Hallelujah!  Look what God can do!” 😃

She still has a couple hurdles ahead of her, but they are normal, post-operative hurdles that every patient faces. We are anticipating lots of good news today. 😊

I have another praise, as well.  Since we are in the step-down room, they allow two parents here, and Jeremy took point last night, so I also got to sleep. 😊

Life is good!
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God did it!!!

He helped us figure out the main problem causing a chain reaction of all other problems, and Liberty is finally at ease, sleeping peacefully and freely right now for the first time since her arrival!

I would be dancing right now, but I’m too tired.  Thank you, thank you, thank you all for constantly praying for her!!!

Good night!  Jeremy and I have some sleeping to do, too. 😃

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Would you like to know how wonderful our God is?  Let me tell you a story.

But I’m very, very tired, so I need to keep it short.

Liberty’s hard night was followed by an uncomfortable morning, and I was very surprised when the doctor announced she was ready to leave ICU for a step-down unit (which is a level of care between ICU and a regular hospital room.)  Thankfully, God had given us an amazing nurse who was able to answer all my questions and set me at ease over this move.  Unfortunately, Liberty became overwhelmed by the move and by a series of crazy circumstances that occurred one right after another right after another.  I told God, “It’s like she can’t catch a break.  What’s up with that, God?”

As the day progressed, and things continued getting worse, Liberty turned to me and said, “Mom, I’m struggling to hold back a panic attack.  Help!”

I tried several things, and finally lifted my hands in petition.  “God,” I said tiredly, “we can’t go anymore.  I need You to fill this room and fight for Your daughter Liberty.  Do something, please!”

I won’t go into details because I’m trying to keep this story short, but God began prompting people to reach out to her.

“Blessed is the man who perseveres when under trial, because when he has stood the test he will receive the crown of life that God has promised to those who love him. James chapter one, I'm not sure which verse.” came the first text.

It’s Not Over Yet came the link in the second text.

A man carrying Liberty’s lunch entered our room and asked Liberty how she was doing.  Her quiet answer caused him to stop in his tracks and turn his full attention to her.  “It will get better, Little Lady, just hang on.”

“Hang on to what?” Liberty asked.

“Hang on to God,” he responded.

Liberty’s face looked grim.

“That’s the only thing you need to concentrate on,” the man continued.  “Your only job is to hang on to Him with all your might, and let Him fight for you.  He will calm you, and He will get you through this.”  She thought about that and nodded.

A third text arrived immediately after the man’s exit. “Hang in there. God will get you all thru this.”

I had to laugh at God’s repetition to Liberty.  She smiled about it, and went digging for encouraging songs herself.  She landed on this one Fix My Eyes and listened to it over and over.

I’d like to say life got easier after that, but it didn’t.  In fact the things that happened next were almost comical in the “what else can go wrong?” category.  We began - not laughing, exactly - but at least finding some of the humor through our tears in these ridiculous situations.  And we hung on to God with determination.  Speaking bits of praise out loud here and there.

Please keep praying.


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I’ve been hesitant to post anything in detail since Liberty got out of surgery out of respect for her privacy and not being able to communicate well with her to find out what she would like posted on her condition.  But she had some lucid moments around 3 am, and she asked me to post some details so you all can pray.

1. Pain management: they haven’t really been able to get ahead of the pain yet, and she’s feeling like she can’t take any more.

2. Blood pressure: her blood pressure is still extremely low, and it is not the same on both sides of her body.  There is consistently about a 25 point difference.  I haven’t heard why that is yet, but I’m gathering that it is not something they expected.

3. Sleep: she has been non-peacefully in and out of consciousness all afternoon and night.  She actually got real sleep from 11:00-11:30 pm and 3:50-4:30 am, and she just fell into a good sleep a few minutes ago (about 5:40 am).  (I’ve had many interruptions while I’ve been writing this, and it is now approximately 7 am.  She slept about 20 minutes that last time.)

4. Fluids: her body is retaining fluid, and they have been trying to get that down because it is hard on her heart to pump against the pressure.

5. Breathing: she is struggling to breathe.  I don’t know if this is an after-effect from the anesthesia, or if it is caused by pain when she breathes which she has mentioned.  It is not significant enough for any extra measures to be done, but it is bothering her enough to request prayer for breathing.

I mentioned that around 3 am she had a bout of exceptionally clear thinking, and she dictated the following text to one of her friends.

“I hope you're feeling good because as much as I hate to admit it, I am not.  I almost hit my nurse, and I've been screaming and crying.  I've settled down now after a few hours of intense pain, and I'm constantly on pain medication. …

The IV is very hard because it causes extreme pain whenever they put something in it which is every hour or so.  If you happen to feel pain in your left back or neck or anywhere above your thighs that's probably [my pain.]

Also, the nurses want to get my fluid level down, so pray for that because it's really not good for my heart if I have too much fluid in my body.

That is some of the bad news.  Here is the good news.  
1. From my thighs down doesn't hurt, and I can move them with ease.  Well... not with ease, but I can move them without pain.  
2. I've got God with me and a bunch of people.  Mom is staying awake with me all night, and my good nurse named Jocelyn.
3. My chest hurts but not as badly right now as it has most of the night.  AND they are looking up to see what kind of pain medication they can give me right now for it.
4. …They gave me a heart shaped pillow that I'm supposed to hold a certain way to help with the pain.  I can breathe easier with it.
5. This is all temporary.
6. I'm ahead of schedule.
7. TV.  When my pain gets so intense and the medication can't cover it, I can turn the tv on and it distracts me a little to make it longer before I start crying.  A little bit longer.”

I will clarify that when she says “screaming” what she means is she cries out from time to time when the pain is sudden or more intense.  She is not actually screaming.  (Although, I probably would be if I were her.  Lol)

Her friend sent this verse back to her, and I watched peace as well as a physical change come over her as I read it out loud. "Do not be anxious about anything but in everything with prayers and petitions with Thanksgiving present your requests before God and the peace of God which transcends all understanding will guard your hearts and minds in Christ Jesus"

She smiled up towards the ceiling and then whispered to God, “Less pain.  More breathing.”  Those are her two most important requests.

And now, as I’m about to post this, she is requesting Bible verses from me. 😊

UPDATE: As I said, I’ve been typing this post off and on for a couple hours.  In that time God has enabled the nurses to get ahead of the pain, and Liberty is breathing easier.  She is happy!  And our nurse mentioned the fluid level is going down, so that is good too.

Hopefully, our hard night will turn into an easier day.
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This will likely be my last post for the night.  Liberty came through surgery just fine, but her body is struggling to work through the effects of the anesthesia as well as other side effects.  She *is* finally awake but keeps nodding off, and they are working to manage her pain levels.

Please pray her through the night.  This is all normal and expected.  She’s just processing the drugs slower than the average person, and she is getting overwhelmed by all the sensations.
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We are seeing good things now!  Took a while, but the right things got taken care of, and forward progress is definitely happening. 😊
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It’s only 2:45?  It feels like it should be at least 5 pm.  While we continue to wait in ICU for Liberty to come out of anesthesia, here are some photos from our trip down that I intended to post yesterday.

The kids at co-op made cards for her last Friday, and she saved them for the drive to the hospital on Monday.  She thoroughly enjoyed reading them and kept exclaiming and pointing parts out to me.  They brought her great joy.  Thank you to everyone who gave her gifts and cards and to everyone who texted with her yesterday.  You all helped immensely.


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Liberty’s surgery was successful, and she has been moved to ICU.

Keep praying for her emergence from anesthesia.  There are some concerns playing out right now.
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 I've discovered a new source of water, and it tastes good.

They are calling maintenance to figure out why it is so hot in here.

God showed me what to start praying for my waiting buddies.

I remembered that I brought Christmas presents to work on.

Hooray!  God is very kind to me. :-)

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 Well, my friends.  Now I am just passing the time.

I've put a pretty new autumn theme on my web browser.  Well, Jeremy did that because technology and I are not friends.

I've tried my very best to figure out how to get my comments and photos in this blog's side bar to work correctly, and so far I've failed miserably.

I've read Acts 3 for the third time this week.  (Some cool things I want to tell you about that later.)

I've gone through my emails and unsubscribed to fifteen thousand things.

I finished 32 ounces of water about an hour ago, and the water here does not taste like my water at home.

This waiting room is uncomfortably warm.

I've discovered that I did leave a couple books at the hotel that I'd like to be reading right now.  I intentionally left them there thinking I wouldn't have the focus to read anything, and now here I am with time on my hands.

Jeremy woke up, and we've had quiet little mini-discussions about life things.  It's hard to have real conversations because other waiting people are in earshot.

Speaking of other waiting people, the nearest family has had several entertaining conversations.  Right now they are discussing the oily-ness level of their hair, but their morning has covered lots of family drama, Britney Spears' new freedom from her conservatorship, lost earrings and where they have been found, surprise sisters they did not know existed that arrived on their doorstep, and other fun subjects.  I have been moved to pray for them, but so far I'm not sure what to pray.  So will you all please pray for them as well?

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Here is how God has answered our prayers from last night’s post:

1. We got to the hospital on time and with ease!  Hooray!  That may have been my biggest fear for today, and God took great care of that.

2. Liberty has zero fear today.  She is full of joy, and every concern she has expressed this morning has been addressed wonderfully by the staff.

3. They are trying a different anesthesia and have a plan in place to help her quickly if this new one gives her seizures as well.  Keep praying about that, please.

4. Keep praying for the surgeons and team.

5. Keep praying for the people God wants to minister to through all of us.

6. My muscles stopped tensing last night, and they have been loose all morning so far!  My migraine is gone as well!  Extreme happiness for me!

7. I don’t *think* we’ve forgotten anything??? 😁

8. Mercy and VeeVee sounded extremely happy on the phone last night.  VeeVee, my clingy girl, even got off the phone in the middle of our conversation because she would rather play with her cousins!  That was such a relief to my heart!  The cousins are also homeschooled, and Tuesday is their co-op day.  My girls are thrilled to get to see their cousins’ co-op and join in on their learning fun.  Mercy’s only concern last night was that she was going to be the only girl in a class of boys today, but you could hear a mixture of pleasure as well as dread in her voice.  Liberty teased her on the phone about it, and then got to have fun joking around via phone with all her cousins.

9. We were all in bed around 8 pm, and Jeremy fell asleep around 8:30 last night.  I didn’t fall asleep until around 2 am.  The room was hot, and I just didn’t feel right, but my muscles had stopped cramping, so that was wonderful.  When I woke Liberty up this morning she had a small stack of thank you notes made for everyone who would help her while she was sedated today.  She said she made them in the night because she couldn’t sleep.  She also says the one thing besides getting rid of this pain in her heart that she is looking forward to from the surgery is getting to sleep.  So hopefully we are nearing the end of our sleepless nights.

I woke this morning at 5 am and smelled wonderful smells coming from the kitchen.  Jeremy had woken up at 4:30 am and operated in his love language - food.  He cooked breakfast, lunch, and supper for us and packed it for the hospital.  I just ate breakfast before starting this post.  It was yummy!

This was Liberty this morning right before surgery.

And this is Jeremy now.  He is sleeping.  I have no idea how he can sleep anywhere and everywhere.  I wish I could do that!


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Well, what we were hoping for - miraculous healing without a surgery - did not happen today.  Liberty says she is glad for that because she was looking forward to all the new people she’s going to meet during her stay in the hospital.  Plus it’s always fun to have a new adventure in life, and neither of those things would happen if God healed her early.  I have to admit, I am also excited about the week ahead and finding out who God has for us to minister to and be ministered by.

God arranged for her surgery to be laparoscopic (well, thorascopic, if I’m spelling that right).  Pray for the surgeons because this will be their first time using the thorascopic instruments in a surgery like this.  She has two surgeons, one has done this type of surgery many times but never thorascopically, and the other has done many thorascopic surgeries, but never on the heart.  It turns out Liberty’s body and healthiness is just perfect for someone to learn on.  That is really cool, and Jeremy and I have complete peace about this turn of events.

Liberty would like to report a praise that God did for her today.  She has sensory processing issues, and they were trying different things today to get her blood drawn without too much tragedy.  In the end, the surgeons decided they would simply draw her blood tomorrow while she is sedated!  Liberty is overjoyed!!!

Oh yes, she insists that you all get to see the cool dragon scale tiles at the hospital.  They make her smile every time she sees them.


Things to pray for: 
1. Us to get to the hospital on time (6 am 😩)
2. Her fear level to stay low, and her trust level to stay high
3. For her not to have a reaction to the anesthesia (the last one gave her seizures)
4. God to guide the surgeons’ hands and brains
5. For all of us to be able to love the people around us in the hospital well
6. For my muscles to stop tensing up painfully
7. For us not to forget anything that we’ll want to have with us tomorrow
8. Mercy and VeeVee to continue having a wonderful time at their cousins’ house 😊
9. Good sleep tonight for all
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I need to brag on my husband for a minute.  He takes much longer than I do to process any new twist in life, and it has taken me way longer than it should have to learn to give him the space he needs to think and adjust.    But I have finally learned.  Hooray!
  

I have learned that he makes my life so much easier because he can see big picture things that never occur to me.  In this case, he took care of all the financial aspects of this situation, all the logistics of our stay, and all the arrangements for food and getting there.

That left me able to focus completely on Liberty, Mercy, and VeeVee’s needs, which was wonderful for me.  

But he didn’t stop there.  He surprised both Liberty and me by whipping out Mr. Smiley today when Liberty was struggling during one of the tests at the hospital.  Jeremy purchased Mr. Smiley 15 years ago to take to the hospital when I was giving birth to Liberty, and Mr. Smiley has come to the hospital with me for every birth since, and for my gallbladder surgery, and for my brain injury stays.  I cracked up when I saw that he had come for Liberty’s hospital excursions, too!


But Jeremy’s amazingness didn’t stop there.  After the entire L-O-N-G day at the hospital, he came home (to our hotel) and unpacked the groceries and made supper for us.  Feeding people is something he excels at, and I am so thankful.



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“Contact has been made, and the packages were dropped.”

We met Uncle Nate and Trinity in an empty parking lot and said goodbye to Mercy and VeeVee for a while. 💕




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Road trips are my favorite no matter the reason! 😃



Thank you for the coloring book and gel pens!  Liberty is coloring 1 Corinthians 13:4-9 😊


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We are on the road to the hospital and mostly on time.  We had a peaceful last minute panic packing this morning, and usually morning panic packings are NOT peaceful, so THANK YOU for your prayers! 

We’re getting an echocardiogram and a bunch of tests this afternoon, and then meeting with the surgeons and the entire team to discuss the findings and the plan for tomorrow.

Surgery is scheduled for Tuesday at 6 am.

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Liberty is excited.  No fear for her at all.  She has lived with intense pain for 15 years, and the pain has ratcheted up exponentially in the last six months.  That pain that I always attributed to heartburn turns out to be her actual heart, and she is thrilled at the prospect of surgery because it means no more pain after she heals!

Jeremy took several days to process all the information coming to him and to work through the initial fear and trembling at the thought of releasing his baby girl into the hands of unknown surgeons, and now he is running point on all the logistics of getting us there and back, where will we stay during the surgery (we still don't know anything about the surgery or how long it will take or how long she will be in the hospital afterwards), dealing with insurance pre-approvals, and all that.  

My job is to stay on top of communications with the hospital.  That is a full-time task all by itself because THEY WILL NOT COMMUNICATE!  So frustrating.

But God.

I have to calm myself down.

I found myself struggling with Mom Guilt last night and this morning.  Beating myself up at the stupidity involved in mistaking heart pain for heart burn.  We've been reviewing Liberty's symptoms and realizing all the times over the years when she has stopped playing because she couldn't catch her breath.  Not your average out-of-breath, but full on almost heart-attack-like symptoms, and I just said to her, "Take a break.  Rest.  Relax."  What kind of mom doesn't realize her kid needs heart surgery, anyway?  After FIFTEEN YEARS of evidence!?

Me.

This mom.

I didn't catch it.

I sent this text to my friend Jane: "All this time I have been translating her pain to 'heartburn,' but it is much much more than that.  She doesn't actually have acid reflux.  She told the doctors she constantly feels like her heart is exploding.  She can't find a comfortable way to sleep at night because she hurts so badly, so she hasn't slept for most of this year, and the doctors confirmed that was an accurate description.  I feel like a horrible mother.  She has been saying this to me for years, and I just changed her diet or gave her a heartburn pill.  My poor baby!"

She texted back: "You had no idea of what really was happening, so don't beat yourself up.  You are the best mom for her and Mercy and Vee!  God did not give you X-ray eyes to see what was happening, just like He didn't give me neurological wisdom to know what was going on with [my child].  He gives us what we need today, our DAILY bread.  Today, that looks like being on the doctors' discussion plans and 'patiently' waiting."

Peace returned to me, and I had to laugh at her quotation marks around the word patiently.  How well she knows me!

I'm so thankful God surrounds us with friends to speak truth into our lives.  Keep praying for us, my friends.  We are all needing your prayer support!