Monday, July 2, 2012
We're Home!
Sunday, July 1, 2012
A Time of Reflection
Sitting in a quiet hospital room gives
you lots of time for pondering. I think
it’s in the nature of everyone (or at least moms) to notice children who are
similar to your own. I know I do. The sad reality is that there are not many
living children like Aaron. At least not
when you consider all the children who are alive. But at the same time, there are many who are
at least born alive. Aaron recently
turned two.
 |
| Addie |
Over the past couple days, and within the next week, three other families will recognize their two-year-old girls’ birthdays. But of necessity, they’re celebrations will be a bit different than ours. See, all three of these girls have finished their mortal lives.
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| Emalee |
 |
| Lilly |
And there are so many more. There were over 100 balloons released on
Aaron’s birthday. Many, the vast
majority, had names written on them of angel babies to whom they were
dedicated. Others went without names,
but I know God knows them. I am so
grateful for all those who took time out of their lives to come celebrate with us. I am also grateful for knowing my sweet
friends and the chance to remember their babies and pray for them.
Each life that touches ours for good
Reflects thine
own great mercy, Lord;
Thou sendest blessings
from above
Thru words and deeds
of those who love.
What greater
gift dost thou bestow,
What greater
goodness can we know
Than Christlike
friends, whose gentle ways
Strengthen our
faith, enrich our days.
When such a
friend from us departs,
We hold forever
in our hearts
A sweet and
hallowed memory,
Bringing us
nearer, Lord, to thee.
For worthy
friends whose lives proclaim
Devotion to the
Savior’s name,
Who bless our
days with peace and love,
We praise thy
goodness, Lord, above.
If/Then
Apparently, the three amigos in his
trach have decided they’re not going to play nice. That or someone else has moved in, too. He’s growing out at least 2 bugs, probably
three, and in a larger amount than he should.
So right now he’s on IV antibiotics, but he’s also looking REALLY
good. He’s even down on only 1 liter of
oxygen. However, through the night, he
was on a lot more. The doctor thinks
that he’s still bleeding down into his lungs which is what is causing the
higher oxygen need. Kinda hard to
exchange oxygen when there’s blood in the way.
You know, a liquid and all…
I went to church this morning. It’s the first Sunday, so it was a Fast and Testimony meeting. What a spiritual
feast. I am so grateful for the chance
to take the sacrament and renew my baptismal covenants. I’m so grateful for the opportunity to hear
and share the testimonies of so many other parents who are also walking a
painful and difficult road. There, I saw
another family whose husband and father has been part of Aaron’s life
professionally. But today, he was just a
dad, there with his wife and little girl.
This is their first experience here as patients. It’s a completely different ballgame, but one
I know they’ll figure out how to play well.
I know my Savior lives and He is what
makes it possible for us to make it through.
I am grateful for this journey.
It has taught me so much. It has
brought me so many new friends, both here who are physically involved in our
lives, usually helping Aaron, and those I’ve come to know and love through the miracle
of the internet. But mostly, I am
grateful for it because it has taught me so much more about myself and my
Savior. There is such a huge gap between
my abilities and what needs to be. But
that’s okay. Because Jesus makes up the difference. As long as He is by my side, it will be
okay. Because in the end, it will be
okay. And if it’s not okay, it’s not the
end.
The Lord hath been mindful of us:
he will bless us;
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
KLS.com article: For the Boy Who was Never Supposed to Live, A Birthday Bash
Below is the article that KSL.com 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.
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.)
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.
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.
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.
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, ksl.com Reporter
Stephanie Grimes is a feature writer and reporter for ksl.com.
Sunday, June 17, 2012
Happy Father's Day
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 |
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! |
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.
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