Tuesday, April 30, 2013

Eleven Months

Quinn recently turned 11 months.  Eleven months!!!  

With the boys I remember thinking wow, that really went fast - how exciting!!

With Quinn I keep thinking wow, that really went fast - this sucks!

happy birthday kisses from Colin <3

But not to Quinn.  Nope - in true Quinn fashion, she did up her 11 month birthday in style.  We celebrated with not one, not two, but three different bashes!

After her regular Feeding Therapy session, we packed up finger sandwiches, a box of tea and some special decorations courtesy of andreap|designs and flitted off to Quinn's great-great aunt Shirley and great-great uncle Murray's house so she may host her very first Tea Party.

(It's right - I counted twice to make sure I had the correct number of 'greats'!!)

We were also joined by GiGi (great-grandma Rae) and Grandma.  We had sandwiches of cucumber & hummus, tuna & arugula, chicken salad & craisins, cream cheese & jelly...  We had yummy tea... We had a delicious chocolate cake, provided by our venue hosts - aunt Shirley and uncle Murray.  And a lovely time was had by all - which is just about the highest praise for a tea party, of course!  

super cute banner made by andreap|designs
the table is set
dessert.  yum!!
Quinn always has the perfect dress for the occasion!

having so much fun!!

After a (not-so) quick exchange of car seats, Grandma was off to pick up Colin & Reid at school and Quinn and I were headed to aunt Michele and uncle Ricky's house for a super special ceremony.  

Quinn became ...

...wait for it...

...a Brownie!!!!  I always wanted to be a Brownie, but they weren't doing it in our area back then for some reason (or so my mom says lol).  A friend of my sister-in-law's contacted her to see if we would be interested and we (I) definitely were (was).  The original plan was to have Quinn come to a regularly scheduled Brownie meeting back in the beginning of April.  But then that pesky flu cropped up, and Quinn's hospital stay, and everything was put on hold.  I was so glad to have a second shot, and this one probably worked out for the better.  Six adorable little Brownies were waiting with their moms at my brother and sister-in-law's house for us to indoctrinate Quinn into the age-old tradition of the Girl Scouts.  She looked adorable, and all these little girls and their moms did was so touching.  They even went to Build a Bear together to create a special Girl Scout bear just for Quinn <3

she even wore the beenie :)
with the whole troop, plus cousin Katie and aunt Michele
the world's cutest Brownie!!

But that was not all.  Oh no - that was not all.

The Brownie meeting was set up to coincide with our trip out to the island for Quinn's first concert!!  My very talented niece Katie was competing in an American Idol-type competition at her high school and she asked Quinn to come see her sing for her very first concert.  (I was a mere add on.  It's ok - I'm used to being her chauffeur; it gets me into some very cool places!)

Katie.was.AWESOME!!!  There were 14 students and only 7 made it into the second round - she was one of them :)  Only three advanced to the finals and unfortunately that didn't include Katie (though truth be told, I think she was gypped - but that's neither here nor there, I suppose haha).  But it was so much fun and apparently the entire high school had been apprised of Quinn's impending presence.  At intermission we were surrounded by about 20+ kids - seriously.  Maybe more.  They kept swapping - someone would leave and a new one would pop in their place.  We also got to meet my niece's (in)famous best friend and my nephew's adorable girlfriend - it was really a fun, fun day and a great way to spend an 11(mon)th birthday :)

screenshot of the video of Katie singing Love the Way You Lie

What ensued the following two weeks was not so much.  That night, Quinn was up all night long with a very high fever.  I took her to the pediatrician the next day to get her checked out.  She had a double ear infection, which accounted for the fever.  But, as with every doctor's appointment Quinn has, her lungs were checked.  And the dreaded news was delivered.

We had a crackle.

It was localized to the upper left lobe. The ped even gave me the stethoscope and let me hear where it was, and where it wasn't.

There was no question, even to me.

This is quite literally some of the worst news an NPA child can hear.  And to hear it now, at 11 months, is just awful.  

So home we went, Augmentin in hand, all forthcoming plans cancelled (DC trip, NYPD Harbor Seals boat ride, playdates - the works).  Quinn, for better or worse, did not seem to register the additional stress the pneumonia was putting on her little tiny body.  Once the ear discomfort was cleared up, she was basically back to her old self.  Which is great.  

And not so great.  Her body is so ravaged that pneumonia - pneu-mon-IA - isn't much different from how she normally feels.  That's just a bunch of bullshit right there.

I am happy to report that the Augmentin has seemed to work. Her lungs were clear when we returned to the doctor last week, which is fantastic news.  But we know.  We know that every thing that Quinn goes through takes a little more out of her.  And at a whopping 14lbs, 8oz (approximately 20-25% of which is now estimated to be her abdominal mass), she doesn't have much left in reserve.  

But we're getting what we wanted - within our current context.  From day 1 both Brett and I made our hopes and wishes clear.  We would rather see her physically frail but mentally sound right up until the end.  And we have it - Quinn is so very much a one year old.  And for that we are very grateful.  

Silver linings, right?


Thursday, April 11, 2013

Frick y Frack

Today is Trek Day!  

On April 11, 2011 Trek Atlas Ingram was born in his driveway to Chelsea and Jarrett, and big brothers Peyton and Conner.  An incredible baby that led his family to take a most amazing journey, Trek passed away from Niemann-Pick Type A in Thailand on June 21, 2012.  Today would have been his second birthday.

beautiful Trek on his first birthday
(photo from Our Sonny Life.com)

In honor of his birthday, Trek's mama Chelsea asked her friends and supporters to do something to celebrate their children today.  

The boys were informed of Trek Day yesterday.  Colin - ever inquisitive - did ask what it was.  I told him that Trek was an amazingly special little boy who is no longer with us, and we are to celebrate his life on Trek Day.  That (thankfully!) was enough of a response.  

Today, they each had an oreo with breakfast.  I picked them up about 45 minutes early from school so we could go get frozen yogurt.  Then they had their choice of dinner (is there really ever a choice when you're 3 and 5?  I think not; McDonald's it was).  We came home to eat, had an early bath and then did Mommy Night Movie Night (The Brave Little Toaster to the Rescue was on order tonight).  And finally we ended the day with an extra story - "because it's a special day, right mommy?".

fro-yo after school.  good thing this 'celebrating' isn't all the time -
their choices of celebrating adds an automatic 10lbs on mommy!

We had so much fun - they each even said "Happy Trek Day!" when they were going to sleep <3

Then I got to realizing that in trying to protect their privacy - whatever it may be at this age - I haven't really celebrated them much on the blog.  

I haven't discussed Colin's incredible individualistic attitude - how he does what he likes and doesn't seem to have a care in the world what "everyone else is doing". (I sooooo hope it stays this way!!) I haven't talked much about Reid's ridiculous comedic timing, apparent from the time he was speaking in full sentences at 18 months.

this would definitely qualify as "individual", I think

the best description of Reid I've heard is
"the kid who will burn your house down,
but smile at you while he's doing it"

Not really a word about the adoration they have for one another, for our family, or for their little sister.  About how unbelievably selfless they are when it comes to Quinn.  Quinn's special needs.  Quinn's bajillion presents that show up at our house.  Quinn taking mommy and daddy away on an all-too-often basis.

They simply accept it as it is and celebrate her as much as we do.  Colin all but accosted some of the neighbor kids to tell them that his sister was eating food.  REAL food.  (They were suitably unimpressed.)

I've mentioned only in passing how their inane questions, their ridiculous (age-appropriate) tantrums, their knack for knowing just quite what we don't have time for - and then doing that very thing.  How all of that is really the only reason we're still standing.  The only reason we're not in that ditch we (I?) ever so often fantasize about, the corner of that couch in fetal position. 

They make navigating these circumstances infinitely harder. 

Surviving these circumstances would be entirely impossible without them.

They are best friends with each other, and best friends with us.  Colin is the Original Big Brother - he watches out for Reid and Quinn in the sweet way only a five year old can.  He 'explains' the world to Reid, and makes sure no small toys enter Quinn's universe for fear of choking.  Reid has taken his dual role as Big and Little brother very seriously.  He is the kid who bursts into tears as he enters the kitchen as I'm taking Quinn out of the bath because he just spent the past 10 minutes (while she was in the bath) gathering up all of his Umi Zoomi bath toys so Quinny can play with them.  

seen in the monitor while in the kitchen making lunch.
yeah - that's Reid.  IN her crib haha

I worry about them in every way every mother does.  How will they fare when they get to 'real' school? Are the other kids nice to them?  Will he be able to keep up with the other kids in math/reading/tee ball?

And I worry about them in all the ways no mother should.  How will they fare when Quinn is nearing the end at home?  Is someone else going to accidentally say something to tip them off to our future?  Will they be able to ever get over this?

Will they remember her?

But today was not a day for worry, it was a day for love.  And love we did.  Lots of hugs and kisses (and lots of tackles for group hugs and kisses :) ).

Thank you Ingrams - once again you have helped us remember to step back and Embrace Life.

Happy Trek Day!

that's Colin under there
(excuse me, Super-Spider-Colin)

just another Target trip

Wednesday, April 3, 2013

There's No I in Crazy

Another weekend, another hospital trip for Quinn.

Following the week from hell in our house - very high fevers in all three kids, a few pediatrician visits and some antibiotics for Quinn to resolve an ear infection - on Easter Sunday morning Quinn had 2 bloody stools.  Our horrid scare from early February too fresh in our minds, Brett and I shuttled the boys off to my mom's to have some semblance of an Easter and ran Quinn to the ER.  While there, her oxygen levels were low - upper 80's, low 90's - so we began blow-by oxygen.  She mainly self-corrected but the oxygen gave her a quick pick-me-up so we kept administering it as necessary.  

Against our better judgment, and for a lack of a medical professional to back us up, we allowed them to admit Quinn for observation.  Quinn was incredibly congested, leading her to desat (lower oxygen numbers).  Although at home we handle her congestion with Benadryl to dry her out, a humidifier to keep her wet and a few pounds on the back to keep her loose the hospital took a far more aggressive approach and put her on oxygen full-time.  

ever resourceful, Quinn turned the o2 tube into a teether

We were insistent that Quinn be released yesterday, after our agreed-to terms of a 24-hour observation.  And we are adults and her parents, and could have acted of our own free will.  But the coercion of the team of physicians effectively scaring the crap out of us led to a decision we knew was wrong at the time, and yet we made it anyway.  We let her stay another night.

At 11:00 last night, a swab - done more on protocol than on hunch in the ER - came back.  Quinn has the flu.  Has had the flu for a week now.  As apparently did Colin.  And actually, probably Reid too (we didn't bring him in to the doctor as his symptoms appeared less severe than the others and we had been told it was just a virus).  

Kind of a big miss.

our life last week.  some spring break!

she does 'pathetic' really well :(

Even outside of this pretty crappy, definitely avoidable situation with the flu, the hospital stay this time was incredibly stressful.  We were made to feel as though we were craaaaazy.  Crazy to want to take a less aggressive approach to the oxygen levels (i.e. treat the source - the congestion, rather than the symptom - the desat-ing).  Crazy to say we had a palliative care team appointment lined up for Tuesday and that was the most important thing to us.  Crazy to say we want to take her home, the hospital really is no place for a sick baby to get well.

Crazy to continually insist that Quinn's comfort and happiness are paramount to whatever the standard protocol is in situations like these.  In other words, crazy to concentrate on Palliative care.

Though it is sometimes difficult to separate ourselves and objectively view the situation from the perspective of these physicians, we do get it.  

We get that they are deathly afraid of Quinn. That they truly are uncomfortable treating a child entirely in the present tense and not being so concerned with 'later'.  That the overarching theme in Quinn's care in this setting is "Not on my watch!"  

All they are able to see is a terminally ill child.  Not a ten month old with some pretty severe congestion who's really uncomfortable and could use a hand in correcting the source.

Though we barely made it out in time, Quinn was released late Tuesday morning.  I dropped her at home with her newly acquired oxygen paraphernalia to 6 (lol - SIX!!!) people to take care of her at home (Nanny, Grandma, aunt Mary and cousins Megan, Kristin and Erin - with two cameo appearances by daddy) while I made it into the city just four minutes late for the Pall Care Team meeting.

Ever since we decided not to pursue the stem cell transplant we have been ambling about, trying to figure out the best way to handle Quinn's care.  It all seemed so very abstract and early, so there was no real rush - until her crash 2 months ago.  We really started the ball rolling after that, but what we found is there truly is a lack of pediatric palliative care programs in our area.  Like a puppy chasing its tail, we have been running in circles sent from one doctor to another only to be told the best person to speak to is the person we already met with two people before.

Programs are either on hiatus due to lack of demand, or in the very early planning stages as they hadn't been established before.  What we've gleaned from it is that like everything else, Quinn's situation - even in the world of very sick children - is unique and rare.  Most pediatric illnesses go from curative care to hospice care.  There is a way to fight - and when there's a fight to be had, especially when it involves a child, fight you do.  There is even a whole new scope of care - Pediatric Concurrent Care, which allows children to receive Palliative and Hospice care while still pursuing treatment (another awesome advance made possible by the Affordable Health Care Act ... just sayin'!).  Which is great - soooo great!!  But different - soooo different - from Quinn.  It is very hard for people to grasp that there are times when there really is nothing.to.do.

Today, however, I did meet a team of incredible women who focus on just that.  They work with many groups, including the metabolic disorders team (so other children like Quinn - with NPA as well as illnesses like Tay Sachs, Hurler's and PKU).  The team consisted of a physician, a nurse, a social worker, a child life specialist and a chaplain.  And they all wanted to help Quinn.  

All of them.  A whole TEAM of people!!!  

They 'got' our goals.  They asked me for our ideal scenario (within the current context, of course!).  And they said they will be there for us to make sure it happens.

A team of people, assuring me we are NOT crazy.  And that Quinn will live out her life as we wish it to happen.  

A good friend of mine from high school is now a physician, and has reached out a number of times.  Of course, it's about Quinn - how she's doing, how we're doing.  But it's also been in a different vein.  It has been to thank us for opening people's minds to discussions about end of life care.  About how to live out whatever remaining time we have.  That it is NOT a foregone conclusion that you must act within the standard protocol of fight fight fight until the very end before comfort can be considered the primary goal.  

I thanked her for her kind words - she's so intelligent and such a good person so any praise is really meaningful - but I didn't entirely get what she was talking about until these past couple of days.  When she said no one talks about it - she literally meant NO.ONE.  Not even physicians.

So all of you wonderful souls who keep asking "what can we do, I'd like to help" can start here.  Think about yourself.  Think about the fact that not one of us is going to live forever.  And then think about how you would envision living out the remaining time, what your priorities are, what is most important to you.  

And then talk.  Have a dialogue with yourself.  With your family and loved ones.  With your priest, rabbi, counselor.  Talk about what you may want and ask them to think about what they may want, understanding it is ever evolving but ever important.

Do it in honor of Quinn.  That is What You Can Do to Help.

an amazingly peaceful message and image
captured by an incredible woman and friend.
thank you Chelsea - this really gave me peace of mind when I needed it most