(A continuation/update of Nora Left Eye Lopes )
Yesterday I received an email from a reader asking me about the progress of Nora’s ptosis, and it dawned on me that I never actually posted an update on the blog. I’ve kept friends informed through Facebook, but hearing from this woman (who also has a baby with congenital ptosis) made me realize that I owe an update to blog readers as well. I am always hopeful that my experiences can help and provide information/insight for others, so here’s the spiel (I tried my damndest to keep it short but, choice of husband aside, I’m pretty bad at keeping things short. Ba-dum ching! ):
Soon after my last (and also first) blog post about Nora’s ptosis, we had our next ophthalmologist appointment. The diagnosis up until that point was “mild” ptosis in her right eye that was (so far) not impacting her vision or development. We were told to patch her left eye in order to force her to use the right one, with the purpose of maintaining vision in that eye and preventing Amblyopia, aka “lazy eye.” This patching phase is when she earned her “Nora Left Eye Lopes” nickname. Because, I mean, just look at this photo and tell me she is not one badass bitch:
You can’t, right? I know.
So yeah. We left that first appointment thinking this was a relatively minor issue that we’d just have to watch, and if down the line we wanted to consider surgery for cosmetic purposes, that would be an option. Thankfully, the ptosis was not severe, and surgery was not something we needed to even have on our radar yet.
So imagine my surprise when I took Nora to the next appointment (Eric was traveling for work) and was told that, in fact, BOTH eyes had ptosis (I kind of already suspected this, but also kind of talked myself out of it and chalked it up to my BFF, Paranoia, rearing her ugly persistent head). The doctor classified the right eye as “severe” and the left as “moderate.” No “mildness” about it. While Nora’s vision was thus far intact, the extreme head-tilting she had to do in order to see would likely start to affect her physical development.
Surgery was recommended.
The good thing is that even though this was not at all what I expected to hear, I remained totally calm. I listened to the doctor’s words and stayed completely composed, because instinct kicked in and I knew I had to be strong for my baby girl.
I cried like a little bitch.
The recommended surgery was Bilateral Frontalis Sling, where an internal silicon sling is inserted to connect the lid muscles to the eyebrow muscle, so the brow muscle can lift the lids for her. Using silicon as the material for the sling is usually only a temporary solution– as a baby’s face grows, the silicon does not grow with it, and therefore the lids typically start to droop again after a period of time. An alternative material to silicon is a thigh tendon (aka “fascia lata”), taken from the child’s leg through a very small incision. This is typically a more permanent solution, as the tendon will grow with the child’s face. It also has the added benefit of not being a foreign object in the body, and therefore infection or rejection is unlikely. Unfortunately, the tendon can not be used until about 3-4 years of age, because it is not developed enough before then. So our only option at this point was silicon.
Luckily, through the amazingness of social media (Facebook gets a bad rap but I’ve already nominated Mark Zuckerberg for a Nobel Prize), we were able to locate and be connected with one of the top doctors in the country for this kind of surgery: Dr. William Katowitz at Children’s Hospital of Philadelphia (CHOP). During our consultation with him, he agreed that Nora’s case was severe, and surgery was scheduled for February 21, just a few days shy of her 6-month birthday.
The nice thing about waiting for a surgery date to arrive is NOTHING.
THERE IS NO NICE THING.
I thought I was handling the anxiety of the approaching date well, but in hindsight I was just channeling my anxiety into other aspects of my life. It was anxiety just the same. I didn’t eat well, sleep well, or think well for months. Wine through a straw helped. Until it inevitably didn’t.
Finally, the date arrived. We drove to Philly the night before, stayed at a hotel, and arrived at CHOP around 8am the next day. Here’s a visual summary of surgery day:
Nora was a brave (re: oblivious) little saggy-cheeked champ, Eric befriended every dog he came across, I ate my feelings/smiled so I didn’t cry, and then I sang to Nora post-surgery and mentally transported myself to a place where I wasn’t staring at my bloodied, swollen, groggy, whimpering child.
Seeing her after surgery was terrible. It was a long car ride back to NYC. I sat in the back with her, but covered her car seat with a light blanket as she slept, because I couldn’t bear to see the evidence of what we had elected to do to her. Yes, it was medically advised and yes, it would probably be better for her in the long run, but in that moment all I could think was “I caused her this pain.”
Well, no worries, because as it turns out, my daughter is a fucking warrior.
We got home and she slept through most of the night, waking only once for a bottle because, due to the anesthesia, she hadn’t eaten in about 24 hours. After a 3am feed she went right back to bed and, I shit you not, woke up like this:
Happy as a goddamn clam.
For real, WHO MADE THIS CHILD?! It seems that somehow, despite the fact that I carried and birthed her, she inherited zero of my DNA. Because if it were me, I’d be handling the situation with exactly this much grace:
As you can somewhat see in the photos of Nora above, the surgeon tied the sling at four separate incision sites, two on each brow. He then put in a temporary stitch on the bottom of each eye, for the purpose of keeping her eyes cinched tight post-op, in order to prevent her from scratching a cornea.
Two days after surgery, we returned to CHOP and he removed the temporary stitch. The results took my breath away (it was at this point I realized I hadn’t, in fact, breathed in 2 months):
Nora instantly stopped tilting her head back, and we were able to see, for the first time, just how beautifully blue her eyes are. I praised Jesus. Yeah, I’m jewish, but still. This felt like a moment for Jesus to be involved. Allah, Buddha, whoever Wiccans worship– everyone was welcome at this prayer party.
Since then, Nora’s eyes have “settled” a bit, which is to be expected with this surgery:
As far as I’m concerned, her eyes now look typically-developing. Yes, sometimes her right eye still looks “droopier,” especially when she’s tired. And yes, there’s still a little bit of a “sleepiness” to them, but it’s so minor I’m pretty sure I’m the only one perceiving it. She sometimes sleeps with her eyes a bit open, which we were warned was a possible side effect, but it has not had any consequences other than to kinda creep us out.
So all in all, a huge success with virtually no complications!!!!!!
Not how my life works.
About 3 months after surgery, Nora woke up with a swollen eye, and one of the suture sites on her brow looked irritated. We went to the opthamologist and they gave us some cream and didn’t seem too concerned. Weeks later, the irritation had only gotten worse. We went back to the surgeon at CHOP.
It turns out that a small cyst has developed, a minor and fairly common healing complication. The cyst varies in its appearance, and every so often it pops, draining some pus and blood (I know, gross– but this is actually a good thing). Some days, it looks like nothing more than a small little scab on her brow. Other days, it takes on a life of its own.
Fortunately, much like the dude above, Nora is blissfully unaware of its presence and, in terms of cosmetics, gives a total of zero fucks. Ah, to be no years old.
It isn’t causing her any harm or discomfort, aside from when we have to put hot compresses on it, squeeze it a bit, and apply the cream. That, she does not care for (#grossunderstatement).
The doctors seem hopeful that the cyst will eventually resolve itself and fully drain on its own. I’m not so sure. It continues to fill, pop, scab, and then the process begins all over again. If it doesn’t improve soon, we will have to consider surgery as an option.
I know– another surgery?! Whhhhhhyyyyyyyyy? Especially for such a minor thing that only seems to be a cosmetic issue at this point?
Well the problem is, the more the cyst opens, the more likely it is to get infected– and if it DOES get infected, and THEN the surgeon goes in to remove it, there is a much higher chance that he might have to remove the sling, too. And if that were the case, we’d have to wait for the cyst surgery to heal, and then do ANOTHER sling surgery. Granted, this is a worst-case scenario, but the fact that it’s even in the realm of scenarios makes me want to ugly cry, Kardashian style.
So nothing’s perfect. Which falls under the category of “duh.”
But overall, we are so grateful for the surgery and the results, despite the non-perfection. Nora can see. People no longer look at her and wonder if something is “wrong” with her (you might think that’s me being cray, but I actually had a former student’s parent, pre-surgery, ask me exactly that– “Is she ok? Is something wrong with her?” It was the first time in my life that I considered murder as a viable conflict resolution tactic.)
Nora is now completely thriving in all areas of development, and she’s just the happiest little rope-a-dope. I mean look how thrilled she is about a banana that I bought on the street for 15 cents:
And yes she’s eating that banana naked because do you really expect me to feed AND clothe her? What am I, a wizard?
So that’s where we are in our ptosis journey. We have the possibility of cyst-removal surgery, as well as the eventual possibility of fascia lata sling surgery to replace the silicon sling a few years down the line. All that being said, Nora is happy, healthy, and thriving– we are thrilled with our decision to surgically treat her eyes, and have never looked back (
no pun intended).
A huge thank you to ALL those who have supported us along the way (and there have been so SO many of you). The brightest, most silverest (back off, spellcheck) lining of this whole experience has been a renewed faith in the human spirit. Anyone who thought they might be able to help, did. We were connected with the best doctors, given the most helpful advice, sent the sweetest gifts, notes and kind words. There is simply no way to accurately express my gratitude, so in lieu of the perfect words, please accept this photo of Nora making the world’s most absurd face:
(are YOU exhausted? I am)