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. 😊

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.

Pray for full success.

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)

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.

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!

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.

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! 😃

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.

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.

 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.

Liberty asked me to post this song.

Truth I’m Standing On

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.

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!

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.

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.

 She is being life flighted.

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. 😃

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.

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.

 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. :-)

 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?

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!

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!

“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. 💕

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.

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!