Tuesday, February 28, 2012

Haircut!




Aaron had a rude awakening this morning.  I had a little time, and he had some pretty bad snarls, so as soon as he woke up, I grabbed him and the clippers.  Now he's sporting a fuzzy crew cut.  He didn't mind them much, but between the bath and the haircut, he decided he'd done enough and conked right out again.  Lucky kid...

Monday, February 27, 2012

An Interesting Dichotomy - Okay

I've had thoughts running around my head for the past couple weeks that I'm hoping to organize here.  I'm hoping that by putting them down, I might be able to make sense of them.

In my "past life", when I would see a pregnant woman (if it registered), my thought was, "How fun!  How exciting!"  If I knew her, it might be "Hm, boy or girl?  When?"  Now, I think I see all of them and my first thought is, "oh, I hope everything's okay."  What's that for?  That thought NEVER crossed my mind pre-Aaron.

Then there's the "okay" factor.  No, in most people's minds, Aaron is NOT "okay".  I addressed this almost a year ago when I ran into a soccer mom friend at the hospital and she asked if my baby was going to be okay.  He is never, in this life, going to be "okay."  But if you look at the broad scheme of things, this kid is more "okay" than I'll ever be.  And because of him, my family and I are becoming more and more "okay."

So here's where I find myself.  I hope and pray that a baby will be born with all the chromosomes paired up correctly, all the right size and all in the right place.  I pray that there won't be trauma associated that would cause them to be oxygen deprived. I pray the family won't know the heartache and pain of losing a child.

BUT, without Aaron's extra chromosome (we think it's an extra love chromosome) we wouldn't enjoy the special blessings he brings to our home.  We wouldn't have the joy and peace that comes with him.  So, in hoping and praying for others to be spared the pain, am I hoping to deny them blessings?  See the dichotomy?  Through pain and suffering, we grow and are blessed.  We become more like our Savior.  And isn't that the whole point of this life?

So, I guess where I'm going with this is, some people feel sorry for us, and for Aaron.  On the other hand, I feel so incredibly blessed to have a Heavenly Father who was willing to send him to us.  Yeah, some things with him are hard.  It has changed our lives here, quite significantly.  But growth never comes without stretching.  And he is stretching me into a much better person.  The love and the joy and the peace that he brings to our home is immeasurable.

On the Aaron front itself, here's what he's currently up to.

This past weekend was a big ballroom competition that our school cosponsors with another high school.  My nurse Friday evening was sick, so we just loaded Aaron up and took him with us.  It wasn't crowded in the concessions area where I was spending most of the evening, and even in the comp room, everyone was focused on the floor, and not the kid in the wheelchair.  So it was all good.  He had a great time, and this kid, this deaf kid, was moving to the music.  In the gym, I think it was too overwhelming.  All the people, colors, movement, etc.  But in the cafeteria, it was much less so.  And the music was really just background.  But Aaron loved it.  He was moving with the beat and smiling the whole time.  I meant to take a picture of him, but forgot until I was putting him back in bed at 11 p.m.  Oops.

On Wednesday, we add (yet another) specialist to his list.  His labs have come back hypothyroid.  Finally, a family issue and not a trisomy one.  There doesn't seem to be many thyroid issues in trisomy but my family has a large history of stubborn thyroids.  So endocrinology, here we come.

Then Friday, we have a marathon day at the hospital.  He'll have a brain MRI, two ultrasounds, and some bladder/kidney tests (VCUG).  We check in at 9:30 and see the doctor at 3:30 after all the testing is done.  Yeah, it'll be a long one.

But our little guy just keeps on smiling and going.  We've had all sorts of yuck here lately.  I even caught the cold in a big way.  But we've tried really hard to keep the germs away from Aaron and he's doing fantastic.  Happy, smiley, drooley, (teeth!) and loving life.  Just the way we like it.

Sunday, February 19, 2012

Fearful and Wonderful Hearing

Can you imagine what it would be like to live with your ears underwater?  Or with them constantly plugged?  And then suddenly be thrust into the world of sound?  Well, now you might begin to understand the "fearful" part of hearing.

On Friday, Michael and I took Aaron up to an audiology appointment.  The plan was to spend quite a while up there letting him use a BAHA hearing aid.  This is one that looks like a small box and sits snugly against the skull bones.  We would put it on, test in the sound booth and then walk around the hospital and see how he did.  Except, those of us "in charge" have never had the experience I described above.  Yeah, kinda scary.  Really scary.  And he kept scaring himself.  When he would tighten up and cry, he would set off his vent alarm, which scared him more, which caused more alarms.  See a problem here?
In the sound booth.  He's calmed
down, but he shut down, too.

We finally got him to calm down, but I don't think it was because he was really okay with things.  I think it got to be too much so he just shut down.  Kinda like a newborn in a noisy environment will just go to sleep.  He didn't sleep, but he shut down.  We tried to go into the sound booth to test things, but he just wasn't responding much at all.

Our wonderful audiologist asked for and GOT permission to let us borrow the BAHA for the weekend.  (Yea for three-day weekends!)  We have to return it Tuesday morning.  Well, the rest of Friday was also pretty sad.  He was just having a hard time adjusting to all the noise.  And we did try to keep things fairly quiet, and we took it off when he was sleeping and when the kids first got home from school.  But still, it was kind of rough.

Saturday, though, was much better.  He was back to his normal, calm self.  I even wondered if he was still  hearing because he was acting so much like he usually does.  It's hard to tell sometimes if he's reacting to sound or to movement when you walk in and call his name.  But last night, last night something so small but wonderful happened.



When I do his cares, take care of his trach and g-tube, I usually put the supplies in the bed above his head.    (That way I don't lose them.  Yeah, I've done that once or twice, okay, several times.)  I was cutting his medical tape with scissors right above his head.  I do it all the time.  But this time, that little whisper of scissors on tape and paper, it caught his attention.  He stopped what he was doing and started moving and trying to look for the sound.  He heard it.  My baby heard it.  And that is wonderful.


I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well.     Psalms 139:14

Monday, February 13, 2012

Happy 20 Months!

A dear friend created many trisomy awareness logos.  They are found on t-shirts, mugs, handbags and many other items.  She gave me permission to use a few of my favorites on bibs for Aaron.  I got them done today (thanks to another friend and her ink jet printer!).  I think they turned out to be a great birthday present.  Happy 20 months, little man.  And many, many more.

Breathe
Battle
Believe


Angels made with
47 pieces
Miracle in Progress
Living with Trisomy 18

Love Doesn't
Count Chromosomes


Trisomy 18 Ribbon:
I Live



Love the balloons Grandpa & Grandma brought!
Yummy Cake!



Happy Birthday!!

Saturday, February 11, 2012

February 11th

It's funny how certain dates stick out in your mind.  For me, February 11th is one of those.  See two years ago, February 11th was a Thursday.  Not just any Thursday, but the Thursday I had been waiting for for 16 weeks, the day I got to see my beautiful, perfect baby (girl?) floating around inside of me.  I'd just started feeling the kicks and pokes and couldn't wait to see inside.  I had been surfing the internet for weeks, trying to decide on how to decorate a new room.  I had feel so much sicker this time than with the boys, much more like when I was carrying Deborah and Mary.  Visions of lace and ribbons and bows danced through my mind, although even then, I knew it would be more than okay if it was, yes, another boy.  I'd kinda gotten used to them over the years.

 
It was pretty cold out, and William had some things to get done, so he planned to meet us at the doctor's office.  I was a little worried that he might be late, but sure I could show him the DVD and pictures later if he didn't make it.  I'm so glad he was there, so very glad.

We went back and she asked if we wanted to know the gender.  Of course, I mean, isn't that the real reason you do this?  So she looked around for a while, and found his "boy" parts.  She looked at all the other parts too, actually for a little while.  Then she pointed out that it looked like he had a cleft lip and palate.  I thought, okay, well, that's fixable.  And I guess I'm glad he's a boy, because he can always grow a mustache if the scar is visible, and somehow, it's more okay for a boy to have scars on his face than a girl.  Then she said the doctor wanted to talk with us.  What?  Well, okay.  But I was supposed to be seeing the midwives, not the doctor.

He came in, I can't even remember which doctor he was.  He started talking about how our little boy had some problems, and he was pretty somber.  I thought, okay, so he's going to have to have some surgeries. I mean, really, in the grand scheme of things, a cleft lip and palate aren't really that bad.  They're certainly fixable.

And then he continued.  My baby had clenched fists, and a certain kind of clenched fist, and they hadn't opened the whole time.  My baby's legs were crossed, and stayed that way.  He had choroid plexus cysts on his brain.  All by themselves, they didn't mean much, but with other anomalies, they did.  And his heart, his precious heart, the aorta and pulmonary arteries were parallel, not crossed as they should be.

I started crying.  I would think I was able to stop, and then I would start again.  My poor baby.  This wasn't even on my radar.  I was half-way through the pregnancy.  Way past the "danger time" of the first trimester.  I came home and started looking for information.  Each one, okay, that's okay.  Not good, but we can do this.  Even the arteries, Transposition of the Great Arteries (TGA), surgery was being done for that with good results.  Then I put everything into one search engine.  Trisomy 18.  Incompatible With Life.  Another punch to the gut.

We met with our perinatologist, a doctor who specializes in high-risk pregnancies the next week, February 16th, (yeah, another one of those dates).  When she finished her scan, she turned to me and said, "I'm very sorry.  I am almost certain your baby has something called Trisomy 18."  I started to cry and she asked if I knew what that meant.  I said, "Yes, it's incompatible with life."  That was all I could get out.  I knew, I knew in my soul when she said those words, I knew she was right.  Over the next few weeks and months, we had other tests, including an amniocentesis the end of April which gave us the definitive diagnosis, but I knew back in the office on February 16th.  And my soul ached within me.

***************
On Monday, we will celebrate Aaron's 20 month birthday.  We have witnessed so many miracles.  Among the first was Aaron's heart.  His arteries, clearly in the wrong position on his first ultrasound, were in the right place on the second and subsequent scans.  As I read back over journal entries from my pregnancy, I am in awe of my Heavenly Father's love for me.  Each time as I began to pour out my soul in anguish, He would gently lead me to a greater truth and peace.

Two years ago, I quickly learned that I couldn't read anyone's story if their baby didn't live at least four months.  When you don't even know if you'll be able to hold your baby while they're still alive, four months seems like such a long time.  So that was my threshold.  Aaron has lived five times that long, and is still going strong.  He has a mission to perform here on this earth and has been promised that he will not leave it undone.  I don't know what it is, but I hope it takes him a very long time to accomplish it.  He is such a blessing in our lives.

Monday, February 6, 2012

My Great American Grinner

video
Aaron dancing to "4 Hugs a Day"


I'm afraid this post may be a bit disjointed.  But if I wait until all the brain cells come together, you may never hear from me again.

Our Great American
Grinner!  :)
The last couple of weeks, another T18 mom has been having some fun.  She asked us to figure out what our child was going to be when they grew up.  We have future servicemen, models, sports stars, and so on.  Aaron is going to be a marriage and family therapist.  He's going to get everyone together in one room and just love them.  They'll feel so good that they'll be willing to work things out the best way.

This week, she asked for our kid's superhero name.  Aaron is the Great American Grinner!  His smile is so contagious!  You just can't help but grin along.  And really, why wouldn't you want to anyway?

Aaron is doing well.  He had a fairly quiet week, until Friday, that is.  And it was still quiet from a medical standpoint, just not an auditory one.  I think the flu has made its way through the family, and hopefully out the door, without stopping in Aaron's room.  The coughs and sneezes have started in other places in the house, but hopefully those won't find his doorway, either.  On Friday, we went for labs.  He did NOT like that.  Can't say that I blame him.  But usually, once the needle is out, it's all over.  Not this time. He cried.  And cried.  And cried some more.  And it was AUDIBLE!  I hate that he was sad, but when you can't hear your baby cry, to hear it again, somehow, that's good, too.  And it wasn't this wheezing of air escaping.  There were actually crying TONES in there.
He is just fascinated by his hand.
He'll spend several minutes turning it
and watching his fingers move.  So fun! 

But then, that made me think.  See, he's been a little (not much) wonky on his oxygen.  And the secretions we've been pulling out were more copious and thicker.  So I started checking his ventilator numbers.  Yep, his air leak was probably a bit too big, so I inflated the cuff in his trach a little more to force the air further into his lungs before it escaped.  Within an hour or two, I started pulling really thick, nasty stuff out of him.  That continued for about 24 hours and then subsided.  I don't think we were actually getting the air all the way down into his lungs.  And I think that may not bode real well for trying to come off the ventilator in the spring.  But we'll see.

It is winter, in spite of the fact that the snow seems to have missed the place with "the greatest snow on earth."  And with winter comes RSV.  Early, early this morning, our T18 family lost another little angel.  Just turned three years old, she grew her wings and went back home.  A couple more have also gone home, and some others are fighting hard.  I know it's not logical, but often, when I first hear of one of ours going home, my first reaction is, "but wait, let's try this first."  And "isn't there something more they can do?"  I know that doesn't make sense, but I want to go back, even an hour or two, and try something different.


My prayers go out to those families.  I hope they can feel the comfort.  I ache for them.