Summer Fun + More Surgery // An Update on Josiah

As many of you have probably realized by now, I tend to be a little verbose.  What can I say?  I like a good story.  And I think it is in the details that life becomes more scrumptious.

But sometimes, it’s just been a long day.  And the creative energy (any energy actually) is just non-existent.

So concise will just have to do.  So here it goes.

Summer flew by.  Josiah had surgery in June.  It went well and in hindsight, it was good “practice” for the one coming up.

July was filled with lots of “firsts” for our not-so-little-anymore little man – first plane ride, first time experiencing a Phoenix summer, first haircut, first time seeing the extended family, first time hanging out at the bowling alley, etc.  Cue the pictures.

It was the best three week vacation any momma could ask for – a.k.a. sleeping in, not having to cook every meal, doting grandparents to watch the baby, actually getting dressed up for a night out.  Pure bliss.

And now somehow, it’s already August.  And the date that’s been looming on our calendar – August 16th – is already here.  The date of Josiah’s next surgery.

This is “the big one” that I have been alluding to in previous posts.  There are three main objectives for this surgery

  1. Go in and separate Josiah’s colon/rectum from his urethra as they are currently fused alongside each other,
  2. Bring his colon/rectum down through the right muscles in his bum without damaging any other nerves, and
  3. Create his anus.

The procedure will take a minimum of four hours and we will be admitted into the hospital, so we are anticipating having to stay a few nights.

A couple weeks after this procedure, we will begin the next step in this process – anal dilation.  Josiah’s body will think this new anus is an open wound and potentially try to close it back up.  Thus, we will need to dilate morning and evening to stretch out his new anus and prepare it to be able to pass stool.  Josiah will still have his colostomy bag during this time.

Depending on how the dilation process goes, we will do this for a couple of months before Josiah has his final surgery to reconnect everything so that he will pass stool through his anus.

A poopy diaper is probably not at the top of anyone’s list of dreams but for this famiLee, it will be a dream almost a year in the making.

And then the real journey of faith begins.  But more on that later.

One thing I have learned over the last almost nine months since Josiah was born is to never be ashamed or afraid to ask for prayer.  And to keep asking for it.  And to keep believing with a crazy, ridiculous, incomprehensible faith that the impossible can happen when God’s people come together before the Almighty Creator.

So, will you pray with us?  

Please pray for God’s healing hands to guide our surgeon and his team.  For the surgery to be 100% successful.  That there will be no damage to nerves, muscles, tissues, etc.  For Josiah to wake up from anesthesia well and quickly resume his happy, healthy, giggly, hungry ways.  That my husband and I will have grace for ourselves, for one another, and for everyone involved in this process.

But most of all, please pray that God’s glory would be revealed through our son’s little body.  That somehow, a testimony would arise from the ashes of this season.  That healing would triumph.  

From our lips to His throne – “Jehovah has healed.”

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God’s Promises // An Update on Josiah

It has been almost six and a half months since the day that our lives changed forever.

It feels like yesterday and forever ago all at the same time.

There are days that I feel victorious.  Days when I am so confident in the mighty future the Lord has in store for our son…for miracles…for healing…for a radical testimony to come out of this little life.

And then there are days that I feel absolutely defeated.  Days when the doubts and worries and fears come rushing into the sink hole that has found its way into my soul.

Yet, woven throughout the new normal of our days, between diaper changes, bath time, nursing, playing, crying, and giggling, are the whispered reminders of God’s promises to us over our son.

See, right after Josiah was born, the Lord gave us two promises.  The first one came in the story of the meaning of his name – “Jehovah has healed” – which I wrote about here.

The second promise came through my dad the day after Josiah was born at 29 weeks.  For decades, my father has built a habit of starting out his day reading a few chapters from the Bible, not necessarily following a plan but just reading from Genesis to Revelation.  Time and time again, the Lord has spoken to him in the face of many difficult situations through the exact chapters he was to read for that day.

The Lord did not disappoint as my dad woke up on November 21, 2016, with a heavy heart, asking the Lord what had gone wrong.  How had this happened?  Not only was his first grandchild born prematurely, this little boy was also born with a birth defect.  He opened up the Word to the chapter that was next for that morning – John 9.

“As he passed by, he [Jesus] saw a man blind from birth.  And his disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’  Jesus answered, ‘It was not that this man sinned, or his parents, but that the works of God might be displayed in him…'” (John 9:1-3; ESV)

It wasn’t an answer that made sense to our human minds.  But we knew it was a promise from the Lord.  That none of this was in vain.  That somehow, the works of God would be revealed through our little son’s body and life.

A few months ago, I was scrolling through Instagram when I saw that a friend of mine was creating art out of Scripture for thirty days.

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And in that moment, the Divine Voice broke through and silenced the busy traffic of my soul.  This…this is the truth over Josiah.  My ways are not your ways.  This is going to be good and this is going to be glorious.

My friend was kind enough to mail the original artwork to us, and it’s currently in Josiah’s room as a constant reminder of God’s promise.

No matter what happens the next few months, His Words are what we are going to hold on to.

This coming Wednesday morning, on June 7th, Josiah will have his second surgery (he had his first one the day after he was born) of four total surgeries to correct his imperforate anus.  Below are the specific prayer requests we desire to lift up before the Lord as we walk into this next step of healing for our son…

  1. That God’s mighty works would be displayed through Josiah.  We are contending for creative miracles, for the Lord to finish His perfect work of wonderfully and fearfully creating our son.  We want to see the look of shock and awe on the faces of Josiah’s surgeons and medical staff as they examine his development and progress.
  2. That all necessary medical intervention will be 100% successful.  We are believing for everything that his surgery team has planned for Josiah’s body to go even better than planned.  We are asking for His angels to guide the hands of all of the medical staff who will be a part of Josiah’s case.
  3. That recovery and healing will be quick and as painless as possible.  And also grace and mercy over my husband and me as we tend to Josiah post-op and work through next steps at home (e.g. continuing to change his colostomy bag, eventual daily anal dilation, etc.) to prepare Josiah for his last two surgeries.

A couple of weeks after the surgery this Wednesday, Josiah will have one more procedure (that will still require general anesthesia).  The information his surgery team collects from that procedure will determine the final plans for Josiah’s major surgery in August.  After that, as long as the dilation process is going well at home, Josiah will have his final redirect surgery sometime in the fall (we are hoping everything is done by his first birthday/Thanksgiving).

To all of our prayer warriors who are fighting alongside us…thank you.  Truly.  I wish I could reach out and give you each a virtual hug.  Your declarations of truth before His throne of grace strengthen us in ways you cannot even imagine.

The road ahead looks long and it’s definitely not going to be easy.  But this I know.  It’s going to be good.  And it’s going to be glorious.

An Opportunity

As typical first-time parents, whenever people would ask us whether we wanted a boy or a girl when I was pregnant, we would always respond with something like, “You know, it doesn’t really matter either way.  All we really want is for this baby to be healthy.”

Fast forward several months later and there we were in the NICU, staring down at our 29-week-old baby boy hooked up to machines and monitors that were literally keeping him alive.

I still remember the chaos that was storming inside of me as I walked up to his incubator for the first time.  As everything started to look like a rainy windshield, I vaguely realized there were doctors, nurses, and specialists going in and out of our room, murmuring strange things like, “absent left kidney…”, “a hole in his heart…”, “possible tethered spinal cord…”, “surgery first thing tomorrow morning…”

As the shock began to wear off and the reality of our son’s prognosis began to set in, I dared myself to ask the question that had been nagging at my weary soul – “God…why?”

Google only proved to exponentially multiply the fear, worry, and dismay.  As words like, birth defect…” ,”exact cause unknown…”, “1 in 5,000…”, “1 in 400,000…” floated across the screen, it only caused the question to echo louder and louder in the recesses of my soul – “God…WHY?  Why our son?”

I was (and sometimes still am) stuck between a rock and a hard place.  I know that He is the Good Father, the Almighty God, the Great Physician, the Giver of Life.  I know that He fearfully and wonderfully made my son.  I know that He works miracles, heals the sick, and raises the dead to life.  I know that He loves His children and desires to give them the very best.

And sometimes the gravity of this Truth in the face of the impossible leaves me awestruck.  It compels me to rise up from the despair and declare that once again, my son will be fully healed.

But sometimes the disparity of this Truth in the face of the impossible leaves me conflicted.  I’ve asked this so many times I’ve lost count – God, You don’t do birth defects.  That’s not in Your nature.  That’s not what you do as the Almighty Father God.  So why does Josiah have this ‘birth defect?’  How does this make sense?”

I wish I could say that I’ve heard an answer.  That I’ve heard His audible voice or seen the presence of an angel.

But then I wonder…if Josiah’s birth hadn’t happened this way, if he hadn’t had any of these medical conditions…would I have prayed as fervently as I have in the last several months?  Would I have been stretched to believe in the impossible, not because I’m some superwoman of faith, but because there IS NO OTHER OPTION but for my son to be healed?

Would I have witnessed miracle after miracle, seeing him grow from a 2 lb. 6 oz. tiny baby only just a bit bigger than a dollar bill to the almost 15 pound happy chunker that he is today?  Would I have experienced the awe in hearing the incredible news that the two holes in his heart have closed up with no intervention only five months after his early birth?  And I’m only just getting started!

Now don’t get me wrong…I’m human and I’m a mom.  If I had to choose between my son having medical conditions or my son being a healthy, normal boy, I would choose the latter in a heartbeat.

But here in the tension of what is and what truly is, we’ve been given an opportunity.

An opportunity to testify that God is alive and at work through the prayers of His people.  An opportunity to actually witness creative miracles come to pass.  An opportunity for our faith to be strengthened in the refiner’s fire.  An opportunity to find treasures in the heart of the Almighty Father.

I still don’t know the answer to  “God…why?”  And maybe we will never fully know the answer.  But I do know this.  We’ve been given a precious opportunity.  One that maybe only 1 in 400,000 families gets to experience.  And I trust that on the other side of this, we will taste of His goodness in ways that we cannot yet fathom.

 

Celebrating 100 Days & Much More // An Update on Josiah

It’s been a while since I’ve written an update on Josiah here on the blog and a lot has happened!  Over the last six weeks, most days have felt like that popular parenting quote – “the days are long, but the years are short” – or however it goes.  There are days when I feel like all I have done is feed and keep a little human alive, and if I’ve showered or brushed my teeth, it’s been a REALLY good day.

But then there are those magical moments…those I-just-want-to-freeze-time-is-this-really-my-life moments…and the gratitude just overflows.  These are the wonderful things that I could only dream about when we were in the NICU.  And now, we are actually living this dream.  Here are some of the highlights below…

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This is literally a miracle.  Josiah is now almost TEN pounds.  Double digits, people!  I remember the times in the NICU when we were just rooting for him to get to three pounds.   When I look at this then-and-now picture, I can’t even find the words.  So beyond thankful for those chubby cheeks and fingers! Read more…

A Day in the Life of a NICU Mom

Josiah has been home for a week and for the most part, it’s been a smooth transition (minus the times I’ve almost fallen asleep nursing him at 3 in the morning 🙂 ).

But before I get caught up in all the daily little and big things that come with being a mom, I wanted to take the time to reflect and remember what my life was like as a NICU mom.

Because as painful as those 9 weeks were, that was the first time I truly experienced how His grace could be sufficient enough for me.  Those slow weeks showed me what I was capable of when I believed in my Good Father, that He would carry me through.

The 10 foot by 10 foot space that was Josiah’s NICU room became my own little sanctuary.  Behind that closed curtain, I danced with my son for the first time to the tune of the mobile playing above his crib.  It was where I dreamed about a day when Josiah would run and play, and wept with countless tears asking the Lord for strength I didn’t even know how to ask for.

It’s where we faced terrifying moments that tested our faith, all the while looking at the face of our precious, sweet son who was braver and stronger than us.

These pictures below represent just a snapshot of what my daily life was like from November 20, 2016 to January 23, 2017.  It was filled with lots of “firsts” – Josiah’s first nursery, crib, Thanksgiving, Christmas, New Year’s, nursing and eating, and bath time…just to name a few.  Our brave little man also endured his first surgery, ultrasound, and MRI during that time as well.  But he was always surrounded by a state-of-the-art medical team who became more like family to us during our 9 week stay.  And without all of this, Josiah would not be able to be with us today.  So for all that those 9 weeks were – the most miraculous, terrifying, heart-breaking, glorious season of my life thus far – I want to remember it all fondly.  It’s become a part of me in a way that I will never forget.

And one day, my sweet son, you may be reading this as well.  And although you of course won’t remember any of it, I want you to know how incredible your birth was.  How miraculously the Lord broke in and healed you in ways that nobody could explain.  How brave you were and how proud of you we are, your daddy and I.  This is your story as much as it is mommy’s and daddy’s.  Now it’s yours for the telling.

 

Josiah is Home! // One Word for 2017

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On Monday, January 23rd, after just over 9 weeks in the NICU, our miracle boy came home!

Even though he’s been home for a week now, it’s still a little surreal.  Sometimes I get up from nursing Josiah and I glance at myself quickly in the mirror and think, “Woah, there’s actually a real baby in my arms, in our home right now!”  And as hard as it is to continually nurse and care for a little one all through the day and night (I fully believe I never understood the meaning of exhaustion until I become a mom!), I cannot even begin to express the emotions welling up from deep within the recesses of my heart.

The day before we finally got discharged from the NICU, one of the nurse practitioners came by to do her final assessment of Josiah.  We started reflecting on his progress over the last 9 weeks (you can read more on that here and here).  Apart from his VACTERL syndrome imperforate anus condition (which he would have had even if he had made it to full term), he had almost no preemie-related issues (e.g. breathing problems, digestive problems, feeding issues, etc.).

She went on to say, “Honestly, for how early he was born at 29 weeks and for not having any of those preemie issues, all I can say is that this was a miracle.  He literally is a miracle.”

And in that moment, 9 weeks of heartache…9 weeks of praying and crying before the Lord…9 weeks of asking hard questions…everything, all of it, was justified.  

Her simple confession, both as a medical professional and as an “outsider” (not a family member or close friend) wholly validated all that we had gone through.

Already, in just two months of life, our son is a living testimony of how God is real and He loves to do the impossible.

Last year, I chose the word “Immanuel” as my One Word for 2016, and reflecting upon all that we had gone through at the end of last year…He truly, truly was with us.  There is no other way we would have made it.

And as the year closed and a new one began, I felt the stirring on my heart to believe.  To reach for the impossible in a deeper, daily way.

To declare that this year, 2017 is going to be about miracles.  

After all, I’m looking at one every day.

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To the countless ones who prayed with us during these last 9 weeks, we are indebted to you.  Thank you for being our village, our home team, and for carrying us through this season.  We are so thankful to have him home.

Reflecting on Immanuel

The last couple of days, it’s been harder to answer the question, “How are you really doing?”  The truth is, I’m okay, I really am.  And I know one day, this will all be part of the story.

But at the same time, I’m wrestling.  I’m struggling to contain the whirlwind of emotions and I’m not sure what to do when I find an unexpected leak here and there.

When we started calling and texting all of our family to tell them that Josiah had come early, my aunt shared with me something I didn’t know I needed to hear until I had heard it…and it’s been echoing in the recesses of my soul ever since…

It’s okay to cry.  It’s okay to ask God, “Why??”  It’s okay to face the wave of emotions that will continue to come.  Your tears and your questions are not coming out of a place of unbelief.  You need to ask.  You need to wrestle.  You need to process.  Because when you do all of that before the God who is full of grace and mercy, you will begin to hear His voice.  

I have declared the truth and I will continue to declare it all the days of my life – the promise of God is that He will heal Josiah.  And something immeasurably glorious is going to come out of all of this.

But some days it’s still hard.

The day before Christmas Eve, the NICU organized a toy shoppe event at the hospital where parents could come and receive toys and gifts for their child.  We browsed through the vast selection of donated items, imagining the day when Josiah will one day play with mega blocks and toy trucks.

We got back to his room to find the monitors beeping and Josiah crying in his incubator.

My heart broke.

How many other times has our little boy been crying in his incubator because his diaper is wet or his tummy is hungry and there is no mommy or daddy to meet his basic needs?

On Christmas day, we were making the hour long drive after church to the NICU when I started to replay that scene in my head again, asking myself that same question once more.

God…why?  I asked.  He’s alone right now in his incubator.  What if he’s hungry?  What if he knows that mommy and daddy aren’t there?  How is it okay that my child is 34 weeks gestation, should have been in my womb for 6 more weeks, yet he already knows what it is like to be lonely?

And that’s when I heard Him.  It was a whisper, but it was clear.

I AM with him, child.

The tears started to flow.

Immanuel.  God with us.  It was the word that I had chosen for my One Word for 2016.  It was the word that I had claimed for this year, not fully realizing just how perfectly it would come to pass.

This journey has only just begun.  Our first steps into parenthood have brought us into uncharted territory.  I know there will be more days that break my heart, but also more moments that will take my breath away and cause me to wonder how I ever could have lived any other way.  There is a whole future unfolding before us that we are only beginning to grasp.

But this I know.  Immanuel.  He is with us.  Today, tomorrow, and the next.  He will never leave us.  Through our treasured days and our dark nights of the soul, we are never alone.