New Website

Hi, everyone!

My blog has moved! You can now find me at shannonowenblogs.com! My newest post, "Normal-ish" is now up.

As my life becomes less hectic, I plan to start writing regularly again-- so, please come follow me at my new site!

Also, I have begun writing for a prayer app called Abide. If you are looking for a way to enhance your prayer life, I think it is a great tool.

Blessings--
Shannon

On Miracles

I turn the page to 2015. As we do with clean calendars, I look back at the old one—circled dates gone by, wishes granted or denied.

I am a different person now than I was this day last year. Better? Maybe. I don’t know. Certainly more tired, which has its own human side effects.

But, I know what it means to pray so hard for something that I press my forehead to the carpet and forget fancy words. Sometimes to forget all words altogether and let God read my heart. (Romans 8:26)

I know what it means to hear "no," and then to walk a path strange and hard. Undeniably, I am stronger than I thought I was.

I know what it means to see "yes" just when I had bulwarked my heart to face reality. When my sense of wonder is revived by Grace, Hope is real again too.

And now here’s what I know: Miracles are true, though they take a thousand forms. They are shape-shifters, fluid like a shadow— and they always come to point us to eye-blinding Glory. 

God says yes and God says no. And still: there are miracles.

My girl—they call her a miracle. And honestly, I don’t always know how to react to that statement. I mean, there has been no whiz-bang, medically-confounding moment. She is simply thriving. And for that, we are humbled. We are thankful.

At the beginning, we weren’t sure what her genetics looked like. Now we know they are as normal as mine and Lee’s. (Which, I guess, is a debatable statement depending on how “normal” you consider either of us.)

Taken by our friend, Elizabeth Walters.

At the beginning, we weren’t sure what would happen with her ability to breathe independently. Now, she is wearing her Passy Muir valve all the time, and we are sometimes capping the trach with the hope of removing the trach later this year.

At the beginning, she needed a feeding tube placed because she was aspirating. Now, she is stronger and has outgrown some of her initial issues, so she isn’t aspirating any longer. With the help of an awesome speech therapist and lots of work at home, she has overcome her oral aversion and has just recently decided that she likes food! We have a long way to go, but she is enjoying throwing puffs on the floor, smearing puree all over her high chair and generally making disgusting messes. (And all the people said: Amen!)

At the beginning, we weren’t sure what her physical mobility would look like, but she has made GREAT progress. Thanks to some wonderful PTs and OTs who have helped with splinting, stretching, and teaching me exercises, she is getting stronger and is an active, wiggly, curious 11-month old. Also, we have been doing serial casting with orthopedics since the end of October. It has slowly moved the bone alignment in her feet, and we will have surgery tomorrow (Wednesday). 

Beyond all of this, Kate is sweet and smart. She already has a sense of humor and a flair for the dramatic. And, she is tougher than any sweet, cuddly baby has a right to be. Beyond anything medical, she is a miracle simply because she is herself. And we are blessed, thankful to have her in our family.

Which brings me to my next point.

We call it a miracle when odd things happen, but what about when things go according to plan? When babies are formed exactly as we expect, and still they come special—fierce compassion, wild curly hair, and an inexplicable love for dogs?

Here, too, is a miracle: my other girl who came tiny and strong, for whom I worry the regular things. She, too, has felt your prayers, even though she may not see it. She takes trach care and g-button feedings and casts as simply part of what we do. In her own way, she understands that this is not what is typical for babies, but also understands that different is not bad. It is simply different. She is curious, not scared. She loves her sister the way I love my sisters, and you can't really ask for more than that.

Today, I marvel in this: the typical and the unique. All is miracle and nothing, no one is accident.

A thousand blessings, a million miracles.

And sometimes, we do this: we write “Praise the Lord” only next to prayer requests that have been answered in our favor. But, what about when God says no?

My mom tells me to find the silver lining. And I think this is something more than forcing a glass-half-full perspective. In reality, it goes something like this: grieve the no, find the purpose, give thanks.

In his letter to the Thessalonians, Paul says it like this: "Rejoice always; pray without ceasing; give thanks in all circumstances."

We toss this verse around as a nice thing to say when we don't know what to say, but I believe it. I grip these words tight. Make no mistake: this year has been hard, exhausting, draining even as it has been good and beautiful. If you've followed our story, you know that we have heard both yes and no to various prayers. 

To rejoice always is not a light task; however, I think that's why Paul follows it with "pray without ceasing." We pray to ask for things, but then we pray as we wait, we pray to ask why, we pray to ask mercy, we pray to gather courage, we pray to say thanks. 

And it's the praying that keeps me grounded, that turns me toward my God, who gives purpose to everything. Then, I rejoice. Everything under the sun has purpose! My story can affect someone else who will change the life of someone else, and so on for all time.

In Ann Voskamp’s 1000 Gifts, she wrote, “Eucharisteo—thanksgiving—always precedes the miracle.”

When I read this, my heart beat, “Yes.” 

But, thanksgiving isn’t a prescription or a magical incantation to recite when we want God to do our bidding like a genie slave trapped in a bottle.

The miracle IS thanksgiving. A heart free of bitterness, a heart content in all things. The secret to peace revealed.

And so—I give thanks in the normal, thanks in the fantastic. Our God is good. All the time.

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.