Monday, May 28, 2012

A Busy Week and Looking Forward to a BIRTHDAY!!

First things first, and most important:  Aaron is almost two years old!!  Yea for him!  He's come so far since that cold winter day when we were told he might not even make it to birth.  If he's touched your life, even if you're not sure we know you "that well," please come celebrate with us.  We'd love to see you and share this day.  It will be on his birthday (of course), Wednesday, June 13th from 5:30 to 8:00 p.m.  at our home at 530 Silver Lane, Alpine UT. 

We'll have a balloon release at 7:00 p.m. and would appreciate it if you could bring some balloons to let go.  So many angel friends have returned to heaven since he was born.  We'd love to share the party with them by sending some balloons to play with.

We've had a crazy week around here, and the next few days don't appear to be any different.  We've had seminary graduation and kindergarten graduation.  Tomorrow is high school graduation and Wednesday is 6th grade graduation.  Today is Andrew's 9th birthday and I just finished up a first aid merit badge class for a few scouts.  And I know there's other events that I'm not thinking of right now.  Yeah, it's crazy.

Aaron upsized his trach last week to a pediatric length from a neonatal one.  He started decannulating (having his trach come out of him) on a fairly regular basis.  So we've increased the length to give us a little more wiggle room.  It's just not a good thing for that to not be tight.  That whole secure airway thing?  Yeah, gone without the trach.  In fact, almost the opposite.  It's essentially no airway the way he's put together.  So a larger trach was a really good idea.  He didn't think so for the first couple hours.  It is longer so it's a little more irritating.  But he seems to have gotten the hang of it now.

Years ago, and several kids ago, I bought a really cute elephant for one of our babies.  I can't even remember which one.  (Is that a bad thing to admit?)  Anyway, I thought it was adorable.  My baby, and the subsequent ones?  Not so much.  Notice how it still looks brand new?  They were just too busy being mobile and exploring everything to do much with this big blue toy.

But Aaron, he's not mobile.  And it's just about the same size as he is.  I sat him up in his bed the other day and put it right in front of him.  He looked at it for the longest time, studying first one part and then the other.  I think he was trying to figure out if it was going to get him.  The he finally, after several minutes, reached out his right hand, ever so slowly, and spun the ball on the nose.  Then he smiled.  Yeah, I think the elephant has finally found a friend.

Sunday, May 20, 2012

My Savior, My Friend

Sometimes, often, I am a slow learner.  I am so grateful for the repetition that my Heavenly Father provides to gently teach me. While it's true that knowledge comes line upon line, I think sometimes it is the same line upon the same line upon the same line once again.  Because I forget.  And I'm human.  And I'm not anywhere close to perfect.

Tonight William, David and I attended Seminary Graduation.  For people not familiar with the LDS (Mormon) faith, our high school kids attend a religion class through their high school years:  Seminary.  At the end of high school they have a graduation, much like high school graduation, including speakers and musical numbers and diplomas.  It's a good thing, and like the good mother I try to be, I want to support my kids.  So it's an important night to be there for.  

What I wasn't counting on was the reminder I needed about where my strength needs to come from.  No, this doesn't mean that sometimes things aren't hard.  And it doesn't take away the emotional challenges that I often face.  What it did do was recall to my memory truths that I sometimes forget.

My reminders began with a hymn, one of my favorites:  "I Believe in Christ."  The fourth verse is especially poignant to me.  About a year ago in church we were singing it and I was watching Aaron.  As we reached the fourth verse, it was as if his soul spoke to mine and he told me, "Yeah, Mom.  This is what it's all about.  Someday all my pain and trials will be over and I'll be whole.  I run and laugh and jump in your arms.  It will be so much fun.  But for now, it's okay.  I'm good.  It's all so worth it.  Jesus loves me and He loves you, and it's going to be okay.  Because this life, that's not all there is.  There is so much more for us.  And it is better than you can imagine."  As the young girl tonight sang, I couldn't hold back the tears, but they were happy tears.  

I believe in Christ; he stands supreme!
From him I'll gain my fondest dream;
And while I strive through grief and pain,
His voice is heard: "Ye shall obtain."
I believe in Christ; so come what may,
With him I'll stand in that great day
When on this earth he comes again
To rule among the sons of men.

There is no way she could have known that I needed to hear those words, in her clear, sweet voice.  Yes, there is grief and pain, immense amounts of it.  But with His help, I can make it through.

If that was not enough, the next speaker quoted extensively from a woman I have always found inspiring.  Chieko Okazaki does not sugarcoat or mince words, but she tells it like it is in the real world, warts and all.  But at the same time, she uplifts.  The following is from her book, Lighten Up! (pg 174-175)
We know that on some level Jesus experienced the totality of mortal existence in Gethsemane.  It's our faith that he experienced everything -- absolutely everything.  Sometimes we don't think through the implications of that belief.  We talk in great generalities about the sins of all humankind, about the suffering of the entire human family.  But we don't experience pain in generalities.  We experience it individually.  That means Jesus knows what it felt like when your mother died of cancer -- how it was for your mother, how it still is for you.  He knows what it felt like to lose the student-body election.  He knows the moment when the brakes locked, and the car started to skid.  He experienced the slave ship sailing from Ghana toward Virginia.  He experienced the gas chambers at Dachau.  He experienced napalm in Vietnam.  He knows about drug addiction and alcoholism. 
There is nothing you have experienced as a woman that he does not also know and recognize.  On a profound level, he understands about pregnancy and giving birth.  He knows about PMS and cramps and menopause.  He understands about rape and infertility and abortion.
His last recorded words to his disciples were, "And, lo, I am with you alway, even unto the end of the world." (Matthew 28:20)  What does that mean?  It means he understands your mother-pain when your five-year-old leaves for kindergarten, when a bully picks on your fifth-grader, when your daughter calls to say that the new baby has Down's Syndrome [or the doctor calls to say your amnio was positive for Trisomy 18] . . .  He knows all that.  He's been there. He's been lower than all that.
And just like that, it was all I could do to keep from sobbing.  Because it's true, and I know it, and I have known it.  But for a little bit, I think I might have forgotten.  He's always been there for me, when I was willing to reach out for Him.  His arms have always been open to me, lifting me, holding me, carrying me.  And I know he always will. 

So tonight, I will say a special thank-you to my Heavenly Father for allowing me to hear these two sweet girls.  For using them to speak to me, to remind me of His love for me.  

It's Not PTSD, But What Is it?

Got him out!

Right into the glove!
Fun and games continue at our home.  Actually, fun and games is a good way to describe it.  Aaron went to two of the four baseball games this week and we also finished up the soccer season.

He also got a "long sitter" chair that he's really enjoying.  He spends a good portion of each night (yeah, he's still pretty mixed up days and nights) playing in it.

Rocking out in his long sitter.
On Friday night, Mary and Jonathan were playing the piano as I was rocking Aaron.  It was so great to be able to sing fun songs to him.  He really got into them, waving his hand around and smiling.  It took  me quite a while to be able to sing to Aaron.  Others have right from the beginning and it bothered me that I couldn't.  Every time I would start, I would cry.  Music is so imbued with emotion that I couldn't separate the two.  Friday was a fun evening.  We sang songs from "Rigaletto" (the movie, not the opera), "Behind the Waterfall" and "Sound of Music."  We sang "Grandfather's Clock" and "All the Pretty Little Horses". And others that I can't even remember, but I'll always remember those feelings.  A good memory.

However, we've also had some intense moments.  He decannulated this week for the second time in just a few days.  This time I had a really hard time getting the trach back in.  He was tight enough (like when you clench a muscle) that the trach just kept bending back on itself.  Last time I was able to just shove it back in.  This time I had to pull the air out of the cuff (like a balloon on the end of the trach).  Still wouldn't go in.  So I grabbed the obturator, a skinny, stiff plastic piece that makes the trach inflexible, and used that to help it go in.  As you can imagine, he wasn't happy at all.  We cranked up his oxygen and Daddy rocked him for a while and he settled back down.  But I wondered for a minute if I was going to have to get his back-up trach.  While it was handled quite calmly, it really wasn't much fun for anyone.

He's also being kinda squirrelly again (or still?).  He's still not real stable on his oxygen, up and down quite a bit.  And his secretions, those lovely things we pull out of his lungs, are tinged with color.  That suggests that there might be something brewing.  Yesterday I was all set to go to Michael's last soccer game.  Then, 30 minutes before game time, Aaron dropped his sats, down into the 70's.  And I couldn't convince him to come back up.  His lungs weren't sounding good and we weren't getting anything out with suction, so it was time for a breathing treatment again.  It worked, it worked really well.  BUT, this is what happened mid-April when we went rushing back up to Primarys.  I had given him an albuterol treatment, he did well for about 45 minutes, and then went south again.  Fortunately, this time he behaved himself.  Maybe it had something to do with the talk Daddy had with him about needing to be here at home.

So here's where my question comes in.  I've had some people suggest it's Post Traumatic Stress Disorder, but when I look at the signs and symptoms, I don't think it really fits.  I don't have flashbacks or nightmares. I don't avoid certain activities due to fear, but rather due to advice regarding his safety.  There is the hyper-arousal component.  So maybe that's where it comes in.  When we come home from the hospital, especially if he's still struggling, it can take me up to two weeks to be able to sleep much at all.  I hear every alarm, even the short bursts that mean he's just stretched.  Last week I was at Target and a couple paramedics were there, too.  Their pagers went off.  Those tones are very similar to the code alarm in the main part of the hospital.  Now, I don't respond to codes.  Not anywhere in my "job description".  BUT, my heart rate increased and I immediately started looking around for Aaron.  HE WASN'T EVEN WITH ME!

I'm always planning for the what-if, because it often turns out to be the does-happen.  Over the winter, without many admits, my hospital suitcase started to get unpacked.  But since April, it's packed again.  If not fully, then with the things that are not actually in it are right where they can be grabbed.  I keep tamales in the freezer to grab when the ambulance is on the way.  (One of the few foods that actually tastes good warmed in a microwave, but I probably will never eat again anywhere else.  Too many memories.)

Yesterday, when Mary headed out to go to that soccer game with Michael, I was fairly certain that we'd still be here when she got home.  Certain enough that I didn't take Aaron's car seat out of the van.  But Michael's games are played on the field behind the fire station.  And I told her that if the ambulance pulled out and her cell phone rang, that she'd better tell someone to bring Michael home and come quickly.  Turns out we didn't need it.  But when Deborah left for work last night, we did pull it out.  Just in case.

So if it's not PTSD, what is it?  If he sleeps too much, secretions change, alarms much, I worry.  I have a very hard time thinking or focusing on anything else besides him and his care.  I don't sleep well and I'm constantly monitoring him to make sure he's okay.  Meantime, he's playing, working on rolling over, smiling and growing.  Hyper-vigilance helps to keep him doing those things.  So maybe it's just being a mommy, and doing what you have to do to keep your child happy and alive.  Because in spite of that "incompatible with life" label, he is happy and he is alive, oh, so alive.

And by the way, we're celebrating in just over two weeks.  So save the 13th of June for a party!  Two Years Old!!

Sunday, May 13, 2012

23 Months Today!

Birthday Boy!
Aaron is 23 months old today!  How's that for an awesome Mother's Day present?  Two years ago today I stopped going to all of my Sunday meetings because it was too hard to sit for three hours.  I was nearly the size of someone at term with twins.  My OB's comment, not mine.  And it was just hard to be out in public were people were asking when I was due, if I was excited, and even two who asked if I was pregnant.  (Yes, I had been eating cookies, no, not THAT many.) So it was a hard time, in so many ways.
May 2011

Last year this time, we were fighting off a bug at home.  The cool part was that was the first time he managed to not have to go into the hospital at all for this particular germ.  We had caught it early enough and he was strong enough that antibiotics at home did the trick.

Cuddling with his monkey.  This has become a real favorite!

 This week, Aaron has hit some new milestones.  You know, when you have a "normal" child, these things just kind of "happen".  When you have to work at them, it's a huge deal.

Trying to roll over.
This week, for the first time, Aaron lifted his head up off the blanket during tummy time.  It was only about an inch, and only for a few seconds, but he did it!  Then in therapy, he did it a few more times!!  This is a really big deal.

Along with lifting his head up, he's pulling himself back upright when his head drifts in his stander or when sitting on a lap.  He's engaging those core muscles in his trunk which will, in turn, help to strengthen his lungs and his endurance.

He's also trying to roll over.  He tosses back and forth and back and forth, but often has a hard time coordinating his hips, legs, and arms.  It looks like he's doing the twist in his bed.  He's my silly dancing boy.  But sometimes, he manages to get his right leg up and over and turn most of the way onto his tummy.  Then he giggles at himself.  He's so happy to be doing this. (The trach and circuit make it hard for him to make it all the way onto his tummy still.)

Yesterday, we also went out for a walk.  The weather was gorgeous and he hasn't been out much.  I think he really liked it.  I know I did.

Out for our walk.
He's still not back to his baseline oxygen usage.  Again today in church, I had to go out to the car and change out his oxygen tank.  And earlier this week, he had a big bump early one morning right as the nurse was getting ready to leave.  She had wiped his runny nose and I adjusted the ventilator circuit because it was pulling on his trach.  Our little prince decided he wasn't real happy with that one, and so he desatted.  Big time.  54% big time.  And sat there, not wanting to move.  And he was MAD!  And this smart mama, she had put the regular albuterol inhaler in a "safe" place.  Yeah, one of those kind of safe places, the kind where you can't find it.  In my defense, we had brought home a smaller one from the hospital that was sitting on his shelf.  Only problem was that when I primed it, it read 000 sprays left, oops.  Fortunately, his older brother has the exact same inhaler and knew exactly where his was.  So albuterol was given, his lungs opened up and were willing to receive oxygen again.  And his nurse was here for an extra half-hour helping me get him back to where he belonged.  I'm grateful for that.  It was easier with an extra pair of hands.  One time last year, he was struggling and his nurse simply said, "well, good luck," and walked out.  Yeah, she's not with us anymore.

So we're making progress towards where we need to be.  And we're making progress towards his 2nd birthday!  I've already had some people ask if we're going to celebrate again, and the answer is a definite YES!  So if you're reading this, if Aaron has touched your life, you're invited on his birthday, one month from today.  It really doesn't matter if you don't think you know us well enough.  If you want to come, you're welcome to celebrate with us.  Of course there will be more details later.  Happy 23 months, little man.  You have blessed our lives so much.

Just to be is a blessing. Just to live is holy.
Rabbi Abraham Heschel 

Happy Mother's Day 2012

It's Mother's Day, my second with Aaron.  I have all my children under my roof this morning.  I don't know how many more times that will happen.  My daughters are out of high school, and one is dating someone exclusively.  My oldest son will be preparing to leave on his mission this time next year.  And not one of us knows how long Aaron's earthly mission will last.  I am so blessed, and feel overwhelmed with love and gratitude today.

I was thinking yesterday about a Mother's Day 17 years ago.  I didn't realize at the time (yesterday) that I was being prepared for last night.  It is amazing how the Lord can help us get ready for things if we are aware of Him.  Seventeen years ago, I had a 14-month-old bundle of energy.  Sitting in church was a challenge for him, to say the least.  So I took him out.  There was another young lady, not yet married or with children, who was appalled that I had taken him out and not my husband.  She tried to take him from me, to give me a rest.  After all, it WAS Mother's Day.  I took him back and said, "Yes, it is Mother's Day, and I am his mother."  I was remembering yesterday how on that day, I wanted to do the "mother things" and I was grateful that I had that opportunity.  Don't get me wrong.  I LOVE being pampered.  Love it when someone else cooks, cleans up, does nice things and lets me nap.  But without my children, I wouldn't be a mother.

So this brings me to last night.  On the weekend, our nurses come in at 10 p.m and stay until 8 a.m.  Last night's nurse was one of our favorites, although in all honesty, I don't have one who's not truly wonderful.  About 10:15 she still hadn't shown up.  She's always on time, right on time.  So at 10:30 I called the agency.  They couldn't reach her, or anyone else at the time either.  So I set up to sleep in Aaron's room.  And instead of feeling apprehensive about the lack of sleep, or angry that I was going to be tired on Mother's Day, I was grateful.  So grateful that I have my wonderful son still here.  Grateful that I was being allowed to take care of this little angel who has so much to give spiritually, but so needs so much physically.  (Side note:  for those who wonder why my husband wasn't taking the shift and letting me sleep, it just works much better this way.  He wouldn't get any sleep at all, and I can sleep and get up for alarms and go right back out.  That way we would both get some sleep.)

Then, at midnight, the phone rang.  We have one nurse in particular who has been willing to come in on last minute notice more than once.  Apparently last night she went to bed about 8 p.m. and never heard her phone ring.  Her daughter noticed that there was a missed call and woke her mom about midnight.  She was willing to come in.  Bless this woman for her help and service.  SHE'S a mom, too. And she was teaching a lesson at church today.  But she came in from 1 a.m. and stayed until 7.  And she'll be back again tonight for a regular shift.  What a blessing she is in our lives.  I know she gets paid, but there are just some things you can't put a price on.  And she lives her life doing those things.

Monday, May 7, 2012

Crazy Week

Well, May is here, and in our house, that's crazy time.  Yeah, crazier than the holidays.  With school winding down, all the year-end concerts and projects, baseball, soccer and just life.  The past week we had six soccer games, four baseball games, two concert performances (same concert, two nights), one play performance (closing night), three scout meetings, and Prom plus prom activities.  This is in addition to normal (whatever those are) meals, homework and practices.  Yeah, I said it was crazy.  But so much fun to watch the kids enjoy life.

Aaron also had a doctor's appointment, a check-up following his PICU stay.  He's still working on getting better.  He's not there yet, but we have faith that he'll continue to improve.  He did make it to church yesterday, but was being a little oxygen piggy.  Fortunately, I've learned to always have back-up O2 on hand, so we just changed out his tanks.  He's sleeping quite a bit, and he's still got a lot of junk in his lungs, but he's a little happier each day.  Another special needs mom saw the picture we did for his friend, Emily, who passed away a couple weeks ago and sent him the cutest sock monkey.  It is so colorful and he just grins whenever he sees it.  He loves to grab it an shake it, and then of course, chew on it.

Lone Peak Ballroom Concert

Seusical (We claim the boy Who at our house.)

Prom 2012 (the kids took much better pictures at the Thanksgiving Point Gardens than I did at home.)

Andrew with his CUBapolis 500 racing car.  He took first in his heat, mostly thanks to his sibling pit crew.  Way to be a family!

We're almost to Aaron's second birthday -- five more weeks.  I can't believe how time has flown, or how blessed we have been to be allowed to keep him with us.  He is such a blessing...

Wednesday, May 2, 2012

Alayna's Angel Day -- Hope Lives On

Sweet Alayna Hope
Almost one year ago, a beautiful little girl from Eagle Mountain, Utah passed away.  Like Aaron, Alayna had full Trisomy 18.  Because one or the other always seemed to be struggling, they never got to meet in this life, but I spent time on the phone with her mom, met her family, and they came to Aaron's birthday party.

Alayna's dad and siblings with Aaron
and some of my kids at the movies.

Alayna's mom and siblings at Aaron's
birthday party.

Alayna blessed her family with 160 days of love.  To remember her, they are promoting a "Hope Lives On" party.  Alayna's middle name is Hope and this is a wonderful way to continue her legacy.  It's really easy.  Each day try perform a random act of kindness (or two) and post it on her facebook site by clicking on the link or her name below her picture.  They want to have 160 acts of kindness each day between May 1 and her angelversary on May 18.

I know that when I talk to a mom with an angel, her biggest fear is always that her child will be forgotten. Let's help the Abbott family pass on Alayna Hope's legacy.  What are you going to do?
The picture they gave us for
Aaron's 1st Birthday.
We CAN do hard things, but this one
is easy.  What are you going to do to
brighten someone's day?

(If you don't have a facebook account, or have trouble going there, you can post it here and I'll make sure they get it.)

Tuesday, May 1, 2012

Finally Feeling Better

This one has been a rough bug for Aaron.  It's taken a lot of work and strength for him to fight this one off.  See, it wasn't even that bad as colds go.  But his lungs didn't feel the same way.  For them it was knock down, drag out fight.  And there was (and may still be) considerable concern that it may have done lasting damage to those already sick little lungs.

Our last few days have been pretty rough.  Aaron did exactly what he needed to do to get out of the hospital.  He was on 2 1/2 to 3 liters of oxygen for 24+ hours and only needed suctioning to bring him back up quickly when he'd drop his oxygen saturations (desat).  So we were discharged.

Literally as we left the hospital, he started changing.  As I buckled him into his car seat, I had to turn him to 4 liters.  It became 5 before we hit the freeway.  We bounced between 4 and 7 liters for the next two days, with occasional brief periods even higher.  We stayed home because he was still in fairly good spirits, and to be honest, there's not much more the hospital can do right now, especially since we can't get an IV in him until his veins heal up from our last many attempts.  Can I tell you I was not a happy mama?

BUT starting yesterday evening, we've started seeing signs that he's almost back to where he should be. Instead of a restless sleep, he's sleeping deeply and quietly.  Instead of nasty, thick secretions being pulled out just about every hour, it's much less often and they're thinner.

I discontinued his breathing treatments because he actually seemed to struggle more during and just after them.  I know I can restart them if he seems to need them, but for now they weren't accomplishing any good.

And this morning, he was wiggling and squirming all around with two hands tucked into his cute little smile.  He was saying, "all right, I'm ready to go again.  Let's play!"

Just now, he's sleeping.  And his heart rate, it's down.  That green number in the picture is his heart rate and the red is his oxygen saturation.  Both right where I want to see them.  And it's really hard to see, but the little silver ball on the oxygen concentrator?  It's on 2.  That's right, 2.  I'm finally breathing better myself.