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.

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.

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.

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.

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.

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.

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.

Pre Op Count Down

Monday July 22nd was our pre-op. It was a bit overwhelming, as they tend to be when there’s more than one stop. We first met with the surgeon and his assistant. They told us roughly what to expect and complimented her progress so far. I guess if there was a poster child for NAM molding, Ondine would be it.

Next up was the social worker, I think to best judge our mental state. Since Ondine is such a chill baby 90% of the time, we passed with flying colors. Though I can’t help but feel an ant under a microscope during them. I talk too much trying to show how awesome we are at parenting. It’s exhausting but I know what kind of power a social worker, even a friendly one, can wield so I ‘m not taking any chances.  Finally the nurses, to go over the Post-Op process and feeding. They ask us to feed her without her device in.

Disaster.

Ondine has become so accustomed to her device that it’s essentially become a part of her mouth. Think about it. You’ve had tape on your face since you were two weeks old and a retainer in your mouth covering a hole since you were 3 weeks. 4 months later the adults in their infinite wisdom decide it’s time to take this away. She screamed, she couldn’t eat, she’d smack the bottle away. She wanted nothing to do with it but she wanted her device back in. I’m so glad the nurse came AFTER the social worker.

Dejected and exhausted, we’re sent home with instructions to leave the device out as often as possible. This lasts until she wakes up again. Half a bottle of spilt milk and hysterical tears later my husband and I both decide that’s enough. Tape, device, bottle. And silence. The sounds of a happy baby getting enough to eat without any trouble. I’ll risk the trouble later.

Next night was the blessing of our first feature film. It was only appropriate to bring short stuff with us, she did after all make her presences known one week into production. And while we celebrated with our cast and crew, Ondine journeyed with us. A few people commented on how lucky we were to have her with us. Many of our film friends have been following her journey and it was their first opportunity to meet her. I think it surprised a few that we included her but having grown up on film sets myself it was only logical. Ondine’s journey is our journey. For the last year we’ve been making a movie. During that time we’ve also brought a child into this world. Post production for both has been a nightmare with taping, editing, surgery consults and very little sleep for both. But at the end of the evening we realized that the one prepared us for the other. So with two days left until surgery we celebrate the completion of our first feature and anticipate the next step in the journey for both Ondine and us.

Now & Then

Two weeks. It’s crazy to think there was time in my life when I didn’t know how to change a diaper, much less change the medical tape that molds her tender tissue day by day. But in two weeks my precious Ondine will have her first surgery.

A lot of folks see her, and her device that looks like different things to different people. some ask if its oxygen, some recognize it on sight. nearly everyone assumes I can’t wait for surgery. That’s not entirely true.  I’m a little scared.

When she was first born I asked “can you see her face?” I must have asked multiple times, I honestly don’t remember. But I asked enough for my mom to bring it up one night when I broke down. She looked at me, telling her in tears how beautiful I thought my daughter was and gently reminded me I asked. And when the answer was yes and then the follow up was “does she have it?” The answer was yes. Then my mom asked me if my heart didn’t break a little. The answer was yes.

And then I saw her face. Her perfect little lip shaped beautifully like a heart. Strong legs that fully extended and pressed against my belly.

Her neck was so strong she lifted her head to look around moments out of the womb. She was perfect. I know I’ve said that before. I’ve written a lot on it. And I realize that all parents find their own children to be perfect. But in that moment I was challenged.

Now, 3 months later- hours of sleepless nights, days of frustration followed by moments of perfect glee we are just about there. So of course as our new journey begins I look back to where it all began. I’m shocked to see the changes. Because I’m with her everyday I hardly noticed them. Her whole face transformed. Her eyes became more clear, her nose formed a real structure and her perfect little lips got even closer together.

So we wait. Patiently for the OR to open its doors. A whole new set of challenges await us. But I’m ready. I think 

When the First Baby Laughed

Laughter can cure all that ails you. Laughter cures fear and mends broken hearts. Laughter lifts your spirit and shakes off despair. Laughter gives you strength through pain, and celebrates your heart. A child’s laugh is a diamond that cuts through all trouble and gives hope for the future.
Ondine laughed today.  And The day before. and will again tomorrow. Weather  it was the funny faces we made, or that we elicited joy from her tiny form, she laughed.

Each day is unique, some good some bad. Somehow that small laugh made all our struggles vanish. That small laugh restored hope on a weary soul.
“When the first baby laughed for the first time, the laugh broke into a thousand pieces, and they all went skipping about. And that was the beginning of faeries.”  I’d like to think the first laugh for each child becomes a faery. for how else do you explain the magic laughter of a child.

Counting Down the Days to See Her Smile

Most of the time, Ondine is so chill that everyone compliments me on how lucky I am. I protest that I’m just proactive in attending to her needs so she seems more chill. But the medical team seems to think so too so maybe I am that lucky. We are 50 days out from surgery and it feels like we’ve come a long way. But the journey is far from over.

Every week since she was 2 weeks old we have taken Ondine in for molding. Molding of her lip, now molding of her nose. Every week we adjust the device. Somedays she cries, somedays she sleeps right through. Today we added a piece of tape to press down the middle section of her lip just bellow the nose. She didn’t cry, she screamed.

Maybe she was hungry, maybe she was upset that it’s hot in Seattle and we don’t have AC. Maybe she was hurt by the device and couldn’t express it any other way. But she screamed. She screamed when she was on the exam table, she screamed in my arms, she screamed until she was exhausted and a cuddle on my chest seemed to dissipate it for a minute.

The doctors see her every week and comment on her progress. They’re great doctors. So kind and helpful. Anything I could need and they are there for me. But they aren’t the ones who have to put the tape on her cheeks. They aren’t the ones who take a wet cotton-swab to rub away adhesive so you can change the tapes on her device so she doesn’t accidentally swallow pieces. They aren’t the one who has to swaddle Ondine because she’s too strong and jerks so violently away from the tape that the threat of damaging her eyes is very real. I am. I am the mean person who tortures her and she looks at me with big wet eyes that ask one question: Why?

I’ve had to get creative to help expedite the process, otherwise I break down in tears myself and have to walk away for a moment.. I created a portable medical kit out of a diaper wipe container that goes wherever Ondine goes now. It’s more of a stock pile in case she rips tape off her face, which she does any time she’s angry.

I’m blessed that she has started to pacify herself with her fingers by sucking on her hand. The thumb-sucking doesn’t work because the device is in the way. She tried at the docs office today but it just wasn't the same. It took her until she had nearly cried herself to sleep plus a bottle plus a car ride before she actually settled down. Her brow was furrowed in sleep. She was anything but relaxed and I just sat there and cried. I cried like I cried when I went to visit my own mom.

My mom had taken the device out to let Ondine rest and I cried because it wasn’t fair. My mom got to see her smile. My mom got to see her at peace. And when I had her I had to be the adult and keep the device in, so she never really rested. I cried because I was jealous that I might never see her smile.  Silly I suppose. But it was how I felt at the time.

Just a few days ago she started to smile for real. But this device ruins it every time. She smiles for a moment then remembers that she’s not that comfortable, that there is this tape pulling her checks towards her nose, that there is a piece of metal and plastic pushing her nostrils open and a final piece of tape pulling her lip down. Molding her face for the future. But today… I just want to see her smile.