Saturday, December 17, 2016

Cora's update

Hello many loving people who have been thinking about us and wondering (asking even) if I am going to type out an update. Assumably, you are referring to an update on our situation here in Michigan. Yes, I will get to that, but not tonight. That is a long story, that's far from over, and I'm not sure I'm ready to put it into words yet.

No, tonight I am here to get out my summary of Cora's latest procedure before all the details fly out from between my ears, never to be found again. So, without further adieu, a very short summary of where we've been in the past four years:

At 6 months Cora's eyes were still crossing, as many newborns do. But 6 months is too late for that to still be happening. She had an anesthetized exam at 7 months. It was discovered that she had malformation of both eyes, resulting in the turning in (crossing/esotropia) in her right eye. Also, she had "scaring", also called "atrophy" at the retina in both eyes, which appeared at the time not to be progressive in nature. At 11 months she had eye muscle surgery to straighten her right eye. We've patched her left (stronger) eye 2hrs daily since 6 months to encourage it to work extra hard to maintain a good/decent visual pathway with the brain, and discourage amblyopia (poor eye-brain communication which results in visual distortion). And since then we've seen her pediatric ophthalmologist every 4 months. Whew!

Then... we moved to Michigan.

Little did we know, Michigan is home to one of the foremost eye research centers in the country; the Kellogg Eye Center. We were recommended to Dr. Gappy (PO) who saw her last September. After looking at her eyes and agreeing with most of what her NE docs said, he referred us to a Retinologist who specializes in pediatrics, Dr. Besirli. We saw him in late October. He took pictures of Cora's eyes using two special cameras and came to us with the following additional diagnoses:

Coloboma of the eye - bilateral
Peripapillary atrophy of both eyes
Exotropia (because the eye that once turned in is now slightly turning out. Normal)
Choroidal neovascular membrane - bilateral

It's that last one we hadn't previously heard of. What that basically means is that Dr. Besirli thought it was possible that the atrophy at Cora's retinas was not indeed scarred off, but that it was still active. In the event that his suspicion was correct, he said he could inject a drug called "Avastin" (actually, a cancer drug) into the region which would cause the leaking vascular membrane to scar off.

He asked to do another anesthetized exam, which we agreed to. Although originally set for November 9th, we were bumped twice and she finally had the procedure done last Wednesday, December 14th. So, back to Ann Arbor we went early that morning with our easy-going Cora in tow. She was hardly bothered by all the action. Couldn't have cared less about all the doctors in funny masks, the IV's, and all the medical equipment. She was tickled to be wheeled back into surgery in a big bed all to herself.

When we were finally called back for consult we learned that the membrane in Cora's left eye (her strong eye) was indeed still leaking. Injecting the Avastin would theoretically stop that leak, and potentially restore some of Cora's vision, if any had been lost for that reason (side note: we don't know if this leaking has been taking place since birth, or since three months ago. There isn't any way to know ). We agreed, and he was finished with the procedure 15 minutes later. An hour in post op, and then another half hour in "the go home room", and we were on our way back to DeWitt.

May I just take a moment to say what incredibly magical places childrens hospitals are? My only other experience in one was when Ezra broke his femur, but were were just visiting for a second opinion, we weren't there for treatment or surgery. They had Cora wrapped around their finger at Mott Childrens Hospital. They dressed her little lamb in scrubs, cap and mask included. They let her "paint" the inside of her Anesthesia mask with her favorite flavored chapstick, They had all the TV and toys a kid could want, AND the first thing they gave her after surgery was a popsicle! Aside from the needle still being in her arm when she came-to, she was happy as a clam!

So, post injection, we have an followup appointment with Dr. Besirli in a month. He'll dilate her eyes and take pictures again to see if anything has changed/improved. About half of patients in her
situation will end up needing a second injection, so only time will tell.

How does this relate to her vision?
Good question. No idea. Her vision is another issue entirely. I'd love to say that its unrelated, but in truth we don't know. She doesn't even know. Because she has nothing to compare against except her previous vision, she is her own baseline. I mean, sure, we can run her through standard vision tests, but those only tell how far away you can see things. That is only a very small fraction of her situation. So, we watch her, wait, and do lots of learning in the meantime. We never cease to be amazed by what she CAN see, and the things she can't see don't surprise us all that much. She's also developing a keen knack for "selective vision" which is uniquely similar to "selective hearing" if you catch my drift.

So there you go. I haven't blogged in 2.5 years and all you're going to get today is an update on my dear sweet NEARLY 5 year old daughter. Alas, more later

Friday, June 13, 2014

Ezra's birth story

Meet Ezra James Hnosko - the third in our brood. Adored by his siblings (maybe a little too much by Cora, who would eat him for dessert if she could) and parents alike, Ezra is a typical third baby. Calm, sweet, sleepy, and overall a joy to have around. I'm taking the time now to write his birth story because I'm just certain it will slip out of my mind forever in a matter of sleep-deprived weeks. So, here goes...

Ezra's pregnancy was definitely my most difficult. I'd say I wasn't quite a sick as I was with cora, but everything was magnified by the fact that I had two (not just one) other children to care for day in and day out. Prescription compression stockings, which I loathe, had to make their return at 14 weeks this time, instead of the 20 weeks I started wearing them with Cora. And I think, just overall, my body was way more exhausted. 

It was at 32 weeks, without warning that I started regularly contracting for the first time. Braxton Hicks, I thought, no problem. I've felt them so very many times before... but these were indeed different. at 3-5 minutes apart, my midwife sent me in to be monitored. Indeed, they were a combination of braxton hicks and labor contractions. None strong enough to cause change to my cervix, but definitely too strong to get a good night's rest through. So home I went with a drug called Visteral - basically a muscle relaxant - to keep my "irritated uterus" from being so... irritated, I guess. Visteral is not fun. It makes you sleeeeeepy, as though I wasn't sleepy enough. But I took it faithfully until I reached 37 weeks.

For whatever reason those contractions didn't return once I stopped taking the drugs. My midwife wonders if the reason my uterus became irritated was baby's positioning, or maybe baby's growth spurting. Anyway, I was a little irritated that the end was not necessarily as in-sight as I thought it could be. Nonetheless, I was happy my baby would have a little more time to bake. The longer he's in there, I thought, the more mature he'll be, and the better he'll be able to adapt to life outside the womb.

So time crawled. No, seriously. It crawled

And then came Thursday, May 22nd. I was contracting regularly again, and this time there was a strong bite to the contractions. Knowing I would likely have a reasonably quick Delivery (cora's was only 5 hours after all) and also knowing I needed IV antibiotics for a positive group B strep culture, I didn't want to linger at home. So, in we went. And would you believe that the moment my feet set foot on the hospital's premises, those contractions quit? I was incensed. After all, We'd woken up poor Rachael from a perfectly good night's sleep to come watch our sleeping children. Surely, I was offended by my body's inability to make up its mind. And so I made up mine not to have any more false alarms. No sirree. not me.

Sunday morning I sent the kids and Jonathan to church without me. I wasn't going to be seen pregnant by everyone again. I felt HUGE, and awfull. And I didn't want any reminders of how very pregnant I was. Add to that the fact that my actual due date wasn't for another 6 days, and, well. I wanted to spend the next week hiding. So, I stayed home and cleaned. There's always cleaning to do. 

The kids and Jonathan returned from church, we ate lunch, and then put the kids down for nap. I layed down too, as I usually do. And then I woke up. At three. In labor.

Suuure. I thought. another false alarm. I'm not buying it. So I continued on downstairs where Jonathan was and hung out with he and Levi who were watching something on TV. He watched me through a few (now relatively strong) contractions and muttered "don't you think we should be making some phone calls?" No, I assured him, this isn't it. I'm not jumping the gun. Instead I called my friend and doula Joyce, and asked her to come over and help me determine if and when to head in - because I felt incompetent to do so.

About 30 minutes later, around 4, Joyce walked in. She untied one of her shoes, at which point I started another (quite strong) contraction. She looked at Jonathan, who rolled his eyes. She looked at me and asked "are they all like this?" through breaths I managed to mutter a yes. Joyce retied her shoe.

I called rachael and informed her that Joyce (not me, mind you) said she should come over now and get the kids.I called my midwife who said she would be on her way shortly. I ran around the house throwing stuff into bags for ourselves and our children. I contracted in every which room of the house.I was still convinced it was really no big deal. We left for the hospital.

At 5:15pm we were admitted. Soon they had my IV in and I went on a lap of the L&D floor, trying desperately to find a comfortable way to manage my contractions. Nothing felt right. After one lap of the floor I got back into the room and tried a few more positions. I was hanging (essentially) from Jonathan's neck when my water broke. And by broke, really I mean exploded. everything about that word is true. it was like something out of a movie. Mind you, to this point I was still in my clothes from home. No one had so much as done a cervical check on me. So now everything was absolutely soaked. Shoes and all. Drat.

I'm told that just before that happened my labor sounds changed - an indication that I was entering transition. I don't recall specifically, but I'm sure they're right. I do vaguely remember the nurse calling the front desk and informing them that she was with a woman who was about to deliver and there was no midwife in the room yet. her premonition was correct, as just after my water broke the freight train which is the urge to push came barreling toward me.

Now, if you've ever experienced a natural delivery, you know exactly what I'm talking about. It's totally unavoidable. It's almost involuntary. You can't not push. so when I felt that urge I knew there was no turning back. Despite this reality I still managed to belt out a hearty "I don't want to do this!". It was at that moment that another midwife from my practice walked in the room. I was still standing up, and in an effort to spare my pelvic floor and parinium, she encouraged me to get up on the bed on my hands and knees. I don't think I had much of a part in getting myself up there, as I was crowning at that point, but with many helping hands, I made it. 

Moments later (seconds?) Ezra made his lively appearance at 6:36pm. He came out crying, unlike his sister, which was encouraging. he was awake and alert, and nursed immediately. The whole thing was painful, and beautiful.

I just sat there and nursed him while the third stage of labor finished - and the stitching, which I'll spare you from (although it was only a first degree, my smallest yet!). Then, at my request, the let me take a bath with him in the big Jacuzzi tub. What a treat. Lord knows we both needed a bath by then! 

We spent that first night together in the hospital and were discharged the following evening, just as my mom arrived at our home. Couldn't have been better timing. Ezra's labor and delivery were fast and furious, but probably my most peaceful.

And now, two and a half weeks (almost three!) later, I am a mother of three earth-side children. I'm exhausted, which is to be expected. my mom and step dad have gone home, and Jonathan has returned to work. My body feels (and looks?) like a squishy lump of clay, but I have to remember to give it credit for the 10 months it just endured. For the third time. Most of all I am blessed by the Father to be on the other side of labor and delivery with a healthy son.

Tuesday, January 29, 2013

Cora's post-post-op

Well, this week puts us at just over 6 weeks post surgery for Cora. So much has happened in those six weeks - related to her eyes, but also otherwise developmentally. Feels like it's been 6 months!

So, first off, her eyes. Here are three pictures, you may have already seen them all, but they're nice for comparison:

The first is immediately pre-surgery, the second is immediately post surgery, and the third is from the other day. I think the most striking difference is between the first and the second photo, but what amazes me most is the difference between the second and the third. Why? because it was HER BRAIN that moved her eye from being over-corrected (which was intentional) to being more-or-less directly in alignment.

We went in for our post-post op appointment with our pediatric ophthalmologist yesterday. He uses his fancy lenses and shiny toys to check the strength of her eyes (not her vision - we already know she is neither far sighted nor near sighted, and until she can speak there's nothing else we can learn about the quality of what she sees). What he determined is twofold: first, while patching therapy has not appeared to deliver a vast improvement in eye strength as it so often does in little ones with Amblyopia, it may have improved it a little. Second, having her eyes similarly aligned means she's using them more "in stereo" (together) than she used to. Now, I'll follow that up by saying that it is rare that she actually uses her eyes together. You'd probably have to be one of her parents to recognize this, but she usually only uses one eye or the other to focus (camera one, camera two style) and it's usually her strong eye she chooses. Actually, it's almost always her strong eye.

The doc said that as he was examining her he observed the weak eye still has a lot of "play" in it. meaning it will sometimes be a little over corrected, and occasionally a little crossed. I occasionally observe the same thing, but again, you'd probably have to be one of her parents to notice. Ideally, as her brain-eye connection continues to improve, her brain will eliminate most of that play. We just have to wait to see what it will do (whether it will settle into a straight alignment, or some version of off-center alignment).

So, we patch. and patch, and patch. Familiar story, eh? Meanwhile Cora has learned to walk, has turned one, has begun babbling like a little parakeet, and generally remains her happy little self. She's decided cow's milk aint half bad (as long as it contains chocolate thankyouverymuch) and eats twice the dinner her brother does; although if you know her brother you know that's not hard to do. She's been through roseola, and a stomach virus, and STILL managed to gain two-plus pounds. She's also begun sleeping straight through the night (HALELUJIA!) with only a little prodding. Happy. Healthy. Couldn't ask for anything more.

We'll return in 3 months, and then again in an additional 3 months for further exams. At this point, unless/until we start to see identifiable differences in the ways her eyes track, we'll probably go back for visits every 3 or 6 months until she's around 3 years old. Whoopie! No, actually, that would be an awesome scenario. My hope is that her eyes will continue to be as straight (if not straighter) than they are today, and that her vision will continue/begin to improve, if it is at all lacking.

Sigh. I guess there are a few unknowns.

So now you're all caught up!

Thursday, December 20, 2012

Cora's Post-op

Catchy title, eh?
But I digress...

Cora's post op appointment with the good Dr. S. was on Monday. The same day she spiked a fever for no apparent reason. yay. Said fever was completely unrelated to her eye though (according to the doctor who gave her a thorough exam), which made me feel better.

After looking my daughter's eyes over, Dr. S remains happy with the surgery. Although the fixed eye looks over corrected, that is intentional, he said. The muscles will "stretch" a bit (for lack of a better term, because they don't really stretch as much as they just settle out) and idealy that will leave her eye looking straight.

So my following questions for him were in regards to Cora's long term prognosis. Will the surgical change last? Will patching magically begin to have an effect on the strength of her eye? Will she begin to focus with her weak eye? Here is how he explained things:

Cora's situation is a bit of a "chicken or the egg" enigma. You see, if her strabismus (eye crossing) caused her amblyopia (brain eye connection issue), then the surgery may have solved the issue. However, if the amblyopia caused the strabismus, then we've only temporarily straightened a weak eye, which will fight to return to its crossed position. Weak eyes tend to wander and/or cross.

This is why we've been patching - to encourage that week eye to strengthen so that it would have less of a proclivity toward crossing and/or wandering. But unfortunately the 5 (nearly 6) months of patching we've done so far haven't had any effect on eye strength. Darn. That is surely disappointing.

So then, what about glasses? Because Cora is neither near sighted nor far sighted, glasses wouldn't do her any good. Any visual difficulty she has (we know she has some, but we won't know the extent of it until she can verbalize it through a visual exam) is caused by either the amblyopia, or the retina atrophy - neither of which can be either surgically repaired, or aided with lenses. Double darn.

So here we sit with our lone method of visual therapy: patching. This is what we'll continue to do for a looooooooong time, hoping upon hope that her eyes get stronger through this therapy, and that having them straight now will give them an edge on fixing themselves.

So that was long and technical, I understand. We'll go back in 6 weeks to take measurements again. By this point her eyes will have completely healed from surgery. After that we'll be on a 4-6 month routine of check-ups with our PO. And patch we shall.

Thursday, December 13, 2012

Just Before, and just after

Back home

Well, we're all done for now!
Surgery took just over an hour. The good doctor was happy with the initial results of his work. You can't tell in the picture because of all the swelling, but the eye is actually over corrected, and intentionally so. Over the next two weeks we'll be watching to see how her brain responds to the surgical alignment of her right eye, and we're prayerful it will end up delightfully straight.

Coming out of anesthesia was WAY easier this time than it was after her sedated exam in July. This time she woke up very slowly, already in my arms and nursing. She is very groggy, drugged, and sleepy. She will wake, but only temporarily before sucking herself back to sleep.

I cannot thank you enough for your prayers on our behalf. We're so grateful for friends and family who love our children, and intercede for them along with us.

We go back for post op on Monday morning, I'll try to update on Cora's recovery before then

T minus

We're all checked in, awaiting straight eyes. Lord, go before us.