Wylie’s 2nd Homecoming (photos)

Thank you Guinever VanCampin for taking these great pics yesterday!

Happy 4 month old birthday Wylie!

Guess who is four months old today!!??  

Happy birthday Margaret Wylie Duerson! 

We can’t thank everyone enough for all the love, prayers, and support that have been showered on our family and from all of you! - Gavin 

Allowance

I don't know how long it lasted, but it seems like weeks looking back on it.  I held my tears at bay until I absolutely couldn't.  When they came, I realized that I had pushed them down for a reason.  I figured, "If I cry, it means I have lost hope for Wylie."

Tissues later, I knew these tears did not carry that meaning at all.  My tears were tears, that's all.  They revealed that we are under a colossal amount of stress.  They displayed my love for Wylie and my desire for her to get better.  Then after they were out, I felt so much better.

I've allowed them to return as needed.  Well, almost.  I wanted to cry when I was allowed the opportunity to hold Wylie.  I was overcome with excitement and gratitude.  I did not cry then, though.

I had pictured myself holding her when she was all healed and happy.  I figured then it would be the right time.  Yet, in the midst of the messiness of figuring out her tears, the beloved nurses and doctors placed her into my arms.  That was a surprise.

I held her and wondered how to answer her tears.  I looked at the monitors and screens.  I was clueless.  I did learn something after some time of sitting there holding sweet Wylie.  Just like my held tears, holding her had an unexpected meaning.  I thought I would hold her once it was all better, then I found that holding her actually is a part of healing for both of us.

All of it is messier and harder than I would ever choose.  Sometimes it really feels like too much.  But we can't have Wylie without the crying and the mess, so we allow the crying and mess because it means we get to hold Wylie and heal together.

On Being

Our little Wylie has a body.  She has a mind.  She has a soul.  Just her being Wylie delights me.  I love the way her skin smells and the feel of her sweet, fuzzy hair.   I love the way she sticks her legs out when she stretches.  I love her tricky eyes that don't always close when she is sleeping. 

There are a lof things Wylie cannot DO.  I haven't seen her smile yet.  She can't turn over, sit up, or talk.  Our relationship, in a lot of ways, is one-way.  She doesn't do anything for us.  Simply her "being" has created an eternal love relationship.  She cannot undo our love by anything she does or doesn't do, including getting sick or getting well.

I know I am not alone in my affection. Through her just "being" Wylie, she has endeared hundreds of hearts.  What a wonder!  A baby who just IS having such a big impact.  Thank you, God, for the gift of the human being, Margaret Wylie Duerson!

Updates from “Wylie’s Warriors”

These are the last two posts from Wylie’s Warriors support group on lotsahelpinghands.com.  That is the place we are posting most of the medical updates.  Feel free to join the group by clicking the link on the right... Because of the events of the past couple of days, I did want to post them here as well... 


Aug 1
Friends.

Wylie has had three attempts to vent a pneumothorax that continues to develop around her left lung.  This is essentially a large air pocket that if not had been vented correctly would have ended her life.  The third attempt we asked you to pray for this morning seems to be working better but it is uncertain if it will continue to prevent another air bubble from developing.  Right now Wylie is at rest and stable.  Our prayer is that she can stay this way and over the next few days her lungs can heal (the hole causing the pneumothorax and the infection in her right lung). We thank you so much for being able to join us in this prayer.

The hard part of all this is that if it doesn’t prevent another hole from developing there are really no other options that the doctors are comfortable with—except for one dealing with her breathing tube, which we would likely try.  However, this was presented as sort of a last attempt if we had to do it.

These conversations have obviously been very difficult today.  We know God is in charge and are trusting Him with all we have.  We continue to pray and believe that we will bring Wylie home soon; yet, we are not nieve to the reality that the entire situation is very fragile.  Thank you all for so much support and continued prayers.  Wylie can use them now and through the night more than ever.

- Gavin

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(This morning ) 
Friends. 

First, Wylie had a great night of rest. Karla was able to help her in the room when she woke up which she loved.  We all also got to sleep.  The room is very peaceful.  We are hopeful that with rest and time we will see her lungs start healing.  The x-ray of her lungs today was similar to the previous one.  Her problem is not worse!  We can’t thank everyone enough for all your prayers. This verse was shared with us and it rings true in our hearts as we see so many of you surrounding us...

“When the servant of the man of God got up early and went out, he discovered an army with horses and chariots surrounding the city. So he asked Elisha, “Oh, my master, what are we to do?” Elisha said, “Don’t be afraid, for those who are with us outnumber those who are with them.” Then Elisha prayed, “ Lord, please open his eyes and let him see.” So the Lord opened the servant’s eyes, and he saw that the mountain was covered with horses and chariots of fire all around Elisha.”
‭‭2 Kings‬ ‭6:15-17‬ ‭CSB‬‬

You all really are her warriors! 

- Gavin

Thoughts on Rest

I am beyond appreciative for this peaceful time of rest we have enjoyed at home with Wylie. I have not always been able to enjoy rest.  By rest, in this case, I mean actually sitting or lying in a position of wakeful relaxation without necessarily being on the phone, reading a book, or really doing anything other than breathing, digesting, and thinking.

With Wylie, there is much to do.  We have kept a similar rhythm we began at the hospital.  We check her diaper to wake her up before offering her bottle every three hours.  Every other feeding time, she has vitamins and medicines.  We do our PT stretches, read, listen to music and talk during happy alert times.  We clean and dress her g-tube site daily.  We have to start a new bag for her feeding tube pump.  We sit with her or hold her while the milk she couldn't drink from her bottle goes into her belly.  I pump breastmilk for her a few times a day.  There is a plethora of washing to do--clothes, bottles, syringes, breast pump parts, etc.  There is a lot to do.

Even still, there is also much time to sit in stillness.  With all the help we've received for the children, I've sat a whole lot more than I have in a LONG time.  During this break, I've contemplated my relationship with rest.  In the past, rest, for me, has looked like laziness.  It has also looked like weakness and a waste of time.  Since then, I've been confronted by wise, older friends and illness.  These interruptions changed my mind.  I realized that I can't do everything (even if they are good things), I need to take breaks without my kids, and if I don't rest, I will get sick.  A question actually gave me the incentive I needed to change my thinking and my habits. "If my girls follow my example as a wife and mother, will they be healthy and happy?"  The answer in my mind was, "No, their lives would be out of balance.  I want to provide a different example."  

At that point, a picture emerged in my mind.  I saw myself in a rowboat pulling frantically on the oars.  This picture represented the way I worked.  Hurry and perfectionism typified the way I checked off my to-do list items.  Not only did I carry on this way, but I would try to pull my family into the same boat.  I wanted them to be straining and striving along with me.  Ouch!  This was not a pretty picture!

Now, when I feel myself climbing into the boat or dragging reluctant seamen into my vessel, I stop, because rest is something good and helpful.  It disarms.  It makes room for imagination.  It strengthens the body and mind.  It stops spinning wheels.  Rest is not lazy (it's actually pretty hard to do), weak (it does take mental and emotional strength to refrain from working), or wasteful (rest provides true benefits).  I'm glad that rest and I are friends now.  

A verse that I've always really liked has resurfaced:

This is what the Sovereign LORD, the Holy One of Israel, says: "In repentance and rest is your salvation, in quietness and trust is your strength, but you would have none of it." (Isaiah 30:15)

That was me.  When it came to rest, I would have none of it.  Now, maybe I can have some.  Thank you, Wylie, that makes another gift you've given your momma.  

Tiny Teacher

Friends, I wrote this blog entry last week in honor of my friend, Maria.  The message rings true today as we wait with Wylie in the NICU for her body to rest without food...

When Gavin and I learned that Wylie likely had Trisomy-18 we wondered if we would be able to find doctors.  Based on our reading about the disorder, we discovered that healthcare providers don't always offer every intervention to children with Trisomy-18, still considered by some as a lethal abnormality. 

In our case, we did not have to wonder very long.  Our conversations began with Baptist Health's high-risk OBs and palliative care team before being transferred to the University of Kentucky.  Wylie's health, even at that time, caused pause.  She lacked many of the problems that babies with Trisomy-18 encounter.  Did she have mosaicism?  I remember one of the doctors at Baptist recommended we ask the UK Team to take every measure at her birth to save her life.  I remember the gratitude swelling in my heart when she said so.  She believed that Wylie had a chance.

We had a very smooth and positive transition to UK.  We met with many providers.  They all told us the same story when we wondered aloud about Wylie's future.  They emphasized, "She will tell us.  We will give her what she tells us she needs."  Again, my heart soared.  That was our hope--that Wylie would be seen and heard and treated as she was, not just based on the label of her possible genetic disorder.

Their story was not fiction.  That story was true.  Through non-stress tests and ultrasounds when Wylie was in the womb, through the process of her birth, and in the many days that followed in the NICU, Wylie communicated with us.  She told us she was happy inside me until the umbilical cord flow from her to the placenta slowed, and then we knew she was ready for fresh air and different cuisine.  She tolerated labor until she didn't and let us know with heart decelerations during contractions.  Her face was presenting.  She needed a cesarian and one was given.  Wylie breathed and then ate and then let us know she needed help with the eating, so we gave her a G-tube.

Each step of the way, the most brilliant, talented, skilled professionals attentively put their eyes, ears, hands, hearts, and minds on a four pound eight-ounce neonate.  The only agenda that I witnessed among them was to respond well to her communication.  You can't imagine what it was like to be in the room every morning with the rounding group of providers gathered for a tiny baby.  The health care providers didn't do things TO Wylie, they accomplished things FOR Wylie.

I have realized my skepticism.  "Sure, listen to Wylie.  She will tell us what she needs."  Does a baby really have that much power or ability?  Surprisingly for me, the answer is yes.  She does.  

This is how one of my favorite authors, Ann Voskamp, put it,

"Sometimes, we try to manipulate hearts to beat the way we want — rather than letting people’s hearts communicate what they need. 

And I'm with you, it really does take a lot of courage just to listen to a heart — exactly as it is — and not try to manipulate its beat.

And it's so tempting to drum our thinking into others — instead of letting people march to their own drum.

But I must remind myself and put this on repeat -- We get to be like Jesus to people as they march to their own drum. And it’s only Jesus who gets to change drums."

This is the Jesus I am getting to know:

“He will not quarrel or cry aloud,

     nor will anyone hear his voice in the streets;

a bruised reed he will not break,

     and a smoldering wick he will not quench,

until he brings justice to victory;

     and in his name the Gentiles will hope.” (Matthew 12:19–21)

Through Wylie, God has given me a life-altering picture of what it is to really see, hear and respond to a person.  I want to be like Wylie's team who listened with the purpose to provide, to support, to uphold her life.  What a wonder when a person listens, like God does, only to help, not to force or to find an angle.  And the life that emerges?  Wow!  Wylie is thriving!  

Receiving Wylie

Celebration is the acceptance of life in a constantly increasing awareness of its preciousness. And life is precious not only because it can be seen, touched, and tasted, but also because it will be gone one day. When we celebrate a wedding, we celebrate a union as well as a departure; when we celebrate death we celebrate lost friendship as well as gained liberty. There can be tears after weddings and smiles after funerals. We can indeed make our sorrows, just as much as our joys, a part of our celebration of life in the deep reality that life and death are not opponents but do, in fact, kiss each other at every moment of our existence. --Henri Nouwen

I have never received a gift of which I am more afraid.  Wylie was not born into my arms.  She was born into the hands of doctors who pulled her from my body and onto tiny beds with machines as Gavin and I held our hands together without knowing if she was coming or going.  I could always imagine good-bye more easily.  Yet, Gavin held her body and announced, "She is breathing, Kar.  She is breathing."  I reeled.

A few long hours later, on May 8th, she was placed into my arms.  I did not know how to hold her.  She had tubes and cords and leads springing from her.  In my disbelief, I cradled my daughter gently.  All the while this constant prayer flowed silently from my heart, "How, Lord?  How do I hold her?"

Instructions have come--daily ones.  "Ascribe to the LORD glory and strength," "Sing to the LORD a new song for He has done marvelous things," "Worship the LORD with gladness," "Remember the miracles He has done."  Each moment I have one thing I know to do directly from the Psalm I read as my bread.  With her tiny body and amazing overcoming, Wylie has brought a deep sense of the present.  I do not dare leave it.

Also, there are hands, so many hands!  Family, friends, nurses, technicians, doctors, social workers, dieticians, volunteers, clerks, neighbors, so many people hold us.  We would fall--Gavin, Wylie, our other children, me.  We would crumble if it wasn't for the grip of people who carry our burdens and meet our needs.

I am learning to hold Wylie.  I hold her to comfort her, to feed her, to burp her, to carry her.  What joy!  She is a wonder to behold!  Though she is less than five pounds, I tremble beneath her weight.  This small person is carrying the glory of God--His image--into our world.  She is like the break of day.  Her small light dawning changes my whole sky.

Welcome, Wylie.  Our good God has brought you as a perfect gift.  May you always know His closeness and love as you stand strong in the work He has for you.  We are so proud of you--in awe, really.  You are truly miraculous.

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For progress updates check out Wylie's Warriors on Lotsa Helping Hands: 
https://my.lotsahelpinghands.com/community/wylies-warriors/home
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Today Wylie is 4 Weeks Old! 

A Reflection by Kristy Wheeler

The words from “How Great thou Art” keep resounding.  “I scarce can take it in.”  I knew we would see God in Wylie’s birth.  As we see Him, I stand in awe, amazed.  I haven’t found words yet to capture all we have seen, but my friend Kristy Wheeler did.  She and her husband, Matt, kept watch as I labored and as God broke into this world through Wylie’s life.  With her permission, I share her words:

So much LIFE.

Waiting room filled with friends with stories upon stories of LIFE lived together. People trickle in and out, hugging, holding hands, laughing, remembering when and awaiting Who.

Stories of births, of adoptions, and of brokenness in the world and its systems… oh, but the beauty of LIFE.

Waiting.

Waiting.

Friends trickle in and out.

Waiting. 

The call goes out, the water has broken, the baby is coming. Family hustling in with concern etched on their faces. Feelings of intense urgency when there is nothing that can be done. 

Her heartbeat slows.

Where is the doctor?

Where is the Doctor?

Her heartbeat regains its rhythm. LIFE.

Waiting.

Waiting.

Praying.

Creak of the double doors being released. A room fills with children with tousled hair, with sleepy eyes, with questions and wonder as they wait for their new sister, for their new cousin. LIFE.

Prayers.

More prayers. 

LIFE.

Finally she's here; 

The whole space is full of PRAYER, of JOY, of FULLNESS. The promise of eternity swirls among us and rests... here among these people... within the little one who has enthralled us all... LIFE.

Wylie’s Warriors

First of all, we can not possibly thank everyone for all the support and encouragement we continue to receive!  My heart is full of gratitude...  For Karla.  For the UK Children's Hospital and staff.  For family. For so many wonderful friends.  For a loving God who knit Wylie together and has a wonderful plan for her life--a plan to give her "a hope and a future!"

I sat in the NICU room beside Wylie this morning overwhelmed and in awe.  What kind of world do we live in where I can drive two miles from my front door and walk into a place where the best and brightest minds and the greatest technological advances money can afford are standing by to do everything they can to help a tiny, 4lb 8oz child with genetic complications survive and thrive?  In the past 48 hours, Wylie has had every type of specialist imaginable stop in to check on her, scan her, and explain to us how “surprised” they are that she is doing so well.  Even more, they let us know they are prepared should something change!  Yes, we live in an amazing time in human history and in an amazing country!  Most of all, we live under the care of a God that is mysterious and powerful: listening to and acting on our prayers!  One of our biggest prayers was that she would breathe on her own and that happened after birth!  Today, "more than we can ask or imagine"... she nursed!  Another big prayer was that she would come home.  I trust that will happen in the coming days! 

Below is a link that friends have set up to keep folks updated on progress and ways to help with food etc.  We are super grateful for the support.  I can’t wait for you all to meet this amazing girl!

Join Wylie's Warriors:

https://my.lotsahelpinghands.com/community/wylies-warriors/request-to-join

The Destination Is The Journey,
Gavin

Ps. Karla will be writing to fill in all the details of the past few days soon.  She is doing great!

Mighty One

When Emma was about six or seven, she came into the kitchen where I stood my post at the sink with a proclamation I will never forget.  

"Mom, when I grow up, I'm going to have ten kids and they are all going to be small and bossy!"  

I just laughed because I thought, "She's right.  That's exactly what will happen if she says so!"

She is such a powerhouse, our Emma.  Her ideas are brilliant.  Her persistence is unquenchable and her love is fierce!  I've seen these qualities on display numerous times, but Wylie's life has brought about a demonstration unlike any other.  Emma loves her little sister so well and her Momma has been taking note.

On Tuesday, our exceptionally awesome doctor advised us that it's time to plan for Wylie's birth.  She has passed all her NSTs and ultrasounds, but the placenta is not doing the best for her.  That's why Dr. Playforth suggested sooner rather than later.  "How about Monday or Tuesday?" I was a bit shocked!  I will be 37 weeks on Friday, so I was thinking that we might be waiting longer.  I know and trust that she absolutely has Wylie's best interest in mind so we will induce on Tuesday at 8 a.m. if labor doesn't occur naturally before then.

In the meantime, I have prayed to switch modes.  I have enjoyed and grown comfortable with the closeness and the "knowns" of pregnancy with Wylie.  It's time to open the door to the unknowns of Wylie's birth.  Faithful family and friends, you have come right into this with us.  You have held us with such sincere care and love.  Your hopes are being realized!

This is what I know:

Wylie is not weak.  She is the exact opposite.  She bears a resemblance to her elder sister.  She's mighty!

Wylie and I are in this together.  We, connected, go forward in trust--in true love.

We will find no lack on this journey.  Everything we need will be there!

We will meet face to face and I am full of excitement and joy!  

Thank you, Wylie.  You have changed me forever.  I am so grateful for you.  You may be small (est. 4 lbs. 9 oz. at last Friday's ultrasound), but you are powerful!  I can't wait to get my arms around you!

"For God has not given us a spirit of fear, but of power and of love and of a sound mind." (2 Timothy 1:7)