I Hate Statistics

I know the statistics:  50% die prenatally.  Of those born alive, 50% die within the first two weeks, usually the first couple days.  Only 5-10% turn one here on earth.

I know that families can be forever.  We get those precious ones we lose back later.  We get to love and raise them.  I believe that love extends beyond the grave and that those whom we love and that love us, continue to be close to us even after they (or we) have passed.

BUT, when those statistics take on flesh and blood, they cause pain.  They hurt.  Like hell.  Today I found out that a beautiful little girl, Sophie, born on May 6th in Gilbert, Arizona passed away.  One week ago, little Alayna, up here, died.  Two in one week.  The pain is real.  I love those moms.  We have shared so much with each other and they will always have a place in my heart.  I hate this.  I really do.

What’s Going On, or What I Think is Going On

This is Aaron today, and one of my very favorite preemie
outfits.  We had to roll up the sleeves when he first wore it.

Yesterday afternoon, I took Aaron in for an upper GI series to try to see why he’s been refluxing his formula.  He should not be getting that up into his mouth.  And the verdict is:  the jury is still out.  I watched as the radiologist put the radioactive solution through his tube into his tummy.  The good news is we actually had to use quite a bit because as soon as it went in, he was sending it out to his intestines.  That’s called motility and his is really good.  (Lots of these kids have very poor motility.)  Then I watched as the perfect stomach-shaped image appeared.  That, apparently, was not good.  He felt like he should have been able to see a divot where the nissen was, or where it was supposed to be.  The next step was to put an ng tube (the same kind we used to feed him with prior to g-tube surgery) down his esophagus and put the barium down it for a look.   It looked to me like the two really didn’t meet, not quite all the way.  But the radiologist felt like the nissen had “dehisced” or come undone.

However, later when Aaron’s surgeon, Dr. Downey, looked at the images, he wasn’t so sure.  I really like that he admitted that the radiologist was much more experienced with reading the images than he was.  But he felt like he knew the procedure, and Aaron, better and that he saw several markers which would suggest the nissen was intact.  Either way, though, there is a problem if he’s getting milk into his mouth.

Aaron in his preemie outfit -- 3 weeks old.

So, here’s where we are.  For now, Aaron has gone on continuous feeds.  This means that his feeding pump is going for about 20 out of every 24 hours at a slow rate.  He really seems to like it.  He’s done very well, but still has a lot of gas bubbles.  However, no retching and not desats.  We will go into the hospital for a pH study of his esophagus sometime in the next couple weeks.  That will take 24 hours to do and a few more days to be read.  Then, we may have to repeat his nissen surgery.  This is much more involved than the original surgery because of scar tissue and adhesions that will have to be dealt with.  Instead of 1-2 days in PICU and a day or two on the floor, he will be in PICU for seven days.  I really like the PICU staff.  They’re a lot of fun and really great.  I’d love to go to lunch with them once or twice a month.  I don’t want to go live with them for a week, or more specifically, I don’t want to need intense medical care for  week. 

Smiling at Daddy

I’ve forgotten over the last few weeks how tenuous Aaron’s hold on life is.  The surgery itself is not dangerous, but how his heart and lungs handle it can be.  I was asked again, and it’s a fair question, how far we wanted to go with Aaron.  Again, I had to explain that as long as he wants to live, we will support it.  He asked how I would know when Aaron was done.  I replied, “He’ll tell me.”  And he will, but I was reminded that the day will come when he will be done.  The conversation is a necessary one.   I understand that.  The doctors need to know exactly where we are so they can support us.  But I hate it.  I fought tears all the way home.  I hate putting my beautiful baby through so much pain.  But I hate the thought of losing him more.   

I wish the medical staff could see him here at home.  He is so happy, so vibrant.  I can almost forget the medial equipment, at least until he pops off his ballard.  I don’t see it anymore.  Last week he started laughing when William plays “beep” with his nose.  Today I discovered that he’s ticklish under his ribs.  He’s starting to turn his music on his mobile on by himself.  He’s growing so much.   Can’t he just keep on going?  I don’t want Death knocking at my door anytime soon.

A Heavy Heart

Today's been a rough day.  Not so much for Aaron as for me.  I'll write more about that later, when I've had some time to put together my thoughts.  But the hardest part was a phone call that came just as we got home from Matthew's concert tonight.  A beautiful baby girl was born with T18 to a family out in Eagle Mountain.  We've tried a few times to set up a meeting, to get together.  Each time, one of our babies would be struggling a little, so we put it off.  Last night, little Alayna grew her angel wings and went home.  I am so heartbroken for her family.  I feel badly for each family I know of, but some just hit a whole lot harder than others.  I just hurt so badly for them.

Squirrelly Child

I have a very squirrelly child.  He has been doing so very well.  We even took him to the 2^nd grade program at Westfield on Tuesday night and he really seemed to enjoy it, waving his hand to the music and all.  I’m not sure what’s going on now.

Background:  because he has grown (YEA), we have needed to increase his feedings.  We were going up by quite a lot:  560 ml/day to 720 ml/day, or from just under 19 ounces to 24 ounces.  So I cut the difference in half and we tried that for a few days.  He did really well, so I increased it to the full amount.  Then he started to have some trouble.  He was having a lot more gas and also some diarrhea.  Then early on Sunday morning, he refluxed some of his formula up past his nissen and into his mouth.  We haven’t seen any of that since his nissen surgery.  The risk there is of aspiration since he can’t protect his airway.  So I exercised the mother’s prerogative and cut his feedings back to the intermediate point.  He is gaining weight so well.  He’s already over 13 pounds.  At 11 months, that’s only a few pounds shy of where his siblings have been at one year.  They were each right around 18 pounds and they don’t have his challenges.  He was still happy on the smaller feeds, in fact happier, because he wasn’t having all the tummy trouble.

Then Wednesday we had trouble again.  He brought up a fair amount of formula in the night and again at his 3 o’clock feeding.  In between those, at 8:00, I think he would have, but I saw him start to struggle and quickly vented him through his tube.  He brought back almost half his feeding into the large syringe along with a lot of bubbles.  And he’s just miserable when that happens!  I’ve spoken with his surgeon’s nurse who has left notes for him to respond.  The concern is that part of his nissen may have come undone, and each time he refluxes like that, he can aspirate into his lungs.  We’re pretty sure he hasn’t yet because his sats haven’t, or hadn’t, dropped and they would if he was getting fluid in there. 

He hasn’t had any more episodes since yesterday afternoon, but he’s a pretty sad bug now.  Last night, Kristina, his nurse, vented his tummy each hour to try to ward off the reflux.  It worked, but each time he had quite a few bubbles, more than we would expect.  And he has been going up on his oxygen, but his lungs still sound clear, or at least “Aaron clear.”  What he has been doing is trying to rub the right ear off his head.  So now we wonder:  when he refluxed, did he get fluid into his Eustachian tube?  Why isn’t it draining out the tube in his eardrum?  Is the tube (eardrum) blocked up with wax?  He has a lot of wax.  How can you diagnose an ear infection when the ear canal is too tiny and twisted to see the eardrum?  And most curious, why does he always seem to pick Thursdays to act up when that’s Dr. Knorr’s day off???  So I watch and wonder and pray.  And, on a side note, I wish this dreary, rainy, yucky weather would go away.  I think our next project may need to be an ark.

What the view is supposed to look like.

The last who knows how long! 
I think there's still a mountain there.

Happy 11 Months!

Aaron is 11 months old today.  It is so wonderful to have him a part of our lives.  He is also doing much better than he was at the beginning of the week.  On Mother's Day, I thought he was outgrowing the size of his trach, and I suppose he may be.  But he definitely had outgrown his sildenafil dosage, again.  The kid just keeps growing!  (That's a good thing.)  Anyway, cardiology called on Monday and increased his dosage by a little.  We also increased his feedings again as well.  The poor baby had to deal with increased meds (which increases his heart rate a bit), increased feeds (more pressure in the tummy), and his super antibiotics all at the same time.  Tuesday and Wednesday were a bit sad for him.

BUT, come Thursday, his tummy had stretched and his meds had kicked in and lowered his lung pressures.  Lo and behold, we're back down low on his oxygen usage and high on the smiles!  He's still taking his antibiotics, but those will be done tomorrow.  The weather is also gorgeous so I'm going to try to take him to the boys soccer games.  It's looking like a great weekend!

On Wednesday, as part of his therapy, I put him on the floor on a blanket.  In the past, this has been a pretty short experience as his oxygen and heart rate haven't always liked it.  This time, his vitals were good and he was really happy.  He spent several hours on the blanket, took and nap and even had a feeding there.  So I decided to lower his bed (it's been raised quite a bit at the head) so he could enjoy that all the time.  I don't know what's different about flat on the floor vs flat on the bed, but there is one.  Apparently he wants a little bit of raise on the bed.  But it's still down a lot and we've moved toys and the mobile around.  Now his mobile is on the side and he can hit it with his hand.  His nurse, Kristina, noticed that at night he does it a lot.  We're not sure if it's on purpose yet, but he's always excited to see and hear the music when it turns on.  I think it's just a matter of time before he puts the cause/effect relationship together.

I've been thinking lately (I know, dangerous).  I have an online friend whose son was initially diagnosed as full T18.  He is doing incredibly well, and hitting milestones that we're not supposed to see.  Although I'm learning quickly that we need to not say a child can't do something.  Aaron will probably never go to medical school, but that doesn't mean he'll never be able to do anything.  Anyway, recently the doctors did a skin biopsy on him and discovered that he has a mosaic form of T18, meaning it's not in all his cells, just some of them.  This is where I got to thinking.

Aaron has full Trisomy 18.  Every single cell in his body has a third copy of the 18th chromosome.  It just does.  There's nothing that can be done about it.  But we don't treat his chromosome.  We treat the challenges that it causes.  He has a g-tube and nissen because that third chromosome causes very low muscle tone and disorganized swallowing.  He has a trach and ventilator because that same chromosome causes the cartilage in his airways to be much too soft to hold open his trachea and bronchial tubes.  We do physical therapy with him to strengthen those same muscles.  So we treat the challenges, not the syndrome.

But, that same third chromosome has some great advantages, too.  It allows a perfect spirit to shine through.  It has allowed us to experience the newborn phase for almost a year now.  I LOVE newborns.  It's been so great.  It has drawn us closer as a family.  It has strengthened my testimony of Jesus Christ and His atonement.  It has allowed me to make so many new friends, friends whose strength I rely on, friends I hope I help, and friends whose heartaches and joys I share.  I've broadened my horizons.  I've learned to write more.  I've also learned to ask for help.  I pray more, a lot more, and not just for my family and close-by neighbors.

Aaron's extra chromosome has created a new normal for our family.  It is not easy.  It is hard.  But I keep hearing the speaker from our back-to-school fireside last fall:  "I can do hard things."  Everything worthwhile come with pain and hard work.  This is no different.  I can do hard things.  They bring such wonderful blessings.

Mother's Day

Today has been a good day, in so many ways.  Maybe the secret is to just go with things.  I remember several years ago, leaving church early and going home and crying.  I just felt like such a failure on so many levels.  Today has not been that day.  My thoughts are a bit random, and lengthy, so please bear with me.

This morning, I was, once again concerned about Aaron.  As I was getting ready, I was pondering and praying and going over everything in my mind.  He is doing well, just creeping up on his oxygen, and has been for the past three weeks or so.  We've been at his upper baseline or higher the whole time, except for about 4 hours on one day.  As I was thinking about the whole picture, I also realized he's been snoring and vocalizing just a bit around his trach.  Then I realized that his worst times are when he's asleep, read "very relaxed" and if I sit him up in a more upright position, he does better.  This is what he was doing last December when they brought us in to add a cuff to his trach to help him oxygenate better.   My best guess is that he's grown enough to be leaking air a lot more around his trach.  This would mean that he's not getting the oxygen or pressures that he needs to keep his lungs open well.  So I came out and put in .5cc more of air into his cuff and, lo and behold, dropped his oxygen usage!  He's had a good day too.  He slept through Sacrament Meeting and Sunday School, and was awake and playing and smiling in Relief Society.

I got up this morning to hear someone in the kitchen.  That someone was my oldest daughter, Deborah, making french toast for me.  Something you have to know is that Deborah believes getting up anytime before 10:30 a.m. constitutes cruel and unusual punishment.  But she got up before I did at 5:50 to have breakfast for me.

Another payday, this morning the graduating seniors (some of them, we have 14!) spoke on mothers.  Mary made me cry almost from the start.  She started with a quote from Washington Irving

“A mother is the truest friend we have, when trials heavy and sudden, fall upon us; when adversity takes the place of prosperity; when friends who rejoice with us in our sunshine desert us; when trouble thickens around us, still will she cling to us, and endeavor by her kind precepts and counsels to dissipate the clouds of darkness, and cause peace to return to our hearts.”  

Then she proceeded to say that through all the hardest times of both my life and hers, I always had a positive approach.  I'm so glad she sees it that way.

Jonathan gave me a note that said that when Joseph Smith described God the Father and Jesus as "Glorious beyond description" he felt that mothers could be described the same way.  Another payday.

And then cute Michael.  Four years old is so honest.  He filled out a paper about his favorite things about mom.  The first said "My favorite thing that you say to me is:"  and he replied "Yes, play Wii!"  I think it was probably supposed to be "I love you" or something like that.  But he's right, that is his favorite thing for me to say. 

Yesterday, my mother-in-law said she was "listening with her heart" and Aaron told her what he wanted me to have for Mother's Day.  I came home to a gorgeous hanging basket full of flowers.  I cried when I saw it.  (I seem to be doing a bit of that lately.)  And William has been working since last night on a wonderful steak dinner for tonight.  And to top it all off, the rain that was coming today, held off until this afternoon so Aaron could go to church.  I'm glad we live in a desert, because it takes me so long to load and unload him, and ventilators and other equipment aren't real compatible with water!

Since last Wednesday's adventure with his sats, things have been more stable for Aaron.  Thursday was gorgeous so we walked up to Matthew's soccer game with the stroller.  We also got to see Mary & David reffing a girl's soccer game as well.  They were just on the next field.

Yesterday was the quarterly Hopekids birthday party.  I found that I just couldn't sing "Happy Birthday."  We were warned by so many that we probably wouldn't see this day.  I was just so overwhelmed.  It was held at the Sandy Fun Center.  The kids who were there (Mary, David, & Jonathan had soccer games to play and ref) had a blast!  And I discovered that I can still roller skate.  I think it's been at least 25 years.  Of course, it helped that I had Aaron's stroller to hold on to!  He got a cute leapfrog book and his eyes got so big when he saw it.  He really likes it a lot!  

One more thought to end with.  This came as I listened to Mary's talk.  She referenced the 2000 Stripling Warriors.  I think I've heard that story a million times, but this time something else hit me.  We always talk about how they were saved because of their mother's faith.  They were, but not in the way we always think about "saved."  These were not naive young men marching off to play soldier.  Their parents were those who buried their weapons of war and allowed themselves to be killed rather than kill. They knew full well the effects of war on people and families.  They knew that men were killed and they hadn't grown up practicing to fight.  They had to have known that their chances of coming back at all were slim.  But they put their trust in the Lord.  Alma tells us that "Now they never had fought, yet they did not fear death; and they did think more upon the liberty of their fathers than they did upon their lives, yea, they had been taught by their mothers, that if they did not doubt, God would deliver them.  And they rehearsed unto me the words of their mothers, saying:  We do not doubt our mothers knew it."  (Alma 56:47-48).  They knew they were right with Him.  They were fighting a just cause, to defend their liberty and families, and they knew that they were okay with their Father in Heaven.  They drew on the faith their parents had taught them and they knew that if their time on earth was over, it was okay, because they were righteous young men. They were delivered in the most important sense of the word. 

This life is not the end.  Our most important associations will continue beyond the grave.  This is a school we have been sent to and some stay longer than others.  Our home is not this earth.  We are the divine children of a Heavenly Father who loves us.  And someday, we get to go home.

Up & Down, Up & Down, Up & Down

I’m hoping that writing about this will help clear the images, because I'd really like them out of my head. 

About a week and a half ago, Aaron started using a bit more oxygen.  A couple days later, secretions got thicker and he started sneezing and coughing.  So we caught a cold.  We increased CPT, changed the trach (subject of “I Hate Rollarcoasters”), and just tried to let him ride it out.  And it looked like he did.  Sunday, early morning, was really the end.  And I thought it would be smooth sailing.  Monday morning was his hearing test which, as an outing goes, went well.  No hitches or glitches.  And Tuesday was pretty good too, except that he didn’t get to go to the baseball game because it got too windy and cold.

Then there was yesterday.  I’d really like to be able to forget it.  And maybe my mind is, because some of the details are a little foggy.  I can’t remember if I had just suctioned him or not.  I think I had a few minutes earlier and had just finished listening to his lungs, which did not impress me.  I remember trying to decide what exactly I was hearing, because it was different than normal lungs (okay, his normal) and it didn’t sound like plugging either.  Then he desatted.  Big time.  With capitol letters.  DESAT!  We’re talking 33 percent was the bottom of it.  With a good wave form.  Appearance was ugly.   I mean, he’s a cute kid, but this was not pretty!  He was still, not struggling at all, and a purple/blue color, but still awake.  I’m sure it was just a second or two, but it felt like forever.  

I froze initially.  I had already increased oxygen a little bit because of the suction.  I tried to figure out, if I screamed, would William hear and come running?  Did I dare run for the phone to call 911?  Did I want to grab the oxygen tank, take him off the ventilator, and start bagging him with the 100% oxygen?  Since all of those took longer than I wanted (like, I really wanted to go back in time and have them already done), I reached behind and cranked his oxygen up all the way to 10 liters/minute.  And held my breath for about another second.  He started coming up.  It wasn’t real fast, but of course, every second felt like an eternity.  He hit 44, then 48, then back to 42, then bounced between 50’s and 60’s, then low 80’s.  Finally we hit mid-90’s again.  Really, the whole thing probably took less than five minutes.  But it was a very long five minutes.

It must have been just before about 9 o’clock, because I decided to take him to American Fork Hospital ER to get x-rays along with the labs that had already been ordered.  But first I put in a call to Dr. Knorr.  He recommended that we either go up to Primary’s main campus if I thought he needed admitting, or to Riverton’s campus for x-rays and labs so a pediatric radiologist could read the x-rays.  In spite of all the excitement, I didn’t really feel we needed to be in-patient.  But I wasn’t sure either.  So we went to Riverton.  Turns out that while the x-rays looked good, and most of his labs looked good, his white blood count was really high.  When Dr. Knorr called me with the results, his first question was, “How’s he doing?  How’s he looking?”  Fortunately, while his secretions were worse, he was processing oxygen much better than he had been.  So we decided to get a super antibiotic on board to see if we could head this off at the pass.  Otherwise, it was up to the hospital for us.

Anyway, today, he’s still pretty tired and lethargic, but I think he’s just worn out.  Looks like his old enemy, pseudomonas tracheitis again.  But the Cipro is kicking in.  He’s using less oxygen and secretions are becoming more normal.  Hopefully, this time we’ve dodged the admit.  Stay tuned for more excitement...

Hearing With His Heart



Still sound asleep after his test.

Yesterday I took Aaron in for his extensive hearing test, an ABR.  It uses brainstem responses to sound to determine if there is nerve damage causing hearing loss.  It was a mixed experience.  Usually it’s done sedated, but we were trying to do it with Aaron just asleep.  His right ear measured some responses at louder decibels, and he would also stir a little, but there were abnormalities as well.  His left ear measured almost no response, but he would stir a lot and almost wake up when the tones and clicks were sounded.  His heart rate also would fluctuate depending on what frequencies and tones were used.  It never dipped as low as it does when he’s asleep, so it looked like he was receiving some stimulation.  Because he does have damage in his brain due to his extra chromosome, it’s really hard to tell exactly what we’re dealing with:  severe hearing loss, or an inability for the nerves to process the sound in a normal way.

However, this is the interesting part:  Aaron hears and responds in a manner far beyond a normal child his age.  From the beginning, I would talk with him and tell him how we were trying to help him, but there were things he had to do on his own.  And it would take sometimes several hours, but he would do them.  Or, like early Sunday morning when he was acting squirrelly and I was trying to decide if he needed to go it.  I told him that I wasn’t real thrilled with his fluid outputs and his oxygen needs were a little high, and basically I was trying to decide if he needed to be seen.  At the minimum, we were going to head down to AF Hospital and get labs and x-rays.  And I told him about all of this.  I told him that if he didn’t want or need that, he needed to get it together by 7:30 a.m. when I was going to total his last 24 hours of intake/output.  Lo and behold, about 7 he started dropping his usage and upping his saturation rates.  And he gave me a really good diaper at 7:30.  So he got to stay home and play with dad instead of going in to be poked and prodded. 

Today was supposed to be a pretty decent day as far as the weather went.  About 3:00 it was really nice and sunny.  He was looking around past me out the window and grinning.  I asked if he wanted to go to the baseball game.  He stopped looking out and looked at me.  I asked him again, and he grinned really big grins.  I said, “We’ll have to see what the weather is really doing,” and he stopped smiling.  “But it’s supposed to be good, so if it is, you can go.”  Big smiles again.  Unfortunately, it was cold and windy when it was time to go, so he’ll have to try again another time. 

So, the long and short of it is, we’re being referred to the School for the Blind and Deaf.  At least initially, we’ll pursue the oral/auditory route.  If there is a profound hearing loss that can’t be helped with hearing aids, we’ll change over to a sign language method.  We’ll know more about that after they repeat the ABR under sedation when he has his surgeries in July.

But I remain convinced that Aaron understands us.  His ears and nerves may work properly, and they may not.  But communication does take place.  He is hearing with his heart.