We’ve Come a Long Way // An Update on Josiah

I can hardly believe it’s already July and this is only my fourth post this year!

Actually, well yes, I can believe it.  Because despite all of my good intentions and the many blog ideas that are recorded on my phone, my days are now mostly filled with this kind of fun…

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Don’t even get me started on the time I found him in the living room, in his birthday suit, playing with his diaper…the diaper I had just put on him about 30 seconds earlier.

Thank the good Shepherd there was no poop in that diaper! 🙂

Speaking of poop, a lot has happened since my last post about Josiah‘s progress after his last surgery in January. Read more…

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Celebrating Our Miracle // An Update on Josiah

Hi world!

I know, it’s been a long while since I’ve posted anything.  Is it just me or is 2018 flying by?

We’ve had so many beloved family and friends asking about our not-so-little-anymore miracle boy and his progress post-surgery.  Now that we are nearly three months post-op, it’s due time that I sent out a little update.

Long story, short…he’s doing REALLY well!  PTL! 🙂 Read more…

The End & The Beginning // An Update on Josiah

A year ago, I could not fathom how we were going to get through 2017.  We were just about to leave the NICU after 9 weeks, knowing that we would make the hospital our second home with the multiple surgeries and follow up appointments Josiah would need.

Yet, here we are a year later, three surgeries down and only one more to go.

It was only possible by the grace of God and by your prayers.  Truly.

And as we head into this last surgery, we are anchoring our souls on that truth once more.  That His grace is truly sufficient enough for us and the prayers of a righteous person are powerful and effective.

So, what does this last surgery look like and what does it mean for Josiah? Read more…

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.

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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.