Marauder’s Map

A few months ago, Mike and I went to dinner at the neighborhood brewery with Luella (if you live in Bellingham, you’ll understand that’s not an odd occurrence).  A father and his adult son stopped us on our way in to inquire about Luella, who still had her nasal feeding tube.   After a few minutes of chatting, the father shared that his son had also had health problems as a baby and was soon afterwards diagnosed with cerebral palsy.

“And now look,” his son said.  “I’m out drinking beer!”

It was hilarious, unexpected, and, even upon recall, hugely uplifting.

Luella has a new feeding tube now.  This one isn’t taped to her face, but is hidden underneath her clothes.  With her lazy eye also having been fixed, her health issues are much less visible.

The general consensus was that this would be good: if people don’t KNOW Luella has medical and developmental challenges, we won’t have to talk about it.

But you know what?  Sometimes I miss it.  

We rarely have interactions anymore like the one at the brewery, where we discover a hidden bond with another family.  And anyway, I never really thought that Luella having a visible disability was a bad thing; I’m proud of who she is and I’m pretty okay with the “HEY INTERNETS, HERE WE ARE, NOTHING TO HIDE,” way of doing things.

Bath time

Now, we do a lot of…pretending.

Well-intending servers automatically set out a highchair for her at restaurants (she can’t sit up on her own) and give her sippy cups of water (she doesn’t eat or drink orally nor does she use her arms/hands much).  People ask if she’s starting to crawl/walk/talk (no/no/not really) and if she made it through the winter without getting sick  (HAHAHAHA).

Generally speaking, my annoyance is at the eye-roll level, although I reserve the right to be really ticked off.  Because when I look at the world through my new Luella lens, what I see is a lack of acknowledgement that people with disabilities exist.  That disability is the exception, not part of the “norm”.

Luella Pepper Sisters

In all honesty, I’m not pretending that much anymore.  I’m quite fine telling people, “No, she isn’t crawling, she has developmental delays,” and leaving it there.  I’m not intending to make anyone feel foolish, although that is probably sometimes the result.

In 20 years, maybe Luella and I will be able to go out for a beer together. Maybe not.

What I do know is that I’m not going to feel obligated to hide in a cloak of invisibility.

We’re proud.  We’re different.  We’re good.

Health Update: Luella is in a real sweet spot right now! She loves music, snuggles, and listening to us talk to her.  She give enormous smiles when she hears certain jokes and songs or sees her favorite toys.  She’s learning to make new noises and has recently discovered that her voice can be both soft and LOUD.  

Despite this blog post, we are pleased with the surgeries.  The new feeding tube is much easier to manage and has reduced her reflux.  Her vision has improved, although she may still be prescribed glasses soon.  She is weaning off one of her seizure medications that isn’t prescribed to children beyond 1 year of age, so we are keeping an extra eye on her for any changes but all is well so far!

 

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For Max

A year or so ago, we had a large stump in our back yard that we wanted removed.

“Kelly is coming up to visit us this week,” Mike said.  “He can get it out for us!”

I knew it was true; on more than one occasion, I had seen our friend Kelly use his truck to successfully pull things out of the ground.  After all, Kelly is the type of person who gets a glimmer in his eye when a piece of electronic equipment needs to be fixed, a fire needs to be started, or a couch just needs to be blown up.

With this in mind, I implored Mike to call a tree removal service.

“No,” Mike firmly told me.  “Kelly can do it.”

And he did.

Knowing this, you can now maybe imagine how glorious life was for Kelly and Katie Keeton’s three-year-old son, Max.  A grand adventure of tools, construction sites, rain boots, and car parts.  A mommy and daddy who valued silliness, play, and surrounding their kids with family, friends, and faith.

Meeting Max for the first time.

Meeting Max for the first time.

Boys night.

Boys night.

So, it is with monumental, unfathomable sadness that we are now grieving the loss of Max, who passed away earlier this week.  He was with us for only three years…but what a three years he had. Both sides of grandparents to dote on him, little and big friends to play with, and some amazing parents who helped him get dirty, explore the world, and learn to play on his dad’s pinball machines.

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4th of July, 2012

We last saw Max on New Year’s Eve, which we spent with the Keeton’s on Whidbey Island. Max gleefully played with his grandparents all evening, running through the house in his cozy pajamas.  The next morning, he agreed to dress up in clothes a friend had brought back from Thailand for he, his sister Molly, and Luella.  He sat sweetly for pictures during the ensuing photo frenzy, giving Molly a little kiss on the head as she sat beside him.

Couch

We’re going to be missing our little friend at every holiday and get-together, and, well, all the time in between.

And to the one and only Max:  thanks for letting us be part of your life, pal.  We’ll keep on loving you, your sister, and your strong, big-hearted parents.  And if he’s lucky, we’ll probably even let your dad pull more stumps out of our yard.

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Bittersweet

Each year, we rearrange all of our living room furniture, borrow chairs and tables from neighbors (ahem, and workplaces), and host a Passover seder for the masses.  But a few months ago, I accepted that with our now-limited time, we would have to axe a bunch of people off of our guest list and host a more appropriately sized event.  One that doesn’t involve sending someone to the store 20 minutes before guests arrive for an array of forgotten items, including beets, flowers, and compostable forks.

Of course, this did not happen.

I love both a challenge and a packed house, so once again, our couches were shoved into corners and we were busting at the seams with 13 adults and 6 kids for a sit-down dinner.  A delightful Barry Louis Polisar Haggadah in hand, we told the story of the Jews’ exodus from Egypt through our unintelligible Hebrew with a healthy dose of shrieking children in the next room.

As we prepared to do a blessing for the bitter herbs, symbolized by haroset, a mixture of fruits, nuts, and spices, we read aloud:

“We acknowledge that life is bittersweet.”

I nodded my head at the trueness of the statement, realizing that bittersweet was the word I’ve been missing for the last 9.5 months.  It’s a succinct description of some wonderfully sweet moments with Luella that have been tinged with darker undertones.

And bittersweet is the word that describes my present feelings as we prepare for one of Luella’s more momentous experiences.  On Monday, May 12, Luella will have two surgeries at Seattle Children’s Hospital.

The glamorous life of waiting room families

About the Surgeries/Jenn’s Mostly Inaccurate Medical Explanations:

1.  Gastric Tube/G-Tube Surgery.  As Luella gets older and more mobile, it’s (duh) becoming an issue to have a feeding tube always hanging out of her nose.  She rolls on top of it, gets it stuck in her hands, and has clumsy parents who have accidentally pulled it out on a number of occasions.  The tape that keeps it stuck to her face causes rashes and putting new feeding tubes in is unpleasant for all involved.  While her feeding therapy is going well, it will likely be a long time before she is able to consume her food solely by mouth.  The g-tube will be a port directly into her stomach that will be attached to a cord only when she eats.

2.  Lazy Eye Surgery.  Both of Luella’s eyes wander in and up, which is a vision problem as well as a cosmetic issue.  This surgery will address “amblyopia”,  the delightful technical term for the more judgey “lazy eye”.  This surgery will help to realign the eyes, although it’s not guaranteed to be successful.

Gown

Waiting for a gastrointestinal study

 

GI Study 2

Live x-rays of digestive system

In terms of surgeries, we’re told these are relatively minor, although it is slightly more dangerous to undergo anesthesia if you’ve had seizures, as Luella has.  I’m really looking forward to having her nasal feeding tube out and some of her vision issues fixed, but I’m also a little like, “HELLO THIS IS THE WORST.”

The next few weeks, like many weeks prior, will probably be a lot like my Passover chocolate cake: bittersweet.  That being said, my guests didn’t have any complaints about it.  In fact, I watched a friend polish off the leftovers, running her finger along the bottom of the pan to savor every last, deliciously bittersweet morsel.

Couch

All sweet.

Circumstance and Pomp

When I was four-years-old, I participated in my first graduation ceremony, marking the end of preschool.  An overturned wooden rowboat became an archway of stairs, which my schoolmates and I proudly teetered over to signify our crossing into our elementary school days.

My second graduation ceremony was far more monumental, as it marked both my graduation from 6th grade AND my debut vocal jazz performance.  To spice up the event, a performance section had been added to the traditional graduation program, ensuring ample embarrassing footage to follow us all into adulthood.

My friend Tessa and I stood backstage in matching pantstuits and watched as group after group of girls took the stage and sang breathy renditions of Disney songs.  We were last in the program and closed the show with our perfectly-harmonized rendition of the entirely age-inappropriate jazz tune “Angel Eyes”.  Let the record show that while the sultry lyrics were a bit, um, mature, for the group, we absolutely rocked the house (or at least as much as one can rock a 6th grade tea by singing jazz standards).

Luella’s first graduation was decidedly more low-key but far weightier: 256 days after she was born, Luella graduated out of the Pulmonary Department at Seattle Children’s Hospital.  They took a last listen to her lungs and assured me they were completely recovered from the meconium aspiration.  Barring  pneumonia, they decided they would no longer need to see her.

We’re thrilled, of course.  Initial x-rays taken in the days after she was born showed her tiny lungs almost completely covered in tar-like meconium and even after we were sent home, she was tethered to her oxygen tank 24 hours a day.  This graduation has been her lifetime in the making and it’s pretty unbelievable it happened.

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But graduating from the Pulmonary Department didn’t end with a symbolic walk across a boat.  It ended with profuse thank you’s followed by a handshake, and that was that.  Without fanfare, they declared her lungs healed.  In mere minutes, the health issue we had painstakingly tracked for months was just…gone.

I’m all about celebrating victories and this feels like a big one.  Trouble is, babycenter.com doesn’t advise parents how to prepare for your baby’s first medical department graduation.  She can’t eat cake or walk across a stage.  And while I toyed with the idea of making her a baby graduation cap, the tassel is probably a choking hazard.

So instead, we’ll celebrate in our own way.  Tonight, I’ll hold Luella in my arms, look into her sleepy blue eyes, and croon some Ella Fitzgerald in her ear.  Because even without a pistachio-green pantstuit, I still think it’s a pretty great way to graduate.

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Health Update: Luella met with Rehabilitative Medicine earlier this week to check on the stiffness in her arms and legs.  While they agreed she is stiff, they were pleased with her progress and would like to give her more time to develop.  Next week, we will meet with General Surgery to have a consultation for moving forward with getting her a surgically implanted feeding tube. We will also be meeting with Nephrology to get a wean plan for her blood pressure medication, Opthalmology to retest her eyesight, and all of our regular therapies.

Do-Re-Mi

A few days ago, I took a break from work to eat lunch alone while I reviewed paperwork (ahem, checked my Facebook) and found myself crowded next to a group of gal pals dining with a baby.  The baby looked about 4 months old and was entertained the entire meal by a compostable to-go container, which he put in his mouth, passed between his hands, and wildly shook in front of him.  I learned two things from watching this:

1.  Babies are interested in the same toys as my dogs.

2.  Luella is far behind in the use of her hands and arms.

We’ve always known that Luella could have challenges with her limbs as a result of her brain injury.  After she was born, doctors would come in everyday, move her arms and legs around, and tell us with a frown, “Seems like she has some issues with her tone.” When the doctor was out of earshot, we would tell Luella, “I DON’T LIKE YOUR TONE,” because, you know, HILARIOUS.

It’s pretty obvious now that the muscle tone in her hands and arms is causing issues in their use.  She has ‘high muscle tone’, leaving her arms very stiff and her hands almost always in fists.  This stiffness also causes her whole upper body to become rigid when she startles which, as another result of the brain injury, she does often.

Luella's Hands

Working on Luella’s muscle tone is one of many developmental activities we do with her each day.  In addition to regularly stretching and massaging her arms and hands, we are also doing feeding therapy, core strengthening on an exercise ball, tummy time, sitting practice, two hours of wearing an eye patch, and generally showing her how to do things that aren’t coming naturally.

Came in like a bouncy ball...

With help, Luella’s use of her hands and arms will likely continue to improve.  Even so, it’s safe to say that this may be one of the areas she needs some extra assistance through more therapy, injections, or assistive devices.

In the meantime, the dogs will be thrilled to get all the to-go containers to themselves.

 

Health Update: Luella’s latest EEG showed her infantile spasms are still gone! On the feeding tube front, Luella’s oral therapy is moving slowly so we will probably be having a feeding tube surgically implanted into her stomach while she continues to learn.  During that surgery, she may also have vision-corrective surgery so that she doesn’t need to go under anesthesia twice.  And maybe a nose job, just to make a day of it.

Luella in Chair

The club

Nearly two weeks ago, with Luella strapped to my Seahawks jersey-clad chest, I frantically searched an overcrowded restaurant for a spot where we could see the NFC Championship game.  We’d already found seats in the TV annex, but they were somewhat removed from The Fun and I really, really hate to miss The Fun.

While scoping out our options, a dude appeared at my side and began taking sidelong glances at Luella.  “That’s some red hair!” he exclaimed.  Half-listening, I agreed.

Big Red in the bath

Big Red in the bath

“So, what’s going on with her?” he asks, gesturing to her feeding tube.

 I’m instantly irritated.

How could he think it appropriate to ask a stranger about their child’s health?  Why, even on the slightest chance I would want to disclose this information to a random person, would he think I’d do so with with a mid-afternoon whiskey in hand, surrounded by day-drunk football fans?

“She’s working on some things,” I cooly tell him, my usual standoffish response.

He pauses, then quietly says,”One of my kids had problems when she was born.  She stayed in the NICU for two months.  It was really scary.  But she’s a healthy four-year-old now.”  He gestures to an adorable blonde girl nearby.

I want to ask if she was at Seattle Children’s Hospital.  I want to know what the birth was like.  I want to know if she has any developmental delays.  I want give him a high-five, introduce him to Mike, and make he and his wife be our new best friends.

I don’t see a lot of other babies that look like ours.  We get stares when we bring out a stethoscope in public and are on the receiving end of a lot of “pity-face”.  But we’re not alone.  We’re part of a secret society of freaked-out parents who are dealing with some really big life questions in addition to all of the regular ones (“Will I be able to eat these chicken wings while holding the baby?” No. It is patently impossible.)

I nod in sympathy and tell him I’m glad his daughter is okay.  We murmur a few “Life, huh”/”You never do know” sentiments back and forth and trail off, until he gives Luella a final  glance and turns to leave, saying,

“Well then.  Go Hawks, right?”

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Looking up…

Health update: The spasms are still gone! Luella is now working on feeding therapy to try and begin taking bottles again after a nasty bout of steroid-induced reflux.  She is doing well but it is a long process.  We also found that she has poor vision in right eye, which wanders a bit as well.  She wears an eyepatch 2-4 hours a day to try to strengthen it.  We may be making some bigger decisions involving minor surgeries on the feeding tube and vision front in the near future.  As always, Luella is taking it all in stride.

Testing, 1, 2, 3…

Since leaving Seattle Children’s Hospital in August after Luella’s initial stay, we have returned 13 times for various appointments and tests.  It’s a 1.5-hour drive I don’t mind doing because of the unrivaled care and support we receive there (and I also like practicing songs for karaoke in the privacy of my car).

Every person we have interacted with, from the cleaning crew to the head of the Pulmonary Department, has been respectful, empowering, and compassionate.  Parking is easy to find, we’re greeted and directed to the appropriate place as soon as we walk in the door, appointments run on-time, and given the level of detail our specialists remember about Luella between appointments, I am almost convinced that she is their only patient.  And no big deal, but their doctors and nurses literally saved her life.

So yeah, we’re kind of SCH superfans.

With that, here are some pictures from our last two-day stint of appointments.  And no, we have not yet run into Russell Wilson (although not for a lack of trying/hoping/fantasizing).

CT Scan

Doctors were concerned that because Luella’s brain is growing slowly, the plates in her head didn’t spread fast enough and had fused together. This CT scan showed that this likely did not happen and it’s simply a cosmetic issue!

Preparing for the EEG

Another hour-long EEG to ensure that the abnormal brain waves associated with infantile spasms are still gone (and they are!).

Waking up with Mama after the EEG is over.

Waking up with Mama after the EEG is over.

"Never give up."

“Never givup.”

Grandma and Grandpa visiting and helping out for the day.

When Mike can’t come, Grandma and Grandpa drive over and help us out.

Luella and Mommy

Just some gratuitous cuteness.

Just some gratuitous cuteness.

Up next for Luella: feeding therapy, ophthalmology, and neuro-development appointments this month.  She’s also looking forward to the Seahawks winning the NFC championship and spending a long weekend at Mt. Baker!

Nautical milestones

When we left Seattle Children’s Hospital with Luella four months ago, we were warned  against comparing Luella’s development to typical baby milestone charts.  The doctors stressed that Luella would develop at her own pace and expecting her to reach milestones at the same rate as babies without brain injuries would be setting ourselves up for disappointment.

We’ve heeded their advice, (mostly) letting go of expectations and allowing “Luella to do Luella”.  Even so, I couldn’t help but notice when she reached three-months-old and she still wasn’t smiling.  I did my best to elicit grins: I sang in a nauseating falsetto, I peeked, I contorted my face, I contorted/peeked/falsettoed and then falsettoed/contorted/peeked…and nothing.  Despite my best efforts, she continued to stare back at me solemnly.

Seriously cute.

Seriously cute.

She passed four-months-old with nary a grin and when the infantile spasms set in, she was not only still unsmiling, she was nearly unresponsive.

And then, around Thanksgiving, it happened.  With steroids holding the spasms at bay, she came out of her fog and made it to the happiest milestone of them all: big, fat smiles.

SmilingThe smiles are coming regularly now, along with epic bouts of cooing.  These milestones are coming further apart than other babies, but you guys? They are so worth the wait.

Big, fat smiles!

Big, fat smiles!

(Health Update: Luella’s EEG from last week was all clear of infantile spasms, so we are continuing to wean her off of the steroids!  Hooray!  In January, we will have yet another EEG to see if the spasms are still eradicated, as well as visits with several other specialists.)

A crash course in Luella’s health

(Birth trauma trigger warning)

Baby Luella came into the world on one wild ride.

Quite literally: just hours after being born by a planned home birth turned emergency c-section, she was airlifted with Mike to Seattle Children’s Hospital. Luella had severe meconium aspiration (i.e. she pooped in utero and swallowed it) and wasn’t breathing for several minutes after birth.  Understandably, this caused a whole host of issues with her lungs and brain. She stayed for three weeks in the NICU and another three weeks in a regular inpatient unit. 45 days after she was born, she was finally able to come home and start the life we imagined, albeit with a few additional accessories.  Luella had at-home, full-time oxygen for a month and, now at five-months-old, still has a feeding tube that goes up her nose and into her stomach.

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Two days old.

Luella’s lungs are largely recovered after being filled with sticky, tar-like meconium although we still have to be very careful to prevent her from getting sick and stressing out her system.  She no longer wears oxygen during the day; you never appreciate having an untethered child until you can’t carry your baby more than 30 feet from their oxygen tank!

Unlike her lungs, the progress of Luella’s brain recovery has been less linear.  She had a seizure after birth and an MRI soon after showed that she has injury to about 15% of her brain.  This injury means Luella has had to learn many things that come naturally to most other babies.  Most notably, she has had difficulty learning how to swallow effectively and has a feeding tube for the majority of her food.  While she now takes some bottles, we have to thicken her milk while she figures out how to manage the mechanics of her swallow.  Luella also has other developmental delays and will likely continue to face developmental challenges as she gets older.

Luella at Five MonthsFour months after she was born, Luella began exhibiting some odd, jerking behaviors.  Neurologists diagnosed her with infantile spasms, a rare  and serious disorder that completely stunts her development until the disorder is under control.  Luella began taking a very high dose of steroids to try to eradicate the abnormal brain waves associated with the disorder.  Her last EEG (brain wave test) showed the abnormal brain waves were resolved, but we recently began seeing some suspicious activity that may be spasms or other seizures.  We will continue trying to wean her off the steroids if her upcoming EEG still looks okay.

These days, Mike and I double as parents and psuedo-medical professionals.  We administer seven daily medications, put down feeding tubes, get weekly blood pressure checks, and talk to doctors and pharmacists more than we talk to our friends.  We also do a lot of “normal” parent things, like change a million diapers, go on walks, take snuggly naps, and take so many pictures that my phone constantly warns me that the “memory is almost full”.

All this to say that answering the kind question,”How’s Luella?” is complicated and different every day.

But different can be good, right?

On Blanket