Thursday, July 26, 2012

A Diagnosis, or three.

Whew. What a morning.
Praise the Lord, because whether we honestly believed it, or just gave it lip service, the outcome was, and has always been, in His capable hands.

First, a summary of where we've been, where we are, and where we're going.

As you probably already read (but I can never remember exactly what I've written and what has just been in my head) We went in for this anesthetized exam for a few reasons.

  • Cora's eyes were not tracking. They were turning in. The right one worse than the left
  • One of her eyes was not formed completely
  • She had what appeared to be scaring at the base of the retina, near the optic nerve, in both eyes

After a peaceful evening, a smooth bedtime, and a 2:30am nursing, we woke Cora at 5:45am to be at the surgery center at 6:00. Here's about how the next 2 hours went: Check-in, signature, signature, yet another signature, conversation with a nurse, conversation with an anesthesiologist, conversation with the pediatric opthalmologist. Prayer with the surgical team. Hand sweet young thing off to anesthesiologist. Cry. sit and wait.

At just past 8am Dr. P and Dr. S came out. 

Dr. P spoke first regarding the "scaring", which we shall henceforth refer to as "Atrophe". The atrophy near her retinas (surrounding the optic nerve) is bilateral (both eyes). It is also identical in both eyes. He supposes it has been present since she was in utero. In other words, she was born that way. He said atrophy is not progressive. It's essentially a developmental anomaly. Dr. P does not think this poses any issue to her at all, and does not require a follow up.

Dr. S then spoke about the malformation of her eye, which we will now refer to as a "Coloboma". Her left eye (yes, that's right, the eye that actually looks better and turns less) is not fully formed. This is a reasonably common problem. Ok, not common perse, but he sees a handful of them per year, and while such a diagnosis will effect her peripheral vision, she won't know anything different and it won't keep her from doing any normal activities. Any. The only thing they'll have to watch for as she ages (think 20's to 30's and beyond) is potential retina detachment. Rare, but it happens simply because the nerve doesn't have as much eye to hold on to back there since it isn't fully formed. Did that all make sense?

Finally, Dr. S discussed her eye turning, which we will now call Strabismus. This is relatively common. I bet you can think of at least two people you know who have a wandering or turned eye. Cora's her eyes are misaligned in two different ways.

Her treatment plan: Dr. S has prescribed a patching regimen for Cora. Patching only, no glasses. He "checked her prescription" (no idea how he did that) while she was under and said her eyes do not need glasses. We will patch her better (left) eye (the one with the coloboma) for two continuous hours, once daily, thereby forcing her to use that right eye to see. It's like a work-out for her eye.  This is done so that the neural pathway from the worse eye to the brain is well maintained. Without patching,  the young brain may decide the right eye isn't worth the work, and turn off that pathway. We don't want that to happen. We will see Dr. S again in three months at which point he will likely schedule her for surgery to correct the strabismus. 

Correcting the strabismus will involve tugging gently on the muscles of her right eye such that it is straight. This will not only be done for aesthetic reasons (so she looks symmetrical, so to speak) but also so that she can more easily focus.

When the Dr.'s were don'e talking to us the nurses brought me a crying, adorable, warm, thrashing, infant. She didn't quite know what to do with herself. She was disoriented, couldn't latch to nurse, wouldn't fully open her eyes, and had horrible medicinal smelling breath. After a few moments she would latch, but only for a second before sitting up and flailing for a bit. Then back down to nurse. This continued for 15-20 minutes. Sometime around then I handed her off to daddy so I could go to the bathroom. When I came back she was fussy, but not flailing. She was focusing a little more, and seemed to be more present. As I picked her up and carried her out into the larger room she really came back around, doling out smiles and trying to wiggle out of my arms. 

As much as I thought she'd fall asleep in the car and take some epic nap, she didn't. Nor did she fall asleep when we got home and I attempted to put her down for a nap. "mom", I could hear her saying, "I napped for, like, 45 minutes on an operating table. a girl's gotta play!" So, she's upstairs with Jonathan being her normal self plus a little feisty streak left over from the anesthesia. 

Thank you so much for your prayers - we're so grateful for friends that care for our kids. It looks like we've got a plan for the next three months, and then a potential surgery, so I'll keep you informed as I learn more.

Saturday, July 21, 2012

Add it to the list

... The list of reasons I'm so glad Cora breastfed.

 Let me explain. This afternoon I received what was possibly the most welcomed phone call with possibly the most relieving information I can remember in recent history. It was dr. So. As in, he called me. A pediatric ophthalmologist called me directly. Not the nurse, but the actual specialist. I was floored.

 Anyway, the short version is (because I'm typing this on my phone) cora cleared all her blood draw labs. AND:she can be breastfed all the way up to 4 hours before being anesthetized. After the scheduling nurse told me she needed to be npo for 8 hours, I did some research. Turns out, breastmilk is a category unto its own. Because it is so quickly digested, the surgical anesthesiologist deems it safe within four hours of go time. Nothing else is approved, just breastmilk.


 I know this probably didn't sound like a really big deal (not nursing for 8 hours) but to me, it was huge. The prospect of listing to my baby cry all night long The night before such a procedure was daunting. Now, had the Dr maintained it was necessary. Of course I would have followed his instructions, but I am so grateful it isn't necessary. So, so, grateful.

A mom's eye view

In case you were wondering what Cora's eyes look like (or on case you hadn't already noticed), Here are a few pictures. You'll notice that sometimes (most often) the right eye is turned in, but sometimes it's the left eye. If you look quite closely you may also notice that the right eye is a tiny bit lower than the left eye. Sometimes when you're with her, her eyes appear perfectly normal, but they almost always look a little off in photos because of the still-shot.

Yes, we noticed all of these things when she was quite young. Yes, we took our concerns to our pediatrician. Yes, I worried. But the VAST majority of the time, in the VAST majority of children, these kinds of things work themselves out within the first four to six months. Our pediatrician said it would be most prudent to wait it out and see what happens. I'm not kicking myself for following her instruction, but I guess a part of me does with we had the benefit of foresight and had known this would still be an issue so we could have had it looked at sooner.

Saturday, July 14, 2012

Save the date

Thursday, July 26th

That is when Cora's exam/potential surgery is scheduled.
Although I know this should probably be the least of my concerns, I think the thing I find most daunting currently is the prospect of not nursing her at all the night before (no food or drink 8 hours prior is the requirement).

Please bathe our little family in prayer, would you? I'm not even sure what to pray right now, but He knows, and I'm quite sure He intercedes for me when my words are totally inadequate. I guess our biggest hope would be that the two surgeons (Dr. P and Dr. S) would be able to get a very clear view of what is going on/has occurred, such that we have a very clear diagnosis and treatment.

Sigh. I'm a wreck.
I just want this all to be over with so I can be on the other side looking back on a completely successful procedure that gave glory to God. Because that is what I want it to be.

Thursday, July 12, 2012

Another day, another doctor

Today his name was Dr. Pan, and he was a retinal specialist.

Monday we saw Dr. Sauberan (Dr. S) who told us that Cora had what he called "scaring" behind her eye, around the optic nerve. He also said that her right eye did not form 100%. Both eyes turn in occasionally, the right one more often. Usually Dr. S would have prescribed glasses for the turn, possibly a patching regimen as well, but he wanted a specialist to look at the back of her eye first to make sure there wasn't something related to that scaring that could make her a good candidate for corrective surgery.

So, he referred us to Dr. Pan (Dr. P) who works as a retinal specialist, mostly with elderly folks with glaucoma, and those with diabetes. He is a really nice Dr. who also happens to have a 6 month old baby. Because Cora is a squirmy worm of a child, he couldn't get as good of a look as he would have liked (we kinda knew this would happen going into it, as Dr. S warned us) He saw enough to make a few conjectures:

  • The scarring he can see looks like it is old. Not new. It looks like it is done, not continuing. I emphasize that he made this remark about the scarring he can see, because it is possible that there is more he can't see. In his words, he got only a "very rudimentary look" at the back of her eye.
  • She could have a number of things going on behind her eye, and the only way to get a good look is to put her under anesthesia. This will happen some Thursday morning in the next month (the scheduling nurse will call me) and will be a team-effort between Dr. P, and Dr. S.
  • If, when they put her under anesthesia, they find a fixable problem, they will intubate her and perform surgery right then and there. 
  • If they don't find a fixable problem, then at least Dr. P will have taken a professional, and lengthy, look at the back of her eyes, enough to say what the pressing issues are. At that time Dr. S will probably prescribe either glasses, or a patching regimen, or some other course of action.
I came away from the appointment today with more (helpful) information than I thought I would. I was pleasantly relieved to hear him say that it doesn't look like the damage is continuing, but rather that it looks like it occurred, and stopped occurring. Again though, he emphasized, he didn't get a good look.

Truthfully, I've been paralyzed by fear lately - fear that my daughter's vision is not only damaged, but continuing to deteriorate; fear that her damaged vision may not be improvable with glasses; fear that what vision she does have won't be enough to do things I dream of her doing like driving, bike riding, reading, etc. The fear has kept me up nights. It's heavy, and it infiltrates my daily interactions with others - like a barrier of dense fog. 

Fear is so ugly, and it serves no purpose at all, except to rob you of peace and joy. But man, it seems impossible to be free of fear when there are so many unknowns.

Monday, July 9, 2012

Cora's sweet eyes

well, that wasn't what I had expected.
To be fair though, I had no idea what to expect.

I haven't said too much about Cora's eyes yet because, frankly, until now there hasn't been much to say.
Cora, like all newborns, liked to cross her eyes. If you've had a newborn, you know exactly what I mean. But by four months she hadn't outgrown the habit. The pediatrician wanted us to wait until six months and see if they'd straighten out but they (namely her right eye) didn't. She recommended us to the only pediatric ophthalmologist in town, Dr. Sauberan.

So, at 1:45 today, squarely in the middle of nap time, Out we went to see the good doctor. It's important to note that an ophthalmologist is a step above an optometrist - which is a God-sent, because we don't have Cora on our vision insurance. Hurray for Medical insurance coverage of Ophthamology!

So, he dialated her sweet little eyes. We went back out into the waiting room for thirty minutes with an overtired baby. We went back into the exam room with an overtired baby. The good doctor looked at the over tired baby's eyes. Here is what he saw:

Both eyes cross. The right one crosses more. There is something wrong at the base of her eyes - at the optic nerve - but it's difficult to tell what that is. Again, the right one is worse, but the problem affects both eyes. He said it appears as though one of two things is happening. Maybe both.

First, it could be that the eye didn't form all the way. Eyes start out flat and then wrap around themselves during development like a taco. Her right eye is missing a little piece at the bottom, almost as though the eye never finished forming.

Second, the doctor noted a fair amount of what he called "scarring" at the base of the optic nerve. Both eyes are affected, but again, the right is worse. He said that this scarring (which he hasn't seen before) could have been caused by an infection (although Cora has never had so much as a mild fever, let alone a cold or infection) or possibly by something in utero.

The first of these two things, he sees all the time. The second, he's never seen in a baby. So, immediately we were referred to the retinologist. We see him Thursday afternoon.

Prognosis? Yeah, I'd like an answer to that one too. The doctor is encouraged that Cora appears to have very normal vision on the outset. She follows objects, brings things successfully to her mouth, focuses, swaps items from hand to hand, is beginning to crawl, etc. He is encouraged that she appears to have good vision. What we really don't know though is whether what is wrong with her eyes is done, or is continuing to get worse.

So, after we see the retinologist on Thursday it is very very likely that Cora will be scheduled for a more serious optic nerve evaluation under general anesthesia. This would be performed in tandem by the retinologist and the ophthalmologist. Whew.

The good news: There aren't any growths, tumors, or any other foreign bodies present behind Cora's eyes. While rare, that does happen. Also good news is that she isn't blind (we never really thought she was, but hey, count your blessings!)

I'll update as I get more infrormation. Right now I'm in a fog anyhow, just trying to digest what I've heard. I'm afraid for my darling baby for all the normal motherly reasons - you know, that she won't be absolutely normal, that she'll face challenges, that she won't be able to do vision oriented tasks like driving, reading, bike riding, etc. But just as we are confident that her very life belongs to the Lord, we are confident that He will give her the tools she needs (and us the tools we need) to overcome any challenge to His Glory.

That may have sounded well thought out, but I assure you I'm forgetting a lot. More to come as I remember it.