Things are looking up!

When so much time has passed since the last post, it seems nearly impossible to craft a summary that captures all the intricacies of this experience.  Which is one of the reasons why it's taken me this long to write another post!  Not a day goes by that I don't think of a new post to write, the catchy and ironic title hitting me before the story itself.  By the end of each day, when the kids are finally asleep, I am a shell of a human being.  I can hardly muster the energy to open a book or press the buttons on the remote, let alone write something meaningful about our daily life over here.  This is not because Ayla is feeling poorly.  In fact, she is feeling quite awesome these days.  I think it's because I finally have the chance to relax, reflect, clean, sleep, and let my body feel how exhausting it is just to live an almost-normalish life. 

September was the last time Ayla was in the hospital, and it was for just a day to rehydrate and check her blood for signs of a flare.  We were in SoCal for a week and perhaps a virus or some hardcore teething pushed her over the edge, causing her to vomit for days and preventing us all from sleeping any reasonable amount of time.  Blood tests did not indicate a flare so we just got her IV fluids, gave her a medicine that would prevent nausea and vomiting, slowed down her NG feeds, and kept her on Tylenol around the clock until we got her home.  She recovered nicely and has felt pretty well ever since.  Two months of stability has been AMAZING. 



Jonah loves to wear the pump backpack while pushing Ayla in the toy stroller!



Trampoline giggles.  If only AquaNet was strong enough to hold this style!



Over the last few months we have been blessed beyond imagination.  One of our most treasured friends, Jen, has been living with us and helping us with...well...everything.  The love that has developed between her and the kids is magical.  She plays with them, takes them on adventures, dresses them, feeds them, cleans up after them, does their laundry, and loves them as they were her own.  To top it off, she does all of that for me and Steve too (except she doesn't dress us because that would be wierd)!  Jen has never failed to make me laugh when it counts or offer me sympathy and understanding when I need it most.  Because of Jen, I have been able to go on several long-awaited dates with my fabulous husband, and I've been able to pursue resources that have turned our lives around.  Jen is moving out in two days, if we haven't kidnapped her before then.  I am excited for her as her new life of travel and mystery unfolds before her, but I am doing a significant amount of grieving as well.  She has been present for, and has a lot to do with, our transition from a state of desperation to a place of peace, acceptance, occasional denial, and the most balance we've had in 19 months.  We've had a rich history together, as she stated so well in her blog: http://heygirlniceblog.com/2012/11/come-and-knock-on-our-door/ , and I so look forward to seeing how our lives will unfold together in the future.

Happy Halloween!  Our little garbage man and Ayla after she deconstructed her fairy costume.

Love and light

Ayla and Auntie Janet...I mean Jenny.

Three's company!  So appropriate on so many levels!

Another life-changing force that has blessed us beyond belief is the Carousel Fund (http://www.carouselfund.org/).  This organization provides financial support for Petaluma families with children who have a life-threatening or catastrophic illness.  Within a week of presenting our case, founders Arnie and Susan Cohen, were at our door with gifts for both of the kids, and a card with a check inside for us.  Steve, Jen, and I were in tears as they presented their gift that would pay off our weighty health insurance deductible.  They also offered to help us with alternative medical care for Ayla and respite care so we could take a much needed breath.  The financial and emotional relief that this organization has provided is beyond measure.  In just the couple of months since they showed up at our door, our lives have changed dramatically for the better.  It's like we're getting the chance to rise up from the muddy pit of exhaustion, dust ourselves off, and buff out the past year's scuffs.

I am starting to understand that "angels" and "saints" are simply those people that walk among us, materializing that which we really need at the times we need it most.  It's no miracle.  It's human nature.  It's a significant lesson in life.  One that we will never take lightly.  And one that will change us to the core.

Unveiled

My view of the world has changed; I mean this in the most literal sense.  For a while I was thinking that it was my bandage that was obstructing my view.  It was getting on my nerves so I pulled it off this morning.  I then realized that the obstruction was the new shape of the bridge of my nose, combined with residual swelling.  This is even more annoying now!  It's inescapable!  Until the swelling subsides, at least.
I must have been 12 or so when I loved the soap opera "The Young and the Restless."  A character named Eve, I believe, had a scar that ran across her cheek about 2 inches.  Her devastation was irritating.  She was clearly a beautiful woman despite this minor flaw.  I would do just about anything to trade in this thing for a 2-incher across my cheek.  Eve got off easy!
So here I am with no bandage.  You better believe I'm going to post a bunch more photos of myself as I look better!

Progress!

I'm still freaking out a bit about my face everytime I take off my bandages.  However I am pretty amazed with the amount of healing that takes place each day.  Thought it might be fun to toss all vanity aside and post photos now and then so you all can see this amazing transformation.

Skin around my eyes is turning a lovely yellow.  Parts of the incision are visible on my forehead and under my left eye.
Still quite swollen around eyes and cheeks.

Mamagator

These days the universe has a lot to say to my family.  I have yet to determine why exactly we have been chosen to deal with so many huge hurtles in a year.  Did we need to learn a lesson in humility?  Did we need some Jedi warrior training?  Were we too soft?  Was I too pretty?  Ha!  Love that one!
This last Thursday I flew down to San Diego WITHOUT my kids.  Despite the crappy impetus for the trip, the moment I was dropped off at the airporter shuttle I was on vacay.  I kicked my feet up on my luggage and started catching up on phone calls I hadn't been able to make for days.  Knowing that a People magazine and a glass of wine awaited me at the airport, I was instantly steeping in relaxation.  9 hours of travel couldn't have been more blissful: private time, social time, reading time, sleeping time, going to the bathroom without holding a baby on my lap!
The next morning my mom took me to the Moh's surgeon to have two basal cell carcinomas removed from my face.  Once on the surgeon's table, I giggled at the fact that although I was about to go under the knife, I still felt like I was on vacation!  A few hours later, just before the medical assistant bandaged me up, he asked if I wanted to see my face.  I hesitated and then decided I needed to look.  I think I may have left my body for a moment because the world slowed down a bit and I stared at my face in the mirror as if it was something had it's pieces glued back together after shattering on the floor.  This couldn't be my face.  And yet it was.  I was far from freaking out as I would expect myself to under the circumstances.  I thought to myself that most normal people would probably have a good cry at this point.  But I didn't feel like crying.  Gasping a little, maybe, but not crying.

Just finished with surgery.  Classic smile of shock and denial.

   
Turns out the cancer on the bridge of my nose ended up being rather large and left me with a dime-size hole front and center.  Another small cancer was under my left eye, and was removed leaving nothing huge and ungodly like the other.  In order to cover up the spot on my nose, the doctor took skin from my forehead and pulled it down to cover the bridge of my nose.  This left me with an incision that starts on my forehead, comes down between my eyes, and branches into a Y, one side crossing over the bridge of my nose and the other side swooping under my left eye.  To be honest, I think I'm still in denial about the whole thing.  It's as if my brain is impervious to the fact that this has actually happened to me.  I am in the middle of the most profound part of the healing process--still incredibly swollen and bruised--and it looks as though I was in a head-on car accident.

Today's hot look.  Hard to believe this is an improvement from yesterday.

Meanwhile, Steve and the kids and Grandma and Grandpa are keeping life flowing up in Petaluma.  Before I left I gave Grandma the crash course in operating Ayla's pump and administering all the meds and supplements, and Steve is in charge of changing the tape on her face, requiring the classic leg pindown on the floor.  Not Ayla's favorite.
I'd like to say that I'm healing up in a vaccuum free from worry about Ayla but I can't cut myself free considering we spent another night in the hospital just last week.  After a day of screaming and being unable to sleep we took her to the ER in case it was something serious.  Her white blood cell count was up but we never found out what the source of it was.  She's been quite well ever since but a fussy day can turn into something more serious in a heartbeat.  Since being at home she's been doing very well.  So far so good on that front but that doesn't exempt me from stressing about it from time to time..
At least once a day I want to throw myself a pity party because of all the stuff we've been faced with lately.  Sometimes I go through with it and sometimes I take the "bigger person" approach and try to breathe through it.  What I have realized in all of this and what I am reminded of everyday is how resilient each of my family members are.  We keep putting one foot in front of the next and we get stronger everyday.  Maybe the universe is telling us that Ayla is not the only alligator in this family.

A week in the life

I absolutely love how Ayla is commonly referred to as Aylagator these days.  Oh how that name fits her!  Just this morning she got upset at Jonah for taking over the game she was playing and she proceeded to cry, grunt, growl and even attempt to bite my leg!  Bite the innocent bistander??  I did what any responsible parent would do and kindly redirected her to bite her big brother instead. 


Looking good and chubby, just the way we like her.


Last Saturday my dad, PopPop, arrived to take his shift here at Aylagator Manor (sounds so classy, huh?).  He works some great magic with the kids and as much as I know my dad loves his quiet time and privacy, I can tell he gets a lot out of hangin' with the little ones.  Squeels of joy come echoing up from the downstairs play area as Jonah and PopPop play chase and trains.  Ayla has actually lunged from MY arms to be held by PopPop (this is practically unheard of with anyone other than Mommy or Daddy).  He has been an asset in so many ways around here: cooking, doing laundry, babysitting, mowing the lawn, removing dandelions by hand, planting a succulent garden, fixing the balcony, and keeping me positive.  During the course of his visit Ayla has gone from feeling mediocre to feeling downright crappy to feeling pretty amazing.  My level of anxiety directly correlates with Ayla's state of health so PopPop has witnessed me go from highly-functioning, grin and all, to nearly paralyzed with fear of a flare.
     
Here's how the week went: PopPop arrived and all was pretty typical--Ayla fluctuating from a little independent play to clingy and whiny.  Then she vomited and her NG tube came out.  My reaction was an odd combination of fear and excitement.  We took this as an opportunity to see how she would do without it.  She refused to take broth out of a sippy cup so I crept it into her mouth with a syringe.  I offered her bits of chicken and turkey and she was super into it.  Some well-cooked veggies soaked in broth were offered next and she vehemently rejected them.  Water via sippy cup was accepted in small doses.  The next day she wouldn't accept anything.  A day or two of this and she would start loosing weight and getting dehydrated again.  She proceeded to feel worse and worse over the next couple days, cried a ton, and camped out in my arms with her cheek firmly planted on my shoulder.  We knew it was essential to get the NG tube put back in.  The very next day, after an appropriate amount of calories and fluids (all from a combination of Elecare, chicken broth, probiotics and some juice from Chris Vibberts' homemade sourkraut, she perked up.  I was elated!  All in the world was okay again.  Not so fast!  Yesterday I saw a new ulcer in her mouth.  I just about crumbled with sadness and anxiety and the only thing my body would do is walk.  So we walked.  And despite the mouth ulcer, Aylagator appeared to feel alright.  Today, she's back!  She's energetic, spry, sassy, smiley, and bossy.  NG tube and all.  I'm back too.

Taking over my computer session.  Whatever you want, baby girl.

PopPop leaves tomorrow or the next day.  Then we get Baba for a couple days, and then Boppy for a couple weeks.  Oh how we love the love...and help!       

Feeling alright, learning to walk, and stuck on Elecare

We're going on just over 3 weeks of Ayla feeling pretty well.  She had a cold in there somewhere, including a fever, and we swetted it a bit since viral infections in the past have very possibly triggered flairs, resulting in horrible illness and requiring extensive hospital stays. 

Photo taken during last hospital stay.  Feeling pretty miserable.

But she came out of it this time!  A "normal" baby cold?  We have no idea how to determine normal from abnormal at this point. 
She has been rather fussy on and off for the past week, but she looks pretty amazing.  We question whether she's teething, her belly hurts, or perhaps she's simply asserting herself more. 
NG tube is still in place.  Wednesday of last week I fed her chicken broth via NG tube.  She awakened that night crying quite a bit, and has done so every night since.  Could chicken broth really hurt her belly????  Since then we have gone back to an exclusively Elecare diet.  I think I may start her on broth again but just a tiny amount at first. 
The visit to Dr. Cowan was interesting.  He wants to put her on the GAPS diet, fermented turmeric (anti-inflammatory and probiotic), a therapeutic grade probiotic, thuya (to reverse negative vaccine affects), and low dose naltrexone.  He also would like to see her weened off of her current immunosuppresive meds: Imuran and Remicade.  Ayla's GI doc supports all of this except for the naltrexone and getting her off the other meds.  I haven't started her on any part of the new regimine yet and am still researching and debating in order to decide what to do. 

The adventure to walking has officially started!!!  Crawling is still the preferred method of locomotion...rather, holding onto the hands of Mommy or Daddy is greatly preferred, ensuring that we really will won't get anything done, ever! 

Sister and Brother stroller napping after a sunny downtown adventure.

The role of diet

Fingers raw and eyes weary from endless research to discover how we can help our little one feel well, gain weight, reduce inflamation, eliminate ulcers, absorb nutrients, grow, develop, reach milestones.  Today she still has her NG tube.  She consumes 900 ml/900 kcalories of Elecare per 24 hour period.  I am starting to introduce broths again, with the intention of transitioning her fully to the GAPS diet (http://www.gapsdiet.com/).  So many people are healing and sealing their guts using this diet, and are achieving remission (dare we call it a "cure?") for decades.  We have an appointment tomorrow to see Dr. Cowan in S.F., a doc recommended by our acupuncturist and a friend of a friend (whose son has been grappling with a "failure to thrive").  He is well-versed in the GAPS diet and is known to integrate treatments from various traditions.  I look forward to his input and an introduction to a new pathway to health for Ayla.

A few days back I found myself sobbing on the phone to a social worker we've been working with, and through our conversation I'd realized that I had stopped exploring options to heal our little girl.  I got tired.  On one hand, seeking various forms of treatment is incredibly empowering, especially when it appears that one is getting results.  On the other hand, it's exhausting and costly, and prevents us from snuggling up to that cozy state of denial when she's doing well.  But then, as the pattern goes, she gets sick again, and we're funneled into the hospital, where she needs IV fluids just to get her back to functioning, and then a blood transfusion because she's so anemic, and then an NG tube because she won't consume the calories necessary to function or grow, and the labs to ensure she doesn't have a serious infection before she gets her next Remicade infusion.  Really?@#!!!  I continue to be baffled by all of this.  For the last couple weeks she's been feeling quite good.  For the last few days she's been stellar.  If it wasn't for her NG tube, nobody would be the wiser.  So today I began implementing the GAPS introduction diet.  And tomorrow we see Dr. Cowan.  On to the next chapter.......

Daddy and Ayla (with NG tube....still out and about)

Jonah still having a blast!  LOVE it!!!

Gratitude and a Silver Lining

PopPop and Jonah

Granpa and Jonah

Grandma and Grandpa

Auntie Carli, Jonah, and Daddy

Jonah and Grandma

Boppy, Grandpa and Grandma (sorry for the poor quality!)

The outpouring of love and support that we have received in the past 6 months brings tears to my eyes.  Our families come up to stay with us for long stretches of time just to help us function and keep the smiles flowing.  I swear I think they have sprouted wings and become angels. 
Currently, Carole, my most amazing Mother-in-Law, is staying with us.  She cleans the house, does our laundry, cooks amazing dinners, and plays with the kids.  Her steadfast cheer is an added bonus.  My Father-in-Law was also just here for a week.  He finds all kinds of projects to do: pool cleaning, gardening, assembling toys, etc., and he's the king of dishes.  My mom comes up for weeks at a time, helps with just about everything, and finds all sorts of ways to make our house more organized and efficient.  My dad came up for a week not too long ago (and has another trip up here scheduled soon) and floored me with his hero-ness in just about every way.  My step-mom, Janine, has come up (also planning another visit soon), powers through laundry like no other, cleans like mad, and treats the kids with goodies she has collected since her last visit or shipment.  Auntie Carli has taken many days off work to hang out with us in the hospital, bring me lattes, keep the cheer, and be my rock when I need support the most.  She also comes to our house, grocery shops for us, and plays with the kids so we can sleep!  Uncle Mark has stayed with us, offers great moral support, has cooked for us and keeps the kiddos entertained.  Friends have dropped off home-cooked meals, had food delivered, left flowers and cards, and even given us cold, hard cash.  Calls, texts, and emails poor in, offering to take Jonah for playdates, drop off/pick up from school, take Ayla for walks, accompany me during doctors appointments, and hang out with us in the hospital.
If anyone ever doubted the love and goodness in people, let me assure them it is not lost.  There's nothing like a crisis to bring out the magic in humanity.  I'm not sure I will ever be able to repay anyone, and I realize nobody is asking me to.  Each day unfolds before us, bringing forth a fascinating concoction of anxiety and gratitude: dark clouds with a bright and shiny silver lining. 
I don't know how I can ever thank any of you enough.  My heart swells with appreciation for every little gesture to make our lives a little bit smoother.

The Aylagator!

Two months into Ayla's apparent disease onset, I was talking with my neighbor and good friend, Genevieve, about the saga in which we were so entrenched.  I kept viewing Ayla as a frail little thing, easily beaten down by so much as a gentle breeze, and needed to talk with Genevieve about all my anxiety.  She firmly and lovingly redirected my attention to all the fighting that Ayla is actually doing, and that despite her cramps, ulcers, fissures, diarrhea, vomiting, thrush, horrific diaper rashes, torturous drug side effects, etc., she still manages to smile, giggle, play, and, well...THRIVE.  She said, "She fights like an alligator!"  From that point on, my perspective on my daughter shifted dramatically.  This girl refuses to give up.  She's an inspiration!
Thanks to Genevieve for this much needed shift in our experience.  And thanks to Sara Taddo-Jones for the perfect new name for our girl: The Aylagator!!!!  Damn right!!!!

A grueling decision

This past weekend I decided to stop breastfeeding Ayla. I imagined breastfeeding her until the end of time, especially because of her condition, but our most recent situation has made it quite difficult to fulfill that expectation. We came home from the hospital this last Friday after being there for almost a week. She was admitted once she developed a fever and she had been quite sick for about a week. Once in the hospital she stopped nursing completely. This is a nerve-wracking experience since breastfeeding was the only way I could keep her hydrated and somewhat nourished when she feels awful. She then had an NG tube (nasal-gastric tube) put in and we began feeding her Elecare formula through it.

Feeding a person with IBD (Inflamatory Bowel Disease, a broader category which Crohn's and Ulcerative Colitis fall under) an exclusive diet of Elecare has proven a successful treatment in and of itself for many people. So we decided to take Ayla off of breastmilk and feed her only Elecare. I thought I could keep up with pumping so that we could return to breastfeeding once the Elecare diet was over, but I found that after only one day, I wouldn't be able to pull off such an intense demand on top of all the other care that's needed at this point. In essence, we are teathered to Ayla almost constantly because of this NG tube. As of now, she can't handle a big bolus feed (a large amount at once) so we need to feed her at a super slow rate just about all day and all night long to meet her coloric and hydration needs. Consequently, one of us has to follow her at all times, wearing a backpack with the pump and bag in it. Intense, indeed.

The decision to stop breastfeeding is hard enough as it is. It was even harder knowing I would be withdrawing a sense of emotional security and a way to keep her sustained when times get tough. There is yet another component to this decision: many folks with IBD have adopted the Specific Carbohydrate Diet (SCD) and have successfully maintained a state of remission because of it. The diet prohibits the intake of grains, sugar, and lactose. While I realize that breast is best under normal circumstances, I have suspected for quite some time that Ayla may possibly be harmed by something in my breastmilk. I do not know this to be true. But I don't really KNOW anything to be true at this point. We're in a constant state of speculation. But since so many folks are thriving on the SCD, and Ayla keeps falling ill while obtaining most of her calories from lactose-laden breastmilk, I felt it was best to make this sacrifice, no matter how hard the decision is. Thus far (and it's only a few days in), she's doing quite well. Each day she seems to be feeling a little better, and she's coping very well with the lack of boobie comfort. Thankfully babies are incredibly adaptable!!!!

A tribute to Ayla

I have decided that this blog is essential for several reasons: it is therapeutic for me to journal this experience; it's imperative that both my children can look back and see the progression of likely one of the biggest factors in the shaping of their lives; it's a way to update our family and friends of recent events; and I am realizing how much I want to give back to the IBD community (so much of my sense of understanding and relief has come from reading other's accounts of living with IBD).

Our one-year-old daughter, Ayla, has a working diagnosis of Infantile Crohn's Disease. At 6 months of age she started getting really sick: crying while stooling, followed by blood in her stool, loss of appetite, weight loss, and ulcers in her mouth. Since this time she has been hospitalized 4 times, has had 4 endoscopies, 1 spinal tap, 2 NG tubes, 1 blood transfusion, several x-rays, 1 porta-cath, and has undergone an arsenal of exams/treatments/medications. We believe she has not been in remission since initially becoming ill but she has surfaced on occassion and, at those times, she shines like the sun. We're working diligently on getting her healed as quickly as possible and keeping her there as long as we can.