Monday, January 18, 2010


Scenerio #1: Mallorie is NPO for a certain number of hours, has an IV placed after who knows how long, is put under general anesthesia, and has her eyelids sewn together over her right eye. We are told it will probably be for life. We wait anxiously through the surgery and the recovery time, and drive home.

Scenerio #2: Mallorie has an appointment with a new opthalmologist. The resident she is helping to train, and the ophthalmologist both spend hours, asking good questions, and really listening to things we can tell them about Mallorie. Things you wouldn't know about her if you simply knew her gene make-up. Or knew another child "like her." The ophthalmologist does a really thorough exam, and agrees that surgery is NOT the best or first option for Mallorie. And that really good lubrication and effective taping at night can possibly accomplish the same thing. Tells us that we are doing a good job of this right now. Gives more specifics (like using an ointment at night with the taping, and not just a gel or drops). Says she will see Mallorie for a follow-up appointment in 2-3 months, unless we have a problem and need to see her sooner. Then we can just call, and have her seen on an emergent basis.

If I knew how to dance, I would have to record it for all of you to see right here. We had scenerio #2 today. And I am dancing in my heart. The new doc did say that in children under age 5 yrs, if an event prevents visual input from reaching the brain for any prolonged period of time, vision is lost. Permanently. I choose today not to worry about that. If that is the case for Mallorie, then what is done is done. It is still preferable to other things that could have happened to her, and I choose to focus on the gift of being free to cancel out on the surgery which we felt rushed into, and had no peace about. I am thanking God for the respiratory problems that made us have to cancel the surgery plans, and gave us time to meet this new doctor. Plus, I know some really happy children who are visually impaired and even blind. I don't expect Mallorie to start losing her joyfulness any time soon. And her unaffected eye is good, externally, and in the back (inside). She doesn't need glasses, and everything about that eye looks good to the doctor.

I left that office today with a weight off my shoulders and so grateful for good medical care, which includes listening, listening, listening.

Saturday, January 16, 2010

Update on Mallorie

For me, not updating the blog doesn't always mean bad ... usually it just means too busy with work and then trying to catch up when I'm home again. But, sometimes it means things feel bad. The pause this time was from my low mood. I'll update about me, later.

I can't even remember what I've said here about Mallorie's eye. Mallorie's always had some "eye issues." And I've always been sort of fixated on her eyes. While I was pregnant with her, I remember looking at the Living with Trisomy 13 site and noticing that a good number of the photos showed beautiful children whose eyes appeared assymetric, and in the one prenatal picture we had of her, it appeared that Mallorie might be missing an eye (to me ... which is silly, now, considering that was probably something the doc doing the ultrasound might have mentioned, right?). But I was prepared for her to have only one eye, and tried to prepare the kids and John. But when she made her appearance, she had 2 very beautiful, bright eyes, and she seemed to watch the world very intently. However, we began to notice that in several of her NICU pictures, she would have one eye open and one closed, and sometimes when I'd call the NICU to ask for a late night update, the nurse would tell me, "She's peeking at me right now, through one eye." I wondered if the eye that was always closed had some sort of problem, was slightly smaller, had weak eyelid muscles? It took a long time to realize that the left eye that was always closed while she was "peeking" at us was not the problem. It was the right eye, which would stay open during sleep, which was the problem eye.

Then we noticed a hazy area over a section of that eye, right in the zone where the eyelid stayed open while she was sleeping, and others noticed it, too. John even tells how once a nurse tried to "wipe" off the hazy surface with a q-tip during a hospitalization, thinking it was a bit of an eyelash or something. Makes me cringe, now, thinking of that, but what did we all know? We started her with an eye doctor, who said it was due to not fully closing her eye, and maybe a decreased blink response, and suggested different drops and ointments to manage the problem, none of which caused any improvement, but might have kept things from progressing too fast. We also started taping her eye closed, because another mom told me that is what they do for her son. When I asked the eye doctor about that, she agreed it might help, as "lids are better than lubrication."

Then I had surgery, and during that time, Mal got extremely dehydrated, and suddenly what looked like a superficial haze over her eye surface turned into a depressed area. We have been told that the only appropriate treatment at this point is to get her eyelids sutured together to allow the eye to heal. Remembering lids are better than lubrication, I "get" this plan, and there's stuff all over the internet about this. Some sites say there are really no "risks" associated with the procedure. Others list things such as the stitches tearing through the thin tissue of the lids and causing permanent damage to the lids and scarring.

Here are the risks I think of.

Permanently losing visual input (if the procedure is permanent, as the doc suggesting this surgery had casually said it probably would be). Her first eye doc said specifically not to tape her eyes during the day, because she would lose vision.

Risk to her from being put to sleep for the surgery.

She has always done really well being put to sleep and had no problem being extubated. Except once. And that time kept her in the hospital for almost exactly a month, most of that time in the PICU on a vent. It was a month I never want to relive. Our entire family suffered greatly in that month, and we came close to losing Mallorie more than once. Dr. B had to talk me down at 3:30 am when I was losing my mind because I thought they were going to kill Mallorie through just not seeing HER. There was great and continued pressure to agree to a surgery that I believed in my heart she did NOT need, and would have put her at more risk at that particular point in her recovery. I learned through that hospitalization, that as hard as it is to fight, all alone, for what you believe in your heart is right, you have to. Her primary doc during that hospital stay told me at the very end of her stay that he learned from her, and hoped he would be a better doctor because of it. That we were probably right about Mallorie, and they were probably wrong. And that she was lucky we had stood firm.

Mallorie has had respiratory problems for over 2 weeks, now. It started with a cold, which she got over VERY quickly, faster than the rest of us. (THANK YOU, milk mommies.) :) But she has continued to have nasal congestion and (obstructive) apnea from just working so hard to breath through nostrils swollen closed, and a dry throat. She snores, snores, snores, snores, ... and then poops out. She has had stretches throughout each night (except last night) of oxygen saturation levels in the 70's, and has to be continually repositioned, repositioned, repositioned, until she will breathe again. We have to run oxygen near her face at night (not good for keeping the eyes moist, BTW) just to keep her levels above 85%. So we've obviously had to postpone the surgery because of her respiratory situation, and all the time I've been praying that God would either just heal her eye, or that someone would come up with an alternative to needing to put her to sleep to sew her eyelids closed. Neither of these seems to be happening (yet). And I'm also praying that I will feel more peace about this procedure if it is what needs to happen. We obviously are not willing to risk the loss of her eye, just because we don't like the sound of the plan being offered.

And then I found this a couple of days ago. Cyanoacrylate is ... Crazy Glue, Super Glue, whatever you call it.

Please pray that someone whose opinion about Mallorie's eyes matters, would have open eyes and an open mind to at least wonder about this as a less-risky alternative to anesthesia. Maybe just as a first resort, holding the possibility of permanent closure as a back-up if this isn't successful. I know, I'm asking for a prayer for a miracle. But that's what I do these days. Luckily, I know a God who does miracles.