What's Next

Always bouncing. Loving solids. 

S has her second surgery on Tuesday. It will be her fourth procedure under anesthesia. 

It is not as invasive and will not take as long as the first surgery. This one is all about repairing the left side. The doctor is confident that they won't need skull bone. They're basically just sewing up the opening, building up the lower part of her eye socket, and putting all the tissue where it needs to be. They are also taking out the distractor. I had hoped that they would  be repairing her upper eyelid, but that will have to wait for another day.

She will look completely different. No more facial cleft. She'll have a more or less symmetrical face. Her left eye will still be half the size of her right and be covered in scar tissue, but that lower part of the eye will be pushed up to a more adequate level. 

It's hard to write about this neutrally. As a parent of a child with craniofacial abnormalities, you try so hard to avoid words like "good" and "normal" and "correct." They lose their meaning. The face she was born with was perfect looking and normal to her and us. But it was missing a lot of parts. Parts necessary for eating or speaking. Parts that allow most other people to blend in, cheekbones and eyelids. 

I spend a lot of time looking at her. We'll be lounging on the bed and she'll be snuggling/eating her favorite doll, and I'll take my glasses off so I can get right up next to her face, so I can really see every detail, every pore, like I'm some sort of makeup mirror with a memory. I take a gajillion pictures of her every day. I don't even post most of them. They're just for me to scroll through during a lull. Remember, remember. Remember her face right now. Her true face. But is it? She will never know this face. She only had it for seven months. She'll always deal with the aftermath of her clefts, the speech and eating issues. the scars, but the face she knows will be normal to her. And, it's not as if her face is even the totality of her personhood. She's an excitable, social goofball no matter what she looks like. I don't know. I don't really have the language to articulate the feels. I just love that dang cleft. 

A Fire at the ENT: One Pediatric Subspecialist Tale

Like all special kids, S has a bunch of doctors, one for each separate piece of her head. Coordinating the specialists with her pediatrician and United Healthcare is often fine, but, occasionally, it is a clustercussing nightmare. As a parent, nothing makes you more prone to hate-crying than dealing with your insurance company when you feel like they are preventing you from getting your child the healthcare she needs. Usually, it's just the insurance company torturing you. Most of her doctors, well, not the doctors, the women who run the front desks, are good about stuff because they're professionals who deal with parents and medical billing all day. This is a story...of that not being the case.

They're sisters and they're beeeeeeeeeeest friends. 

They're sisters and they're beeeeeeeeeeest friends. 

For those of you unfamiliar, your pediatrician gives you a referral to see a specialist. That referral goes to both the insurance company and the specialist's office so everyone is on the same page. You get a certain number of office visits with the specialist under each referral. If, for some reason, you don't have the necessary referral or for certain procedures for which a referral is not enough, you need an authorization from the insurance company. There are always snafus with this much paperwork circulating, but most specialist offices work it out before the visit and call to let me know if I need to make any calls or track anything down. 

Two days after Christmas, I took the afternoon off of work to drag S to the ENT for a check-up on her tubes and a hearing test. Aunt E was in town and came with. The appointment was riding right up against S' afternoon naptime, but I figured we'd be in and out, We checked in, and for about 5 minutes, kept S entertained by spinning her stroller around. I then get called to the front desk, never a good sign. Aunt E starts bouncing S. 

"We need you to call United because we need an authorization. We tried to call your pediatrician, but no one answered" (((it is a super tiny pediatrician office, they were probably at lunch or still gone for the holiday)))

"I'm sorry, why do you need this?"

"We don't have a referral on file"

"I would have really appreciated being informed of this three weeks ago when I made the appointment"

"Well, when they made the appointment, they were looking at her chart and it says she's on a PPO, but really she's on Health Select"

"Well, yes, I know she's on Health Select, why does her chart say she's on a PPO? She's never been on a PPO."

*Shrug*"It's an error."

I calmly walk away from the desk, you can't scream at these people. I tried to consider that this was probably just an honest mistake, plus, we will continue to deal with them for years to come. I call United, the guy who answers is super confused. He says that we don't need an authorization because she's still under a valid referral with several more doctors visits. He gives me the referral number.

"United says that she doesn't need an authorization. There's still a referral on file. Here's the number"

"Huh, well, um, I don't see it. I can't do anything with the number.  Can you call them back and ask blah, blah, blah [a bunch of questions I have a hard time remembering]"

"ooooooooooookkkkkkkkkkkkkk"

Call United back, the lady is confused about why the referral number is't enough. While I'm on the phone, with my anxiety ratcheting up, E is carrying S around letting her touch and pull on the fake plants. It's very cute even if she shouldn't be messing with it. I'm just trying to keep everyone calm. Me calm, I was trying to keep me calm. E and S were fine.The front desk woman, the United lady, and I agree that faxing the referral should work. Get off the phone. Go back to waiting. Wait, wait, wait. At least a half hour. 

We're at naptime, I know she's going to need a bottle because if she doesn't nap until after the appointment, it will have been too long since her last bottle. (I could write a whole post about my insanity regarding naps and feeds) I'm about to go check to see what's up, when there is a fire alarm. Like, a real one. We have to leave the stroller in the office and head outside. I see her doctor and seriously consider just asking her to take a quick peek into her ears so we can go home. We're outside for so long, S has to eat, so I sit down on the sidewalk like a hobo and feed S. A fire truck rushes by, and the resulting wind gust almost blows S over. That was funny at least. 

Finally we can go back and and I decide that I've had enough and tell the front desk woman that I have to go. Aunt E is doing a great job of entertaining S and keeping me from committing mass murder. United still hasn't faxed the referral and the front desk woman just didn't think to tell me ever. She checks with the nurse who says we can reschedule for next week and I demand a first thing Monday morning appointment because frankly, I have already taken too much time off of work. We leave without killing anyone.

As soon as we get home, I put S in her crib hoping against hope that she'll just go to sleep already because it's 3 p.m. Friday and I have to make a bunch of calls to get this nonsense straightened out by the end of the day. Call United, the woman who answers is, well, an idiot and is confused by every single word that I am saying, and puts me on hold so she can check with her manager or something. After ten minutes, I hang up figuring that the likelihood of the next operator who picks up being even stupider is pretty slim.

"I need her referral faxed to the doctor's office."

"Ma'am, we don't do that sort of thing, we don't interact with the doctors' offices that way."

"Really? Then why was I told earlier today that it was possible?"

"One moment. Ok, ma'am? We will fax it, would you like to stay on the line until the delivery is confirmed?"

"YES"

I am crying this entire time, by the way. S has in fact not gone to sleep and is also crying. The dogs are barking at me because they're jerks. I usually don't take the customer survey at United because who has the time, but I did that day, and went on a 5 minute rant detailing the depths of my dissatisfaction. 

I call the ENT to make sure they got the referral. The woman who answers the phone doesn't see it, but tells me she'll check and get back to me either way. I tell her that if they don't have it, I will lose my  mind. She laughs and thinks I'm joking. I am not. 

Well, it's almost 5 p.m. and I haven't heard back. I am full of rage. So, so, so full of rage. I call them and of course no one answers so I leave an impassioned message articulating how outrageous it is that we didn't get to see the doctor that day and that no one is helping me or even calling me back. I didn't curse once. I research other pediatric ENTs in town and plan to email the craniofacial nurse coordinator to see if they deal with other ENTs. This is the most egregious bout of nonsense from this office, but not the first. I also begged them to call me first thing Monday morning about the referral so that I wouldn't waste yet another chunk of sick time on a fruitless appointment. Nada. We show up there and they all act like nothing happened. No one at the front desk says anything to me. The doctor makes small talk about the fire alarm. Only her nurse apologizes, and it is not even her fault! I do really like the nurse and the doctor, so we won't be switching, but jesus, that front office needs to get it together. 

In actual news, the tubes are fine. They did the hearing test where S had to be perfectly still and quiet while they stuck probes in her ears. She passed on the first try. S was a crab apple that day, but always performs well in front of randos. 

Thank you to:

Puppy, it's cold, let's snuggle!

Puppy, it's cold, let's snuggle!

Gramps, Gram, Gami, and Grandpa for being her greatest playmates and support. Aunts E and L for being amazing sisters and friends and cheerleaders. Long-distance aunts, uncles, and cousins for every email, text, and Facebook message! Great Paw Paw for being so attentive and thoughtful, seeing you and S together is the best thing in the world. 

K and C for always checking up on me even when I don't respond to your texts. S' and my joint best friend A for coming over with Otto and wine whenever we need it. My "book club" girls. Our special kiddos are famous all over town. I don't even know what I would do without you. Our friends who continually send us love from Brooklyn, Cambridge, San Francisco, and Austin (look at that list of places, unbearable hipsters, the lot of you). 

Our bosses and coworkers (some of whom are actual real-life friends,) who not only approve time-off requests, but are also very much needed emotional supports. Especially when she was in utero, all of the stressful and upsetting things we went through happened at work. So many at TWUMC for all the food and love. Jill and everyone at CCA for making us instantly feel like part of a community.

Her surgeons for being so competent and kind. 

Old friends, sisters' friends, everyone everywhere for all the love and good advice.

POTUS because without you, S would be subject to lifetime caps and a victim of her preexisting conditions. I take great comfort in knowing that as long as I don't get myself fired, S will have the insurance and healthcare she needs, without question, until she is 26. 

This is an update. Kinda.

Quick surgery recap: complete repair of the Tessier 4 right cleft, including bone transfer from skull to create a lower orbital rim.  Insertion of a distractor into left cheek to move palate and bone up to where they should be.

S is healing. When she came home from the hospital, her right eye was practically swollen shut. Now we all debate whether she’ll even have a scar.

A lot of y’all saw my FB post/pity party about turning the distractor screw.  We had to do it twice a day. First thing in the morning and last thing at night. Effing terrible. I curse a lot in my real life. I try to keep it clean on the internet, but it really was the effing worst thing I’ve ever done. F F F. For a lot of kids, the screw comes straight out in the front of the cheek, sort of parallel to the mouth, allowing for easy access to the screw. For S, the screw is on the underside of her jaw line, angled diagonally away from her face. That doesn’t make any sense, but basically, one parent had to hold her upside down and the other parent had to hold her face still and get in and out with the screw driver as fast as possible.

SOMETIMES THE SCREWDRIVER GOT STUCK.  And we were so desperate to get it off of her, we pulled too hard, and the screw came too far out of her face. Like, if you were wearing stud earrings and when you went to take the back off, you pulled too hard and the stud went through the pierced hole. That was S’ life twice a day, with her parents doing that to her. Thankfully she’s a baby. Darling, if you find this when you can read, we’re so sorry! Your surgeon made us! It’s over now and you don’t remember it, so why are you still complaining about it?!?!

It wasn't a lasting pain, she would stop screaming after a few minutes. Which is ultimately a good thing, but it also meant that pain medicine really didn't help. You’d have to be on more than Tylenol to not notice someone punching your face. We had to do it for two weeks. It’s done now. Having those metal plates in her face and growing new bone is, we think, causing her lingering discomfort. She’s much more prone to grumpiness now than she used to be.

When the eye swelling went down, her tear drop cleft was gone. It took me a few days to get over it. Her new eye shape resembled D’s. Her surgeon was worried that her lower eyelid would start to fall down again, on account of the tissue having previously been accustomed to going wherever it damn well pleased and the new bone not being native to her face. We were instructed to massage her cheek/lower eye up for a total of 10 minutes a day. We’ve been doing that, but the lower eyelid is in fact continuing to droop down, down, down. If I’m being perfectly honest, and this is the internet so of course I am, I kind of don’t mind it? Because it looks more like face 1.0? But I also feel bad about feeling like that? Because I know it’s better for her to have a proper lower eyelid? Anyway, I alerted her nurse to what’s happening. We’ll see what there is to be done for her on this issue.

She is overall doing so splendidly, that her surgeon has already scheduled her second surgery for January 28th. He’ll take out the distractor and repair everything on the left side. Then, onto the palate! (woohoo/sad face)

I don’t know what the etiquette is on naming her doctors and nurses, but we love the whole cranio-facial team. Her surgeons, clinical and surgical nurses, and physician assistants. All the best. If anyone in central Texas is interested in them, please let me know. That’s all for now. I will soon write posts on our hospital stay, our epic disaster of an ENT appointment last week, her general development, and more. 

We have a new date. Blerg.

Ready for winter.

Ready for winter.

I knew it was a possibility, but assumed it wouldn't happen. The surgery will now be on December 3rd. This forced me to reschedule her six month check up and immunizations with her pediatrician, her follow up with her ophthalmologist, and her initial dentist appointment. 

They actually called me awhile ago to reschedule it, I just couldn't write about it because there are too many thoughts.

I need to keep in mind that if it weren't for the surgery(ies) involving shaving off a piece of her skull and inserting a screw into her face and related specialist-scheduling drama, everyone would just want me to shut up about my stupid, perfect baby. She is happy, she is on a schedule, she rolls over both ways (granted I had to trick her to get her to roll from stomach to back after weeks of stranding herself on her stomach after flipping from her back like some sort of upside down turtle baby), she tracks, she reaches and grabs, she self plays and soothes, she eats like a champ. Her favorite thing to do is zoom. This involves one of us holding her out, her stretching out her arms like an airplane, one of us yelling "zooooooooooooom" while running through the hallway, and then ending with a bounce on the bed and a chuckle.  As far as she knows, her life is problem-free. Every kid loses this illusion eventually, but she has to lose it at the age of six months. And I hate that.