Stitches Out. Tubes In

December 29th, 2011

Navy went into the surgeon for her check up and to remove the sutures. It's pretty amazing to see the progression even after a week. During the surgery, Dr. Miller, inserted tubes into her nose in order to keep the tissue from collapsing. The tubes hold the nostril up but also assure that she has something to breathe through. From what I understand, cartilage has memory (like muscle memory) and it will try to go back to the way it was before. The tubes prevent that while also stretching the tissue in order to create symmetry.

Navy's Home

December 13th, 2011

Just brought Navy home from Omaha. She's doing well. She has to wear little braces on her arms so she doesn't touch her sutures. She has to sleep upright to keep the drainage from pooling in her throat. But, all things considered, she is doing really well.

Surgery :: UPDATE

December 12th, 2011

Surgery Day started with wide smiles. It's what we've come to know with this little girl. Nose to chin. Deformity to beauty. Beautiful warm wide smiles.

It's what our anesthesiologist saw as she looked down at this little baby girl. As this doctor looked, she sang, “I'm gonna hold you in my arms forever. Gonna try and make up for the times I hurt you so. Gonna hold your body close to mine.”

And then the door closed behind her, the haunting song trailing off toward the operating room.

Two parents sat alone. Trying not to look at each other so the tears didn't come too fast.

This is surgery number one. Of like twenty. It's the first and maybe the most important. Definitely the most noticeable. The surgical team closed the the gap in her mouth that never quite formed. Finishing what God started. The doctors then skillfully mirrored her left nostril to the right. Forming a little symmetrical opening from the gap. Hopefully now, the promises we hear will come true. Perhaps, one day, when you meet her, “You'll never be able to tell.”

And now she's back. Sleeping restlessly in her mom's arms. Painkillers working. New nose. New lips. Looking almost like a new little girl.

This is a step. Step Two. A big second step for a girl only four months. A big step for us, her parents, only four months old. The old things we'd discovered about her don't quite work now. No more sucking on mom's finger. No more crying it out. No more NAM. And for now, no milk.

So on to the new. For all of us.

Thank you so much for your praying for Navy as we continue on in this journey. We are so grateful.

Here's to the next step. Much love to all of you. You guys are amazing.

Jon + Alicia + New-Lips-Navy

First Surgery :: Less Than a Week

December 6th, 2011

Navy hit her first real milestone.

In one of the updates, we wrote about her NAM (nasoalveolar molding). Basically, it's a weird little retainer that pulls the disconnected parts of her mouth together. It's the device you see in her mouth in the picture attached to this update. Each week, we travel to Omaha to get this device adjusted. It's a somewhat simple procedure but it causes Navy some pain and discomfort. Enough that she now hates those poor nurses (sorry, girls).

But no more. Dr. Markt her cranial facial doc has cleared us for surgery. The first surgery. She'll have many more. But this one is a little unique because it's the most noticeable. It's her lips. 

So. Our next journey to Omaha will be a little different. Up until now, there is a sense of hope. A hope that this little girl will have a surgery and be normal. She'll fit in. People won't stare. Little kids won't exclaim, "what's wrong with that baby?" It'll be done. 

But with the surgery, we lose a little something. When it's done, it's really done. That's what she'll look like. It's weird to hold to hope... to have faith in the unseen. After Monday, it'll be what it is. And that's a little scary. Not for her, she has no clue. Leave it to her parents to worry. 

If it was a heart condition, her lungs, a liver, we'd all pray that it would be "healed." We'd pray that God would fix it. But this, this visible thing is somehow different. We struggle with that. We struggle for praying for a thing that can be seen. It's weird. But what if there was no scar. What if Navy herself couldn't see it? What if that was our prayer? 

But, I say screw it. Pray with abandon. Ask for something big. Pray for the doctors. Pray for the surgeons. Pray for that coming scar. Pray for Navy.

Here's to faith. To healing.

Love you all. Blessed by your insane generosity. Thank you.

Jon + Alicia + Navy

The Date

November 25th, 2011

I first met the Bean several months ago at her uncle's wedding shower. She's cute as a button -- dressed in all the latest fashions with piercing blue eyes that have a tendency to fixate as she finds something interesting. You can see her grow with each new meeting. 

Update 2

October 6th, 2011

NAM IT!

Somewhere, my mother just used my full name. That’s ok. I think she would say the same thing about this necessary evil. The NAM or nasoalveolar molding device is rough on all involved. It’s a hard plastic retainer-like device that is taped into Navy's mouth. It's used to help close the distance between the two pieces of her palate. The idea being that the surgeon has less space to close.

But let’s face it (see what I did there), no one likes headgear, rubber bands and tape all over their face. Navy’s not a fan. She loves having it out and hates when Alicia puts it back in. And the rest of the family, we just kinda always hate it. Each week, we drive the sixty miles to Omaha to get adjustments made. They add to this part, subtract from this part. Always pushing her mouth a little more. 

A little more. That seems to be her story. A little more towards "normal." A little more into the unknown and new for her. Scary. Sore.

And each week, Navy cries the sixty miles back to Lincoln.

But you’re half way through this step, Navy. Keep on fighting a little more. We’ll get rid of this Namn thing in just three more months!

One Day

October 4th, 2011

Tyler, a close friend recounts meeting Navy.

Topher and I had taken to pacing the hospital’s waiting room, seeing as both our computers and phones were out of batteries and we had exhausted our abilities to entertain ourselves. Night was turning to earliest morning, and there was still no word. We could just see the hospital room from where we sat, behind a glass paned door. Nurses ran in and out with towels. We had, I think, both thought we would have heard something by now.

I went up to the nurse at the reception desk.

“Has Alicia Clark given birth yet?” I asked.

“I can’t tell you that.”

“Can you give me a hint?”

“No.”

“Why not?”

“I could lose my job.”

“Just nod your head if Alicia Clark has given birth yet.” 

She pressed her lips tight together and looked down at magazine, which I took as my cue. Topher look at me inquisitively and I shrugged my shoulders. Just then, Jon – Alicia’s husband – came out of the hospital room and wordlessly motioned for both of us to follow him. I had seen him tired, but I had not seen him like this. But then, his wife had just successfully completed a 32-hour labor. That will do things to a man.

And then he told us the rest of the news, which began with him saying, “there’s way to sugar coat this.” And a good many things that had been simple were suddenly complicated. And things that had seemed important were suddenly less so. 

I did not see Jon and Alicia’s baby, Navy, till the next day. Alicia was all new mom, smiling and sleepy in her hospital bed, but she was hopelessly in love with her new baby. Nearly unmindful of her visitors. She stared at Navy with the all-consuming devotion of new moms that is beautiful to see and a bit sacred. There were flowers and cakes, of course. Little pink shoes. Lots of visitors. Everyone endlessly congratulating and, far more noticeably, reassuring. This will be okay, they all said. Everyone seemed to know someone who had survived it. I, myself, called my father – a medical professional – and quizzed him. He admitted that it is a hard thing, but far from untreatable. 

I held Navy, and my first thought was, “it looks like a flower.” It truly does, her mouth. Her lips come nearly together and then shoot upwards in a fine, sudden arc, meeting somewhere in the red recesses of her sinuses. This is a cleft palate, her birthmark, a ruby well of lips, for the first few months of her life, until the doctors feel it’s safe to cut her open and dam it up. Until then, a flower. It surprised everyone involved. In all the ultrasounds, she’d shyly held her fist over the mouth.

For right now, it is not so unsightly but it is unwelcome. She cannot nurse, or even eat particularly well. Feeding her is an exercise in the most extreme patience, as the milk pools in the divet in her mouth and gets choked up and spewn out. Whatever milk happens to sneak down to her stomach is what she will survive off of, for now. 

And what are we to think, of a child who gets brought into a world so violently, with violence strewn across her face clear as a prophecy? What is her life now but a burnt offering; beautiful, sad, and utterly necessary? And who is Navy, except a young girl chosen before the foundations of the world, knit together in her mother’s womb, fearfully and wonderfully made?

Oh, Navy, it is a gracious and cruel world. You will not remember the flower on your face, but when you look in the mirror, perhaps you will see just a trace of it. A little nip below your nose. The faintest porcelain trace of a scar along the lines of your lips. And maybe that will be the reminder you need that most of us spend our lives learning – that grace and violence tumble about together, indistinguishable and inextricable. That there is no wound that can not be healed, but there is no healing that is final. Not in this life, anyhow. This very strange life in which babies like you come in like pillars of fire to lead us all.

Oh, little Navy. It’s going to be alright.