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.