Thursday, June 30, 2011

A Year and a Day

Wow, what a year it's been.  We brought Aaron home from the hospital one year and one day ago.  I remember being so overwhelmed.  He had oxygen through a nasal cannula, and ng tube (through his nose into his stomach) for feeding, and a heart/apnea alarm.  We didn't even have a pulse/ox to measure his heart rate and oxygen concentration.

In the beginning, I made a list so I would remember to do everything each time he needed to be fed, every three hours.  It took me 15-20 minutes to get him ready to feed, 30 minutes to feed, and then repeat just about 2 hours later.  And when that apnea alarm went off, everyone learned to get out of the way, because I would literally go over the top of anyone in my way, without even realizing they were there.  It meant he had already not been breathing for at least 20 seconds.  Fortunately for all, he outgrew his central apnea just after his two month birthday.


When he was four weeks old, Aaron was acting strange.  I couldn't tell you what was bothering me, but I didn't like something.  So I took him down to American Fork ER to have him looked at.  I was definitely naive.  I thought maybe they'd give him a breathing treatment and we'd be back in a couple of hours.  Not so.  Lone Peak EMS was called to transport us up to Primary Children's Medical Center where we spent the next 10 days battling heart failure.  We came home with the same equipment, plus a pulse/ox and four new medications, two for his heart and two for reflux.  I had to make a spread sheet to keep up.

We were so blessed to be able to go on enjoying our bug.  We went to a parade, saw Dr. John Carey, had Halloween, and went back for g-tube/nissen surgery.

What we didn't realize was that Aaron's airway was dangerously collapsing.  Looking back, I don't think he would have live another week had we not gone for g-tube surgery when we did.  During it, the ENT discovered the danger and he got a trach three days later.  This has been wonderful for Aaron.  Not only has it allowed him to breathe (small detail) but he could also use his calories to grow instead of fighting so hard just to live.  For those who remember my other babies, most of them were about fifth percentile for weight on their first birthdays.  Aaron is third percentile.  But among T18 kids, he's actually 75th!  Yeah, he's growing well.

Because his vent settings weren't quite strong enough for him, four days after being discharged, Aaron was lifeflighted back to PCMC from our home.  But once we realized how much support he needed, we were on our way again, about nine days later.

Christmas came and went and we got to enjoy a Christmas with Aaron.  This was something I didn't know if I even dared to look forward to.  It was such a wonderful day.  I will never forget it.

The winter wore on and we became frequent flyers with Lone Peak Fire and professional patients at PCMC. The scariest time was in February when he developed pseudomonas pneumonia.Once I quit asking if I needed to tell William to come home (he was in St. George with the older kids for soccer), I started asking how long to expect to stay.  No one would answer me.  I found out when we were being discharged six days later that everyone had expected a several weeks stay.  But Aaron proved them all wrong, again.  Except when he was one week old, I had not, and haven't been, so scared.  I just kept holding his hand and telling him that I wasn't done.  I still needed my bug.  Besides, he had some really cool wheels coming and he needed to stick around to try them out!

Since the weather has warmed up, we've been able to enjoy so many things.  And he has become much more healthy.  In fact, except for his pH study a couple weeks ago, we have been out of the hospital for 13 weeks today.  That's almost three times our previous record!

He's been to the library and the zoo.

We've gone to soccer games, movies, and even a baseball game.  

He even went to the pool today with the kids, although he couldn't get in.  But the boys sure had fun!

And then tonight, another trisomy mom had put together a webinar with Dr. Steve Cantrell about our kiddos and their eyes.  It was so wonderful to be able to listen in and then ask questions as an expert tries to help us.

BUT, on the other hand, there are so many out there who are not able to cuddle and hold their babies.  A friend today, trying to get a grasp on things, was asking how many I know who've lost their babies over the past year.   I truly have no idea.  She asked, "20?"  And I have to admit, I think it's a whole lot more. Trisomy 18 is not an uncommon diagnosis.  One in every 3000 pregnant women will be told their baby is "incompatible with life."  What is less common is to be able to bring them home.  It is very uncommon to hold them for a full year.  We have been so blessed to be able to start to enjoy seconds.  Second Father's Day, soon my second birthday with him, and so many, many more, we hope.

I am also starting to celebrate (?) first birthdays and angelversaries with my trisomy friends.  Tonight, we went outside and sent a beautiful green "Happy Birthday" balloon and bubbles to Addie and tomorrow we'll do it again with a red one for Emalee.  Happy Birthday, angels.  Fly high and send your mommies angel kisses.

Sunday, June 26, 2011

Trials and Blessings

Happy, Happy Bug!!!

As I sit here writing, I can hear William reading "Green Eggs & Ham" or a version of it, to the boys.  They're laughing and giggling at his funny rendition.  All the kids are currently in the house.  I'm not sure what they're all up to, but I know they're all here.  It is so wonderful.

Today in church it seemed like the topic was on trials and blessings.  I was asked to share a few thoughts on that.  I guess it's pretty obvious that our life has changed pretty dramatically in the past year and a half.  BUT, as crazy and hard as it sometimes has been and is, I would not change it.  We have been blessed immeasurably.  And we continue to be blessed.  I would not have chosen this, but I could not see where it would take us.  Aaron has taught us things about ourselves and each other that we could learn in no other way.  Our trials are custom-made for each of us.

I am amazed at how tailored our challenges are.  In the PICU, on Thursdays, there is a parent luncheon.  Those who want to gather, have lunch and usually some kind of speaker.  We also talk, sometimes a lot.  The thing that is so incredible to me is that I don't think one of us would trade places with another.  I can't imagine watching a previously healthy, active child lying still in a bed because of cancer therapy, or an accident.  The other parents can't fathom having a child that was told they would never live and have no expectation of a long life.  Each of us is grateful for our own, but we still empathize with the others.  Because, if you're at that lunch, your child needs intensive, specialized, life-saving care.  

Aaron is scheduled to go in for surgery in ten days, on July 6th.  I think we'll also be changing his vent settings as well.  I'm really hoping he does okay on the settings he's on until then.  We chase oxygen up and down quite a bit, but his other numbers are still stable.  As long as they are, we're okay.  But it's a little bitter-sweet too.  His quirky little smile will change.  And we probably won't see any smile for a little while.  It will hurt too much.  So we'll concentrate on taking as many smile pictures as we can for now.  Because there's nothing quite so wonderful as his smile.  It just melts your heart.

Friday, June 24, 2011

This Week

It's been a busy week around here.  We started at Shriners Hospital on Monday.  The plan was to get casts put on Aaron's feet in an effort to straighten them out.  I took Michael and Joseph along so they could play in the play area after we were done.  When we got there, they were excited to see Alvin and the Chipmunks in the lobby.  Joseph even noticed that the chipmunks eyes matched their shirts!
The boys with Alvin and the Chipmunks 
There was a big fish tank and Michael and Aaron were fascinated with the fish swimming around.  There was a catfish that was a little aggressive and they felt like he needed a time-out.

However, the appointment itself turned out to be a bit of a disappointment.  We were there for two hours and had his feet photographed and measured.  We went over his medical history and everything else.  The doctor spoke frankly with me about the likelihood of success with the casting.  Apparently success rates are very high when the malformation is because of positioning in the womb.  However, when it is related to a disorder, usually surgery is needed to install pins in order for correction to be permanent.  In Aaron's case, the benefits of surgery are outweighed by the risks of it.  It is unlikely that he will walk well anyway, and his feet are not severe enough to prevent walking if they are not corrected.  So we will try casting but not surgery.  His particular deformity is called a vertical talus.  Usually the talus sits horizontally and the feet bones go forward off of it.  However, Aaron's talus bones are vertical (thus the name), which causes his tendons to be extra tight and  bring his feet up and out.

That, however not encouraging, was not the disappointing part.  Just as they began wrapping his left leg, the doctor looked at me and asked, "When is his surgery for his lip?"  "Two weeks."  "Two weeks?" and she looked at him and looked back at me and said, "I can't cast him."  Turns out you really can't go into surgery with casts on.  It makes sense.  They will be giving him extra fluids and he will have swelling.  They'll also want access for IVs.  In the doctor's words, his surgeons would "freak out if he showed up with casts!" But how frustrating to waste all that time.  When we originally spoke about casting during the summer, he was going to have his surgery in April.  Now we're scheduled for casts on August 1st.

But Joseph (remember the last post) managed to get his cast on Tuesday.  So one out of three casts were accomplished.  And Joseph's will come off about the time Aaron gets his one.  We'll be going up to Shriners once a week for a few weeks while we see if there is any improvement.  

Aaron on the Heber Creeper.  Notice the old-fashioned
stove pipe in the background.  It provides
the heat for the train in the winter.  Summer air-
conditioning courtesy of open windows.
Then Tuesday evening we packed up everything (and I mean EVERYTHING) and went to Heber for a family reunion with William's family.  Aaron's stuff took up the whole back of the van (it's large!) and everyone else's went on the back bench.  We had a great time.  Unfortunately, I didn't manage to take many pictures.  In fact, the only ones I got were on the Heber Creeper train ride.  It's an old-fashioned train that winds down through Provo canyon and back again.  Aaron really seemed to enjoy the breeze in his hair.  

Some of the older kids were sitting just across from us.  Thanks to Deborah for "babysitting" Aaron's extra oxygen tank.  

We also got held up in Soldiers Hollow.  Bandits came riding out of the hills looking for the money box.  Turned out there was only a stuffed duck in it.  Aaron stared down those bad guys without even blinking.

We had a great time with everyone.  I'm just hoping some of the others who took a bunch of pictures will get them to me.  We're back home now and hoping for a peaceful night.  However, it looks like we may be chasing oxygen.  We were about 800 feet higher than we are at home and it turns out that it takes about 24 hours after a change for the lungs to fully adjust.  So our first 24 hours in Heber, Aaron looked great on home settings.  After that, he was requiring much more oxygen.  I spoke with Chris Hartling at PCMC and she said that was completely normal.  And that it would take 24+ hours once we got home to stabilize again.  And all afternoon it's been too high or too low.  We're having an awful time finding his happy spot....

Friday, June 17, 2011

Good News, Hard Time and a Looong Day.

Good news first:  it looks like Aaron's nissen is still intact.  I heard from the surgeon's office and his pH study came back completely normal.  I know we had stomach acid issues and reflux in his g-tube, so while it was there, none of it was making it's way into his esophagus.  So no surgery redo.  YEA!!

Now the Hard Time (but it's not Aaron):  Today I was struggling to stay awake (more on that later) and so I decided to lie down in Aaron's room.  Just after I fell asleep, Andrew came in to tell me that Joseph was rollerblading down from the top of our street and going very fast.  Now, we've patched up a bunch of knees and elbows lately and I really wasn't in the mood to have my nap interrupted that way.  So I figured the best way to avoid that is to use the electronic babysitter and have the boys watch a movie while I slept.  I sent Andrew out to get Joseph.  He may have barely gotten out there when there was a knock at the door.  It was their neighbor friend saying Joseph had hurt his arm.  I asked, mostly rhetorically, on the way out, did he break his arm.  And from the front lawn I hear another neighbor say, "Yes, he most definitely did."  Um, yeah, the forearm isn't supposed to be all wavy.  It almost looked like there was a second elbow, except the curve went back and forth just below the wrist. (Sorry, maybe I should have said, not for the squeamish.)

So away we went to the emergency room.  The staff at American Fork was wonderful.  He was in so much pain and they got him on morphine and x-rayed and sedated very quickly.  It was kind of fascinating to watch the orthopedist manipulate it back in.  He then splinted it and sent us on our way.  Joseph woke up as he finished the splint and looked up and very clearly said, "Thank you, doctor."  But the poor kid is still in a lot of pain.  I have to give him ibuprofen every four hours for this first day or so.  And he was supposed to start practicing with an all-star baseball team tonight.  Not anymore.  Baseball is definitely out for the summer.  He'll get his cast on Tuesday and have to wear it for 6 weeks.   He and Aaron can match.  Aaron goes for his cast on his left foot to help straighten it on Monday and he'll have various casts for 6-12 weeks depending on how it goes.

The long day started about 2:30 this morning with Michael.  His tummy wasn't happy and he was up and down the rest of the night, which is why I really wanted that nap.  Oh well.  My grandpa used to say, "No rest for the wicked and the righteous don't need it."  I know he always seemed to be on the go and never needed to rest.  Me, I think I must be wicked.  Because I sure feel like I could use some.

Thursday, June 16, 2011

Aaron's First Year, part 2

This is the second half of the slide show we had at Aaron's birthday.
This one has been updated with some pictures from his party as well.
Thanks for being part of our lives, Aaron.  You enrich us immeasurably.

Aaron's First Year part 1

This is the first half of the slide show we had at Aaron's party.  What a blessing to have in our home.

Tuesday, June 14, 2011

What a Day!

I sit here, overwhelmed with gratitude and joy at the love that so many show our Aaron.  Last night was incredible.  From the first guests, our firefighters/paramedics, all the way through until the last guest (a little 4 year old girl) left, there was so much love and support.  The fire engine & ambulance pulled up just before 5:30.  I was still putting Aaron in his wheelchair when my sister, Michelle, called out that since she didn't think I'd called 911, our first guests were here.  I actually had a few neighbors really worried that there might be something bad going on.  I found it funny that they all stood outside on the sidewalk

for a while.  When I got Aaron situated, I opened the door and invited them in.  I told them that they of all people, knew how to open my door and walk in.  It was so great to have them here.  They have meant so much to us this past year.  Without them, Aaron would not still be with us.

Getting Ready for the Party!  My sister, Michelle, made these cute posters and was responsible for getting us set up.  She came up from Arizona to help us celebrate and we had so much fun.

The preemie outfit on the left was too
big for Aaron when we brought him home.
The one next to it is what he wears now!
Michelle made the "I Can" book for him and
we had guests write notes to him for his
birthday book.

Most of the kids.  clockwise:  Deborah, Michael, David,
Joseph, Jonathan, Matthew, Andrew, & AARON.
(Mary is back east on Heritage Tours.)

A few of our many, many guests.  Thank you so much for coming.

Joseph ready to welcome guests.

Our pediatrician, Dr. Knorr and his nurse, Cassie,
also came to see Aaron.

Of course, the little guy decided to show everyone who was really in charge, and slept through most of his party. 
Shannon &Tonya Blackham came
to see Aaron.  They've been some of
his biggest cheerleaders.

The Miller Family

Grandma Wiess & Grandpa Bear

The Abbott Family

Aunt Alice and cousins

Katie & Mom

Me, my sisters Michelle & Mara, and my niece, Lauren
Pheobe & Udell Blackham.  They graciously
offered to man the kitchen.  I didn't do a
thing.  They handled it all.  Such a
wonderful gift!!

It's time to try to wake up our guest of honor.  He had snoozed through all the guests arrivals, but he needed to be awake for the balloons and his cake.

Yesterday's weather was typical of Utah:  if you don't like it, wait five minutes and it will change.  It started out windy, then cleared up, but by party time we had some dark clouds gathering.  We had set up to be outside, but had to gather in the table clothes and chairs.  It was sprinkling as we went out to set off the balloons, but stopped almost immediately.  William welcomed everyone and told them that he saw the balloons as symbolic of all the prayers that have been offered on Aaron's behalf over the past year or so.  Then he read a poem about balloons that are set free.  In it, a child asks about balloons.  He wonders what they do on their journey, get stuck, popped and so on.  Then he decides that God gathers them each day and gives them to the angels children to play.  William read it because I couldn't get past the first two words.  There are so many precious souls that have been called home this past year.  I hope they had fun with all the colors.  Just as William finished the poem, the clouds broke, sending a beautiful ray of sunshine down.

 We had so many balloons, I think the local store ran out of hellium.  I wonder which color each angel chose.

Cake Time! I don't know what Aaron thought of his cake.  He seemed to think it was fun to wipe his hands in the frosting.  I looked at his suction ballard and decided there was no way I was going to be able to get it clean.  Then I remembered that it was ballard-change day and I hadn't done it yet.  So we just changed it.  Magic, it's clean again!

Just as we were finishing with his cake, a beautiful rainbow appeared.

Afterwards, Aaron decided that maybe this party thing was fun after all.  A nurse at PCMC, and a distant relative, brought him a fun balloon that we tied to his chair.  He LOVED it.

Michael thought it was pretty cool, too.
 We love our little bug so much.  As much as we give him, he gives us more.  He teaches us so much about love and peace.  His is an invaluable gift to give.  He touches all who come in contact with him and they are better for knowing him.  Happy Birthday, Aaron.