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.”

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.

FullSizeRender (42)

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.

One Day

My dear son,

I remember that moment like it was yesterday.  You were still in the NICU, but we had just gotten the news that you were going to be discharged earlier than expected.  Mommy had not yet finished your nursery, so she found herself standing in a long line at IKEA that morning before heading to the hospital.

Behind me was a family with two little boys, probably about six and eight-years-old.  They were running in and around the bins of extra stuff IKEA tries to entice you to buy while you’re checking out, making a huge, fun mess of things.  Without even turning around I knew that their tired mommy was giving them the “you-better-stop-this-right-now” look.

As I watched their little mischievous antics, I found myself asking the same question I had been asking on repeat since you were born – “When will Josiah be big enough to run around and play like that?”  

At the Baby Gap store, it was, “When will Josiah be big enough to wear newborn-sized clothes?”  At Costco, it was, “When will Josiah be big enough to be in size one diapers?”  You get the idea.

Right then, I heard the two older women in the line next to us comment on how cute the little boys were and how it seemed like yesterday their own children were that age. Read more…

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…

FullSizeRender (35)

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…

The Ugly Beautiful of Motherhood

dsc02614

 

It’s funny that I use this picture to start this post because this is everything I imagined motherhood would be – soft lighting, sweet babe wrapped up in a ridiculously overpriced muslin blanket, and hair perfectly curled while wearing pre-pregnancy clothes.

And yes, this is still a part of motherhood.  But it’s just one second of it.  One perfectly captured still shot.

What you don’t see in this picture is that the sweet babe was up almost every two hours the night before, wanting to nurse for at least 30 minutes each time because he’s hit a growth spurt.  And this is the first time you’ve used a curling iron in months.  And you’re still sporting your maternity jeans not because you can’t fit back into pre-pregnancy jeans but because who really wants to traverse back into the land of zippers and buttons anyway??

I’m only about 100 days into this being a mom thing so I am not claiming to have it all figured out.

But here’s what I have realized thus far.

Motherhood will take all of your idyllic Instagram-worthy daydreams and shatter it into a million pieces.  Because even after you’ve spent months preparing and planning for how this little human being will change your life, you’re never, ever ready for it.  There is no way to prepare yourself for how becoming a mom will utterly and completely change your soul in all the ugly and beautiful ways.

Motherhood is the ultimate lesson in learning how to die.  There’s an old life…an old you…that can never ever exist ever again once you’ve birthed another human being and are now in charge of keeping said human being alive in this world.  It’s like you see pictures of your “pre-mom” self and you don’t even know who that girl is.  And as selfish as it may seem, you find that you need some time and space to grieve the death of who you once used to be.

As if dying isn’t enough, motherhood is also a constant journey through the refiner’s fire.  Just when you think you’ve learned how to surrender, how to let go and trust in His ways, you find yourself back in the flames.  Every part of you that ever entertained the silly notion that you could have any control over anything gets burned away.

But out of the ashes, another you that you never imagined comes to life.  A better, stronger, more compassionate you.  A more selfless and humble you.  A you that cannot help but grow more and more dependent upon a miracle-working God, the good, good Father.

And in the midst of the mundane chaos that is daily motherhood, it’s in the moments when you lock eyes with this little life you have been entrusted with…when you feel as though you can see deep into this little one’s soul…that’s when you get caught up in the delicate beauty of it all.

That somehow, as imperfect and as broken as you may be, you were given this little life, this beautiful, precious little life to steward and give back to the One who created all things.

You were the one chosen to be this little one’s momma.

Motherhood may be the messiest thing I have ever gotten into yet.  But when my son’s little, chubby fingers are wrapped around mine, when he opens his eyes and looks straight into my heart, I just want to freeze time.  Because I know that this moment…this sweet, fragile moment is the most beautiful life I could have ever dreamed of.

 

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.