Wait.

Spending any length of time at the hospital is draining. Here’s the thing, though—most of the time, it’s not especially emotional. Moments come, of course, where you feel a swirling dizziness as your life changes before your very eyes. But, most of the time, we tap our fingers and thumb through books we aren’t reading and joke with our nurses and wait.

And it’s the waiting that drains.

It’s the waiting that pulls out the obsessive in me-- and I madly scour old college textbooks and online medical journals and Google for information that might predict the future like a crystal ball.
 

For six weeks, I had August 14 circled on our family calendar. (Full disclosure: I’ve had the calendar turned to August since July 25.) For six weeks, I waited to see what the doctor would say when he looked down her airway, and I hoped that her airway might be clear so he could take out her trach.



Waiting for the nurse to take vitals

Of everything, the trach is the thing that has drastically changed our lives. Suffice it to say— the words sacrifice and patience have new depth for Lee and me. The biggest problem with her airway seems to have resolved, but we weren’t sure if there was anything else that might make it hard for her to breathe without the trach.

Once we knew decannulation was a real possibility, we waited expectantly, anxiously, cautiously. (Full disclosure: I waited anxiously; Lee waited cautiously. He is made of sterner stuff than I.)


So, we went in Thursday morning and waited to hand our baby to the doctors who would put her under anesthesia and look in her trachea. We waited again, and finally heard that the subglottic region of her trachea looked great and they could put in a smaller trach with the hope of capping it and seeing how well she could breathe around it. I thought, “Hooray! The biggest hurdle to her decannulation is cleared. She should pass the rest of her time here easily and come home without the trach!”

So, we waited for the doctor to come in and cap the trach. She didn’t tolerate that very well because even the smallest trach takes up a large percentage of her airway. So, the doctor decided he would come the next day and try to take out the trach altogether and see what she could do.

Lee spent the night in an extraordinarily uncomfortable chair, and Friday morning the doctor came in again. He tried pulling out the trach, but Kate simply is not ready to breathe without it yet.

So, we came home Friday with the trach still in place and instructions to wait until she gets bigger. (And until RSV/ flu season is over—As Lee put it, decannulation is not a winter sport.) So, we will try again in March.



The Passy Muir Valve

In the meantime, we got a pretty great consolation prize: a Passy-Muir valve! This is a speaking valve that helps her not only make noise but also practice breathing around the trach. Because it is a one-way valve, it is sometimes used as a half-way step between depending on the trach and breathing independently.

And so-- for the first time since she was 12 days old, we heard her. 

With the help of her Passy-Muir valve, Kate cried and cooed while Lee and I looked at the other in happy shock. Because we spent six months learning her breathing patterns and silent facial expressions, her little voice sounded strange and miraculous all at once.

I often misunderstand when God says wait. Usually, it feels more like no. And though wise, well-meaning people tell me that God’s timing is perfect, sometimes it is hard to believe them.

When I am just sitting on time, it is hard to see how the wait is good. I am impatient.

Now, however, I have a tangible reminder each time she makes noise that waiting is not always a waste of time. It is in the waiting that I grip tightly onto prayer and learn that my God is sovereign.

And my view of prayer is shaped by my view of God—as I wait, His throne comes clearer into focus because I have no choice but to trust.

I know that prayer is no talisman; its answer no barometer of my “goodness.” I cannot barter with the God of the Universe to ensure my version of a happy ending. As I deal in turn with disappointment and delight, I can rest in the truth that whatever comes will be for the greatest good.

I have seen God as sovereign King, but He does not sit powerful and aloof. He is Father. The kind that looks and listens. And even though I sometimes feel mad or ungrateful, I know He will take me as I am and change me. So as I wait, I talk to Him.

I enter the throne room with nothing to give.

My King—He says, “Come anyway.”

He uses the words He spoke long ago to the prophet Jeremiah: “I know the plans I have for you. Call to me. Come and pray to me, and I will listen to you.”

And though I am no prophet, I know that those words are for me. Glory becomes Grace as I come before the One who needs nothing—and in the waiting I am refined.

Update from Kate the Great

Hi, everyone!

My mommy apologizes for leaving all of you in a state of suspense regarding my status. She has been pretty busy taking me to appointments/ therapy, hanging out with Avery, learning how to be a combination nurse/ respiratory therapist, teaching a Bible study, google searching medical journals, managing my home health nurses, thinking seriously about cleaning our house, learning how to be dairy-free (more on this later) and sitting down every once in a while to watch 24 with Daddy. (Really, she reads while Daddy watches, but whatever. They're both happy.) Anyways, I guess we'll cut her (some) slack for not blogging lately.

So, I've been making lots of progress lately! I'm getting much stronger and hitting some big physical milestones-- I can hold up my head, roll from side to side, kick stuff, reach for stuff, and pull on fun things like earrings and hair. I still have to wear my splints, but I get lots of breaks during the day so I can move around. As one of my speech therapists said, I am no delicate flower. I am very strong. Sort of like Katniss or Wonder Woman (sans hotpants, plus diaper).

I particularly enjoy watching Big People. My mom is a favorite because she's so pretty and wonderful. My dad is always great to watch because he's basically like MacGyver. Also, I love watching Little Big People like Avery-- she's always doing something fantastic like disciplining her baby dolls or making castles out of couch cushions. If I like you, I'll give you a wide, gummy grin. If I don't like you, well... you'll know. Also, I've recently discovered that Peek-a-boo is both confounding and hilarious. (Seriously-- where do you go during those few seconds?? I hear your voice, but you just vanish a la David Copperfield.) 

I've found that the best way to fluster my parents and nurses is to spit up. Typically, it works best if I time it immediately before we go somewhere or right after bath and trach care. But, it seems that the Big People are catching on to my plan. My mom has even started a dairy-free diet to see if that keeps the milk down. She seems to miss cheese, but Aunt Jessica has given her some dairy-free tips that help her stay on track and keep my food milk-protein-free. I guess I'll have to work on a new plan if this diet thing actually works.

Oh-- by the way-- my vocal cords are working. My parents took me to a new ENT a couple weeks ago; he stuck this camera down my nose (bad) and said he saw some movement in my vocal cords (good). I could've told everyone this before, but this dang trach keeps me from being able to say anything. (Contrary to popular belief, my vocal cord paralysis is not what keeps me from making noise. It's the trach, which sits lower than my vocal cords. The bilateral vocal cord paralysis kept me from being able to breathe, which is generally considered important. Hence, the trach.)

So, since we saw some movement, we are working toward attempting decannulation. (A fancy word for "get this thing out of my neck so I can breathe through my nose and mouth.") Again, in the medical world, breathing is mostly thought to be a priority, so decannulation will not happen quickly. Everyone wants to make sure my lungs are safe before taking out the trach, and I appreciate this gesture. The ENT wanted us to do a few things before we go back to see him. Here's the list of steps we have to take:

1. Increase my reflux meds. Result: I guess this works, if I don't spit it up. Haha!
2. Complete a Swallow study to check for aspiration. Result: Unknown. They put me on this table with this giant x-ray machine above me and put my mom in the corner so I couldn't see her and then all these strange Big People were in my space. Then, they expected me to actually swallow something that tasted like sugary chalk. I don't really like stuff in my mouth anyways, so forget that! I didn't aspirate, but I only swallowed approximately one drop. Shows them not to do terrible things to me!!
3. See a pulmonologist. Result: Great! He and my mom and nurse had a great chat, and my lungs look fabulous. Mommy and Daddy feel hopeful after that appointment!
4. Check in again with ENT. Result: TBD. We go on Wednesday!

For obvious reasons, we are hoping that I don't have to have this trach for very much longer. We will see! I've surprised everyone before, and I hope to do it again soon. It is really the best policy to keep all Big People on their toes at all times. 

Love, Kate

Patience

This isn’t how the story is supposed to go. We closed a chapter, remember? The characters aren’t supposed to walk back through chapter 1 when they are acting chapter 2.

But, Kate is back in the hospital.

On Tuesday, they stuck leads back on her chest and plugged her in to the monitors. They stuck an IV in the same spot above her left ear where she used to have her PICC line. They stuck her with needles and swabbed her nose.

We walked into the same hallways that we walked out of six weeks ago.

And it is all sickeningly familiar.

A long story short: Kate got sick, so we are back in the hospital for a few days. Because of the trach, any illness Kate contracts is immediately a big deal because it compromises her airway. Imagine having a really stuffy nose but having duct tape over your mouth—that is basically how it feels for Kate to breathe when she is sick.

Thankfully, she seems to be doing much better now than she was doing Monday or Tuesday. Her fever has broken, and her secretions are slowly becoming more manageable. As soon as the doctors can identify exactly what she has and give us the right medicine, Kate will be discharged.

Kate is in the safest place right now. She should come home very soon, and she will keep on thriving. But, that doesn’t make it any easier to come home to an empty crib. Or to wake up in the morning with the dull ache that reminds me things are out of order. Again.

I’m not sure what I expected after coming home from our NICU stay. I knew it would be hard, I knew that we could land back in the hospital—that, in fact, it was inevitable because of the trach. But I didn’t know that the proverbial bumps along the road would send me sprawling across the pavement. That the smell of Purell in a hospital room would bring back so sharply the sting of helplessness.

And so, like David writes over again in his Psalms, I ask, How long? How long, O Lord? How long does she have to suffer? How long is she going to need this trach?

But I see my own impatience. I want to hurry to the end of the story and be done with pain. Be done watching my baby hurt.

But what if it is pain that changes us? That slowly carves us down to whom we are meant to be?

They say patience is a virtue. And so it is. The apostle Paul calls patience a fruit of the Spirit. And here’s what I think that means: patience is not something I can grow myself.

I can talk patience, I can think patience…try as I might, I cannot engineer patience. It is only when I must live patience that I can harvest that fruit.

So, we wait. We wait for results, for a treatment plan. We wait for Kate to come home again. And then we will wait some more. For the story to play out, for that day when we can look back and say, “Remember when?”

And we will remember that this was hard. But we will remember that He grew us.

Remember

Stories begin and stories end. After the resolving of a single conflict, fairytales leave the reader with the ever-elusive “happily ever after.” But what the fairytales won’t tell you is that “happily ever after” is its own sort of beginning.

For two months, we lived quite a story. Every day was packed full of anxieties and hopes, challenges and celebrations. Every day brought us closer to our end: home.

Shakespeare wrote, “What’s past is prologue.” And I believe him. With Kate’s ambulance ride home on March 31, a chapter closed. But it was only the first chapter.

And now, we are here. We are home. So, life begins and we step forward into the next blank page. But, before we step squarely into the next plot point, we must transition.

Transition phases in life are much like writing transition sentences. They are hardly ever interesting and, in my opinion, they are the hardest pieces to write. However, they are necessary. One cannot move fluidly through a story without a transition.

Nothing particularly earth-shattering has happened in the past month. We have simply been experiencing the growing pains of this transition phase—and “new normal” is slowly becoming, well, normal.

Kate has been doing really well at home. She is on track with all her social and cognitive milestones—every visitor seems to remark on her alertness and expressiveness. She smiles a lot, and is even starting to roll to her side! Doctor follow-ups have been going well and, with surgery and plenty of therapy, we can do a lot for her in the future. We are still working on an overarching diagnosis, but won’t have any answers for a while, if ever.

Avery is adjusting in typical 3-year-old fashion to having a new baby at home. She adores Kate, and loves to “pet her baby.” Kate, in turn, adores Avery and flashes a big, gummy smile whenever her sister comes to give kisses. Kate’s “special necklace” and “other belly button” are a non-issue for Avery. (Except, perhaps, when she tries to help suction the trach or hook up the feeding tube… lots of discussions about what big girls can do and what grown-ups can do…) However, having much less attention is pretty tough for her. Despite the fact that we have found some wonderful nurses who help take care of Kate and who are very sweet to Avery, life at home is different. It is difficult for a 3-year-old to comprehend all this change.

Lee and I are also adjusting. Things like trach care and g-button feeds are becoming as normal as changing diapers. (This is a real miracle for me—all things medicine are not in my natural wheelhouse.) I am slowly getting used to having nurses help me take care of my baby for 16 hours a day. (I hate asking for help. Like, really hate it. It’s a first-child, control-freak thing.) God has answered our prayer and we quickly found some nurses who are pure gold. But, I am certainly being stretched. It is hard having a constant audience—not only during my pre-coffee, pre-brushed teeth morning, but also when my house is a general disaster and during aforementioned toddler tantrums. (You know that feeling when your screaming kid throws herself on the ground at HEB because you wouldn’t let her pet the lobsters? Well, it’s like that—except at home. And without the lobsters.)

So, this transition has been a strange paradox of good and hard.

And, in the midst of exhaustion, the dark whisper comes: You cannot do this. You are not strong.

And it is easy—too easy—to slip under the fog of discouragement. To believe the lies that come to immobilize me.

But then—a word, a light: Remember.

This is not the pithy charge to “count your blessings” or “see the glass half-full.” Advice like that tastes bitter when the days are long. No, to remember is a richer task. When life seems static, I look back at the story already written.

As a character and limited narrator in this story, I sometimes have short sight. I’m thinking about the next day, the next page. But you, reader, probably see something clearer than I see it myself: God is working miracles.

That’s why I think God asks us to remember. We get caught in the current of our immediate circumstances and forget that He parted the waters. We forget the big story.

There’s a second time in the Old Testament that God parts the waters. Of course, we all know about Moses—there’s that famous image of Charlton Heston dramatically lifting his staff in front of fake storm clouds… so, we know that story.

But, it happens again with Joshua and the Jordan river as Israel crosses into the Promised Land. And God tells them to pile 12 stones in order to remember. Here’s why:

[Joshua] said to the Israelites, “In the future, when your children ask their fathers, “What is the meaning of these stones?” you should tell your children, “Israel crossed the Jordan on dry ground.” For the Lord your God dried up the waters of the Jordan before you until you had crossed over, just as the Lord your God did to the Red Sea, which He dried up before us until we had crossed over. This is so that all the people of the earth may know that the Lord’s hand is mighty, and so that you may always fear the Lord your God.” (Joshua 4:21-24)

When we pass along the stories, we remember the miracles. When we step out of the role of character and into the role of narrator, we can see more clearly the careful weaving of a truly great tale.

So, we pile the stones. We mark the miracles in such a way that people ask, “What is the meaning?” And because they ask, we can answer with a story of a faithful, mighty God. Sometimes, the story is for them… but sometimes, it is for us.

As I tell people where Kate has come, I remember that my Father God is for me. And then I remember that my great, cosmic God sees me.

And that is a humbling, lovely thing.

Out of the Wilderness

In Shakespeare, the characters are often cast out of civilization into some type of wilderness. In the wilderness, they work out a problem; in the end, they emerge changed in some way. 

In Scripture, it is much the same. Moses with the burning bush. Israel in the wilderness for 40 years. Jonah and the whale. Jesus in the wilderness for 40 days.

In life, it is much the same. A single moment hits us in the gut with the force of a hurricane and we are flung into the wilderness. When the world stops spinning and we find ourselves there among the brush, we wander in search of some unknown destination called "normal."

But, as Gandalf tells Frodo, "Not all those who wander are lost." The wilderness is always for some purpose greater than simple comfort.

Last Tuesday, we passed the 40-day mark in the NICU. Let me be clear: our proverbial wilderness is not made rough because of our Kate. We firmly believe that she was made exactly the way God intended for something really special. These 40+ days have been hard because of the uncertainty in waiting for various test results, the helplessness in watching our baby feel pain, the longing to have our Kate home.

On day 1, we were told Kate may have a condition that is medically termed "incompatible with life." Today, day 47, we know that is not the case.

While we still do not have a diagnosis, we've learned that Kate has some type of muscular disorder that affects her vocal cords, arms and legs. Because of her vocal cord paralysis, she has a hard time breathing and will come home with a trach. Because of her trach and overall muscular disorder, she has a hard time swallowing safely and will come home with a g-button. Because of the contractures in her extremities, she will come home with splints and endure quite a lot of physical and occupational therapy.

So, in this wilderness we have crawled from the canyon and walked a rocky path. But as we emerge from our wilderness, we see that the path called "new normal" stretches far.

In Deuteronomy 8, Moses tells Israel, "Remember that the LORD your God led you on the entire journey these 40 years in the wilderness, so that He might humble you and test you to know what was in your heart, whether or not you would keep His commands."

I think there is something both weakening and empowering in walking the wilderness. In the wilderness, there is no shelter for our weakness. The LORD tests our mettle, and we are exposed-- the wilderness may burn, but it also refines. Where we are weak, the God of the Universe infuses us with strength that we do not naturally have; and as we realize that we are not strong enough by ourselves, we understand with a new sense of wonder that our God is powerful. 

And in wonder there is beauty.

Here's the exciting news: we get to take our Kate home SOON. Kate's g-button surgery last Wednesday went really well, and the discharge planner at the hospital came to talk last Friday! It looks like we will probably be home at the beginning of next week. 

So friends, celebrate with us as we take these last few steps out of the wilderness. Pray for us as we take our girl home and settle in to our "new normal." 

Prayer requests:

-Pray for Avery as she transitions into her new big sister role. I'm pretty sure she thinks Baby Kate is about as real as Doc McStuffins... So, next week is going to be interesting for her.

-Pray for our future home health nurses. Pray that we quickly find one or two that are just right for Kate and for our family.

-Pray for Kate's transition home. She has no idea what home is, so pray that she settles in comfortably and quickly.

-Pray for Lee and me to wisely manage both of our girls.

-Pray for peace and confidence as we care for Kate, especially at night-- Because of Kate's trach, she does not make noise when she cries. So, pray that we confidently learn her "upset" cues.

-Continue to pray big prayers for Kate's progress and her strength (physical, emotional, and spiritual) as she grows.

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.

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