Not so "incompatible with life"

Trisomy 18 has recently come into the news thanks to one of the current Republican presidential candidates.  Rick Santorum has a three-year-old daughter with T18 who was just hospitalized with pneumonia.  My prayers go out to them.  It's scary.  Really scary.  I think the one time (after he came home from the NICU) that I was terrified was last February when Aaron had pneumonia.  I sat by his crib all day, begging him to hold on.  Telling him I wasn't done yet.  He had to fight it off.  We still had so much to do before he passed on.  Thankfully, he listened, he fought, and he came home. 



And while for many people, this is the first they will have heard of Trisomy 18, it really is a fairly common diagnosis.  Somewhere between 45,000 and 55,000 babies are born in Utah each year.  Trisomy 18 occurs in one out of every 3000 LIVE births.  That means that there are between 15 and 18 babies with Trisomy 18 born alive each year in my state alone.  And when you factor in the idea that at least half are still born, the numbers of familes affected are even higher.  So when you look at your child, realize that during the year you celebrated his or her birth, some 30-40 families here in Utah were given a diagnosis of "incompatible with life."  Even the ones whose children were born alive. 

But when you delve into the medical world at large, you begin to wonder why exactly so many do not survive past birth.  Many women are denied a c-section, or even routine fetal monitoring, when their babies are diagnosed in utero.  Yes, I can hear you now.  Seriously?  Denied a c-section when their baby is struggling?  Well, surely if he's breech....  Nope, no section.  Fortunately for us, my doctors had a different outlook from many, maybe even most, others.  Aaron wouldn't have survived his birth had he not been born by c-section.  His heart couldn't tolerate the contractions.  It would slow significantly and then take a while to recover.  And those weren't even the hard ones. 

So, if an OB, or a perinatologist, is not willing to perform one of the most common surgical proceedures done today in the interest of handing a mom her baby while she can still look into his eyes, guess what happens if the child does somehow survive his birth.  Yeah, well, it's that "incompatible with life" label.  It sorta gets in the way of caring for them.  If the baby is going to die anyway, why try?  Well, try because you believe in the sanctity of life.  Try because you're not going to play God.  A mom I know was encouraged strongly to turn her daughter's ventilator off and let her go.  She informed the doctors that her daughter's lungs needed help, but the rest of her organs were doing okay.  And that when God chose to call her little princess home, there wasn't a machine on the planet that could keep her here.  And guess what, she was right. 

We have been so blessed to have doctors look beyond the trisomy when it comes to Aaron.  They looked at heart failure and said, well, how do we treat heart failure?  And let's just be a little more careful and vigilant because of his trisomy 18.  Let's use some great IV meds and high-flow oxygen and see what happens.  They looked at his reflux and said, his lungs are already struggling, let's do what we can to make sure he doesn't aspirate.  Oh, and when doing that surgery, they discovered that his airway was totally collapsed.  His doctor said he wasn't sure how he was breathing because it appeared to be medically impossible.  So what do we do for a collapsed airway?  Well, we trach and consider if we need a ventilator.  In our case, every single doctor has looked at the problems being manifest and Aaron first, and then took into consideration how the trisomy 18 might further complicate things, and went to work to fix the challenge. 

So many of our children are too fragile to sustain life.  It's true.  Their bodies are too frail.  But I'm hoping that with Rick Santorum and his daughter Bella in the national spotlight, that perhaps, maybe, some of those other docs, the ones who simply don't believe that our children can ever live, might rethink a couple of things.  Because life is precious.  Yes, and especially for our kids, tenuous.  But maybe, just maybe, it helps those around to see things in a different light, with a little love.  Perhaps not quite so "incompatible with life."

"We affirm the sanctity of life and of its importance in God’s eternal plan."   From:  The Family:  A Proclamation to the World

The Yuck

It seems this week the yuck that has been everywhere, decided to come here.  I've got one child who hasn't been sick in YEARS who has been kneeling at the porcelain throne.  Another (thankfully, older) who managed to lose 12 pounds in about 24 hours.  Not that I'd mind doing that, but it is a bit extreme.  And he didn't need to get rid of it.

So this week I've been hypersensitive about ANYTHING germy coming anywhere near our little guy, or me, if possible.  Yesterday, my luck ran out.  Fortunately, his has continued.  So I spent yesterday curled up on the couch while William took care of all the meds, feeds, alarms and so on.  I sat on a stool and tried not to touch while giving directions on making his foods.  I really, really missed cuddling the little guy, but still hoping he doesn't get it.  So far, so good.

But I did finally bite the bullet and update his medical history and schedule.  If we do have to go in, I don't want to try to remember what meds changed when, and what his new formula ratio is.  Especially since I have to look at my card each time I make it still.

Look who we found hanging out
at Shriner's.

Aaron had two doctor's visits this week.  On Monday, he went up to the club foot clinic (yeah, I know his is the opposite of a club foot, but they treat them all at the same time).  His doctor said his feet were doing really well.  He'll continue wearing his little braces until he outgrows them, but that probably won't be much longer.  Then he'll be done.  We go back in six months for another check-up.  By then it should be warm, no ice outside, yea!

On Wednesday, he went for his monthly Synagis vaccine.  This one is based on weight.  He's gained just over two pounds since his last one.  When you only weigh around 20 pounds, that's a lot.  So they're scaling back his calories a little bit.  My chunky monkey is going on a diet.  Maybe I ought to join him?  Nah.

Fleece Blankets and a Completed Eagle Project

The Eagle Project is done!  (or at least the working portion of it, he's still working on the paperwork)  Thank you so much to everyone who donated.





There were a lot of donations of fleece material, and over $300 in cash.  Most of this came from other families who have also experienced lengthy hospital stays.




Matthew organized and oversaw the completion of 78 fleece blankets to be given to children who are in-patient at Primary Children's Medical Center.  Last Saturday, they were delivered to the Stobbes who collect and organize them.  He was told that this was the largest single donation of blankets that they had ever received.



This will be such a blessing in so many lives.  A blanket around the shoulders, pulled tight, can feel like a hug.  Love is conveyed in each one.

Doing GREAT!

Playing, and working so hard on
those back and neck muscles.

Aaron is doing well, so well.  He is now fully on his new formula, and since Mom did it the smart way this time, he seems to be doing well on it.  We've increased some settings on his ventilator to help him be more comfortable, and he's loving his new car seat.  I love that it's actually getting a little easier and quicker to get him in and out of the house and car.  His new measurements are 9.6 kg and 72.5 cm.  Or 21 pounds, 2 ounces and 28.5 inches.  Getting big!!

Yesterday he had a full echo.  This is where they look at EVERYTHING involving the heart, chambers, valves, arteries, veins, and so and so on.  Most of his in the past have looked at heart function, with a specific focus on the right side of his heart.  He continues to improve.  There is still some impaired function, and the right side is still a bit enlarged, but that's okay.  For now, his oxygen and medicine are doing a great job of controlling his pulmonary hypertension (high blood pressure to the lungs).  The holes in his heart, specifically his VSD is getting smaller.  As he grows and his heart grows, it's smaller in proportion, plus the body is trying to fill it in with tissue.  His doctor says that unless something changes, he doesn't see the need for him to ever have surgery on it.  YEA! 

Recently, I was asked to participate in a video taping about my life with Aaron.  I was asked to prepare about two minutes worth of what I thought I'd learned that might be useful to others who were struggling with their own challenges.  I thought, two minutes?  How do I do that??  Two hours, maybe, but two minutes??  Sunday was my turn to stay home with Aaron and I used that time to try to piece together something.  I'm grateful for that time of introspection.  The taping was last night, and after it's all put together and presented, I'll put my comments up here.  But let me just say this:  in spite of all the medical knowledge that I've gained over the past two years, it is the inspiration of the Holy Ghost and my increased knowledge of the atonement that are the most valuable lessons that have come.  I'm so grateful that Heavenly Father sent Aaron to our home.  And I'm grateful that Aaron was so willing to come as my teacher.

What is "Quality of Life?"

WARNING:  Rant coming

What is quality of life?  I asked my kids.  "The extent to which you live it and the opportunities you take advantage of."  "How happy you are."  "How you react to your experiences.  How you treat people and they treat you."

Anyone seeing anything here about IQ levels?  Hm, me neither.

 I was visiting with a mom who's son has Down's Syndrome, Trisomy 21, while both our kids were under general anesthesia.  We were hanging out it that wonderful place called the "parent's waiting room" at PCMC.  (They really ought to offer parents anti-anxiety meds in there.  It's not a fun situation to be in.  Your child is with someone else, and they're artificially asleep.  Subject of another post, maybe later.)  Anyway, we were talking about how, with everything else happening to them, our kids seem to be the happiest, most forgiving, loving kids on the planet.  She said one of her relatives said these kids are born without the "misery" gene.  When I told William, he said the 47th chromosome must hold an extra "love" gene.

Regardless, these kids are happy.  They have fun.  So Aaron will never do advanced algebra.  I can think of a LOT of people who would think that was a blessing.  He has a good quality of life.  He loves.  He is loved.  He has fun toys and people to play with him.  He has nurses that are disappointed when he sleeps and they can't play with him.  He has plenty of food, a warm home, and comfy clothes.  And he doesn't complain about what's for dinner.

However, apparently (and I've discovered, not too uncommon) some medical professionals feel that "mentally retarded" people do not have quality of life.  First of all, "retarded" is a word that now has so many meaning, almost all derogatory, that it long ago gave up it's original definition.  I'm not one to be "politically correct" but please, in the medical field, where it is important to be precise, the term is "developmentally delayed" or "mentally disabled".  But no, this hospital has to call a certain little girl "mentally retarded."

So here's the story:  CHOPs, Children's Hospital of Philadelphia, one of the foremost and best pediatric hospitals in the country, has decided that little Amelia can't have the kidney transplant she needs because she is "mentally retarded."  Her parents say, well, fine, we'll donate a kidney from among the family.  No, that's not good enough.  They refuse to perform the surgery at all.  See, "she is not eligible for the surgery because of her quality of life, because of her mental delays."  Yes, you read that right.  The doctors and hospital won't help because she's not smart enough, and never will be.  You can read the story here, if you'd like.  It made me mad, and would have long before Aaron came along.

There is a petition out on Change.org to try to get them to change their minds.  It takes about five seconds to do so.  You can also go to CHOPs facebook page and leave a comment if you wish.  It seems that the court of public opinion has the ability to change minds when it becomes loud enough.  See, hospitals are businesses, and it is not good for business if people don't like them.  Please help this little girl.

Besides, Aaron just laughs at me when I feed the bed (or the floor) instead of him.  (Twice in 24 hours, now.  I'm on a roll.)  Wouldn't it be nice to be surrounded by people who reacted that way when you screwed up?

19 Months, and it's been a GREAT week!

We've had a great week around here.  It started with finally (mostly) getting rid of all the nasties he was dealing with, and a new car seat!  This is great for a couple of reasons.  Mostly, because the fact that he's outgrown his infant seat is further evidence that he's doing really, REALLY well.

Yeah, he's too big for an infant seat, too heavy and too long.  So he got this great, new, cushy ride.  He really seems to enjoy it, and if you could feel it, you would, too!  He's definitely got the best seat in the car.  It will actually grow and serve him for five years.  It's designed for kids up to 105 pounds, but if he were to reach that in five years, we'd really be in trouble.  My 8th grader isn't that big.  

 This is his first outing in the car with his new seat.  It's pretty early, and kinda cold, but otherwise, he was okay with it.  He actually seemed to enjoy the ride, and I enjoyed that it was easy to adjust the mirror to check on him, instead of having to rely only on his monitors to tell me what was happening.  His little duck is a wonderful aromatherapy microwavable toy that stays warm a long time.  Good thing, too, 'cause this kid wants nothing to do with hats and coats.  Who cares how cold it is anyway?  (I do!)





Today was also a red-letter day at the audiologist.  We have seen a slight difference, sometimes, as Aaron wears his hearing aids.  They certainly do something, but he also appears to hear a little without them.  But it's nothing like the difference I hoped we'd find.  He just doesn't react much to sounds.  For a while, I thought that was how he just was.   Then, at our last visit, we tried a bone conduction test.  It was obvious, quickly, that these were new sensations.  These noises were noises that he hadn't been exposed to before, at least not inside his head.

So today, the audiologist and I spoke of something called the BAHA.  It puts sound into the brain through the bones, bypassing the middle ear.  For adults and older kids, it's anchored into the skull, but for babies and small children, their bones aren't thick enough, so they use a band.  Anyway, we tried some more testing today, because to use them, the hearing has to be able to be corrected to a significant degree.  It was so fun!!  His hearing, with the BAHA, was almost in the normal range.  It was stressful to him, you could tell by watching his face.  When I took his hands in mine to help comfort him, it was even more obvious when he would hear things.  Even if his eyes only moved a little, every time there was a noise, his little hands tightened.  I can only imagine after having all sounds so muffled how strange it might be to be hearing.

The audiologist has a loaner aid that we'll trial next time we go back.  There is only one set, so we'll have to stay at the clinic, but we'll stay longer and walk around and see how he likes it.  If it all goes well, and we think it will, we'll start the approval process to get him one.  It will take a while, because it's that old supply and demand.  There is only one supplier, so they can demand almost whatever they want.  But hopefully, maybe by summer time, he'll be hearing much better.

I couldn't believe the results we were getting today.  His tests with the hearing aids that he has now were better than without, but still had a fairly significant hearing deficit.  This put him in the mild to moderate hearing loss, pretty darn near normal.  He got an A+ for today's visit.

Finally, around 8 p.m. each night, I turn into the mad scientist and our kitchen becomes my lab.  Since his return to health, I've started switching him over to the pediatric formula, but much slower.  Thank heavens (again) for algebra teachers.  Because he gets all his fluids through his feedings, it's important that we don't change that fluid balance.  And for nutritional reasons, we need to keep his calorie count the same, too.  But the old formula had 24 kcal (calories like we measure in food) per ounce.  The new formula is 30 kcal per ounce, so denser.  Because we need to switch slowly, for the first 3 days he got 75% of his calories from his old formula and 25% from his new.  The next three days is 50/50, and the last three days will be 75% new and 25% old.  If all goes well, on day ten, he'll be 100% on his new formula.

So the trick was to figure out how many calories total, and then the percentages necessary for each.  Then I have to add in the amount of water needed to bring each feeding up to the same amount of fluid he was getting before.  So here goes:  (N is neosure, old stuff.  C is compleat, new stuff.  H2O, well, yeah, water, and all units are milliliters)   Day 1-3:  75N+20C+6H2O day, 282N+84C+10H2O night.  Day 4-6: 50N+38C+12H2O day, 188N+168C+20H2O night.  Day 7-9: 25N+58C+17H2O day, 94N+252C+30H2O night.  Day 10: 75N+25H2O day, 330N+45H2O night.  Yeah, like I said, the mad scientist.  Thank heavens for dietitians who've given me the formulas to know how many calories he needs, and also for algebra teachers who make it possible to figure it out, even if doing so gives me more gray hairs than I had before.

Back when we first found out about Aaron's Trisomy 18, we also learned about the statistics.  How so many of these little one's lives are measured in minutes, hours, and days.  I remember telling my doctor that I felt that would not be the case with him.  I spoke with her about this just days after we found out and told her that I just really felt his life would be longer.  That it would be measured in weeks and months, rather than hours and days.  She also said she didn't know why, but she felt the same possibility.  Happy 19 Months, little miracle!  And many, many, many more.  We love you.

A Fruit Ninja or Future Doctor?

Fruit Ninja!

Aaron is doing so much better!  We're eight days out from the first yuck we saw, and he seems to be pretty much fully recovered.  Still some nose wiping, but that's about it.  So tomorrow, we'll start trying to change his formula again, but much slower this time.

Right now, he and David are in his room playing "fruit ninja" on the Kindle.  I'm not sure who is having more fun, Aaron and David, or me, listening to them. 

He also got his bath this morning.  While this Christmas really wasn't a good one for impulse buying, I saw this doctor onesie at Wal-mart and had to get it for him.  He's going to be a doctor when he grows up!  He seemed to think it was a good idea and smiled and wiggled a lot when I suggested it. 



The Doctor will see you now...

It seems I can either focus on work, or on Aaron's appointments.  Friday, Aaron's appointments won out.  I thought I had it all figured out.  I'd schedule appointments in the morning and work in the afternoon.  Unfortunately, I didn't factor in the emotional energy it takes to do this, so I ended up having to work on Saturday.  Oh, well.

What seems to be the problem?

For those who might wonder, this is what I was up to.  Aaron needs a follow-up brain MRI to check the extra fluid in and around his brain, along with an appointment with the neurosurgeon to discuss the findings.  We can't do both on the same day, because he has to have general anesthesia because of his ventilator.  They only do those on two days a week and his surgeon, yeah, you guessed it, only sees patients on two OTHER days in the week. 

Next, he needed a follow-up for his hearing with audiology, a follow-up with his ortho at Shriner's for his feet, and an appointment for his next Synergis shot to help protect him against RSV.  He gets those every month for five months during the winter. 

Of course, I can help you.  I know just the thing.

Then there was urology.  He has a fairly bad urinary reflux with a long, unpronounceable name.  The test for that is also a repeat test where they'll see if it has improved at all.  Honestly, the ones as bad as his rarely if ever go away without surgery, but that's still a ways down the road.  We're still in watch-and-wait mode right now.  Then it was the studies I'd really like to forget about.  He gets full abdominal ultrasounds every six months to check for tumors.  Yeah, you read that right.  Tumors.  Cancer.  It seems that kids with T18 are more prone to heptoblastoma (liver) and Wilms (kidney) cancers than other kids.  So we check often, and I guess I'm just grateful that it's a non-invasive, painless test.

Finally, resting peacefully.

So that was my Friday, and why I just didn't feel like working after all of that.  At least I didn't have to call pulmonology, the ENT, or his special needs ped.  We see all them on Wednesday at a coordinated care clinic.  And his next echo and cardio appointment is about ten days after that.  So I was on top of some things already and had them scheduled.  This kid needs his own secretary.  Keeping up with him is a full-time job all by itself.

Update

Okay, I realize that's an imaginative title, but the imagination seems to have taken a vacation.  I'm beginning to realize I may just have to go with the flow here.  I started a Christmas Day post, but haven't found the time (or energy?) to finish it, and wanted to do this chronologically.  If I do that, we may not have any more posts before summer.  Just kidding, but it still may take a while.  So maybe, it's Christmas in February. 

Anyway, here's what Aaron's up to. (Without pics, sorry.)

I got a Kindle Fire for Christmas (Thanks, Santa!).  I'm not quite sure how he managed to pull it off, but one of the reasons I really wanted it was for the apps I was hoping to use with him.  Well, I downloaded Fruit Ninja, and he was a hoot!  I was holding him and playing it, and soon he put his hand on mine as I was swiping.  Then he abandoned my hand and was just trying to swipe himself!  I was thrilled.  Love that he's trying to interact with things.

Also, the last time we used his stander, he really enjoyed playing with the toys.  Then when I got him out, he continued to try to bear weight on his legs.  In the past, sometimes, he's pushed a tiny bit, but his legs never get past a 90 degree angle at his knees.  This time, a few times, he stood all the way up!  This is HUGE!  And he's also trying to balance in a sitting position.  We showed his ped the last time we were in and he was thrilled, too.  This little boy, who wasn't "supposed" to live, is growing and developing, and most important, loving his life.

Now for the sadder part.  He's sick.  Yeah, again. He's been on a preemie formula since my milk supply ran out, many moons ago.  And even the breast milk was fortified to a higher calorie content with this formula.  But he is almost 19 months old, and he's needing a more diversified nutrition.  So it's time to switch to a pediatric formula.  I found one that I really think will work well for him. It's actually made with real food.  Now, I know a lot of moms make their own, but I don't think that will work well for us for a variety of reasons.  Not the least being that when he is in the hospital, they won't be blending up food for him, and I don't want his system to have to adapt to something new when he's already sick.  Which brings us back to this week.

On Sunday, we tried to make the switch.  He was happy, but his nose started running.  Then on Monday, it was worse, plus his trach and his eyes started in, too.  Along with the drool that is fairly constant, but decided it needed to step it up to keep up with the other orifices.  But he was still happy, and it was all clear stuff (TMI?)  So I decided I'd probably made the switch too fast and his body was rebelling.  We switched back to the preemie formula with the intent to get him back to baseline, and then try again, but at a much slower rate, mixing the two in different amounts for several days until he was completely changed over. 

Tuesday, though, was completely miserable.  Secretions got thicker, and he got sad.  Heart rate increased, oxygen needs increased, and I went on high alert.  He's doing a little better with his vitals today, but he's still miserable.  Plus, I'm hearing sniffs and sneezes from others around here, too.  So my guess is, we have a cold.  Good ol' common cold.  Which often puts us in the good ol' children's hospital.  So we're watching and hoping and praying that we get to stay home.  But the hospital bag, yeah, it's packed again. 

********************************

By the way, something to watch for.  I've been so blessed to find many articles and quotes that have given me strength, or explained my feelings in ways that I just can't.  Soon I'm going to put up a page on this blog where I can post things like that.  They're not my own writings, but hopefully others can find help from them as well.