When God Says No

My brother-in-law asked me a good question last week. He asked, “What are you afraid of if God says no?”

My honest answer? I am afraid it will be hard.

The past week has been a flurry of celebrations and disappointments. In short, we found a spot on her heart that, after running numerous tests, the doctors believe is a clot. Thankfully, we have ruled out some very dangerous possibilities regarding the spot, and we are moving forward in a positive direction. Also, they thought she might have caught a virus, so Kate was moved to isolation for a few days. Thankfully, she is doing fine, though we are grateful that our doctors are being so careful with our precious girl. Lastly, Kate is going to get a g-tube, probably sometime next week. She was moving forward slowly with her sucking coordination, but they did a swallow study (she swallowed contrast and radiology watched to see if the liquid went into her lungs or her tummy) and found that she was aspirating (some of the liquid went into her lungs). So, bottle feeds are off for now. In the meantime, we will practice non-nutritive sucking and do another swallow study when she is a little older. But, as soon as she recovers from g-tube surgery, we can take her home.

Home.

That word. That word eclipses everything. Everything I didn’t want. Everything I prayed against.

In the midst of last week’s sandstorm, a former student of mine sent me 1 Corinthians 16:13. It reads, “Be on your guard; stand firm in the faith; be courageous; be strong.”

And while I screamed “NO” to the things I didn’t like, my God gently reminded me of a lesson He taught me weeks ago: “Be strong and courageous for I am with you.”

Here is the miracle: my heart has changed. I’m starting to realize that this story isn’t about me. I am not the author; I am not even the main character. From my pen flows the story of our Kate, but these are not my words and I am not in control of the plot.

My sovereign God writes the story, and He imbibes me with a strength that I do not have by myself. I thought I would break if Kate had to get a g-tube; instead, my heart grew strong. I believe this is the first of many things that Kate will simply do on her own time and in her own way.

There is no doubt: the path we walk is much steeper than it was 5 weeks ago. And I am certain that at various points ahead we will have to dig in and scale the mountainside. But the view from where we stand is not sad. It is indescribably lovely.

You see: we get to take our Kate home soon. It may not be what we originally envisioned, but when is it ever what we originally envision? As this short chapter of her story comes to a close, I look back upon answered prayers: she is here, and she will come home.

Prayer requests:
-Pray that Kate's g-tube surgery would go well next week and that she would have a quick, easy recovery.
-Praise that Kate has made some great strides in regards to her mobility-- thanks to PT/OT, her knees are almost totally stretched out, and her ankles and hands have made great progress. We still have a long way to go, but we are seeing big improvements! Keep praying big prayers for Kate's future mobility.
-Keep praying big prayers for Kate's vocal cord paralysis. Pray that we would find just the right ENT for the future.
-Keep praying big prayers for Kate's ability to eat safely. Obviously, we have had a huge setback, but there is hope for the future.
-Pray for God to prepare Avery for Kate's coming home. Pray that she would understand how to be gentle with her baby sister and the amount of care that Kate will require.
-Pray for Lee and me as we finish up these last few weeks at the hospital. Pray for endurance and pray against discouragement.

Pray Daringly.

Sometimes, I don't know how to pray.

Can I ask for my wildest hope?

I asked my dad about this the other day and he told me a story. Several years ago, he was traveling with a friend whose wife was sick. They met some people who told this friend that they would pray for his wife to be healed by the time he and my dad returned home.

The friend said this: "If she is healed, I will praise God for that. But if she is not, I want you to know this: I will still praise God."

Sometimes we are Jairus. We fall to the feet of Jesus and a miracle happens. And sometimes we are Job. We walk through hard things and we are changed. Either way, it is as Job says, "I had heard rumors about You, but now my eyes have seen You" (Job 42:5)

Over the past month, Lee and I have been both Jairus and Job. We have heard "yes" and we have heard "no." With each answer, another chapter in Kate's story is written down for us to read.

In the past, I have been timid to pray for big things. Not because I don't think He can, but because I'm afraid He will say no.

But here's what I remembered about my God yesterday: He is Father.

He does not sit on a high mountain and demand more faith in return for favors. As David writes in Psalm 54, "God is my helper; the Lord is the sustainer of my life." He knows the depth of my longing, and He will help me with the tenderness of a caring Daddy.

So, I am learning to ask daringly. And trust that regardless of the answer, it is always good.

Here's what we are praying now. Will you pray boldly with us?

1. That Kate would be able to eat through her mouth. With a baby who has a tracheostomy, there is a greater risk of aspiration (getting milk into her lungs), and it is also harder for her to suck. Many babies who have tracheostomies also have G-tubes (a feeding tube in the tummy). The Occupational Therapist has worked with her a few times on using a bottle, and while it is difficult for her, she has not aspirated! So, we will keep working! Please pray that Kate continues to improve, and that she can come home safely without a G-tube.

2. That Kate would be able to someday use her hands, legs, and feet. She has stiffness in her joints that physical and occupational therapy are working to help. (And they have been doing an amazing job so far-- we are SO thankful for our PT/ OT team!) We have no idea how much she will improve over time, but please pray for Kate's future mobility.

3. That Kate's vocal cords would start working. This is a really hard one for me to ask, because it is a long shot. Sometimes, babies with bilateral vocal cord paralysis do spontaneously recover, but not in many cases. Also, we have no idea what is causing her vocal cord paralysis, so we have no idea if they can recover. Most likely, Kate will have her trach for a few years and then she will have some surgeries to try to create an airway in her trachea. But, we are asking boldly, and whether the answer is yes or no, we trust that God will use this part of Kate's story for something good.

Wait.

A writing professor once told me, "Start writing your story. Don't plan for the end before you begin. Simply start writing, tell the truth, and see where you go."

Once I started following his advice, my bad poetry improved dramatically. And my pen started teaching me.

I think about that now as I pen Kate's story. So badly I want to control the outcome. I want to know how long we will be in the NICU. I want to know a specific diagnosis. I want to know if she will ever be able to use her hands or legs. I want to know how long she will have her trach. I want to know what her story will be.

So I ask. But, the answer is always the same.

Wait and see.

I hate waiting. This is why I rummaged through all the Christmas presents in my mom's closet every December. (Sorry, Mom.) This is why I swallow novels in a day or two, neglecting basically everything else. I need to know the outcome. But, I can't know it right now.

I must instead simply live the story, tell the truth, and see what I learn.

So far, I've learned that miracles exist. So many prayers have been answered-- each time a doctor gives good news, I feel my God holding my face in his hands and pulling my nose close to His to say, "Trust me."

Yesterday, Kate weaned off her ventilator. (I got to hold her for the first time in a week and a half!) Also, her hip ultrasound was normal! And, she will get to try a bottle sometime in the next few days. Her doctor said, "Kate is defying all the odds."

My God whispers, "Trust me."

I've also learned that hard things happen. And they do not immediately resolve. We still have a long way to go before we get any conclusive diagnosis. We still have several years of physical and occupational therapy ahead. We still are learning about all the particular challenges that come with caring for Kate's trach.

And still, my God whispers, "Trust me."

I think King David heard this whisper. His Psalms rustle palpably with this whisper. While he tells of doubt, distress, destruction, he also tells of a God who is a Rock, a Refuge. And he tells of the beauty of waiting.

He writes in Psalm 40:
I waited patiently for the Lord,
and He turned to me and heard my cry for help.
He brought me up from a desolate^[a] pit,
out of the muddy clay,
and set my feet on a rock,
making my steps secure.
He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear
and put their trust in the Lord.

And so I trust that in the waiting there is beauty. In the waiting I will grow. In the waiting I will sing a new song. And in the waiting God will get glory.


Prayer requests for this week:
-That Kate would continue to breathe well off the ventilator.
-That Kate would learn to eat through her mouth, despite the challenge of swallowing with her trach.
-That Lee and I would quickly and confidently learn to care for Kate's trach.
-That Kate would keep making great progress so that she can come home soon!
-That God would prepare Avery to be a gentle, understanding, protective big sister of Kate.

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.