"Jesus told me, Mommy!"

Today marks the anniversary, of sorts, of a day that we will never forget.... a day when our faith in God's plan for our family changed forever... it was stretched and deepened profoundly.

You see, our sweet boy just celebrated his 1st birthday...

but 1 year ago today, we still didn't know him...

he was lying in a hospital incubator, 10 days old, fighting for his life...

And we were still waiting for our #2....

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Let's flash- back to April 1, 2012;

Hi friends :-) It's been a while and I sat down tonight to write a long-overdue blog post/ update ... I just can't. To admit that we are 18 months into this second adoption wait, to try and justify why it's been that long, to reminisce about how much time we've 'wasted' waiting on different situations, and to act like it's all ok because God still has a plan.... Feels kind of fake. Since I can't find words, I'll let God choose them for me...

"Love is never tired of waiting."1 Corinthians 13:4

Last week Joey and I admitted that we were both just tired of waiting... and every time we feel that way God shows up to offer a light, some encouragement, and something to look forward to. Today, we are thankful for some light, are feeling encouraged, and are looking forward... We will never grow tired of waiting for our baby :-)

That was my Facebook post earlier this week and you know, it's really true;

We haven't grown tired of waiting... because well, we'd wait a lifetime if that's what it took to bring our next baby home. Just because we aren't tired doesn't mean that we aren't frustrated or confused or even angry sometimes... or a lot of times. We haven't given up and to me, that means that each morning we wake up refreshed and hopeful and 'good-anxious'... and we rejoice in the fact that we made it through one more day that has gotten us closer to our baby. THAT is worth the frustration, confusion, and anger, is it not?

Nope, Joey and I are doing fine... living one day at a time and doing our best to trust that God's plan is better than our own (but seriously, I CAN'T wait to see HOW and WHEN His plan will be better than my own... because my own is pretty damn good!), ((Sorry I used the 'D' word :-/)), (((Does infertility and/or adoption bring out your dirty mouth? I didn't even know I had one until infertility and adoption!!)

If you're 'waiting' or if you've ever 'waited', you know the magnitude of what I'm going to say... you know that it pierces your heart, makes you sick to your stomach, and gives you goosebumps all at the same time. Mostly, it just makes me more frustrated and confused and angry when I realize that

 we are not the only one's who are hurting through this wait... who are anxious and excited and hopeful. Our children are, too.

We have prepared our sweet girl 3 (T.H.R.E.E) times this year for her role as big sister... as in; "hurry and wash the baby clothes, unpack the car seat, clean the house, and start packing" kind of preparation. One of those times was a slower process but felt just the same when those babies didn't wear the clothes, sit in the car seat, or come home. Because of how difficult this past year has been, Joey and I have been EXTREMELY cautious around Hannah... we simply do not discuss 'baby' anything in her presence. If we get an email from an expectant mom or hear about a situation through an attorney, we wait and discuss it when Hannah's napping or in bed. While we DO pray for Hannah's baby brother or sister some nights at bedtime (it IS important for her to know that when baby comes home, it means that Jesus answered our prayers!), we just want to protect her as much as we can from the possibility of being 'heartbroken'... again.

Well...

Joey and I were getting dressed this morning and Hannah came tearing into our room.... full force yelling, "Mommy Daddy Mommy Daddy!!!! I'm so excited! My baby brother is coming home tonight!!!!"

Now imagine... how do you respond to this?

Well, if you're us, you get immediate goosebumps and stand there like idiots with your mouths hanging open.

I mean, how can you not be a little shocked/freaked out?

When we recovered, we hugged our bouncing 3 year old and moved on... what do you SAY???

Our day was fun; lunch at a fun place since Daddy was home today, puzzles, books, planted a tree, and made sugar cookies. Hannah wasn't into dinner tonight so we said the customary, "You can get down from the table but you don't get any treats until you eat your 5 bites" and she ran to play in the play room.

Joey and I finished eating and about 10 minutes later Hannah came running into the kitchen yelling, "My baby brother is almost here!! He';s on his way, he's almost here! Hurry I have to eat my dinner!  I don't know what car he's in.... let's go watch for him!"

By this time, Joey and I are a little more than confused/freaked out and I finally asked Hannah... "Who told you that your baby brother is coming home tonight?"

Hannah looked sweetly from her Daddy to me and said...

"Jesus told me, Mommy!"

Of course He did....

Ugh.

In the same extremely mature and sophisticated way in which we typically communicate with our daughter...

Joey changed the subject.

(Okay really?!?! Like you wouldn't have done the same thing!)

It was then that I felt sick to my stomach... and guilty... and angry... and confused... and in some strange way...

hopeful.

Here's the thing...

Most moms and dads would hear that from their child, dismiss it, and think, "There's no way that could happen, anyway... a baby showing up on our door step tonight! Ha!"

But... we met Hannah's birth-parents on a Thursday night, and picked up our baby-girl on Friday morning... 13 hours later.

Not so crazy, after all.

Back to the kitchen tonight....  me feeling sick.... my 'inner me' started running her mouth...

"It's Easter weekend.... it's the absolute perfect time to bring our baby home! Maybe she's right... God says that we need to have faith like a child, right? What if we DO bring our baby home this weekend?"

 “Truly, I say to you, unless you turn and have faith like children, you will never enter the kingdom of heaven.

~Matthew 18:3

But here's what followed...

"What are you talking about?! EVERY SINGLE STINKING DAY FOR THE PAST YEAR HAS BEEN THE PERFECT DAY TO BRING OUR BABY HOME!!!!!"

So much for faith, huh?

Joey and I talked later on about how we should proceed with Hannah since she's obviously very aware, despite our best efforts to protect her, of this long 'wait' to become a big sister. We've learned (the hard way) that Scripture is always the best place to turn when you're at a loss...

But Jesus said, “Let the little children come to me and do not hinder them, for to such belongs the kingdom of heaven.”  

~Matthew 19:14

We will let her dream... we'll even dream with her.

We will let her be excited... and we'll allow ourselves to be excited (once again), too.
We will learn from her flawless and perfect faith... we need it.

And we will pray that God will continue to place His loving and profound words in her heart because I have to be honest... there are days when I listen to my daughter more than I listen to my Heavenly Father and quite frankly, that's not ok.

To me, Easter represents all things 'new'... Jesus rising from the grave, our sins being washed clean, the weather, flowers, trees, fresh fruits and vegetables...

So why not families, too???

We always knew that Hannah was 'advanced' (my dad's word ;-))...



 but today she taught her Mama a much-needed lesson in faith!

I love you, sweet girl and know without a shadow of a doubt that you will be the BEST big sister there ever was.... and hopefully soon!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 

That day, April 1, 2012, Hannah was absolutely convinced that her baby brother was on his way.

She knew.

How did she know?

"Jesus told me, Mommy!"

Friends...

He did.

April 1, 2012 was the day that Hunter's sweet First Mama relinquished her parental rights... not even knowing if her precious baby would be alive when she could come back and visit him on Easter morning.

By all legal terms, that sweet boy was our's...

we just didn't know.

We wouldn't know for 2 more weeks.

But Hannah knew.

She knew that she was a big sister...

But Jesus said, “Let the little children come to me and do not hinder them, for to such belongs the kingdom of heaven.”

~Matthew 19:14

And she was right;

Jesus told her heart.

Miracle #4 (Part I)~ Guest Post by Joey Smith; Audacious Faith

2012 is a year I will never forget.  There aren’t many years in my life that really stand out, but 2012 is a year that does.  2012 is the year I met my 2.5lb inspiration.  You have already read Lindsay’s posts about Hunter’s birth and how difficult things were.  We moved, lived in the hospital for a few months and lived apart from each other as we did what we had to do to keep our family together and moving forward. 

 

I’m going to fast forward through our two and a half months in the NICU to one of the toughest things I have ever experienced.  The day we were supposed to bring Hunter home from NICU number 1. The day they told us he was going to die.

 

As we got closer to the day Hunter was supposed to go home, we became more and more excited.  We had seen Hunter overcome so much and in our eyes he was growing and doing great.  The day Hunter was supposed to be discharged Lindsay went to the hospital early in the morning.  I got to there late the night before so I slept in that morning.  I had just gotten up and got moving when I received Lindsay’s text.  “You need to get here right now”.  All I could think was, something bad happened to Hunter.  Lindsay had been essentially living by herself for the past 6 weeks so she could be near Hunter and she had been so strong. I hadn't gotten a text like that from her so I knew something was really wrong.

 

When I got to the hospital I went into the NICU and Lindsay was sitting there crying with Hunter’s doctor standing in front of her, his hand on her shoulder.  I walked up to the doctor and asked him what the problem was.  He began to explain that he had discovered something with Hunter’s most recent medical tests that he had not seen before in Hunter's tests and had only seen a handful of times in his career.  He  proceeded to tell me that Hunter would live a short life and his quality of life would slowly decrease  As Lindsay was trying to hold it together I was trying to understand where this had come from, why it had not been seen before and I felt desperate for more details about this diagnosis.   The doctor left, saying that he would call a meeting that morning with us and all of Hunter's specialists, and that we would learn more then. Lindsay had run out of the NICU already and before I could find her I had to collect myself. I picked up Hunter, kissed him on the head and laid him back down. I walked out of the NICU as fast as I could as I felt myself falling apart.  I did not want Lindsay to see me.  I had to hold it together.  I walked into the courtyard and called my mom.  I explained to her what the doctor said and she started crying on the other end of the phone.  I asked her make the trip to come help us.  I didn't know what we needed but I knew we needed family there. I also know my wife and I knew she was already on the phone with her mom. I knew her mom would come as soon as she could, too.

 

All I could think was “We have to get home.”  I had to get my family and son home to some kind of normal life and to some of the best specialists in the country. After I hung up with my mom I called our adoption agency. Hunter was in their custody until discharge and they needed to know the latest news.

Our agency is small and we have built a great relationship with everyone that works there.  When I called 'D' (the agency director) I explained to her what the doctor had just told us. 'D's response caught me off guard. "You don't have to keep this baby."  Bad choice of words. Still, she was in shock, too and her intentions were pure. I don’t tell you this that to be negative.  I say that to tell you that she was willing to do whatever she could to support US and what we thought was best for us and our family.  We had another child to consider.  We had to decide what was best for our family.  I immediately cut her off and without thinking, the words just came out…”This is our son and we aren’t going anywhere.  We are not leaving him.  I just have to figure out how to get him home. Quickly.”  Hunter had fought so hard to get to this point.  What kind of person would I be if I gave up on him now?  How could I look at myself every morning or explain to Hannah what happened, what WE did, if we quit on him?  I have never had to make a decision like that.  One that involved life or death.   Lindsay and I didn’t need to discuss it, we were both on the same page.  This was our son.   I said it the first time I held him and I knew she felt the same way.

 

I hung up the phone and reaction mode kicked in.  Now I have to figure out what to do.  I have to get Hunter to home.  That is where we have support, friends, family, church and that is where one of the best children’s hospitals in the country is.  It’s time to be a man and make big decisions.  I pulled myself together, got a drink of water and went back into the NICU.  Lindsay was already back with Hunter, holding him.  I couldn't make eye contact with her yet. I looked at the doctor who had just given us Hunter’s death sentence and told him to call the hospital closest to us and arrange transportation.  By this time, some family members who had connections at that Children's hospital had already called and spoken to the hospital administrator.  They sent a jet and team of people to pick Hunter up.  Hunter was on the plane and in his new NICU in less than 2 hours.  (Read Lindsay’s post about the first time Hannah met her brother).  We cancelled our meeting, requested that every single medical record be sent IN PAPER to the next NICU, and we loaded up the cars and made plans to get home as fast as we could. 

 

In my hurry to get to the NICU that morning, I had grabbed my ipad on the way out the door.  After the phone call with our agency I picked up my iPad and opened Pastor Steven Furtick’s book “Sun Stand Still”.  I had read the book three times before and I always got something new out of it.  This time I was reading for specific phrases.  I was looking for a promise that everything would be ok.  I read the same verse over and over again....

 

Joshua 1:5 ^5 “No one will be able to stand against you all the days of your life. As I was with Moses, so I will be with you; I will never leave you nor forsake you.” 

 

I have loved this verse since I was young.  I like to consider it my life verse.  But this time it had a whole different meaning;  Whatever the outcome, good or bad, God was going to be with us.  He alone would get us through anything.  I had a responsibility to trust him and listen. He would tell me what I needed to do to help my family. To help my son. He had brought us this far and he would take care of the rest.  He would never leave us or forsake us.  This was His plan for our lives at this moment and that was all that mattered.  Everything else was secondary.  It was like God kept telling me to be still…just be still.  Then I read another verse...

 

Exodus 14:14 “The Lord will fight for you; you need only to be still”.

 

Hunter would be ok. I didn't know what that looked like at that moment but I had to trust the God who had already saved my son too many times to count. He would be ok. 

 

There is something very special about both of our children. Hannah has the sweetest heart of any child I have ever known. She is an angel. Hunter is tough as nails. He is a fighter. He is not going to give up. God brought him this far and he didn’t bring him this far to let something bad happen. He didn't bring him this far so he could die. I like to think I realized all of this the first time I held Hunter, but the truth is, I had thought about it, but I didn’t really believe it. I didn’t have enough faith to truly believe it. I couldn’t guarantee that something bad wouldn’t happen. I didn't find that guarantee but I did find God's promise to never leave us and to fight for us. Hunter had fought hard already but now I knew with all my heart that God was in the fight with him.

 

As you know now, Hunter is growing and thriving.  I'll let Lindsay finish the story of this miracle in another post. As a husband and father there are no words to describe what it’s like to see your family in turmoil.  The worst part is that you are expected to be the strong one and the one who holds it together for everyone else.  I have bared the weight of that responsibility since I was a kid.  I have to tell you, I have never prayed and trusted God more at any other time in my life than I did when we decided to take our son home. To top it off, we were taking him home against the advice of the doctor's who had known him since birth.  I was terrified.  What if Hunter doesn’t make it?  How are we going to explain all of this to Hannah?  How is Lindsay going to hold up through all of this?  How much more can she take?

 

Then I realized….we don’t have time to worry about these things…..and we don’t need to.  God was telling us to trust him and let him show the world how big He is.    

 

“….… don’t you dare let the magnitude of your fears send you back to dry land.  Keep moving out deeper.  Keep reaching up.”

~ Pastor Steven Furtick

 

I have learned more from Hunter than he may ever learn from me.  He is a strong young man with determination, fight and perseverance.  He will go far in life.  I have no doubt about that.  He will accomplish whatever he wants in life.  I will never forget the late nights I would go to the hospital and hold him because I had been gone all week and just wanted to see him.  I would have held him all night if I could.  I always told him to keep fighting and that Daddy was here and I would do anything I could to take care of him.  The thing I didn’t realize is that I needed Hunter more than he needed me.  Hunter personifies the faith of a child.  The faith God calls all of us to have in Luke 18:17.   God had placed his hand on this baby and promised him a future.  Now God was using Hunter to show me that he had a plan for us.  His plan would grow my faith to levels I have never experienced and he used and is still using Hunter to do that.  I prayed Sun Stand Still prayers many times when Hunter was in the hospital.  I prayed harder than I have ever prayed for anything in my life.  I tried hard to hide any emotions from Lindsay and Hannah because I was afraid if they saw me worry or be afraid it would bring everyone down.  I had to remain positive and upbeat even when we were all physically and emotionally exhausted.  But I also had to learn how to be vulnerable. The emotions were real and I needed to feel them. I learned that Lindsay needed to see me feel them, too. Then I would go to the hospital by myself, hold my son and pray.  Pray for him, pray for strength, pray for understanding and pray that God would get us all home soon.  To whatever 'home' he chose.

 

Every time I hold Hunter I think about where he came from.  I still see that little boy fighting for life.  But the thing that will always stand out to me is the audacious faith that Hunter has in him and the faith he has brought out in everyone who experienced this time in our lives.  I've seen Hunter's story bring out the faith of people who read this blog, too. Hunter lives a Sun Stand Still life. God used this 2.5 pound miracle to turn my life upside down and radically alter my faith. 

 

Through all of this, the biggest thing I have realized is that God isn’t the one who tests our faith.  People and circumstances test our faith.  God never changes.  He never has and never will.  He has promised us that.  Faith is believing that our God is bigger than any circumstance.  The hardest part of faith is remembering that when you are staring your circumstance in the eye, God won’t blink. 

 

I would encourage each of you, no matter where you are or what you're going through to read Sun Stand Still by Pastor Furtick.  I hope that at some point in your life you experience a time that will be etched into your memory as a time that grew your faith exponentially.  If you have already experienced that time, I hope you will continue to build on it.  Never forget the promise we have been given...

      

Exodus 14:14 “The Lord will fight for you; you need only to be still”.

 

God doesn’t promise that everything will always be “ok”.  Sometimes the outcome isn’t what we want but it is the outcome God wants.  I had to be ok with that, too. Despite the circumstances or outcome he will never leave us.  He is always there and will always fight for us.  He fought for Hunter and he will fight for you.  Not only did he fight for Hunter, he brought Hunter home and at the same time he brought me home.  So when you feel like you have gone as far as you can and the world is testing your faith….LET IT!!  Because the more your faith is tested the more God can show off.  Keep going, keep moving forward and you may just witness a miracle.   

 

-          ~ Joey

 

**   I am very proud of my wife and the thousands of people she has reached through this blog.  Lindsay is blessed with the gift of writing and reaching people through her words.  I know God is using her in mighty ways. She is a wonderful wife and such an amazing mother. I am very lucky that God chose her for me. **

 

 

Miracle #3; Dear Baby Boy, Today is the day you stopped breathing.

I started a new blog during our 6 weeks away from home while Hunter was in the NICU. Such a small number of people were allowed to know about our sweet baby boy and those 6 weeks were so rough that I needed an outlet. I know we could never wear out the shoulders (or ears) of our moms but after hours and hours and weeks and weeks of crying on the phone to them... happy crying AND sad crying, of trying desperately to shake the raw emotions we were travelling through on a daily basis... I needed more.

 

So I did what I do.... I wrote.

I wrote Hunter's Story. Hunter's blog.... his private blog.

I've been hanging Miracle #3 over your heads for weeks, I know... out of all 3 miracles, #3 has been the hardest for me to write. Maybe because it's so fresh. Maybe because it was traumatic.

 

Maybe because it happened on my clock.


Maybe because I thought I had moved on and really, I'm still hanging on.

One of the things that kept Hunter in the hospital for a full 10 weeks was his apnea. Most preemies struggle to remember to breath in their first few weeks and months of life. In the hospital, an alarm will sound when a baby stops breathing... nurses run, shaken baby syndrome is forgotten ;-), oxygen is administered, and baby remembers to breath again. If baby doesn't start breathing, it's ok... you're in the hospital!

Taking home a baby who forgets to breath is challenging. Hunter came home on caffeine... yep. It is what I said it is.... small doses of caffeine administered to him by mouth daily. The caffeine keeps his brain alert enough around the clock, to remind his body to breath. We also brought him home on an apnea monitor. A foam strap wraps around Hunter's chest and holds electrodes snug against his skin. The monitor sounds alarms for various changes in his breathing and heart rate patterns. Much like the one in the hospital, our portable apnea monitor will sound a very loud alarm if Hunter stops breathing for 20 seconds or more.

If and when the alarm sounds, we run to him... and by 'run' I mean RUN.... or pull over.... or stop in the middle of the road.... or drop the phone..... you get the point. When an alarm sounds, first we look at him... we check out his color; is he pink, purple or blue? We look at his chest; is it rising and falling? If he's blue or purple or not breathing, we stimulate him... shake him gently, tap the bottom of his foot, reposition him. If moving and stimulating him doesn't wake him up and doesn't stop the alarm so we know he has started breathing again, we call 911 and begin CPR.

It's as scary as it sounds.

In order for Joey and I to be allowed to take Hunter home from the hospital we both had to take a CPR class... and we took it twice. We had both been certified in the past but when you take the class knowing full well that what you're learning could one day help you save your child's life.... well, you pay a little more attention.

Leaving the hospital, we were told that 'most' babies outgrow their apnea quickly and their monitor is only necessary for a few weeks at home.

Hunter is not 'most' babies.

Finding out if baby has outgrown his apnea is completely trial and error.... you stop their caffeine, which has a 3-5 day half-life. If there are no alarms after that 3-5 days it's safe to say that baby is old enough and mature enough to remember to breath on his/her own and the apnea monitor is no longer necessary. If alarms continue to sound after the caffeine's half-life, caffeine is started again and it's assumed that baby needs more time to grow.... and then you try again a few weeks later.

Keeping baby on his monitor is key to finding out if he has outgrown his apnea.... and I took it very seriously. Hunter was on his monitor 24/7 with the exception of when he took his bath. Awake, asleep, playing, in the car, being held... he was ALWAYS on his monitor.

We had hundreds of alarms in our first couple months home with Hunter. He slept in our room for a LONG time so he was within arms reach should his alarm sound. We used a special carseat called a Car Bed for quite a while so he was laying down in the car and not upright where his neck could fall on his chest and make breathing even more difficult for him than it already was.

He napped downstairs where I could see him at all times. Everyone who might even possibly be in a room alone with him at any time was given a mini lesson on the basics of CPR.... and the basics were posted on our fridge (and still are).

We were the ones you wanted to be around if you were going to stop breathing....

Miracle #3 has 4 drafts in my post list.... 4. As many times as I've written it out, I still can't get it right. And it's hard still, to get through it.

So... I think the best thing for me to do is to share with you the letter I wrote to Hunter in his private blog on June 29th, 2012...

The Day You Stopped Breathing

Hi Baby-Boy~

You stopped breathing today. Oh, you've done it before but today was different. Like, the turn purple, black rings around your eyes, start CPR and call 911 kind of stopped breathing.

I'll never forget today. Ever. And I pray that it will always remain the worst day of my life.

You were anxious today and more fussy than usual... I gave you a bath to calm you down. The problem with the bath is that you're amazingly calm and zen-like IN the bath but when the bath is over, all hell breaks loose.

Seriously.

I wrapped up your screaming, cold, angry self and plopped you in the swing so you could warm up and calm down. You hadn't had an apnea episode in 3 weeks so...

I didn't turn your monitor on.

I stripped the beds, started a load of laundry and thought to myself, "Finally... he's quite. I can get some stuff done."

And then I stopped. Something... someone told me to check on you. To hurry.

You were about 30 feet away from me in your swing... I turned around and looked at you...

Purple. Black rings around your eyes. Not moving.

Not breathing.

I started screaming. Loud screaming. Panicked screaming. Desperate screaming. Screaming your name.

I picked you up and I was rough... I wasn't gentle. I was desperate. I shook you... and was still screaming.

You didn't respond.


I remember thinking, "This is what a dead baby looks like."


I prayed. "God, PLEASE. PLEASE!"

He knew what I was asking.

Ms. Allison was there that day helping me with fussy you and active Big Sister. She had looked over from the kitchen and yelled, "he's purple!" She ran to us and I opened my mouth to tell her to call 911 ...



the smallest sound.



No moving... just sound.


I don't know how I heard it over my screaming.



I grabbed you and held you... tight.

It took about 10 seconds that felt like 10 hours for you to start crying... a strong cry. But you did it. I cried. I sobbed.

I handed you over to Ms. Allison..... you were safer with her.

I called your doctor. I told the receptionist to call your doctor... not the nurse, not his voicemail, THE DOCTOR. "Go get him yourself if you have to.... I need to talk to him RIGHT NOW." She paged him. He called me 2 minutes later.

We started your caffeine moments later and upped your dose I promised to keep you on your monitor.

I didn't have you on your monitor.

Me.

The thing is, Baby Boy.... 5 more seconds and I wouldn't have been able to wake you up.

But 5 seconds sooner than too-late God told me to check on you. He didn't push me or scream like I did... He told me. Gently. And I listened.

Thank God I listened.

I know that I have to get past the blame game... Your Daddy, Ms. Allison, your doctor... everyone has told me I didn't do anyting wrong but I did... I didn't put you on your monitor. That's just the truth. I knew better.

I'm working on that part.... but there's one thing I can't I can get past;

That... what happened to you... that's SIDS. Parents who finally have a chance to get things done, realize their baby has been quiet... too quiet... and it's too late.

5 second too late? A minute? An hour?

I know they ask those questions.

I read their blogs.

I've wondered so many times since bringing you home why EVERY baby can't come home with a monitor.

'Autopsy is inconclusive.'

'Reason for death unknown.'

"If I had only checked on him a few minutes earlier... would it have made a difference?"

"I never should have let him sleep that long."

I know those mamas and daddies ask themselves those questions...

I'm so thankful that I don't have to.

But my heart hurts for those mamas and daddies... because today could have ended so much differently than it did.



Baby-boy.... I've never met anyone quite like you. I've always believed that God is capable of performing miracles.... not just Bible miracles but today miracles. I know I've witnessed them... but never like this. Never like I have since God brought you to me. You're a miracle over and over again.... your life, your story, your growing testimony.... miracles.

You have wrecked me. In the most beautiful, scary, miraculous, terrifying way, you have wrecked me.

I refuse to worry about you, sweet boy because God has you so firmly held in His powerful grip that nothing can get to you.

He held you today and he'll continue holding you... just like He did today.

Just breathe, Baby-Boy... Please just breathe.

I love you more than life itself,

~Mama

Miracle #3 happened on June 29. Since then, Hunter has only had 2 significant alarms.... both alarms were apneas that he brought himself out of before Joey or I needed to intervene. By medical terms, he has outgrown his apnea.

Not in Mama Terms.

Hunter's doctor has been more than understanding as I sit in his office every couple weeks and stare him down, daring him to try and take that monitor away from me.

He is so gracious.

He has 'fudged' every report he writes so he can find one tiny little reason for insurance to believe that Hunter's monitor is still 'medically necessary.'

As if 'Mama's sanity' isn't reason enough.

He gave me his cell phone number.

I will never take my children's lives for granted. My mistakes or not... God has them in His grasp... and that's the only place I want them to be.

Love at First Sight....

Click the following links to catch up on Hunter's story, so far... it'll take a while to tell so we'll take it slow;

 

1) Our 2 pound, 13 ounce Miracle

 

2) "Jesus Told Me, Mommy!"

 

3) Our Home Away From Home

 

4) Miracle #2; "Jesus Lives in His Heart..."

 

 

We had been living in our Home Away From Home for 6 weeks when we heard the words we had been waiting to hear for so long... "Hunter can go home tomorrow!" We quickly packed up our stuff ... 6 weeks worth of stuff... and made arrangements to go home the next morning.... Joey's mom and my mom would make the drive with us.

 

I had made it a habit over the past 6 weeks to call the NICU every couple of hours during times when I couldn't be there... the nurses came to expect my calls and always gave me the most detailed updates on how he was doing; if you know anything about the NICU, it's that things can change in a flash... I would call and hold my breath, praying that nothing had changed in the time we were away from our baby.

 

The next day we had plans to meet Hunter's team at 10am for discharge instructions, to oversee all of his 'final' ultrasounds and blood work, and to talk to each of his many specialists before making the trip home. We also had to line up each of his follow-up appointments for the coming weeks with his new specialists. In true Lindsay fashion, I called the NICU at 9am just to check in (yes, even though we would BE there in less than an hour).... This time, Hunter's nurse asked me to hang on because the RN wanted to talk to me...

 

Uh. oh.

 

Joey and my mom were packing our stuff and getting ready to load it all in our cars... I caught Joey's eye and shook my head 'no'; I knew we wouldn't be taking him home that day, as planned.

 

The RN explained to me that Hunter had experienced dozens of Brady's and Apnea's throughout the night. A Brady is an extreme jump or plummet in heart rate... most of the time, Hunter would bring his heart rate right back up on his own but that night, he had required some stimulation from the nurses to help him bring it up. At times, he required extra Oxygen and most of the time, the Brady's were associated with Apnea's, where Hunter wouldn't breathe for 20 seconds or longer... these were the times that he needed direct stimulation. Our first concern was for Hunter's heart.... and we were assured that his Brady's were NOT heart-related but WERE symptoms of his soon-to-be diagnosis of Apnea of Prematurity... another result of his extreme prematurity and a sign that his body was still trying to catch up with him. Most babies grow out of their Apnea fairly quickly... but Hunter is most definitely not 'most' babies ;-)

 

Those times.... during an Apnea... were the scariest moments in all our time in the NICU.

 

Those are STILL the scary times.

 

We had already planned to bring Hunter home on an Apnea monitor as a precaution so if he experienced any Apnea's at home, we would know and would be able to get to him quickly if he needed help. We had completed training the day before so we would know how to use the monitor at home.

 

Because he had experienced so many Brady's and Apnea's the night before, Hunter's Neonatologist wasn't comfortable putting Hunter in a car for several hours so we could get home... as devastated as we were to learn we wouldn't be taking him home that day, Joey and I had also considered our worst-case scenarios the night before; what would we do if Hunter stopped breathing on the high-way? We had been required to take CPR at the hospital the week before.... but were we really prepared to do CPR on our own son?! And more...

 

We were somewhat relieved.

 

But we wanted desperately to go home.

 

We came to an agreement; Hunter's Neonatologist was 100% comfortable transferring Hunter to our local hospital, if he could be transported by air; the quickest way possible. Going directly to his new NICU would also give us time to meet his new specialists and to make sure we knew for sure, the exact reason for his Brady's and Apnea's... it would extend his NICU stay even more but the information we would get would end up being invaluable; as shown in Miracle #2!

 

He made a few calls and within 2 hours, a team of 6 Transporters made their way into Hunter's NICU room.

 

I had one request before Hunter boarded his jet...

 

He needed to meet his big sister.

 

Flu season, or not... Health codes, or not...

 

Our 2 kids, our 2 miracles, had been in each other's lives for 6 weeks and had yet to set eyes on one another.

 

We had also prepared Hannah the night before to meet her Baby Brother.... when we thought he was coming home. She was going to be completely broken if we had to leave our Home Away From Home without her Baby Brother...

 

 

 

 

Though Hannah still couldn't go in the NICU because of RSV and flu season, the Transport Team agreed to take Hunter out one of the front doors so Hannah could meet him on his way to his jet.... they were amazing! Joey and I helped Hunter get settled in his 'pod' on a stretcher, one of the team sang to Hunter, another team member asked me for his favorite pacifier, blanket, bottles, and anything else they might use to ease any anxiety he might feel as he ventured out of the NICU for the first time....

 

 

We then headed down the long NICU hall-way... the one we had walked thousands of times in the past 6 weeks... the one I ran down so I could call Joey and tell him about Hunter's first bottle feeding.... the one Joey and I ran down, both sobbing, trying to call our parents moments after hearing (one of the many times) that our baby boy wouldn't live much longer.... the one I met dozens of nurses, doctors, and social workers in who became my family... That hall-way.

 

 

But this time, Hannah was waiting at the end ....

(I was in a full run to catch up when I took this picture so it's blurry... can you see my mom holding Hannah?!)

 

And finally.... FINALLY.... Big Sister got to meet her precious, long-awaited Baby Brother for the very first time...

 

To our surprise, the Transport Team opened Hunter's pod so Hannah could touch him... to know he was real... so he would know she was there...

 

It was a moment that will be engraved in our minds forever....

 



 

And then....

 

They let her kiss him...

 

 

And we said good-bye.... for now....

 

 

What you can't see on the other side of this camera is the huge crowd of nurses, doctors, admin, social workers, and family who were gathered to witness Hannah and Hunter's first meeting.... they had all been waiting, too.

 

We weren't able to see Hunter in his new NICU until late that night but from what we heard, he was an angel for his first flight... and was in a full-blown tantrum over it when he met his new NICU nurse ;-) (We did know that he had strong lungs!)

 

 

We serve a big God who is capable of big things... He has saved this baby's life more times than I can name... He has used Hunter's still-short life to change lives... He has fulfilled every promised made to us in His Word; promises not to harm us, to give us hope, and a future (Jer. 29:11).... He has shown up over and over again to show us over and over again how faithful He is....

 

And Miracle #3 comes next :-)

 



 

 



Miracle #2; "Jesus Lives in His Heart..."

 

At almost 30 weeks gestation, Hunter was delivered by emergency C-Section. I'm not quite sure (yet) on the exact timing of events but here's the way we've come to understand it from his many nurses and specialists...

 

Hunter was diagnosed in utero with a rare and life-threatening heart condition.  Along with that, he had an erratic heartbeat. His crazy heartbeat was affecting his First Mama's heartbeat and she was put on a certain medication to control HER heartbeat. This medication sometimes causes a baby to develop another potentially fatal condition called Hydrops, in utero.

 

At almost 30 weeks gestation, Hunter had developed Hydrops.

 

In short, his body was filling with fluid... and the fluid was crushing his organs.

 

 

He had to come out.

 

 

We weren't there when he was delivered... but we've heard about it... many times. From the pediatrician who delivered him. From the nurses who were in the OR. From the charge nurse. From the janitor....

 

 

Yep. Even the janitor told me about the first time she laid eyes on my baby boy.


His First Mama has sent us pictures, too... pictures we held on to for months before we could find the strength to look at them.


They are brutal pictures. He was so tiny... and black and blue... and swollen... and his eyes....


those eyes.


They spoke volumes... they still speak volumes.


"I am strong. I'm going to fight this. And I'm going to win."


"Even when the way goes through Death Valley, I'm not afraid when you, Lord walk at my side."
Psalm 23:3 (The Message)


He has wisdom in his eyes.



The NICU team was in the OR and were ready should Baby Boy need them but they were not expecting to have a baby to help.... he just wasn't supposed to make it through delivery.


He did. His Apgars continued to rise, the delivery team shocked his heart...




(writing this story, remembering, is harder than I thought it would be....once in a while I need a minute to breath...)....




They shocked his heart.



(Every time I see his tiny chest, I cringe....Deep breath. )




They intubated him.



They did all they could to help him fight.



They knew that his chances of surviving were low... not only because of the Hydrops but because of his heart condition, his prematurity, kidney and liver damage due to the pressure of the fluid, and more they didn't know about yet.



One of the first things Hunter's doctor's wanted us to understand before we committed to him (like we hadn't already!) was that he would require open heart surgery sometime in the next few years... and probably another one before he was a teenager. His heart condition would limit his activities as he got older and would always be there.... it couldn't be 'fixed' and it would never go away. He had made it this far so the assumption was that he would make it further... we just didn't know how much further and it seems to be a doctor's job to give worst case scenarios... quite often :-/


We had researched this condition AND Fetal Hydrops  (I won't include a picture but you are welcome to Google Image Search if you'd like... and if you have a strong stomach) before we made the drive to meet Hunter... we were warned by our agency NOT to research them because of how scary they are.... and their prognosis, especially combined, is almost always death.


We researched anyway... we poured over our computers for hours.


The agency was right.


Scary doesn't even describe what we saw and learned.


But there was still 'something'... some reason why we knew it would be ok... that even if the worst should happen, we still needed to meet this baby boy and he still needed a family.


We know now what that reason was... God. He had told Hannah's heart... and it would be so.


It turns out that hearing about his conditions from his doctors was a lot less scary than reading about it online. Yes, open heart surgery is serious. Yes, limited activities for a boy would be tough. Yes, the future of our family would be uncertain...


but when hasn't it been?!


He was ours.


Hunter remained in the NICU where he was born for a full 6 weeks after we met him. Due to a series of events, we made the decision to have Hunter flown by medical jet to our new home, where we would be moving as soon as possible.... or as soon as Joey could pack up our other house ;-)


We weren't able to fly to the new NICU with Hunter and saying goodbye to him was so hard... but his medical transport team (6 of them) was so amazing; they loved on him, they fed him, they even sang to him on his way to the ambulance that would take them to their plane.

It was also on this day that Hannah got to meet her Baby Brother for the first time... more on that another time ;-)


Joey, Hannah, my Mom, Joey's Mom and I got in our 3 cars as soon as Hunter left for his new NICU and drove several hours to our new home. Joey and I weren't able to get to Hunter's new hospital until late that night and we were met right away by his new Neonatologist in the NICU. Hunter's records had been sent over and they were a mess... all his doctor could tell was that this baby was very complex and he was completely amazed that Hunter had come so far. We did our best to fill in the blanks of the past 8 weeks. The Neonatologist had copies of every one of Hunter's medical records, including his original ultra sounds of his heart, abdomen, and brain, blood work results, etc.

He also had copies of the heart and abdomen ultra sounds that were done that same morning, right before Hunter boarded his plane.


Our new hospital had more cutting-edge technology than the previous so it was decided that they would re-do all of the vital ultra sounds and scans in order to know how to proceed with him under their care.

The next morning we met our Mom's and grandparents at the NICU... Hunter's great-grandparents were anxious to meet him!

Only Joey or I and one other family member could go back into the NICU at a time and we decided my mom would come back with me first since she hadn't been able to hold Hunter at all before he boarded his plane. She asked if Joey and I wanted to go back together first and we both said no.... we had been there only hours before... surely nothing had changed....


It was Saturday morning...A new Neonatologist met me and my mom as we were approaching Hunter's bed... he was practically running... he was doing that awkward "I wanna run but I'm a doctor in the NICU and it would be ridiculous if I ran" walk). A tech was just finishing up Hunter's abdominal ultra sound as we all walked in.


The Neonatologist was holding ultra sound films and a stack of papers. He told me that they had done Hunter's heart ultra-sound late last night, right after Joey and I left.... he said that the results of the scans were so shocking that he called in one of their best Pediatric Cardiologists.

And he was so shocked that he called in one of his associate Pediatric Cardiologists to review the scans for a second opinion.

And they were all so shocked together that they called in their best Adult Cardiologist.



And Hunter's heart condition was gone.



It wasn't there.



It HAD BEEN there... no one argued with that. Previous scans verified it.


But it WAS NO LONGER there.


The heart condition that would require open heart surgery... the one that would limit his activities... the one that we researched and poured over so we could understand what his future might be... or how long he might live.


THAT heart condition.... was gone.


I remember silence ... it felt like forever silence. I couldn't talk. I'm not quite sure what I did ... but I remember my Mom hurrying out of the NICU, saying something about getting Joey.


Joey came in.... the doctor said it again.


"Hunter doesn't have this condition."


More silence; we didn't know what to say...


So he put the scans in front of the black-light and showed us Hunter's healthy heart... one with a few minor differences than your's or mine... differences that he could and would live with... live a long life with.


That's it.


What the doctor said next is what snapped me out of my shock....


"I came in early this morning and was caught up by Hunter's admitting doctor. There's no doubt that this baby's life itself is incredible. We know what was done to save his life when he was born but this, there's no medical explanation for this. He truly is a miracle." I asked him to explain it again and he said that sometimes doctors can't explain it away.


And we broke.


We had cried so many tears over this baby. We had been prepared a couple times for his death, we had envisioned a future that was much different than we had ever considered that it might be, and we had spent hours and hours on our knees begging God to keep him strong... to help him fight... to guide his doctors....

to perform a miracle in Hunter's life.

And like so many other times, when we've been on our knees, desperate to hear His voice...


He did. He heard our prayers and answered them mightily.


Hunter will always have a Cardiologist. Always. His name will always be associated with that heart condition... because he had it. We have regular routine visits, do regular 24 hour events recorder monitors, and regular ultra-sounds .. but there is absolutely no reason to believe that there will ever be surgery or cause to worry in his future.

I still hold my breath during every one of those appointments.

And I still cry every time his doctor tells me how happy she is with his progress... and what a miracle he is.

More than once over the past few months, Hannah has seen Joey and I cry or jump for joy or express any other number of emotions related to her little brother. I'm pretty picky about what appointments, if any she comes to with us (and there are many appointments each week). We do what we can to be honest with her and tell her in words she'll understand how God is working in Hunter's life... and in turn, in ours.

Hannah came to Hunter's last Cardio visit with me and it was one of the times when they put a 24 hour monitor on him. Hannah was 'admiring' him when we got home and asked me what all of the cords were for...

"Hunter's heart was sick for a long time and the monitor will tell the doctor if it's getting better."


Hannah replied...

"Hunter's heart is all better, Mommy because Jesus lives in his heart."

Faith like a child. Faith like Hannah's.

"That Christ will live in you as you open the door and invite him in. And I ask him that with both feet planted firmly on love,  you'll be able to take in with all Christians the extravagant dimensions of Christ's love. Reach out and experience the breadth! Test its length! Plumb the depths! Rise to the heights! Live full lives, full in the fullness of God.   God can do anything, you know - far more than you could ever imagine or guess or request in your wildest dreams! He does it not by pushing us around but by working within us, his Spirit deeply and gently within us."
Ephesians 3:17-20 (The Message)




Hunter will meet his big sister next... ;-)