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.