We have a date.

She now has all the hair and a killer smile. 

 On November 19th, we will take S to Dell early in the morning. I chose her hospital outfit before she was born.  I was worried that it would be too big. Because she is so strong and healthy, the doctors felt no need to rush her surgery; the outfit will fit perfectly.

Thank goodness that we have already been through the whole rigmarole. We know where to park. We have been to the post-op recovery room. We are prepared to weigh her diapers and record amounts fed. We will turn over her day gel drops and night ointment over to the nurses. We will bring our own sheets and pillows for the pull out “couch bed.” It’s barely either of those things.

S first met her surgeon when she was a week old. She was a little under 6 pounds and was having trouble feeding. The doctor told us that her surgery would need to be within a couple months. We switched bottles and now she is humongous. Tall and chubby, perfect. When she saw the surgeon again at two and a half months, he was pleased with how well she was doing and told us to expect the surgery to take place within a month of that time. Every day, we nervously waited for the surgery coordinator to call. I obsessively checked my phone. I pestered that poor woman on the regular. She finally was able to tell us that we were looking at late November at the earliest. Wait, WHAT? At first I was annoyed because we had never heard that date. Then I realized that I had learned one of my first special kid lessons. Don’t listen to the surgeon about dates, dude does not know his own schedule. Go straight to the coordinator.

Ultimately, I am so grateful for the last couple of months with her, I can barely think about it without crying. The internet and my friends informed me that babies sort of suck until about three months because that’s when they stop being fetuses outside the womb and start to interact and be normal humans. When we thought S would be having her first surgery at or before three months and another shortly thereafter, D and I assumed we would not get to have that fun, normal baby time and we mourned it. But, postponement of the surgery until November gave us that time back. Instead of watching her sleep off pain and trauma in a hospital crib, we got to see her smile and then giggle. Instead of losing sleep because of vitals checks and the constant beeping of machines, we got to lose sleep over swaddling decisions and nap schedules. Instead of idling away hours stuck in a hospital room, we got to bounce and sing and dance. Instead of her motor development being put on hold, she figured out how to and is now obsessed with rolling from her back to her tummy. We took a road trip to visit our family, we took her to get bagels, we went shopping for clothes. Typical stuff to some; brilliant days for us.  

Instead of waiting for our lives to start until after the first year’s worth of surgeries, we got to know S as her own person. She is, physically, absurdly strong. She is social. She likes to look at other babies. She likes to move. She likes for you to make silly, loud noises in her face. She likes to be aggressively rocked and rolled. She’s not quite sure what to do with all the dogs, but she is vaguely intrigued.  She gets really mad if you're taking too long with the bottle or with putting her to sleep. She doesn’t hold a grudge, though. She isn’t afraid of anything.

I have some more thoughts that aren't so upbeat that I will probably try to process and write about soon, but for now, I have a hilarious four month old baby who sleeps decently. 

Postscript: I am also so grateful for everyone's support and kind words. Hearing from old high school friends has been particularly wonderful. Thank you, everyone.  

Start from the Top! Clefts.

She will not remember these first few surgeries. Or who Manny Diaz is. 

Left cleft. I have written about this dang cleft so many times, it’s sort of boring. It’s part of her face and I love it. I don’t like that, if left untreated, it would keep her from eating anything besides formula and from ever being able to talk. She’d probably also be an excessive drooler. But, I do like how even without eyelids, she has control over her little, scar-tissue covered eye. When she is excited, she pops that thing as wide open as her “good” eye and when she’s upset, it forms the same triangle-ish shape. I love when she smiles and the errant part of her lip on the outside of the cleft flits just that much more outward. Admittedly, I also think it’s funny when drool floods out of the cleft because S could really not care less about it.

Right cleft. We had no knowledge of this cleft before she was born. I don’t know why no one caught it. Maybe everyone was so focused on the thing causing the huge hole on the left side of her face, they missed or didn't think much of the unique pattern of missing bones on her right side. We might have been freaked out if we hadn’t any knowledge of the other cleft. But, when she arrived and we noticed the clefting pulling down her eyelid and up her lip, we were just like, “Oh, S, Ok. Sure. Why not.”

Palate cleft. When we asked her surgeon how bad the palate cleft is, he pronounced it, “Crazy bad.” We thought his answer was sort of hilarious and, more importantly, true. The palate is the roof of your mouth. Most of us never think about it as a thing because a normal palates is one, solid piece of tissue that extends from jaw to jaw and connects to your throat appropriately. However, when S yawns, you can see about 10 different levels of tissue piling up on each other with each piece more randomly gullied than the last. In her discharge papers from the NICU, I read that she has a “complete” palate cleft. No one had mentioned that to me before. That terrified me, it sounded so final. She will need multiple surgeries to repair it and it won’t be repaired until she is five or six. The surgeon told us that on palate clefts this severe, they like to wait so that, basically, they don’t screw anything up. They will need to harvest a lot of tissue and they will have to connect all sorts of arteries and things that are beyond my liberal-arts educated mind’s ability to comprehend. Before the repair, they will insert an appliance to serve as a makeshift palate so that she will be able to speak. S is so tough. I have no doubt about her ability to handle the surgeries. The speech thing though, I do worry about that. Imagine trying to make sounds recognizable as words without a surface for your tongue to click off of.

We met with her surgeon and got the following general surgery plan for the initial surgery. This is how I remember it. I pretty much don’t understand anatomy or how science works so this is probably largely inaccurate. They will attempt to repair everything on the right side. She is missing some bone, specifically the bone of her lower orbital rim. No big whoop, they’ll just borrow some SKULL bone to put there. My eyes got real big when I heard that, but her surgeon reassured us plebes that skull bone is the best because it easily regenerates and is more likely than other bone to stay alive once reinserted. On the left side, they will insert something called a distractor (sp?) that will connect the skin on either side of the cleft. The goal here is to move all the tissue hanging down on the outside of the cleft up towards the middle of her face. She is also missing bone from her orbital rim on this side. I honestly can’t remember if they’re inserting bone on the left side in this surgery or waiting until the next surgery, during which the plan will be to close up all the soft tissue on the left side.

We do not yet have an exact date for the surgery. The surgeon has to make a model of her skull to practice and meet with a whole team to plan his exact moves. He also might need to specially manufacture the distractor. In any case, the surgery will be soon, like, within a few weeks. It should last approximately four hours. She will likely be in the hospital for 7-10 days. When I asked the surgeon what we would need to do to help her recuperate at home, he said, “Bottles. Kisses. Snuggles.” I think we can swing that.

Update on her eyes. The surfaces of both eyes look great. Her right eye can track on target and can see at appropriate distances. The ophthalmologist didn't mention baby glasses; we just scheduled a check-up appointment in three months to make sure everything’s still progressing well!

Update on her hair. It’s growing back in. She is looking significantly less Peter Boyle-y. SADLY. 

Start from the Top! Nose. Ears.

Lazy Sunday

Nose. Perfection. And not just how it looks. Because of course, I’m her mother, I think her entire face looks perfect, but the nose, it works perfectly. Oh sure, formula pours out of the right nostril sometimes. But she and dead owls don’t give a hoot about that. She breathes out of her nose. Without issue. Every day. I will be grateful for this always. We went a long time without knowing if she would be able to do so.

Ears. So far, so good. We met with her ENT doctor a couple weeks ago. Fluid is already building up in there, which the doctor said is completely expected because of how wide her palate cleft is. No infections yet. When she was only a few weeks old, I thought maybe she had some hearing loss issues because she never really seemed to startle to sound. And we have the world’s loudest beagle. Who barks constantly. Through naps. And all other times. S never stirred! But, when she began to interact more with the us and her surroundings, I realized that she did in fact respond to sounds when awake and that she is just a chill baby who, while in the womb, probably got accustomed to beagle racket.

Next step: tubes! Like seemingly every other baby in existence (in America at least), S will be getting tubes. The ENT will put them in during her first surgery. They will be tiny baby tubes that will eventually fall out, so the ENT will put in another set of tubes during one of her later surgeries.  

We meet with her craniofacial surgeon tomorrow morning to discuss a game plan for her initial surgeries. We also should be getting a final diagnosis of the specific clefts S has. After a simple visual examination, the surgeon hypothesized that each cleft could be a Tessier 4 or a Tessier 5 cleft. They are both super rare, but if either of her clefts is a 5, that is just insane. Like, I found an article from 2006 that mentioned there were 30 known cases of Tessier 5 clefts. On the one hand, how cool to be that rare, on the other hand, I'm not so interested in her being anyone's case study. On one more hand, she's tough and if it could help another kid, being a case study would probably be OK. She underwent a CT scan a couple weeks ago (the same day as the ENT, thank goodness her Gami was here!), so the surgeon hopefully has all the information he needs to say for sure what is going on with that face of her's! 

Start from the Top! Hair. Eyes.

Always in motion.

Hair. Well, basically, she looks like Peter Boyle. This isn't anything medical-related. It's just worth acknowledging. S has the DNA of many a ginger, but, for now, the hair has yet to settle on a color.

Eyes. The drama begins. As I've mentioned elsewhere, we were forewarned that she would almost definitely have a non-functioning left eye and that the eye might even need to be removed. The left eye is completely exposed as each eyelid is only half-formed. The NICU doctor referred us to the pediatric ophthalmologist who referred us to the occuloplastic surgeon, which I didn't even know was a thing. Turns out they make the big bucks doing eye lifts for vain old ladies and dudes, but occasionally work on medical cases. The surgeon told us that he needed to perform a comprehensive eye exam in collaboration with her ophthalmologist under anesthesia and that they needed to suture her left eye shut to protect it from infection.

So, we did that, and spent the night with her at Dell Children’s, and it was pretty terrible, but we got through it. S kept it together better than either of us. All of the little-kiddo monitors were still too big for tiny, six-pound S and kept making a terrible racket even though nothing was wrong. I basically cry-begged the nurses to unhook one of the monitors so that someone in our little family might get some rest. They obliged, she continued to breathe and her heart continued to beat, we left the next day. 

The outcome of all that business is that her right eye is undeniably and completely functional. Her left is about half the size it should be. A smidge of light gets in there, but there is no hope for vision. The good news is that it doesn't pose any sort of threat to her and there is no elevated risk of infection, so it doesn't need to be removed right now. Maybe in the future. Real talk, I'm not sure how she gets through middle school without a prosthesis (which are pretty amazing these days), but we'll deal with that in a decade or so. 

Oh, also, that crazy poodle knocked out her sutures after a couple weeks. We went to the ER and basically paid them $150 (no political opinions!) to have them shrug and page her surgeon, who said she was fine. I complain, but obviously it was worth it. We went in the next week and he completely removed the sutures, we lubricate the eye every couple of hours, it remains open and looks all pink and healthy.

Next step: an appointment in September with the ophthalmologist to get S some baby glasses that will act as safety goggles to protect the good eye. You will all die from cuteness. We will only see the occuloplastic surgeon again in the near future if something goes wrong. The eye lids on each side will be repaired during each side's respective surgery. Her cranio-facial surgeon thinks that he'll be able to repair them himself, but will call in plastics if necessary. 

I plan to try out at some point the eye patches that my mom made from instructions from Aunt E and her engineering compadres. If it works out, we might enlist her Aunt L and her incredible sewing skills and eye for patterns to design some more. I don't think S has to be ashamed of the eye, certainly no one in her family is. I anticipated weird looks from strangers, but except for a couple of asses in Starbucks one time, most people see her and coo at her like any other baby. But, I know that will change as she gets older. Adults and especially other kids will become increasingly curious and possibly unkind. I want S to have as many options available to her as possible. Hopefully, she mostly won't give a crap about what people do and will be completely fine with presenting her left eye in all its glory to the world. But some days, she might just not want to deal with it, and on those days, I'd like for her to be able to strap on a fabulous, comfortable alternative if she feels like it. 

Her right eye is gigantic and blue, just like her Aunt E’s. It's expressive and curious and one of the most beautiful things I have ever seen. 

Who is S? Why should I care?

Hello world.

S is our daughter. I call her, "poodle." And I don't know why you should care. It's my blog, dummy!

D is her father, my husband. Who may or may not be contributing to this blog, who knows. He is occasionally hilarious and insightful, so I hope he does!

ANYWAY. S is a completely normal baby who happens to have two rare facial clefts, one on each side of her face. One cleft has caused a huge hole in her left cheek, from her lip to lower eyelid, and the malformation of her left eye. The other cleft pulls up the right side of her upper lip to make it look as if she's perpetually, crookedly smiling at you and has resulted in a frankly fabulous small tear drop shaped cleft on her lower eyelid that I will miss. Both clefts have wreaked absolute havoc on her palate.

She will face problems with virtually every part and every function of her face. She has six doctors and counting. She will have approximately one zillion surgeries. The goal of this blog is to keep everyone who cares about her up-to-date about the goings on.

Because of my job, I am not allowed to have political opinions on the Internet. This might disappoint some of you who know me because sometimes those opinions may be amusing. For the vast majority of the rest of you, you won't have to worry about dredging through the latest outrage to get to the outcome of S's most recent appointment. Huzzah!

D thinks comment sections are just troll-bait, but I think only three people will read this and they will all be nice. So, comment away for the time being! I would sincerely love to hear from almost any of you about almost any thoughts you'd like to share. Random 8th grade acquaintance? 3rd cousin twice removed? Friend of friend of friend? Michelle Obama? LENTIL?!?! Drop by, say hi, don't feel weird about reading this. I understand that the Internet is for stalking.