Friday, March 30, 2012

International Faces of Chromosome 18

There are several videos/slideshows in the works to promote trisomy awareness right now.  This is a beautiful one showing children all over the world who have different challenges with their 18th chromosome.  Some, like Aaron, have three instead of two in each and every cell.  Others only have them in some of their cells.  Still others have a partial third, or are missing part of one.  But each is a cherished son or daughter and each has something to contribute to life.

Aaron is featured at about 11:00 or shortly there after.  Watch for him.  I'll post others that he's in as they are published.

Tuesday, March 27, 2012

Exciting Night

I went to bed last night, fully expecting (or hoping?) to sleep well.  My rest was shattered when the nurse opened the door and exclaimed, "The vent isn't working and Aaron isn't breathing!'  Um, yeah, not a good scene.

I got out to his room to find William with him as the nurse finished hooking him to an ambu bag to force air into him.  She was bagging really fast, and his sats were continuing to drop.  I really don't know where they were at this point, but it wasn't pretty.  I took the bag from her, and instructed her to get the extra vent from behind the chair.  I also realized then that the bag wasn't hooked up to the oxygen, so we quickly fixed that.

He started looking a little better with some oxygen (imagine that) and a much slower bag.  William took over bagging while I helped the nurse get the new ventilator set up with a circuit and we plugged him in.

At that point, he was looking much better, and I started asking questions.  We discovered that it was more than likely that part of the circuit had come apart, but it was a small part, so she hadn't realized it.  Small, but enough that the air wasn't getting through to him.  So we set up another circuit to the original vent, put a test lung on it (really, just a heavy duty balloon), and it all tested just fine.  So back onto his original vent he went, and after giving me a grin, he went right back to sleep.

I said, good night, and went back to bed, too, but somehow, sleep didn't come so easy for me.  All I could think about was, what if it happened when I wasn't here.  I wasn't scared during the experience, but afterwards, it was hard to shut down.

During the excitement, I didn't even feel the adrenaline.  It was just, okay, do this, then this, then this.  Okay, it's all working.  Do we need an ambulance?  No, I don't think so.  We've got this under control. But, just for the record, 24 may be a great number if it's your age, but it's downright ugly if it's your oxygen saturation.  Yeah, we're supposed to hang out in the high 90s.  I'm told that pulse/ox machines aren't real accurate below 40%, but even a 40% is really, really bad.

So, today I spent putting together training materials.  I went looking for a picture of a ventilator and circuit set up so I could circle the places it might come apart.  With all the images on the internet, I couldn't find one!  So I made my own.  It's now in a place of honor right next to the ventilator.  I also put together a notebook with regular cares and emergency cares.  I'll be going through all of it with every nurse, and then marking off who has done what.  I've got some great nurses, but I have a hard time remembering who has been taught which part.  They do cover this all in nursing school, but I covered calculus, and I can't remember a thing about it.  And not much of physics or chemistry either.

But if I teach them, and we go over things hands on, I'll know and they'll know that they can handle things.  And they'll know when they're in over their heads as well and need to call for back-up.

So that's our quiet day.  But at least we're prepared now, I think.  And smart people may want to invest in Clairol.  I know I gained quite a few more gray hairs over this...

Sunday, March 25, 2012

If Only I Could Have Known...

If I could go back two years and tell myself what it would really be like, I would say this: You will experience more Joy and Love than you thought possible.

Yes, it's been hard, but it is so worth it.  This week's post will be short(er) on words, and much longer on pictures.  Take just a small peak at what our life is like...

Telling stories with Mom.  I wish I had a translator for what he was saying, but it was so much fun anyway!

I got my new BAHA hearing aid!  My therapist said it was the fastest approval she's ever gotten. I love being able to hear, most of the time.  Sometimes the feedback gets a bit annoying, but overall, the world has gotten much more fun!

Hanging out with Michael




Last weekend, my parents, my sister, Liz, and her three kids came to visit.  While they were here, my other sister who lives close by also dropped by.  We had a house full, and it was so great!  I can't remember when I've laughed so hard.  
Katie meeting Aaron
Ryan, Katie, and Michael taking turns with Gramma's iPod.

Playing in the backyard, Saturday.

Hey guys, they're just tubes.  No biggie.

Three Cousins!

Liz and her kids


Gramma & Michael

Mary & Katie


Liz had two goals in coming up from Arizona.  The first was to meet Aaron.  The second was for her kids to see snow.  It's been two years since they've played in it.  We were NOT supposed to be getting snow, just rain.  Um, yeah.  The Saturday pictures?  Same back yard as in these ones.  But they had a great time, and I think it was all gone by Wednesday.  So, lots of fun for kids!

My big boy.  What a blessing....
 This is the day which the Lord hath made; we will rejoice and be glad in it.   
Psalms 118:24 

Wednesday, March 21, 2012

Relief Society Video: Daughters in His Kingdom

In January, I got a call from a sister in our stake.  (For those who are not Mormon, we refer to each other as "sister" and "brother" and a stake is a group of 5-6 wards.  The ward is the basic church unit similar to a parish.)  They were putting together an evening for women in March and wanted me to participate in a video.  The theme is "Daughters in His Kingdom: Real Sisters, Living Real Lives, Finding Real Answers".  

I was asked to come speak about Aaron and how I've grown and what I've learned on our journey.  Oh, and it should be about two minutes.  Yeah, that's right, two minutes.  I figure I could sum it up in 15 seconds, or go on for two hours, but two minutes?  That was a challenge.  So one Sunday when I was home with Aaron, I sat down to write.  I love how when I write the thoughts and feelings that are so tangled and jumbled straighten out and make sense, at least to me.  Below is what I wrote, along with some pictures they included in the video.  I hope you enjoy it. 


Two years ago, over Valentine’s Weekend, we found out that the little baby we were expecting, was not expected to live.  He had a “fatal disorder,” Trisomy 18.  My heart and soul felt like they were being ripped apart.  I could feel this baby, like my others, growing inside me, but also knowing that each kick could be the last.  And if he was born alive, chances were very good he would never come home.

But in spite of these statistics and emotions, deep down, I felt there might be a different plan.  I told my doctor, very early, that while his life would surely be short, I felt it would be measured more in weeks and months, rather than hours and days.  I believe in miracles, we’ve seen them from the start of his diagnosis, but deep down, I knew we couldn’t ask for the trisomy to be taken away.  This was something that he was supposed to deal with, and we were supposed to learn from. 

But it didn’t stop the pain.  I knew I had to learn as much as I could so I would be in a position to help him.  If he was to live, instead of quickly returning to heaven, I had to be able to work with the medical professionals to help him.  I have been blessed since childhood with an absolute thirst for knowledge about the human body.  So now, I set out to learn more.

But knowledge is nothing compared to the inspiration of the Holy Ghost.  I learned very early in Aaron’s life that if I was just concerned or worried, things were probably okay.  But if I became anxious or upset, the Lord was telling me that it was time to go.  Go get help.  On more than one occasion, these feelings led to Aaron being in the hospital before the crisis came. 

But I think the most valuable lesson I’ve learned is the Lord only expects us to do what we can with what we have.  The day after Thanksgiving 2010, our neighborhood was awakened very early as the Lifeflight helicopter landed outside our home.  Aaron was in severe respiratory distress, in other words, he was barely breathing.  He had not been doing well, but I didn’t recognize it.  He almost died because I didn’t realize that there even was a problem until it was almost too late.  The really hard part for me was to get to the point where I could accept that I didn’t have to know everything.  Even if he had died, this life is not the end.  And as long as I do what I can, my offering is acceptable to the Lord.  My Savior is there for me, and for Aaron.  And what I have to offer, by definition, is enough.  It is always enough, because He makes up the difference.

Sunday, March 18, 2012

Trisomy 18 Awareness Day

Today, March 18th, is Trisomy 18 Awareness Day.  Get it?  March is the 3rd month, TRIsomy.  In honor of it, I created a video from the last nine months.  There are already two from the first year of his life, so this picks up on his birthday.  Thanks for inspiring us, little man.  We love you.

Wednesday, March 14, 2012

21 Months, 581 days

Yesterday was Aaron's 21 month birthday.  He has been with us for 581 days, yeah, I counted.  That's 581 days more than we were told to expect.  And they've been some great times.  

He's been through a lot in his short life.  He's dealt with heart failure, collapsed airway, and an inability to coordinate that, oh so important, suck, swallow, breathe sequence.  He's had three brain MRIs, many EKGs, and countless x-rays, not to mention a single spinal tap.  

I lost count, long ago, of the IVs and the labs drawn.  He's endured 19 hospitalizations since his discharge from the NICU for a total of 107 days inpatient.  Although, given his demeanor up there, we sometimes wonder if there's someone "special" up there that he wants to go see.  He's had a few pneumonias including two that threatened to take him from us.

BUT he's also done a lot of fun things.  He's been to soccer and baseball games.  He's been to choir and dance performances.  He's been to family reunions.  He plays with his brothers and loves it when his sisters tickle him.  When he had his casts on his legs and we had to put his pulse/ox probe on his hands, he thought it was a great new toy.  He could chew on it, wave it around, and even pull it off!  How like a baby is that!  This little boy, mostly deaf, loves music and dancing.  He loves it when Andrew and Michael read stories to him.  He loves to have his daddy rock him and pat his back.  He LOVES to get out and go on walks and see people.  He has a grin that just doesn't quit.

Playing with his toys
in his stander.
And through all of this, he just keeps on teaching us.  See, it's not how easy your life is that makes it worthwhile.  It's how much you enjoy it.  And I challenge you to find anyone who gets more enjoyment out of their life than this little boy.  The few times he cries, it just breaks your heart.  And frankly, we don't have a tried-and-true way to comfort him.  Not because he is hard to comfort, but because he just doesn't cry very often.

He's not too fond of brand-new experiences.  His BAHA hearing aid, a bath, tummy time.  The first time it's hard to deal with.  But after that first experience, he buckles down, gets to work, and finds the JOY in them.  Tummy time is especially difficult, physically, for him.  His muscles are just so weak that he can't pull his head up.  He gets a real workout from it.  But even though it's hard, he keeps trying.  And after that initial time, he does it with a smile.  This kid just doesn't know how to give up.

Getting ready for the MRI.
Getting his abdominal
ultrasound while trying
to wake up from the MRI
Over the last couple weeks, we've had more testing and check-ups.  His endocrinologist has ordered some more tests for his thyroid.  Before we start treating for low thyroid, he wants to make sure that it's thyroid related and not something else.

His bladder test came back the same, just as we expected, so he'll continue using antibiotics to prevent infection.  His abdominal ultrasounds showed no masses (cancer) which is what was expected and hoped for.  I really don't even want to think about that.  And the best news, neurosurgery decided that he's just got a big head, kinda like some of his siblings.  The MRI was stable and showed no changes from the last two, so he's been discharged from their service.  Unless he starts showing signs of increasing brain pressure, we don't have to see them again.  They're great people, but YEA!

So Happy Birthday, Aaron.  You go through so much, but you teach us as you do.  Nothing comes easy for you, but you smile and keep on going.  We love you.

This is the day which the Lord hath made; we will rejoice and be glad in it.  Psalms 118:24

Sunday, March 4, 2012

Trisomy Siblings

 One of the things that doctors worry about with a medically needy child is the effect it will have on the family.  And no, I'm not going to say there is no effect.  It is hard sometimes, but what isn't?

When it was time to make the decision about traching Aaron, a social worker asked me if I'd considered the impact it would have on my family, on his siblings, how hard it would be for them and how it would impact their lives.

It has impacted them.  Some things have changed.  But take a look at just a few of the things that have been happening in their lives over the last year and a half or so, and tell me.  Do these kids look like their lives have been ruined by their brother?

They've started school, finished school....

Moved out and held jobs.

 They've been involved in team sports.

Andrew got baptized.

They've participated in choir and band and the arts...

Of course, scouting is still a big deal.

Dance continues to play a BIG part in their lives...

And they play, together.  Because that's what families do.

Many years ago, our three oldest sang a great song for a school talent show called, "What Does it Take to Make a Family."  Here's the gist of it:

What does it take to make a family,
One that won’t break when the bumps come along?
What does it take to make a family?
People who work and work and love and laugh,
People who sing a song.

What does it take to make a family
One that is there even when you are wrong?
What does it take to make a family?
People who all forgive and help,
People who sing a song.

What does it take to make a family,
One that will help you learn how to be strong?
What does it take to make a family?
People who all believe in you,
People who sing a song.

So we keep on singing.....