Today was a good day...

It's been a good day. We took naps. We watched The Blacklist (so good). We talked to Camp and Grahambo. We even went out to dinner. I think we all needed to get out and feel normal.  Today just felt normal.
Today was a good day.
Praying for sleep and sweet dreams for a tiny #hucknation.

Home away from home

We are out of the hospital and recovering perfectly at the home of our sweet friends the Taylor's. We are so grateful for a place so close to the hospital to give us one more night if fever-free before we head back to east TN. As you can see, huck has made himself right at home. ;)

Good Morning...

Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don't give up.

-Anne Lamott-

It is incredible how new the morning feels.

This boy.  He is amazing.  The fever broke in the middle of the night.  He woke up playing and smiling and acting like Huck.  It has been a wonderful thing to see. 

We just spoke with Dr. Fish and we should head out of the hospital this morning.  That is a really good thing.  Huck is over the wires.  And the beeping.  And the constant assessments.  

Today feels more like hope.  Hope feels like a little boy doing gymnastics in his bed right now listening to the Boxer Rebellion.  Hope feels like Dr. Fish reminding us this morning that Huck does not have Wolff Parkinson White anymore.  Hope feels like sharing a twin hospital bed with Daniel and feeling so safe and loved.  Hope feels like a God who never lets go.

The work isn't done.  Hope is a us warring against our fear constantly.  Hope is remembering what my dear friend Tom emailed me this morning...that God is trustworthy even when things are confusing and hard.  

Thank you for your prayers and messages and love.  I feel like the luckiest girl in the world.

Thoughts From a Dark, Quiet Room on the 6th Floor...

 It sure has been a long day.  I'm the only one awake in this dark, quite room on the sixth floor.  Deep long breaths from two of the best men alive, one with a giant beard and the other a tiny heart.  I am not sure how much I have processed today.  I keep saying it has just been a roller coaster.  One minute it is good, good news.  The next we are in tears and afraid.  Repeat.  Repeat.  Repeat.
I do not know what was hardest about today.  It was hard to leave him in the nurse's arms for surgery. It was hard to wait on phone calls from the doctors and nurses.  It was really hard to hear that they didn't find a pathway to fix.  It is hard to think that our next step is just waiting to see if Huck will have another episode.  It was hard when his fever got so high and he was so miserable.  It was hard when we went back to recovery and saw our scared little boy with a big bump on his chest full of a monitor that he will wear for four years.  It was hard to watch Daniel cry through my tears as we literally felt the fear we had in our hands as we rubbed them over the bump.
I do not know what was best about today.  Maybe the morning, singing to my boy songs of hope and glory.  Maybe it was my family that is always there no matter what.  It was so good to walk out of the  surgical area and see what looked like Kyla's head and cry the happiest tears when I was surprised that it really was Kyla's head.  It was good to find out that my boy does not have a pathway that needs to be fixed.  It was good to trust Dr. Fish.  It was good to remember who God is when I am afraid.  It was good to rub my fingers over the bump in Huck's tiny chest and be reminded of where we have been and hope for where we will go.
Today has been so full of information...medical and emotional and spiritual.  The good and the hard have been so swirled together that it is hard to begin to understand what I am feeling.  Or thinking.  Or fearing.
But God...rich in mercy has drawn us to him more deeply and more fully than yesterday.
I have been reading Mark 5 a lot lately, where Jesus heals the daughter of a man named Jairus.  But before he brings Talitha back to life, there is a moment for Jairus when he finds out his little girl is dead.  When the hopes and the dreams that fill a father come spilling and crashing to the ground.  In that moment Jairus looks to Jesus and Jesus says only one thing:  "Don't be afraid.  Just believe."
For the next four years, my son will have a bump in his chest.  It will get harder to see as he changes and grows.  But one layer down, under his pale skin will sit a reminder of the God who knit his heart together, who drew us in, and who rescues even us.  A reminder that I will see every morning as I dress my boy to offer the invitation into a life of adventure, just as he did to Jairus:  Don't be afraid.  Just believe.

“I want to write something

so simply

about love

or about pain

that even

as you are reading

you feel it

and as you read

you keep feeling it

and though it be my story

it will be common,

though it be singular

it will be known to you

so that by the end

you will think—

no, you will realize—

that it was all the while

yourself arranging the words,

that it was all the time

words that you yourself,

out of your heart

had been saying.”

-Mary Oliver-

Still fever-ing.

Huck's fever isn't coming down quite very well. Trying some new medicine. He ate so much macaroni and cheese though! And...even
playedwith us for a minute. Then he started feeling awful and so the cardiologist has just visited and written for new medicine. Praying we can get his fever down!!

Fever....

We are settling in the room but sweet Huck has spiked a 103 F fever. They've given him medicine and are listening and watching him very closely. They tell us this can be normal after surgery. Please pray the Tylenol gets this fever down!  Around 6:30 we will get him up and he can try to eat (cheese of course!) and maybe cough up some of the goop making his lungs sound so crunchy. (Official medical terminology haha) for now he is in and out of snoozing and not wanting to let go of GiGi's hand. I think that is ok with GiGi.

Recovered + Room Sweet Room

Sweet boy. Yhe anesthesiologist out him back to sleep for a little while and he woke up much happier. He pounded two sippy cups of juice. Sweet sweet boy. And....in really good news.... We have a room!!!

Recovery....

We are in recovery! He woke up very grouchy and wiggly and they decided to out him back to sleep for a little while longer. He's snoozing away. Please pray he can wake up more calmly when they try again in 30 minutes. He has to keep his legs still for 4-6 hours. The impossible task for a one year old.

Another update...

We met with Dr. Fish again. I love him. He's so great. 

The loop monitor is installed. Apparently it is very big and noticeable. Luckily he's too little to be self conscious and he will grow into it before he is. We will probably tell Campbell and Graham that he is part robot now.  

This meeting felt much better than the other. I feel less back at square one and more like we are working on a plan. As wonderful as it would have been to have had an "easy" fix it just might not be where we are. Huck might be healed forever. Or he might have some heart thing that takes a little more time and exploration. 

What I know is that just because news is hard doesn't mean it isn't good.  And good news is sometimes scary and hard. And all the while there is a creator who exists in both. And he...he is good.

“Aslan is a lion- the Lion, the great Lion." "Ooh" said Susan. "I'd thought he was a man. Is he-quite safe? I shall feel rather nervous about meeting a lion"..."Safe?" said Mr Beaver ..."Who said anything about safe? 'Course he isn't safe. But he's good. He's the King, I tell you.”

-C.S. Lewis, The  Lion the Witch and the Wardrobe- 

*artwork by Lily Farner

Good news. Hard news.

We just spoke with Dr. Fish in a conference room.  Sweet Huck has no evidence of Wolff Parkinson White.  It seems that what we prayed for weeks has happened...that he has grown out of this scary thing.  This is good news.
It is also hard news. And scary news. Because WPW can be fixed. Zapped. Ablated. And it is over. But instead I feel a little bit like we are back at square one.  That my boy sometimes stops breathing and we don't know why.   Dr. Fish seemed surprised not to find any pathways and discouraged not to be able to offer us a solution. Daniel and my parents and Drew and I sat in a room with him  and it did not feel like good news.  It felt like scary news.
Our next step is that Dr. Fish will implant a loop monitor in sweet little Huck. It will record every beat of his tiny little heart. He will be in surgery a little while longer and then we can see him.  And squeeze him and kiss him. Drew said he will be like a robot with his new hardware.  We will definitely tell his brothers that.
And then...we will wait.
For answers and for peace and for hope. I can see glimpses of those things...my aunt Becky whispered words I want to be true so badly. That this is good news and he is a healed little boy.  I did not understand how real the verse I posted an hour ago would feel.  I quite literally have no idea what to do...how to feel...what to think.  But I know where I will look.  I know where hope and life and rescue are found in this life.  I will look there. To the one who makes hearts and heals hearts and rescues hearts.  I will look there.

It begins....

We just talked to one of the nurses in Huck's surgery. He is fast asleep and catheters are in place. They are ready to start exploring. 

Please pray. Please pray they can get his heart into SVT. Please pray they can easily find the pathway. Please pray that they can ablate it. 

I've been in 2 Chronicles 20 all week (thanks Brooke) and I'm just crazy about verse 12. Jehoshaphat and his army have a giant horde of armies coming after them and they are confused and afraid. He says, " we don't know what to do so we will keep our eyes on You." It is where my heart is and where my prayers are....for Daniel and I and our family sitting in this waiting room.  Because, to be honest, we have no idea what it do. For Dr. Fish in the OR as he makes decisions and discoveries and acts on them. 

And for sweet Huck....dreams of adventure and cheese and angels singing over him. 

In the operating room....

Huck is officially in the operating room. The nurse anesthesis, Lewis carried him back. Huck was in heaven with all of the doctors and nurses giving him attention. 

It was easy to leave him in their hands but hard to walk out the door. I'm so thankful for the doctors and nurses. I'm thankful for what this surgery could do for Huck. I feel like I could cry at any second because I am so grateful. And mostly for a God who made huck's heart. Who holds him near. Who quiets his heart and quiets our hearts with his love, rejoicing over them with singing.  (Zeph 3:17)

We walked out the doors, full and fearful hearts and teary eyes into a waiting room with some of our dearest people. My parents and drew and Molly, my friend/aunt Becky and my dear friend Kyla. Chai tea and biscuits and tears and prayers. A phone full of messages and texts. We are so loved and I am so grateful. 

Getting ready...

We are back and getting ready. Huck has some new Jammies and some great toys. When they checke his heart rate it was 236 at one point. We are in the right place at the right time.

We spoke with Dr. Fish. He will alter his approach a little bit after some thought, skipping the non-invasive and going straight to the invasive approach. We met our anesthesiologist next who we all three adored. He carried huck around the halls introducing him to the other doctors and Huck loved it! He told us he has never seen a physician as skilled and smart as Dr. Fish. He told is probably five times that we were in the right place with the right people. We are so grateful! He will go back in ten or 15 minutes. 

Checked in.... Let's go!

Waiting for them to call our name!

Wide Awake It's Mornin'

5:30 am came early. Huck is up an at 'em. He could have clear liquids until six so now it is just wrestling in the bed with Papi until it is time to leave.

Dr. Fish

When we first talked to Dr. Liske, our cardiologist about the ablation surgery he told us that if it were his child and he could pick anyone to do this surgery he would choose Dr. Fish. Dr. Liske even called Dr. Fish himself and asked him to do Huck's surgery.
We spent a few hours in Dr. Fish's office last Monday and we just think he is definitely the guy. Here's a great video highlighting what he does in electrophysiology and also his musical interests. Which you know we love.

https://m.youtube.com/watch?v=uyk-7jutBC0&desktop_uri=%2Fwatch%3Fv%3Duyk-7jutBC0

huck's heart

We decided to start a blog to keep you updated on huckster heart surgery tomorrow.  The highlights:

• What?  Huck has Wolff Parkinson White Syndrome.  Basically h so heart has an an extra pathway that causes some big trouble for him.
• How did we get here? Huck has had three episodes where he has stopped breathing, passed out and had a crazy high heart rate.  After the last episode our wonderful cardiologist in Knoxville, Dr. Liske, consulted with a former colleague at Vanderbilt and decided we needed to see about Huck having an ablation surgery.  It is not a normal course of action for a child so young, but Huck's risks of waiting on this surgery far outweighed the risks of the surgery.
• What is this surgery?    Basically, one of the nation's bests electrophysiologists, Dr. Frank Fish, will use a vein in Huck's leg in order to study Huck's heart through a cardiac catheterization in order to locate the trouble are and ablate it.  It will take about four hours.  If they are able to locate and ablate the accessory pathway, there is a 90-100% chance Huck will be healed.  Holy smokes.
• Where are you and how long will you be there?  We are in Nashville at Vanderbilt's Monroe Carrell, Jr. Children's hospital.  If all goes well we will be here until Tuesday, then will spend one more night in the Nashville area to make sure all is well before we head home.

If you pray, we are asking everyone we know to pray for our boy.  He is so great. And we know that, as scary as this is, it is the right move for him.  Please pray for his little body and little heart as he is put to sleep and his heart is tested in crazy ways.  Please pray for Dr. Fish and his staff...for wisdom and discernment for them.  Please pray that the pathway is there, that it is easy to find, and that Dr. Fish is able to ablate it without damaging Huck's heart.  

Thank you for loving our boy.  Campbell, Grahambo, Daniel and I can't believe how deeply loved we are.  

Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory forever and ever. Amen.

Ephesians 3:20-21