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.

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 50^th – 90^th 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.

American Film Circus, er Market

For every independent filmmaker, the dream and ultimate goal is to secure world wide distribution. But any TRUE independent…and I’m sorry, George Clooney I love you, you are not an independent filmmaker… but those of us who have to get creative to find funding in the first place will tell you that it’s an uphill battle from concept to completion.

This year, for the first time, we found ourselves in the right time and the right place with a feature film in the can and package ready for potential buyers. We had just experienced a very successful month on IndieFlix, a killer review from Cinema on the Rocks and two highly receptive screenings. American Film market was just days in front of us and we had done our homework. We had our one sheets, our synopsis, DVD copies and copies of our 18 band soundtrack in hand. But this was our first AFM, hell this was our first film market period. To say we were a bit doe-eyed would be an understatement. Because being ready and being prepared are not the same thing.

Luckily, the AFM is very helpful. They have a full page dedicated to who’s going to be there, what they are shopping and how to get into contact with them. They also have a full page dedicated to a first-timers “How to” guide.  So early October we made our game plan and our hot sheet of companies we wanted to meet with and how to get a hold of them. We were told by a colleague that we didn’t need to purchase badges ($245 for one day or close to $1000 for the week) because all of the handshaking and deals happened on the main lobby that was free access to all. So we did not purchase a pass and just worked on making appointments.

We sent our meeting requests to 17 companies with two contacts each. We had responses from 5 companies and 12 people, and met with three.

Our first meeting was with After Dark Films. This is a company that specializes in genre film and has a high success rate for those films. We had chatted with them a bit before our meeting and then again that morning to confirm. They had only watched 1/2 of the film when we met, but they were excited about it which was reassuring. They were super excited about the 18 band angle, but we don’t have any A-list talent so they have to sift through the rest of the market and see what’s being pitched before any decisions can be made.  At least a month, so we shake hands and move on to our next meeting.

Next up was Spotlight Pictures. Spotlight is not a distributor. They are a sales agent, the middle man that takes the film to the next market and launch the sales.They explained how this works, and talked to us about their process as a company. They currently have four James Franco films in their roster, so this is the sort of company you want representing you. Especially because they do what you can not: take your film all over the world and negotiate a sale. Another successful meeting but again, no deals are struck and it’s at least a month before they’ll know if they want to represent the film or not.

There was an un-official meeting with a documentarian and Home Video distribution from Germany. She took all of our information, noted our story and shared a coffee with us. She was very nice, but I’m still not sure what her angle was.

The next day was World Wide Entertainment. They are the company that picked up fellow NW Film “Divination” and took it to Red Box. This to us meant we were interested in their company because they’ve taken care of a filmmaker we know personally. That may seem like a silly reason to trust a company, but for us, personal relationships matter. Knowing that there’s a filmmaker in our home town that trusted them enough to take their film gives them a leg up on our trust scale.

The rest of the week was full of other meetings, orientation for our editor at IATSE and then a day of rest before we hit the road for our 19 hour drive home. The best thing about the insanity is that AFM is not unlike the networking events hosted by Seattle Film + Music. It’s not unlike the privately hosted screenings we’ve held for our films, or that other filmmakers have hosted for their own. AFM is one large social networking and hustling event. It’s intimidating, but manageable. And once you overcome the fear that you’re just an independent filmmaker you remember, so are they. Everyone is just trying their best to make movies and get them in front of an audience. And that is very reassuring.

Food Glorious Food

So that was fun.

We are on WIC to supplement Ondine’s nutrition. For any mom who’s ever had to purchase formula, you know exactly what I’m talking about. That shit’s expensive. $17.99 on sale for the SMALL can. And she can go through two in a week. Even the grocery checker exclaims “that’s highway robbery, you’re feeding a baby!” ever time we go in. So we went to WIC to help us out. But because it is a state program, they have certain expectations that are really based on some dude- who’s never had children- his idea of what a child should be able to eat. So at exactly six months of age they decided she needed to start solids. Not based on what a doctor said she was capable of, but what the state of Washington thinks she’s capable of.

Well sure, why not. Any google search will tell you that kids shouldn’t start solids before 4 months so 6 months is absolutely when a child should start. Never mind what the baby’s body is telling it.

But like good parents, we asked her surgeon and doctor and they said that it should be ok but to be super mindful of the pallet. If it gets clogged clean it, if she gets food in her nose wipe it out with a soft cloth. Start with something bland like rice cereal and then move onto foods one at a time, test to see if her body reacts adversely to anything before you try a new food. 2 tablespoons max should be given at most feedings. So we tried.

Of course she was confused at first. Rice cereal was clearly not her thing. Not only did she struggle with the concept, but she HATED the taste. She tongued it all out of her mouth.

We tried in this order: carrots, green beans, peas, oatmeal, squash sweet potato. Oatmeal & sweet potato seem to be her favorite. She actually really enjoys the flavor of the foods. Mmmm is the sounds she makes. But…

If she swallows wrong or gets too much in mouth at one time… Disaster. Most children are messy when it comes to eating. Ondine is no exception. But most children don’t take a bite and have it come instantly out their nose.

For anyone who’s had a brain freeze from your favorite ice cream or had someone make you laugh at the exact moment you take a gulp of your favorite drink, you understand the sudden pain of that. But you’re an adult, or at least old enough to understand the pain is fleeting and you’re going to be ok. Now imagine you’re a baby, you reasoning skills have not been developed and all you know is that every time you open your mouth to accept a little food, it hurts. Tears and screaming is your only way of expressing.  So meal time is now a challenge, and not a pleasant one.

Homecare Adventures

10 days post stitches and ALL kinds of fun. In not sure if its an oversight by the hospital or the nurse or me for not asking. But they forgot to tell me how to change the tape on the stints. It should be pretty standard except that the rubber bands are literally sewn in. Hmm. Challenge accepted.

I managed to figure out how to stretch the bands without snapping or cutting them and get the old tape off. But this process was a good 20 minutes at a time. Then you get to lube them up with some sort of jelly safe for a baby and her nose. Never mind the screaming that happens once you get them back in her nose or the ripping she does at her cheeks to get the tape off.

I have a lot of parents try to pat me on the hand and tell me that they understand. No. You don’t. Unless you have a child with a medical condition that requires constant attention, you simply don’t. I recognize you’re trying to make me feel better, but as I’ve mentioned before, until you know what it is to hold you child praying that the choking will pass because there is NOTHING you can do to help, you don’t understand. I appreciate your empathy, but please don’t give me advice because you simply don’t understand.

Once I mastered getting the tape on the stints and the tape on her cheeks, there was a new challenge  each morning: Find the damn thing. Ondine woke up a few days ago and the stints were MIA. Sheer panic. Had she thrown them somewhere? We’re they in the crib. Please God tell me she didn’t swallow them!

Four days go by. It’s the Monday after we noticed them gone and they suddenly and mysteriously appear on the changing table. But not in a diaper or something. Oh no just casually hanging out near the wipes.  I’ve decided this is the ongoing “WTF happened to that” syndrome. It means you hand the baby a toy or something and seconds later its completely gone. Weeks later the garden gnomes have returned it and all is well.

We kept at if for a few days after we found them, but frankly they became more of a hassle then they were worth. We decided it was not worth it to make her cry over anymore. We have plenty to make her cry just being a regular baby. The struggle with the cleft, well lets try to make this as easy as we can and let her BE a regular baby.

Goodbye stints. Goodbye tape. Until we meet again at years end. 

Stitch Free, the Return of the Tape

So excited! August 19th and the stitches (finally) come out. This was a longer than normal stitches in situation due to schedule conflicts. The doc was out when we were in so to speak.  But huzzah they’re out! …

And the tape is back.

We knew she would have to have stints- little plastic tubes- to help her nose keep its formation after surgery. We forgot that there would be tape again.

She was NOT a happy camper.

Well such is the way of it. We don’t often like things thrown our way. More often than not we are fully prepared for one challenge and life throws us a curve.

For Ondine, the challenges will be life long. I have friends who are so excited. They think her journey is over. I don’t have the heart to explain there are at least two more surgeries.  This one was substantially cosmetic when you get down to it. The future holds a much more significant and difficult surgery. But we can only face them one at a time.

So for now, we will dutifully put her new device in and e the mean parents. Because the rest of her life she won’t remember this pain.