How to Deal with a Bad Hair Day

They shaved my baby's head.

Not just a piece of it. I'm talking Rhianna/ Miley style... half of her hair is gone.

So, I did what any normal mother would do in this situation: I had a good, long, ugly cry and bought her some headwraps on Etsy.

The nurses at the hospital were precious and put her hair in a little bag for me and decorated a sign that reads, "Kate's 1st Haircut." But, I loved her hair. I loved the way it stuck up a little after a bath. I loved running my fingers through it to put her to sleep. I loved the way her hair somehow always smelled of powder and softness.

But I also know that they had to do it. She needed a PICC line, and babies simply have more cooperative veins in their heads. They had to do it so they don't have to prick her any more than is necessary. They had to do it for her own good.

But, I loved her hair.

I live in this tension between my logic and my sensibility. I know that we are doing what's best for her, but I hate that what's best for her sometimes hurts her. Or takes away one more piece of a "normal" babyhood.

So, I turn to some others who have lived also in this tension. Those who took frightening steps forward, knowing with certainty that all things-- even hard things, especially hard things-- lead to something better.

Hebrews 11. Read it if you haven't. It is Abel, it is Enoch, it is Noah, Abraham, Sarah and Isaac. It is Moses, it is Joshua, it is Rahab. It is story after story of people who walked through the proverbial fire and came out not burned, but refined. It is story after story of faith.

"Therefore," as Paul writes, "since we have such a great cloud of witnesses," we keep going.

We look to the right and the left and we see the ones who run this race with us-- the heroes of the stories of old, and the friends who hold us up when we are tired.

We look then to the finish line. We keep our eyes fixed on the finish line because our Jesus is there. And our Jesus has run the race ahead of us-- he knows about pain. But, he also knows that there is joy in refinement. There is joy in finishing well.


Prayer requests this week:
-That Kate would continue to heal well from her tracheotomy.
-That Kate would be able to safely come off her ventilator soon.
-That Kate would have the coordination to eat through her mouth with the trach. (If she cannot eat through her mouth well, she will need a G-tube for feeding through her belly. A G-tube is safe and easy, but I am hoping for one less surgery for her.)
-That Avery would have great quality time with my parents in Dallas.
-That Lee and I would continue to have strength, patience, and energy as we continue our time in the NICU.

Consider It Great Joy

The past few days have rushed by like a hurricane—information and test results and procedures and probable diagnoses slapping against us and whirling around us at a maddening speed, bending us and breaking off our branches so that we are stripped bare.

We are tired.

I can’t really say whether the past few days have felt like minutes or years. Both, maybe. I can say, however, that we are moving forward. And I am confident that we are helping Kate.

But still—my mommy heart breaks.

Today, Kate had a tracheotomy. On Monday, the ENT found that she has bilateral vocal cord paralysis (in other words: her vocal cords don’t move; therefore, she was having a difficult time breathing). So, she will now breathe through a small tube in her trachea.

Here’s the amazing thing: when the doctors put in her trach, they were shocked that she had been breathing on her own at all. So, we learned today that our Kate is a fighter and our God is in her corner.

Other good news: Kate’s brain MRI and her microarray (more detailed chromosome test) were completely normal.

So, dear ones—keep praying. We have seen miracles because of prayer. We do not know what miracles lay ahead. This we know: as Kate’s story unfolds, God shows Himself.

As we were driving to the hospital this morning, Lee reminded me of James 1. James writes, “Consider it great joy, my brothers, whenever you experience various trials, knowing that the testing of your faith produces endurance. But endurance must do its complete work, so that you may be mature and complete, lacking nothing.”

And so we endure. Some nights, I feel as if I’ve been poured out beyond what I ever had to offer. Tonight is one of those. But in the morning, I will get up and go see my baby. I will kiss her forehead and marvel at her tiny softness. And I will know that there is great joy in this trial.

Endure with us, friends. We have a few weeks before we leave the NICU and we covet your prayers. 

Pray these things for us:

-That Kate would heal completely from her tracheotomy.

-That Kate would have the ability to eat through her mouth once she heals.

-That Kate’s hip ultrasound this week would bring good news regarding her future mobility.

-That Lee and I would have endurance and energy for these next few weeks in the NICU.

-That Avery would begin to understand what it means to be a big sister, and that God would maximize the time that we spend with her.

What I Can Handle

People say, "God won't ever give you more than you can handle."

Here's the thing: These past 10 days have been more than I can handle.

My heart breaks when I leave my baby in her plastic NICU crib every night. I want her home. My heart breaks when I leave my 3 year old every morning to be at the hospital. She is in good hands, but I still hate leaving her. My heart breaks this week.

Today, Kate travels to the medical center. And my heart breaks a little more knowing that she will be a bit farther away. Yesterday, they found that her vocal cords do not seem to be moving out of the way when she breathes, so they are taking her to have another scope of her throat and an MRI of her brain.

Originally, they thought Kate might come home today. I am beyond thankful that they found this before she came home and we had a problem we could not handle ourselves. I am beyond thankful that we live near some of the best hospitals and doctors in the world. I am beyond thankful that the outlook today is much different than it was a week ago. But still- my heart breaks.

So- because I cannot handle this, I look up.

My God does not promise that He will only give me what I can handle.** I see King David who writes of weakness. I see Job who lost everything. I see the apostles who were martyred for their faith. However, I see not superhuman strength in each of these stories, but a supernatural God who is both powerful creator and compassionate father. And I look up because He is there.

David writes, "You Yourself have recorded my wanderings. Put my tears in Your bottle... This I know: God is for me." (Psalm 56:8-9)

The God I know is one who cares. With the tenderness of a mommy who wipes her baby's tears, He collects ours. With the compassion of a daddy who works to protect his family, He binds up our hearts as they break.

The God I know is a powerful one. David writes, "He reaches down from heaven and saves me." (Psalm 57:3) And so He does. He may not save me from hard things, but He does save me from despair.

The refuge that is my God is better than simply "looking at the glass half full." He is peace during what feels like an uncontrollable season.

And so, friends- continue to pray. Because of the unbelievable amount of prayer that buoys our family right now, we have seen victories and we have felt peace.

Here is what you can pray:
-Praise that Kate has been doing well being off both her feeding tube and her oxygen tube for the last couple days!
-That God would give Kate's doctors in the med center wisdom to know how to help her in the best possible way.
-That we would continue to feel at peace with her move and the things we might learn about her in the next few days/ weeks.
-That we would have patience as we wait for Kate to be ready to come home.
-That Avery would feel loved by Lee and me.



**The verse that is often misunderstood is 1 Corinthians 10:13. It is about temptation. Here, God promises that He will never tempt us beyond what we can bear.

Celebrate!

There is a story in 2 Samuel 6 that I love. And I keep coming back to it because it gives me perspective, and it gives me hope.

Here's the (abbreviated) story: King David wanted to bring back the ark of the covenant to Israel. (Ark meaning a box that held the presence of God, not Noah's big boat.) As they journeyed back to the city of David, they stopped after every six steps and praised God.

This seems a really inefficient way to travel a long distance, but sometimes I think we learn more when we stop, reflect, celebrate, and then look to the next six steps.

Yesterday was Day 6. And so, we stop and celebrate! We celebrate not only because Day 6 was GREAT, but also because God has been doing some really big things through our very small Kate... things that are bigger than just our story.

Now, the update: Yesterday, the doctor gave us some preliminary genetic test results. (One prayer answered- we heard back about the test much sooner than expected!) Essentially, we had a preview of the final test results, and Kate has the right number of chromosomes in the few cells they have looked at so far -- that means she does not have classic Trisomy 13 or 18! (Second prayer answered- our worst case scenario is ruled out.) Also, Kate has been eating through her mouth during the last few feedings! (Third prayer answered- she is improving!)

Can you hear our mighty God whispering hope to us?

We do not know exactly what challenges Kate will face going forward (and there will be some). We do not know what other chromosomal issues may surface on the final test. We do not know if we will ever have a clear diagnosis. But we do know that our God has given us hope for Kate's future. The picture has shifted from death to life-- I can now see beyond the next year, and I can hope that Kate will grow up to play in the yard with her sister and laugh with us.

So, dear ones-- keep praying for us. We feel it.

On Prayer

A great many things I do not know. Two things I know for certain: this is hard and this is not an accident.

"Be strong and courageous."

These are the Words that have become my heartbeat over the past 4 days.

"I will never leave you nor forsake you. Be strong and courageous."

God tells this to Joshua three times before his story really begins. And now, my God is whispering this to me. When our families vigil with us and take care of Avery so we don't have to worry, I hear His whisper. When doctors and nurses show compassion beyond what is required, I hear His whisper. As we read countless cards, texts, emails, and messages from friends and family, I hear His whisper. When I feel supernatural peace cover my soul like a blanket as I hurt and wrestle with hard questions, I hear His whisper.

"Above all, be strong and courageous."

Three times God says this, but one time the people say this to Joshua. You, dear ones, are our people. Lee and I have simply been overwhelmed by the love you have shown us, and we could not be more thankful. Many of you have asked what you can do for us. So, here is your task:

Pray.

I mean it. Pray for us. Even if it's been years since you talked to God. Pray. Because so many have literally bent to their knees in prayer for us, we have heard our mighty God whisper as we love our precious baby girl and wonder what is next for her.

So, here is how you can pray:

• For Kate's breathing to improve. She breathes too quickly sometimes, and her oxygen levels drop a little when she gets upset. (Like during diaper changes or when it's time to eat.) 
• For Kate to be able to manage breathing and eating through her mouth at the same time. Today, she was able to eat through her mouth for about 3 minutes, which was amazing!
• For Kate's genetic test results to come back quickly. Right now, they are thinking we may have them by the beginning of next week. These results could tell us her specific diagnosis, and after we have those results, the doctors will begin to make a plan for further treatments and her coming home. So, the sooner the better.
• For Avery to somehow understand what is going on, and for her to feel loved by Lee and me, even as we spend a good portion of every day in the NICU. We are SO thankful for our families who are making this crazy season as seamless as possible for Avery. 
• For Lee and me to wait with peace. Also, for us to grow together as we try to figure out our new normal.

I love knowing that our Kate is prayed for continuously-- it reminds me that my God is Creator, and He creates with beautiful purpose. 

Kate Aimee Owen

At 5 AM on Wednesday, I woke up knowing that my baby would come. Only a few more hours, and Avery could meet her baby sister. She could hold her, feed her, pat her head, and give her sweet kisses. We would take an adorable family picture in the hospital room and send it out to all our friends and family. We would bring that sweet baby back to our home and put her in the purple and gray room that we have had ready for weeks. We would love that baby, and she and Avery would grow up to be the best of friends-- laughing and arguing and getting into trouble together, standing up for one another when the other had a stupid boyfriend or a mean friend, telling each other secrets, planning life together. Just like me and my sisters.

At 5 AM on Thursday, I went to sleep in my hospital room for the first time in 24 hours, Lee's and my life trajectory pummeling down an entirely different path than we ever thought possible. For the first 15 minutes of Kate's life, she was blue. It was horrifying, but I thought that once she turned pink and began to breathe, everything would be okay. But, then words like "mutation" and "problems" and "chromosomal abnormality" and "condition incompatible with life" started swirling into our world at a mind boggling speed. And when I woke up at 6 AM on Thursday, I felt like I was waking up into a bad dream. 

So, Day 1. We learned on Day 1 that our sweet Kate most likely has a chromosomal issue, and it most likely has to do with her 18th chromosome. Other than that, the only diagnosis we will get for a while is "Wait." So, we wait until her genetic test comes back, we wait to think about the future, we wait on the Lord to show us why. No matter what, Kate will be a special needs child. We are uncertain about exactly what that means for Kate and for us, so we wait. 

As our dear friend Doug told us, there is only one Day 1. Thank God. One more dimension is now added to my understanding of Jeremiah's words in Lamentations 3: "His mercies are new every morning." Because I have started really hating waking up in the morning. I have to remember all over again every time I wake up that my baby is in the NICU and not with me, that we have no idea what the future holds for us or for Kate. 

But, each morning the pain is salved a bit more with peace. And I believe that peace comes from a God who knows exactly what Kate's chromosomes look like and exactly what the future will be. I believe we have an unbelievable support group of friends and family who are constantly and fervently interceding for us in prayer. And I believe that while coming home from the hospital without an infant carseat in the back was never my plan, God knew. And He knows why. 

For you created my inmost being;
    you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
15 My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

Psalm 139:13-16