Thursday, October 16, 2014

Back Breaking Benefits


This has been an October full of suck. It's usually my favorite month but between family and friends illness, personal injury and mourning a family loss... I'm kind of done.

Yesterday I went for a follow up for my own trip to the ER, because you know once in a week was clearly not enough. It's the first day I feel well enough to sit in a car since last Friday (and maybe a chair for any period of time). The residual effect of the pain meds the hospital prescribed have left me on bed rest with an upset stomach for almost a week.

I call, and gently remind the receptionist at my primary care provider's office of my condition, tell her it's to follow up because of my ER trip... I have to say that three times before it clicks with her. Then we go in.

Despite the fact that I'd been there the week before for a condition that had worsened, and to follow up the ER visit, we have to wait. We wait a long time. And Ondine is starting to act like any other toddler. And because it's a doctors office there other crying babies. But these don't bother me. They actually make me smile, almost longing for when she was little and things were so much easier. Then I snap back to reality and remember it was NOT easy.

The one dad takes his son outside for a moment to calm him down. When he comes back inside I can't help myself. I shout at him.

Me: Oh my God, does he have a bilateral cleft lip and pallet?

Bewildered (slightly embarrassed) father: Yes.

Me: He's beautiful.

Bewildered (slightly less embarrassed) father: Thank you.

Me: My daughter had the exact same condition.

She goes running by. A beautiful smile, no scar. He doesn't seem to believe me. We start to chat back and forth, my husband and I start sharing our story.


I show him where she started, which was much worse than where his son is for the pallet and lip. I show him more photos of her journey, the device she had to wear, the tape on her tiny cheeks. We talk about the doctors and the NAM molding that didn't work for his son but Ondine would be the poster child for. His sons name is Evan and he has a secondary condition I don't remember. He will have many more surgeries than Ondine because of it, but I would never know to look at his precious smile.

Evan's dad asks us if people ever stared, or gawked. Yes.



I tell him how it took some time to get over myself and not give a damn what anyone thought. I can tell that it takes the guilt and frustration off his shoulders to know someone else was judged the same way, to know that someone else felt they had to explain their situation because it is no ones fault that they were born with a cleft.

His wife comes out on crutches. She tore her ACL. She and I make a fine pair in our struggle to take care of our children with our injuries. 

She sits to feed Evan using a familiar pigeon bottle prescribed for such patients. We tell her some of the same stories we shared with her husband. We ALL complain how tired we were with the first bottle we had to use, grateful when they prescribed the new one. 

We have read some of the same blogs from Seattle Children's site, and heard some of the same stories. It's actually makes me forget about my back and my wait time for  my appointment because it's such an honor to talk to another family who's going through the same thing we did.

We keep talking. No one should cry because other moms, with their perfectly healthy babies, make them feel judged- but we both experienced it. I tell her I only pumped until 4 months but then broke down in tears that I wasn't a good mom because I couldn't feed my own baby. She almost cried, because she didn't make it even that long and thought she was the only one. 


I can see the relief on both of their faces to see our before and after photos. There is nothing that a doctor or expert can say that will be the same as seeing first hand the before and after. There is nothing that can replace the anxiety with the assurance that everything will be alright as witnessing someone else who has passed through the fire before you, with you can.

I am really grateful I injured my back. You see, we were supposed to be somewhere else Wednesday evening. But somewhere else didn't happen. My appointment took too long.  And because of that we were able to share Ondine's Journey with someone new. I can't begin to tell you how the light I saw on their faces, in their eyes, when I told them "I know how you feel" and they knew that I could actually say so. 

There is nothing that takes away the fear of taking a child to a hospital completely, but I'm grateful I suffered a little so that these strangers would know they were not alone and find hope.

Tuesday, October 7, 2014

Midnight Rush

It's 20 to midnight. The Seahawks lost. My husband is sick, my back is out, and just I'm case today wasn't awesome enough, Ondine decided tonight would be a good night for a hospital run.

So were here, waiting for meds to kick in so they can stitch up her absurdly deep gash from her acrobatic flip over my lazy boy chair. Oi. Vey. 

With all that in mind, I'm so grateful for Seattle Children's Hospital. Their staff is efficient, kind and dedicated. It may be the night shift, but they're as bright-eyed as if they just got here. The nurses have tricks to get kids to calm down or focus on something other than the exam at hand and, just in case, there's helpful kids movies to watch for kiddo distraction.


So while I'm in really severe (read I can't hardly walk myself) back pain and my husband is having trouble breathing normal, at least we can take short stuff to this grade A hospital with top of their class staff to attend her owies large and small.

I love my emerald city, especially our fantastic Children's hospital.

Thursday, July 10, 2014

Waiting on Talent

That's a phrase you never want to hear on set as an actor. It's usually not your fault.  You're typically sent to wardrobe for something or a makeup change or who know's what, but it happens and there's nothing you can do about it. And it's always said in a snarky manner like you're not in the room.

Then there are the times when you arrive as talent... and the crew is nowhere to be found.

You have certain expectations for work. I would never expect to be a lawyer and suddenly the courthouse wasn't where it was supposed to be. That's what it feels like when you arrive at location - 15 minutes early just in case- and there is no one there. It's rare that I've had this happen. In fact, it's more typical of a student film than it is on indie filmmakers who are professionals working outside the studio system. But it happened. This week in fact.
The Commute

Wednesday I drove myself an hour-plus to Puyallup for a car commercial. In Seattle time, that's very good traffic, but distance enough to be noted.  I arrived early with the hopes of getting some writing in.  I got a few pages but I kept checking the clock so much I decided to give it a rest and walk around.  Luckily everything was within blocks so the pub I was at was walking distance from the park I was told to be at.

Despite what you might imagine, it's typical for a film company to shut down an entire park or at least a section of it to control what the environment around the story looks like. This was not what I saw. I see lots of people, but no defined area for filming.  I see no grip truck, no honey wagons, no crew nothing. So I decide to post shop on a shaded bench and just wait for what might be a ghost hunt.

Guerilla Filmmaking 
A few minutes before my call time, a gentleman recognizes me from our various encounters on Facebook and through the Seattle 48 Hr Film meet ups. He's a production assistant for the day and he's the only reason I'm recognized. It's also the reason the actor playing opposite me is recognized as he heard us say hello and came to join us. Luckily he and I knew each other from another film and had already talked about us both working together that day.

The crew arrived and I realized I'd worked with this team not long ago on another commercial. They are super professional and I enjoyed working with them. A few minutes later the make-up artist was doing our hair and makeup, the crew was sectioning off a space to film and we were shooting within 30 minutes.  We wrapped, we signed on the dotted line and we were done.

On set... for an entirely different shoot
I was paid, they were paid but the rest of it was sort of on the fly. My only conclusion was that the client didn't want to pay for all the things they would need to achieve the goals they were asking for. I.E. Permits, grip truck, wardrobe, Hair/Make-up station etc. So the team did the best they could with the budget they were given.

It was just refreshing, perhaps a little ironic that what's typically referred to as waiting on talent, was really the talent waiting for the crew.

Tuesday, July 8, 2014

Life's Curve Balls Stink Like... Well, Balls

I had a plan. It was a beautiful plan. Go to Spokane away from all distractions and write. It was simple, clean and everything I needed to be an effective and creative writer.

Then sometimes, life has other plans.

For the first several days, I did not get more than 2 pages written. Because as an independent filmmaking team, we often write our own contracts. They're typically straightforward and to the point of "if you do this we do this and we all agree to this." I think 5 pages might be the longest contract we've ever written with some very specific points of definition in them. It was several days of hashing those out, and to satisfy our investors, we are still working on them, negotiating terms so that our expectation are fully established in ink before we move forward. But the work had to be done.

I got a little more writing and a surprise visit from my husband and daughter for our 4th Wedding Anniversary. It was a beautiful and appreciated relief from all that legal and business jargon I loathe so much. But it was out to the farm very shortly after where I could write, ride, and shoot as needed.

Nope. Family, allergies that kicked my rear and other business to attend to.

I quickly found a way to get myself away from it all with no phone, no email, no nothing but the sweet sound of clickety-clack of my keyboard. I got 30 pages in. I was on FIRE! It was amazing, to know that it wasn't my inability to write through writers block, it was so many distractions I couldn't focus. Glorious day!

Too bad the bed at the lake is so awful I threw out my back. I mean big time. I couldn't walk, was sort of tipped to one side and really the only position remotely comfortable was sitting... for about 5 seconds before I was in pain again. Back to town for some medical evaluations.

It took nearly 4 days, a bottle of anti-inflammatories a chiropractic visit and a massage therapy session to get to a place where sitting/standing/sleeping was not painful. I went back to the lake, alone and prepared to write. I had a day and a half by myself before the family would join me for the 4th. I got 20 pages in.

So now, I'm back in Seattle. Been here a few days with my 50 pages I was able to accomplish in the 4 days I had of actual writing time. Not bad if I do say so myself. Now, for the last 40....

Monday, June 23, 2014

Back Against the Wall, Now WRITE

It's funny how sometimes it takes a moment where you're back is against the wall before you really have to make a change- or choice.

That was us, not very long ago.  Try as we might, we simply could not sustain a constant flow of work. Meaning we'd have a really great month then three where we were pinching penny's.  One month where filmmakers were coming to us will all sorts of ideas (and budgets) and we helped them making the ideas a reality. Then zilch.

Then a very unfortunate situation happened and a client we had been paid our first fee by, who had large ambitions but very little understanding of how the industry worked lost his gumption when he finally realized that he was not going to nail the A-list talent he wanted without throwing down serious cash. The film was abandoned and all the work we had prepared for vanished. Or rather, got filed on a shelf labeled "well that was interesting" to be pulled out an admired anytime we get too big for our britches.

So we're back to having our backs against the wall. Work trickles in or it pours in, there is no in between. Filmmaking is not the glamorous party every night that people imagine it to be.

Then, as if by lighting strike, we both decided that it was time to stop waiting for others to hire us and simply make our own work. Because that's how we started out. We made our own work.

There's been this film, a short that needs to be a much longer film by all accounts everywhere we've taken it. And it's been a few places. Festivals, private screenings, more festivals, and finally settled on IndieFlix where all 6 minutes of glory can be watched again and again for whomever wants to.


A steampunk western. A Short. That should be a feature. Well, alright Universe. Let's get cracking.

Here I am in Spokane, on a "writers retreat" working on the script. Next week I'll be in Rosalia learning how to shoot black powder rifles (think civil war era) and revisiting my horseback skills. But today, Writing.


I'll see you on the flip side.

(to see more as we develop, follow my TwitterPinterest + Facebook)

Monday, June 2, 2014

It's a Full Time J-O-B

My typical work day.
Let's get something straight.

What I do for a living is FUN. I enjoy it. If I did not I would work at a law firm and be the best damn office services manager you've ever met. I did that for a long time, working 40 hours a week in the corporate world while I came home and worked another 40 hours on film so that I could keep building my path towards the career I actually wanted.

When my daughter was born, I had to make a change. I didn't have 80 hours a week to devote to two jobs, because 75% of my time was consumed by family obligations. So I left the law firm and made a full-time commitment to working as a freelance filmmaker.

Some people say I'm crazy. How can you do that to your family? It's so unstable. You'll never make a living.

Location scouting on our anniversary with our daughter.
I actually do. It's not a luxury filled living. But it is a living.  I have set rates, and expectations to deliver certain product based on those rates. They vary slightly, from project to project because I'm not unreasonable. I understand that you are a small business just trying to build you brand, so I make an exception and tell you the bare minimum I can work for, typically my overhead cost for living that month. I mean even attorney's will work Pro Bono if the case is a good reflection of the lawyers morals (or it makes them look good to the public, but I digress).

My point is this. Filmmaking is not your typical "day-job." The hours fluctuate. The work is in constant evolution, and the likelihood that you will be booking the next gig while on vacation is high. Workaholic is a common label slapped on us, because we rarely turn off. And to be honest, my vacation is a day I haven't booked where I get to take my daughter to the zoo.

Filmmaking feeds my soul and feeds my family.  It might be a creative, but it's still a job. You wouldn't ask an architect to design you a new home for free. You couldn't justify asking a master carpenter to build you an ornate cabinet out of oak for free. You certainly wouldn't solicit a marketing firm - a HIGHLY CREATIVE JOB- to market your business for free.

So the next time you ask a filmmaker to work for you please consider this: This is not a hobby. This is my J-O-B.

Directing my actor on a short film.
Want to see what I do? Visit our website and take a  look. We make dreams come true.

Sunday, May 25, 2014

Hospital Run

Miserable and Unhappy Baby.
Being sick sucks. It's even worse when your kid is sick because you can't tell them they'll be ok, and you can't ask them to explain what hurts. You just have to hold them and try to make them comfortable.

I have never considered myself a helicopter mom. I believe a little dirt is good for her. I believe that learning by trial and error is also good. But at 2:30 am, the 102 fever had not gone down in 24 hours and the breathing became labored. It was time to make a hospital run.

She breathed heavy for the entire drive. It was a little surreal driving up Penny Drive at Seattle Children's when it was pitch black out. We got into the ER and we checked in.

The nurse and the Resident came in to begin exams for heart, weight, temperature. Typical questions: How long has she been like this? Two days? What was her temperature when you checked it last. 102. When did you notice the change? Late Thursday she had a cough, Friday it was a temperature and cough. Tonight her breathing changed. Any idea where she might have contracted it? Well she and her baby friends were swapping bottles like they were at a wine tasting, so my guess is there. All work stopped while the nurse and resident got a hold of themselves from hysteric giggles. Apparently I'm funny.

Cuddle Time!
One we got through the crux of it, they said she did have some wheezing sounds, but they sounded nasal, not chest. The on-call doctor made the final exam and said he was sending her home. Keep an eye on her but there was nothing to do but wait it out and make her comfortable. If it got worse, come back but right now this was just her body's natural and normal response to a virus.

We were home by 3:30 am. We got her some cough syrup approved for toddlers 12 months and over called Zarabee's that proved to be most effective at both suppressing her cough and helping her kick it. 

Back to normal. Oh thank God.

Saturday, May 17, 2014

Ondine's Journey: One Year.

Kids man.

They change your life and you never really know how until you have them. And you're nodding your head and raising a glass to me if you have kids or shrugging your shoulders that's what everyone says if you don't. It's just the way it's gotta be.

I guess there's LOTS of videos out there for people celebrating their children. There's the dad that shows the transition of his kid for the first 12 years (which, by the way... that takes dedication!) Same with this dad who did 1 second a day from birth for a year.

We're not that organized. We are however filmmakers so it would be just unacceptable if we didn't have some footage of her. Turned out we had 6 hours of footage. Wow. Lucky for us, my husband is an editor, and it didn't take him long to whittle it down to 10 minutes of our favorites.

If you started at the beginning with us, you know what a journey it's been. And that Ondine's Journey, while not entirely unique, it was a difficult and beautiful journey.  I hope you'll appreciate this little window into our life with her, the triumph and trails and the extraordinary beauty that just radiates from Ondine every step of the way.



Saturday, May 10, 2014

The Power of a Poster... And a Trailer... And a...

Alrighty.

I've been at this filmmaker thing a while now. So I think its fair to say I know a thing or two.  But as my industry is ever evolving, my education is in need of constant refueling. Thus was the case with our most recent bout of Press Kits, One Sheets and Treatments for our feature film, The Anniversary.

In November I talked about the circus that is the American Film Market. We went as armed to the teeth as we could with our one page treatment, our one sheet that looked like a poster and a list of potential connections we wanted to flesh out. We built our pitch based on the "tips" from the AFM itself and from fellow filmmakers who had previously navigated the gauntlet.

It was pretty successful. We got three face to face meetings, several more email inquiries and some really excellent feedback. Lost of potential, but not much came from it... except new knowledge, the means to a sales agent and the experience to guide us forward to our next pitch.

Well, we now have our film available online, both on IndieFlix (streaming) and on Vimeo on Demand (Rent or Own). And IndieFlix likes our film enough to help us polish the package for pitching to the next market. So here are some tips I've learned from them.

1. Pitch Perfect
You would think that this would be obvious, it's not. Your pitch is your films first voice. It's critical to be aware of how words fall on ears that do NOT belong to your intimate friends or family. You have no more than 3 or 4 sentences to captures your entire film before they get bored. It might even help if you can narrow it down to the length of a Tweet, especially for your log line. Pretend your pitching an unfinished film to a studio executive- it will help you hone your message. Also, be consistent. If your website says one thing and the Press Kit another, it may not be clear they are the same film. Copy-Paste is ok here. When you're in person, go ahead and razzle-dazzle each individual pitch. In the written form be specific, concise and consistent.

2.  Unique Snowflake
Do you have any idea how many independent films were made last year alone? Me neither. But that's sort of the point isn't it? We have a vibrant community that supports itself largely off itself. But for every professional that's spent years perfecting their craft there is a dude with an iPhone convinced he'll be the next Terrence Malick. Maybe he will. The point is this, there is a LOT of noise to break through, and a lot of other filmmakers who have had the exact same idea as you. So figure out what makes your film different. We made a horror film. Every filmmaker makes one at some point. It's just a matter of when. Strike one. We have a cast of unknown actors. Strike two. We have five hot female leads that are real, not plastic. Ok I'm listening. We set it in the 1980's. You have my attention. We have 20 bands signed on for the sound track. Money. Let's do this! While it was something we were proud of during post-production, it didn't occur to us how unique that was until a distributor at AFM said so. Mind, blown.

3. It's in the Network

We've been fortunate enough to garner a fair amount of reviews, interviews and general chatter about our film. One of the best reviews we've received was from Cinema on the Rocks. Quotes from outside sources, even if they are small outlets, say the film has been seen by eyes that are not your mom (love you mom) and they have a firm opinion of your film. It's also nice to see that your film has a greater reach than just your family. In fact, if you haven't spent time building an audience for your film on platforms like Twitter or Facebook make sure you have it in some other form and make sure you can prove it. Buyers want to know they are both the "first" to "discover" your little gem, they also want to make sure it's a sellable product.











4. Product not Art.
I just want to make movies for the art of it. Good for you. But at some point my guess is you have to pay rent. And the landlord doesn't accept "art" as form of payment. Here's the thing, filmmaking IS art. Every part of it. The issue is your buyer doesn't care how many hours you spent building it from the ground up, they want to know they can get an ROI. Buyer want to know if they can re-sell your product to a larger audience.  And truthfully, don't you want that to? You want to know that someone cares about your art. Which means they have to buy it. Recently I've been exposed to this dirty little secret: distributors wont even watch your movie. They bade their purchase off your pitch, poster and or trailer. That's it. So when talking to potential distributors or formulating your pitch remember your also asking them to buy your product, however artistic it may be.

5.  Survival of the Fittest
There is something to be said for perseverance and adaptability... while maintaining that unique voice we talked about earlier.  We had one agent ask us to change the title of our film. After our initial knee-jerk temper-tantrum of "No, no, no!" We asked what his suggestions were. We realized that if it was just our title holding us up and we dug in our heels, it wasn't worth it. A fellow filmmakers title changed 3 times to my count before it was settled on by distributors. When we heard his suggestions, we realized exactly what they were, SEO search words.  Titles that if randomly typed into Google would yield results. We ultimately agreed that none of them suited the film, but we started working on a new poster. Something Eye-catching. Ahem, *cough* ->


Suffice it to saw we've done a lot of work on this film, and we've learned a LOT about marketing it. Sometimes we get advice that while well intended is not helpful, other times... like when IndieFlix coached us on our Press Kit, it changes your whole perspective on how your film might be received. Which means keep learning, keep evolving and never give up.

Saturday, March 15, 2014

One Year.

I can not believe it. This time last year I was waddling around “nesting” and getting ready for the big day. This year I’m running around getting ready for her first birthday.

It’s been a journey to say the least. Not just the Cleft, but normal baby milestones and regular every day living.

My most frightening/rewarding/challenges of the last 12 months:
1) Gave birth to a beautiful girl and now having a new life to care for.
2) I left the security of a 40 hour steady job to a real careers in a field I’m good at that also brings me joy.
3) Watched two of my best friends say “I do” at their wedding and then grow in love and life together.
4) Co-Produced 4 short films, one music video and was in several more + we screened our feature film for our investors.
5) Traveled to the American Film Market and learned a LOT about business.
6) Held my little girls hand through 2 major surgeries and all the medical treatment in between.

It’s strange, because I can’t really imagine a time without her. I know there was a long period of my life that was baby free. And I have those fond memories of shenanigans. But honestly, it feels like she was always there.

And now that I can hold her, she’s given me such profound direction. Not that I wasn’t clear about my path before, but by stripping distractions and focusing on what’s important I’ve been able to direct my goals and grab the reigns of my own life more than I ever have before.

So yeah. One year. I no longer measure it by the first of January and the end of December. Time is now measured in moments with Ondine, and I like that time frame.

Monday, March 10, 2014

Actors Beware

To say I've been in this business a while is a long stretch.  I was 6 months old in my first film. The little one in pink, that's me in the opening sequence for "Mass Appeal" staring Jack Lemmon. Now, as an adult I write, produce and one a good week I get to act too. So I've been doing this some time.

I preface this with that because I don't want to give the impression that this post is by some poor no-expereince soul who was swindled by a scam artist. Oh no. I've been around a while and I've seen this dog and pony show before.

Recently I was contacted by a local management company. They had messaged me on my profile through Stage32.com which by some miracle I saw (I'm never on the damn thing).  So I set up an audition with them, prepared my monologue/headshot/resume and made a trip to their office. Remember it's important to note that they invited me to audition for them.

It was a terrible audition. The monologue was fine, not as funny as the film it's from but neither is the scene. But the commercial audition... Oh my lanta! It was not for a real product, it was a generic one off of their website they asked me to memorize. It was poorly written but my performance was no excuse. I gave a BAD audition. And much to my surprise the Manager asked me to sit, and discuss my future.

She asked what I noticed most about them. The first was that they were a faith based company if their logo and the cross by the door were an indication. The second was that they had a fair amount of resources for prospective talent on their website- even if they didn't list a single talent person but a lot of "clients" they've worked with.

She told me a I needed new head shots (which was true) and that in three weeks there was a New Faces mandatory meeting before they signed anyone. Ok, I'd never heard that one before but the industry is evolving so quickly right now a sort of staff meeting seems like a good way to establish expectations between new talent and the management company.

My red flags flared when they suggested one, and only one, photographer. I went to the photographers website and it was "under construction." That's all well in good, but it's still under construction. It's been that way for weeks and I can't find this photographer anywhere else.  Hmmm.

I'd like to use my own photographer please.

We don't like Seattle photographers. They don't understand LA style.

Well, here's a link to her work, I would really like to at least consider her.

We don't like Seattle photographers.
lisasquaredphotographing.smugmug.com
At this point I insist on using my photographer. Mostly because if they refuse it's a complete red flag, see you later thanks for you time situation. I mean Agents and Mangers can and will suggest photographers they trust but they by no means should insist on one, and only one. The second because I want to give paid work to a local I trust over an out of towner whose website is down.

I checked in with some of the casting directors I have a personal relationship with about LA style, photographers and their thoughts. Yes there is an LA style. And  a NY style. And an "everywhere else" style. A good photographer will know that. No your manage/agent should never insist on only one but rather make suggestions and work with you on decisions.

Suffice it to say that I worked with my photographer. But once they saw the proofs, they couldn't find anything nice to say. Mind you, I'm not yet signed. My resume is full of current work and expected work shooting over the summer and I had just fulfilled the one thing they had requested: Get new head shots. I'm confirmed for the mandatory meeting and ready to hear their pitch on why they are the company I should work with.

Then I get an email. It talks about trust, and relationships. How they don't feel a need to do things on my terms. Basically it was an it's our way or the highway letter.

After a lifetime of film work both in front of and behind the camera I have learned a thing or two. Most importantly when to walk away. I politely thanked them for their time, and walked away.




Wednesday, February 19, 2014

168 Hours of SUCK!


Well. I try to stay positive, and I’m sure I’ll end this on an up note. But this week sucked.

Ondine’s surgery was a huge success. She was under a bit longer than expected, but with skilled surgeons comes perfection, which takes time. What I neglected to mention was how our once happy sleep-through-the-night little girl is absolutely stir crazy most of the evening. From frustration, from pain, from dizziness that I’m sure gave her a headache and from the disorienting feeling of not being in her safe zone.

I spent most of the night trying to get her not to cry. I’ve never been able to not get her to cry or sleep. Not since she was a newborn and I was just learning to read her needs. This is as heartbreaking as it is disheartening. It gives this impending since of hopelessness that already bound up in your inability to explain to an infant that it will be alright.

Once in a while she would fall asleep in my arms only to wake
screaming the moment I tried to lay her down. This went on for hours. Around 4 am she exhausted herself to a point that she couldn’t possibly stay awake and passed out. When the nurse came in to check vitals I told her I might kill her if she touched her (I’m kidding. Mostly). So we decided to let her- and me- sleep.

2 hours later it was time for our neighbor baby to get her treatments. I vaguely heard the physicians walk past us and to her side. Ondine however woke right up, pulled a glove off and stood up, shaking the bars of her cage crib to get attention. And we were back at it again.

I decided to move her to my couch bed so that she might waste some energy crawling. Nope. She only wanted to break free. She crawled to the edge and stuck her head through the open door while I held onto her tiny little hospital gown. She watched the staff at the nurse station for a while but eventually got mad she wasn't allowed to crawl.

She had so much energy and was eating so well that two hours later when my husband arrived they told us we could go home after some paperwork, a full 24 hours early.

This was good an bad. Good because now Ondine had a family space to crawl and play in. Bad because now we were 100% in charge with only us and family to help- all of who were leaving us within the next few days.

This has been a repeat MO for the last week. Every night we have a little “discussion” about bed time. She falls asleep in our arms only to scream as soon as we set her down. Once we finally get her down it’s about 2 hours before she’s awake demanding comfort usually.

I spent a bitter sweet night where she fell asleep n my chest like she used to when she was new born only for her to wake in a start and scream in pain and discomfort for the next hour.
Last night however, after an evening with our church Ohana group, she went right to bed. She woke once, and then again in the morning bright and early. We’ve learned to trade off and couldn’t make it through without our  friends, family and church friends brining us food so we could focus on her. Which surprised me. I don’t ask for help easily but find that if there is help offered I will gratefully accept. Especially food. Less cooking = happy mama.



So I guess it wasn’t all suck. There were good moments and beautiful souls who helped us. But my prayer is for one full night of sleep. For her and for us.

Wednesday, February 12, 2014

All the Little Voices

The hardest thing about staying overnight at a children's hospital is the cries of little ones whom you can't help. Our daughters roommate was young, newborn from the sound of her. She had a team of 4-10 doctors/nurses/specialties/leadership that participated in her care as often as she needed it. I couldn't see her, and her parents were not there for whatever reason (and in my experience it's a good one) but I can't help comfort her. I'm too busy comforting a little one of my own.

Ondine has always been a vigorous child.  She surprises doctors constantly at how strong she is and how well developed at less than a year.  And yet all sorts of precautions have been exercised as part of the protocol of Craniofacial patients. For example we waited two hours post surgery to even see her because it's standard protocol.

I'm not comparing, Seattle Children's is the best place to be for this.  But that doesn't make it easier.

When Ondine came to us, she was zonked out. We figured that was the drugs. But it lasted through one of the most hellish nights I've ever experienced with her.

Ondine typically sleeps through the night. We're that blessed sort of family who have a routine for her and stick to it. Her naps and awake times could set military protocol. Bit everything is off now.

When I did manage to get her down for 2.5 seconds, the Ronnie baby had a fit, wanting mommy but only having a nurse to attend her needs. She cried so Ondine did.

This quickly delved into full on fits as the pain increased in tandem with her hunger and the realization she was no longer in charge. It was a fight to get her to sleep, and eventually we just had to put up the crib bars and let her cry because there was nothing we could do.

But the hardest part was taking her home. That should be your moment of triumph. But it's not. It's terrifying. Because now it's up to you to be a good mom without any guidance other than a pre-printed pamphlet the hospital gave you.

And each time I give her meds, she zones out. But not in that high as kite funny ha-ha way. It's that stare at a wall I'm not here sort of way.

Luckily she's a tough kid and the meds ware off quickly. She resolves that the gloves aren't coming off and learns to crawl with them. She still signs for milk and mama under the messing restricting her fingers. She still wants to only fall asleep in my arms.

In a way it's like she's a new born again, only this time she's Mighty Mouse. This time she has cognitive reasoning and the strength of ten babies. But she cuddles and falls asleep in my arms, that semi-sweet slumber that says thank you mom for making this not suck so bad. Okie kid. Any time.

Tuesday, February 11, 2014

Cleft Pallet Repair

Today was a rough day. I know we've been preparing and praying over it for months, but much like the first surgery, there is very little that can actually "prepare" one for taking your child to a hospital for a major surgery.

Early am, a cranky beep alerts us that it's time to get up. We rolled out of bed, practicing quiet so as not to wake the baby we were not allowed to feed. We had hastily thrown together a bag for her and us the previous evening and were pretty much ready to go. 30 minutes later we were on the road, an annoyed baby babbling in the back seat.

We check in, on time. Ondine has destroyed a onesie past the point of no return, so she's in mommy's sweater and her Seahawks cap. This simply makes her more adorable to the hospital staff. But she is still a cranky baby. My husband and I trade off every few minutes, both of us still sleepy and struggling to keep our very active little girl entertained and clean. She is also starting to realize it's been almost three hours and she hasn't had breakfast yet. She signs to every doctor who comes in to talk to us that she wants milk. When this doesn't work she fusses. By 9:30 she's demanding food, but it doesn't matter because they're taking her back to start anesthesia.

And now we wait.

Passing the time in a hospital is easier than it sounds, so long as you don't think about where you are and for what. So I decided I would focus on work and pour my energy into some paperwork. Success! Mostly.

Have I mentioned that I (and my mother) have over active imaginations before. About 2pm, an hour past the estimated surgery time, my mom mentions she had this vision of the old medical theaters. You know the ones where the early mad scientist presented a procedure to other mad scientist with the innocent victim patient strapped laying on a cold metal table for viewing. Yeah, that's where our minds went. Not the best vision to have while waiting for your daughter to get out of surgery.

Minutes later the pager finally goes off and thirty minutes later we meet with the doctor. He is one of the best in the country, if not the world, so we are very lucky to have someone who is so meticulous. Seattle Children's Hospital is known for its skilled people and the wealth of knowledge they share across borders. We are very blessed to have Dr. Tse and his AMAZING team. He explains to us the reason he took a little over an hour extra on her procedure and as expected it's all perfectly normal. He runs down the do's and don'ts again and then tells us we'll be able to see her soon.

"Soon" in hospital time means when they are good and ready.  After about an hour of waiting for her I risk it to run to the showers and clean off the days worrying. When I get back Ondine is still not there. My husband tells me there is a new policy for cleft pallet surgeries and we wont be seeing her for at least another hour.

5:30 rolls around and I hear a familiar whimper in the hallway. An IV is rolled in attached to a groggy teary eyed Ondine in the arms of her nurse. She barely recognizes us, it barely registers that there are new faces in the room.

At her last surgery, it was very easy to see where the pain was coming from, it was very easy to show her that she couldn't touch because it was on the outside and it hurt the moment you bumped it. This time the only evidence is a tear streaked face and a tiny crust of blood at the corner of her mouth. There are no outward signs that she's in pain.

I hold her, cuddle her, so does daddy. She is very disoriented, but seems to like the TV for the first time in her life. How to Train Your Dragon seems to calm her. But we know it's food time, so we prepare a bottle.

I've talked extensively about how different and difficult it can be to feed a baby with a cleft. This new surgery means for the third time in her tiny life she has to relearn how to feed. We have been using what's called a pigeon bottle. It had a valve inside the nipple so that when her lips or gums press together liquid is pulled through in a suction form, something she has never been able to accomplish alone. We use the same bottle now.

But when she tries, she immediately cries in pain. Her hands are bound up tight to keep her from accidentally tearing open the surgery just performed, compounding her frustrations with her pain so she cries more. Some of the milk mixes with saliva in her mouth and blood leeks out. It circles her lips and leaves a bright red reminder that what can't be seen is still very fresh and painful.

She cries. I cry. Daddy tries not to cry and our friends and family reassure us it's going to be ok.

And it is. Ondine was able to take down food, the number one reason patients are kept longer after surgery. She hurts, she's frustrated and a little stir-crazy from not being able to crawl but she's ok. Some medicine, a few more attempts at food and a dozen lullabies sung later she finally decides it's time for sleep. She's peacefully sleeping right now and it's reassuring. This is not her last surgery.  But she is ready for whatever is next, because she is stronger than I am and that gives me hope.

Friday, February 7, 2014

Tiny 12's

With all the excitement about the bustling start to the year and Seattle most decidedly making their voice known, it’s been a little chaotic around here. In the hubbub, while everyone else was basking in a Seahawk glory we took our little girl to Seattle Children’s Hospital.

That is a team that deserves a trophy. They’re wonderful there. Every floor has bright colors and kind people so families and children feel comfortable… Well as comfortable as you can at a hospital. Everywhere we looked there were 12’s, including our tiny 12 with her own little headband just her size. It was nice to have so many folks not worried about what was wrong with her but more excited to share with her their excitement over this enormous victory.

And it’s a pretty cool victory that’s special to the heart of Seattle Children’s. Because a football rivalry turned into a fundraising campaign that benefited both Seattle Children’s and the UCSFBenioff Children’s Hospital. Another victory, especially with our Hawks making monthly (sometimes weekly) visits to the hospital for fans who can’t make it to games. But our game is just about to begin. We’ve been gearing up for it since her last surgery in July. We knew this one would be harder, and that this one would require more patience.  And the build up is killer.

I don’t know what to expect this time. Ondine was tiny last time. She was just learning to move, so they didn’t need to take any extra precautions. She was medicated and recovered in record time. The Poster Child for NAM molding according to her surgeon.

That’s great but my understanding of this surgery is that it is twice as difficult and recovery is twice as long. Because this is the more dangerous of her surgeries, it’s entirely inside the mouth. If you’ve ever had a tooth pulled or worse, cut from your mouth you know how painful it can be just to bump it.

My prayer is that some of that love and hope that our 12’s gave the Seahawks and took them to victory can take Ondine there too. She’s one of the tiny 12’s, the brave children who have to go up against giants at Seattle Children’s Hospital.

Take a moment for me please. Say a prayer, not just for Ondine but for all of the kids who are currently at an away game. Away from home, away from family and friends, away from their favorite nighttime cuddles and praying for a miracle.

Pre-Ops... Again

Monday morning, bright and early, it was time for our pre-ops. This is sort of a standard health and wellness check to make sure she’s ready for surgery and not in a condition that might inhibit her recovery or increase the risk of infection afterwards. So we knew the drill.

We arrived early, checked in and were whisked away to our private room where we wait for the parade to begin. Not nearly as exciting as the Hawkalypse. It’s just the three of us waiting. The first person is the nurse, who checks growth including height, weight and head size. This was the first time it clicked why on earth her head size is important. I thought it was just for developmental milestones. It’s not.

If your child head is larger, like our daughters, it may not be that she has a big head. What bothers doctors is that if a child’s head is larger than normal and not following the average trajectory of growth but accelerating past that, it could mean that there is a build up of fluid between the skull and the brain- and that is a very dangerous and scary thing.

Typical signs of this is lack of focus, lack of motor skills, non responsive and, you guessed it, an abnormally large head. Ondine has exactly one of those symptoms. If you’ve met my brother (who got stuck in the birth canal) or my husband (who has met exactly one person with a larger cranium) than him or me (who loves hats and can NEVER find one that fits my hug noggin) then you’d understand: we have big heads. On one side we can trace the line to Vikings, on the other the Celts. We are large people.  They measure us just in case before her LAST surgery. Yep, height weight proportionate, just big boned.

But, as per usual they somehow forgot that they measure all this last time. Or maybe they’re erring on the side of caution, which is probably more accurate. Ondine is wicked smart, incredibly active and nearly walking for the last month (which I’m told is unusual).  Her head shape is normal, and even though it’s a big skull, it’s not out of the ordinary for the rest of her body. She’s in the 50th – 90th percentile for weight and height as well.

Suffice it to say, they decided she needed an MRI. I’ve had those. They’re annoying, loud and uncomfortable. They tell you to listen to the relaxing music and just try to fall asleep. Yeah right. But you can’t tell a 10 month old to just sit still. Oh no. There is a method, but it’s not fun for baby or for mommy.

Into the room with so many warning labels it might as well be an office in Fukushima. It’s dark, cold and there’s a stranger in it. Ondine does well with most new faces but with men she has been shy as of late, also a normal developmental phase for babies.  So the new face is being very nice, but he now has to swaddle Houdini. To do this we start by putting her tiny little head in a vice, a soft padded vice, but a vice all the same. Next, we swaddle her in industrial hospital sheets, one arm tucked nice and tight, then the second. Ondine has figured out now that something is about to happen and she is NOT going to like it. He’d already put a little wax in her ears to protect them and now we Velcro her down. One big strap over her chest, one small strap over her forehead to keep her in place. In she goes to the tube, she is now in hysterical tears. The crazy loud machine makes it worse, she doesn’t know where she is she can’t get away and this beast of a device is making monster noises.

Moments later she’s withdrawn, unstrapped and handed to me. She has those panic tears. The ones that are desperate for comfort and full of fear. The outward expression that an adult would be able to articulate but a child must hope that you’ll understand. I do, I hold her tight and we head back out for daddy and a ride home.

The good news, she’s perfectly normal. The bad news, mommy cried too. I just hope that when surgery happens week, it’s not as scary as the big bad MRI.