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.