Saturday, June 30, 2012

Giving Joy

Right now, I’m sitting in the ED at Primary’s.  Thursday night, Aaron started coughing up blood.  Yeah, blood as in bright red, fresh, frank blood.  Not a lot, mind you, but enough to make this mama take notice.  It seemed to resolve over the night, but was replaced by some thick yellow junk.  Then this morning (Saturday) about 5 a.m. his nurse came to get me.  He was having it again.  So we made the decision that he needed to be checked out.

The good news is that he wasn’t in trouble.  He was using a little more oxygen, and his heart rate and breathing were a little higher than normal, but nothing we couldn’t support.  So I got up and finished the work files that absolutely had to be done and got ready to bring him up here.

Now, mid-day at Primary’s, we’re kinda looking at him like, “and why is it that we came?”  I mean, you’ve never seen someone happier and smiley-er than he is right now.  And I don’t know what it was about the x-ray machine, but something sure was funny!  He was not just smiling and giggling.  He was outright laughing, so hard that he was setting off his alarms.  The two techs and I kept chuckling at him, because it was just impossible to keep a straight face.  I wish I’d had my camera in my hand to get a picture. 

When we came back to the room, the lab tech came in.  She’s probably most kids’ least favorite person.  She’s the pokey person.  IV’s, finger sticks, owies.  But when she poked his finger, he just grinned at her.  When she’d pause to wipe his hand and get a better hold on it, he flirted more. 

The attending said it has been a rough week in the ED as far as patient morale and satisfaction goes.  But Aaron seems to be helping everyone around just smile some more.  He’s not fully himself.  He’s still using a bit more oxygen than he’s supposed to,(but he is still within our “at home” limitations”).  But so far, his x-ray looks good and his demeanor is great.  And it may be telling that the smiles and cheerfulness started in earnest as we walked back into the ED where all these individuals who see hurt and sick and scared children work. 

So maybe, today’s task is to help Aaron give back just a little bit to some of those who have given him so much.  I hope he makes their day a little brighter.

I am filled with acomfort, I am exceeding bjoyful in all our ctribulation.

Thursday, June 28, 2012

Update on Aaron

Quick update on Aaron.  At 2 yrs old (full T18) he is 31.8 inches, 26#9oz (12 kg) and doing great!  His doctor  is putting him on a diet because he's gaining weight too fast (take that failure to thrive)!  He was getting 750 kcal/day and he's going down to 660 kcal/day.  The concern is that he's about 30% for (normal kids) his age in weight, but only 2% for height.  We don't want the extra weight to tax his heart. 

He's also getting new trachs, a flex-end, because he's trying to roll over and his stoma is tearing.  This will make it so that his vent circuit doesn't bull has hard on him and he'll have more space to move his neck.  His RT has already ordered them.  She is amazed because the reason he wasn't originally a candidate for them is that he wasn't supposed to live long enough to roll over! 

Speaking of rolling over, he can go all the way to his tummy, if his hand is in his mouth, that is.  Otherwise, his arm gets in the way and he only gets halfway there. 

He is ALMOST sitting on his own. He can sit fairly well for several minutes as long as he gets a little support to his lower back. He has also started bearing weight on his legs, for a few seconds, when he's held upright. I know for most kids, this isn't a big deal at all. It starts within the first few days of life. But for Aaron and kids like him, it is huge.

This last week and the next few will see us traveling to several doctor's appointments, but they're all the follow-up type.  Last week we had labs (in preparation for next weeks visit), a 2 year old check-up (with a shot, boo), and a visit with his plastic surgeon. 

After his labs, we went upstairs to see the doctor that helped so much before he was born.  He was still crying, pretty hard (it took 2 pokes and 15 minutes to get 2 ml of blood).  She was a bit concerned that she shouldn't hold him because he was already upset.  But when she picked him up, he snuggled right into her and just snuffled a little.  Dr. F was thrilled to see him and to see how he is trying to sit on his own.  When she put him back in the stroller, he started crying again.  I think he knows he has a friend and an advocate in her.

Next week we see his orthopedist at Shriners for a follow-up on his feet and his endocrinologist for his thyroid.  After that it's cardiology and audiology.  So we're making the rounds, but they all appear to be good things.

Way to go, my chunky monkey!   (And I wish it was as easy to put me on a diet as it is for you!)

Monday, June 18, 2012 article: For the Boy Who was Never Supposed to Live, A Birthday Bash

Below is the article that did on Aaron.  We love the way it is so positive.
We really want to help people understand that he is such a blessing in our lives.
Yes, often it is hard.  But maybe this might shed a little perspective on it.  

The last time I was at the hospital, I ran into one of the Emergency Department
attendings while I was out during shift change.  We were talking and she asked
about Aaron.  She mentioned that it must be "so hard."  I agreed with her but
asked if medical school hadn't been hard as well.  (For those not as familiar
with a hospital set-up, an attending is not only a doctor, they're also teachers for
medical students and residents at the medical school, so she is WELL aware,
daily, of the challenges of medical school.)  

She agreed that it was hard, but very worth it.  I told her we felt the same way
about caring for Aaron.  While it is hard, it is so incredibly worth every minute.

And by the way, given that we have a bunch of crazy Harry Potter fans in
our home, we felt the title of the article was very appropriate.  Besides, it was his
mother's love that saved Harry Potter, and it is love that keeps Aaron going, too.
Thanks, Stephanie Grimes.

By Stephanie Grimes
June 17th, 2012 @ 4:33pm

SALT LAKE CITY — Aaron Peterson was never supposed to make it this far.
He is "not compatible with life," according to some doctors. Born with Trisomy 18, a genetic disorder that comes with a host of life-threatening medical conditions, Aaron has been defying the odds for two years.
Only half of children born with the disorder survive beyond their first week. Aaron survived his first week, and his second, and 102 more, making it to his second birthday and hoping to see many more.
"His first year, we were in and out of the hospital more times than I can count," said Rebekah Peterson, his mother. "We never went three weeks between discharge and another visit."
Some doctors wonder whether it is worth it to fight the battles associated with Trisomy 18, but for Rebekah, it was never a question.
"There are dicey times and scary times and times when you're going, ‘Really? Really, one more thing?'" she said. "But the majority of it is just good. I never thought I could raise a special needs child; I thought it was beyond me. But you just do, and you finally realize there is more joy and love than you have ever thought possible."
And the joy has only compounded as Aaron has continued to defy the odds, making it to his second birthday, while only 10 percent of children with his disorder make it to their first. And he seems to be thriving: the Peterson family has only made two visits to the hospital since last fall.

Enlarge image

To celebrate Aaron's success, Rebekah threw him a birthday party on Wednesday. Last year, his birthday party drew hundreds. This year, too, saw a crowd.

"We had people who came from across the street, and from a few states away," she said. "Lots and lots of friends, representing just a fraction of the prayers that have gone up to heaven in his behalf over the past two-plus years."
Balloons, too, were released to the heavens Wednesday in Aaron's honor.
"Where do balloons go, Mommy, when you set them free?" read a poem in the Petersons' home. "I hope they go to heaven … as a gift from me."
The balloons represented two long, prayerful years. They were challenging years, to be sure, but also incredibly rewarding, according to Rebekah.
"It's been a great journey," she said. "I wouldn't trade it. I didn't always say that before he was born."
It took a lot of research — in medical journals, not on WebMD, Peterson noted — and a shift in attitude to accept what was happening.
"You go in for that 20-week ultrasound," Peterson said. "The real reason you go is to find out whether you're going to paint your nursury pink or blue. And you're told instead your baby probably isn't going to live until birth. It's absolutely devastating initially."
A network of supporters gave Peterson somewhere to lean during those times she could not go on by herself, but hers has been one of the happier stories.

I think every parent's biggest fear is that their child will be forgotten.
–Rebekah Peterson

"I have friends whose kids have died," she said. "Moms who have walked that road with me, held my hand. Even though you're told it's going to happen from the beginning, you don't expect it. It's still something that happens to other people, not to you or your friend. And then it does."

"Children aren't supposed to die; parents aren't supposed to bury their children. That's not the way it's supposed to work."
She wears a butterfly pin in remembrance of those lost children, so they will not be forgotten, as she knows with a surety that her own son never will be.
"I think every parent's biggest fear is that their child will be forgotten," she said. "It's my way of saying, ‘I won't forget your child. I know he lived. I know she was important.'"

Stephanie Grimes, Reporter 
Stephanie Grimes is a feature writer and reporter for

Sunday, June 17, 2012

Happy Father's Day

Our third Father's Day with our little bug, and each one has been so different.  He has grown so much, and so have we.

The little preemie outfit was too big for him when he came home from the hospital two years ago.  We had to roll up the sleeves, and his feet didn't quite reach the bottom of the sleeper.  He was SO TINY. As I look back at pictures, he doesn't look that small to me, until I notice the GIANT hand holding him.  But I forget how frail he really was.

Father's Day 2010

Father's Day 2010
About 4 lbs, 2 oz
It was on Father's Day 2010 that I had my biggest meltdown.  Everyone else was at church when the doctor called to give me the update after rounds.  We had been trying for almost a week to get him off the CPAP machine and onto just oxygen so he could come home.  It wasn't working, at all.  I asked Dr. C. if he would ever be able to make that transition, and she gently said, "I don't know."  I could hear it in her voice, "This might be it."  I couldn't believe it and it broke my heart.  We did finally find a mid-step and make the transition from CPAP to high-flow oxygen, and down to the nasal canula that let us bring him home.

But it reality, the NICU wasn't sending him home to live.  They were trying to get him stable enough that they could send him home to make some memories here before he died.  That was the expectation. And I can't fault them for that.  I've seen too many times where hospitals tried and tried to get these little ones to the point where they could go home to do well, and then their little bodies just give out and they never make it home.  So I'm grateful, so grateful for all their help.

Playing with Daddy

Father's Day 2011

Fast forward one year.  We went through MANY hospitalizations, emergency ones.  He got his g-tube and trach.  We didn't do anything that wasn't absolutely necessary to save his life.  It was a time when I actually slept better in that unique environment called the PICU than in my own bed.  Yeah, it was easier to sleep with lights on, people going in and out, and in a strange place than the quiet, comfortable dark of my own home.  Because there, I had a whole team of professionals looking out for Aaron and I could relax.  Not so at home.  

Big Smiles!
But on Father's Day 2011, we found ourselves preparing to do more "quality of life" measures and less "life saving" measures.  Aaron was doing well, very well.  He was scheduled for his cleft lip surgery and his sedated ABR to finally check his hearing.  He was also on the board for casts for his feet which turned up and out due to a very tight Achilles tendon which pulled a bone vertical instead of it lying horizontal like it's supposed to.  He wore a sleeper that had the Very Hungry Caterpillar on it and the words, "but he was still hungry."  And he was hungry.  Hungry for life and for new experiences.  He loved going out for walks and meeting new people.  He was growing and developing and loving life.  He was putting on more weight and gathering reserves to get him through the rough times.  And we weren't (too) worried about his upcoming surgeries.  

Father's Day 2012 

Today, our third Father's Day with Aaron, is going to be a wonderful day.  He now wears the biggest sleeper in the first picture.  Yes, we're still hyper-vigilant.  He's still got the ability to turn plans upside down.  But he's doing SO WELL!  We're finally back down to where he should be, and where he was, on his oxygen before his last illness in April.

Even so, yesterday I got a phone call from William.  He was helping run a Cub Scout activity at a local church.  The Lone Peak Fire Department went screaming up the road into Alpine and he called just to make sure they weren't headed here.  At the time, Aaron was sleeping peacefully.  I hope they were able to help where they were headed, but oh so grateful I have no knowledge of what they were needed for.

Right now, it looks like our biggest challenge with him today will be to see if we can get "awake" pictures.  Yeah, he played until about 4:30 this morning, after being awake almost all day yesterday.  I like days like this, where he acts like a normal baby (or teenager - awake all night, sleep all day??) and just sleeps and eats and plays.  He's getting stronger every day.  He's actually the same size his siblings were at this age.  The size where we're trying to decide if he's really outgrown that outfit, or if the next size might be a touch too big still.

He and William still share that very special bond.  I find it amazing that often over the past few years, when he's been looking really bad and I call the ambulance, by the time they get here, he's doing okay.  Not great, mind you, but okay.  And it's because Daddy's holding him.  There's a special connection there that let's his body relax and keeps him going until help can arrive.  It often lasts us all the way to the hospital (but then all bets are off).  In fact, the two times that he's been really dicey were the two times Daddy was out of town and wasn't around to help.

I have a feeling that this will be another wonderful Father's Day.  We are so grateful to have Aaron here with us.  One mom posted on his birthday that:
Aaron, you're such a happy boy, you bring so many people such happiness and joy.When I see your beautiful face smiling on my screen, it makes me a little nicer, a little less mean. You make the world a nicer place for people to live, you're God's little miracle which he was so kind to give."
When you can influence the world in that way, even if it's just a small corner of it, life has meaning.

 The aSpirit of God hath made me, and the bbreath of the Almighty hath given me life.

Thursday, June 14, 2012

Birthday Party!

This is short on words but long on pictures.  Also, long on love and hope and happiness.  Three things no one can live without.

We had people who came from across the street, and from a few states away.  My sister and parents drove up from Arizona, and a former nurse drove in from Portland.  There was T18 mommy who came from northern Utah and other special needs moms from around here.  Lots and lots of friends, representing just a fraction of the prayers that have gone up to heaven in his behalf over the past  two-plus years.  We are grateful for all of them.

Getting cleaned up for my party.

Not sure about this water thing, but as long as I
can chew on my hands, it's okay.

Balloons for angel babies and others fighting to stay alive.

Party Time!

Balloon Release

Cake Time!

Happy Birthday, Little Man
And many, many more...

And thou shalt arejoice in every good thing which the Lord thy God hath given unto thee, and unto thine house, thou, and the Levite, and the bstranger that is among you.