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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.

Tuesday, November 20, 2012

Surgery for Cora

"A child's vision doesn't finish developing until around age nine." is what our pediatric opthalmologist (I'm getting better and better at correctly spelling that word on the first try by the way) told me this morning. I'll explain how that so seriously impacts our situation momentarily, but first...

Cora should be having surgery to correct her strabismus (struh-BIZ-mus) within the month of December. The term "strabismus" is how we describe that her eyes are not properly aligned. For her, that means that her right eye turns in toward her nose. Surgery is rather simple, really. That's probably why this post is so long and yet, this is the very first thing I'm explaining. Dr. S will (stop here if you're squeamish) reach in, between her eyelid and eye, and tug on the muscles that hold the eye in place. He will cut and suture on one side, effectively shortening the muscle, and tug on the other, effectively lengthening, or stretching it. He will also adjust one of the muscles that holds her eye in place vertically because that right eye also tends to sit a little lower than the left. Surgery will take about an hour.

So, as I mentioned, surgery is the easy part. The difficult part is determining whether or not it will be effective long-term.

I'm going to have to go back and read my last post about this while situation, because as I learn more, I become more and more certain that I explained things at least somewhat incorrectly four months ago, so if you'll bear with me, I'm going to give it another go. This is as much for me (if not more) as it is for all of you, because I process and digest information as I write it. Here we go.

We've been patching at two hours daily for four months now. One month ago we saw Dr. S and he looked at Cora's eyes. Specifically, he was looking to see if her weak eye was any stronger. He did that by analyzing her "focus" with that eye. What he found was that the strength of the eye was largely the same. It hadn't gotten any stronger, but also, it hadn't weakened. He asked us to patch for one more month before we consider surgery.

Why? why patch for one more month when the first three didn't seem to do any good? Assurance. Because, if after one additional month that eye decided to get a little stronger, we'd probably patch even LONGER before surgery and allow it to strengthen even more. You want the weak eye to be as strong as it can possibly be to have the best chance of accepting the changes the surgery will impose on the eye, and the eye-brain connection.

So, today we saw him again. As I had suspected, Cora's weak eye is still the same. Now I'm not necessarily discouraged by this. It's neither good, nor bad. The positive side of this is that she can have the surgery that will make her look symetrical. The negative side is that, because her eye is still relatively weak (we know this because, given the option, she will NEVER choose to focus with her weak eye. Only with her strong eye) there is a greater chance her eye will reject the surgical change, and fall back into misalignment. This is where we have a new term to learn: Amblyopia (am-blee-OPE-ee-a). This is a term we use to describe a malfunction in the way the eye and brain communicate

By patching we've been attempting to correct the amblyopia, and force the brain to use the weak eye. When she has her patch on, that works. She uses the weak eye, focuses with the weak eye, and can do almost everything she can do when she's patch-free. she can crawl, focus on faces, stand, eat, you name it. She CAN see out of that eye; although, to what degree, we won't know until she can verbalize it to us. The persistance of the amblyopia may, or may not be caused in part by the retina atrophy she was initially diagnosed with. Retina atrophy, while more of a description than a diagnosis, just means that her retinas don't look like they should. But, they look identical in both eyes, so it could just be a congenital anomaly, and not the cause of any of her eye problems.

Is anyone still listening, or have I lost you all? Great.

So, the BIG question Dr. S answered today was: is it prudent to do surgery now, or more prudent to wait? He feels confident doing the surgery now, but also gave us the option to patch longer if we wanted to, in the off chance that her eye decides it's finished being stubborn. The benefit to doing the surgery now is that she's younger, and her brain is more capable of accepting and adapting to change. However (and this is a BIG however) Dr. S feels that Cora's case carry's a much higher surgical failure rate  because of two factors: the unknown role retina atrophy is playing, and the curious fact that patching hasn't changed the strength of her weak eye. Although these two factors make it more likely that her eye will wander back out of alignment, waiting won't likely change anything, as proven by the previous four months of patching.

So, in two to four weeks her right eye will be straightened. Then we quit patching. HA! kidding. Then we begin patching LIKE MANIACS so that what has been done surgically isn't un-done by lingering amblyopia (aka a stubborn brain-eye connection that liked it's misalignment thank-you-very-much). Dr. S. said this is the only downside he sees to performing surgery now: once the eyes are aligned, it makes it harder for parents to patch. It makes it "look" less necessary, when in fact it is MORE necessary.

It was around this point in the conversation that I asked what I look at now as a rather stupid question. Ok, it wasn't stupid, but, given the answer, it was near sighted (badum bum, vision joke). How long do we patch after that? like six months or so? (that was me being what I thought was realistic. considering we've already patched for four months, I thought saying six months would be over-and-above his suggestion. oh how wrong I was). "Well," he said "A child's vision doesn't finish developing until around age nine, so you'll probably be doing some measure of patching until then." Insert wide eyed half-choke. NINE? Did he just say NINE? Um, yeah. Yeah he did.

ooooookay, so, now my picture of this whole adventure has become about twenty times wider, and the light at the end of the tunnel about 1,800 miles further away.Yes, I'm glad she's having surgery. Yes, I wish her eye had shown some sign of ability to strengthen, yes I'm concerned that the brain-eye connection, which may or may not be related to, or impacted by, the retina atrophy (or the coloboma, for that matter, although he didn't mention it) will render the surgery unsuccessful. But no, this isn't keeping me up nights. I'm at relative peace about it, surprisingly. Maybe it's because it's so very much out of my control. Or maybe the fact that she can so-obviously see - at least to some extent - gives me comfort. Either way I have no way of predicting or changing the outcome of this process. except by continuing to follow the Dr.'s orders to patch. And patch. and (apparently) patch.

Which I hate. I totally hate patching. So, if you've seen me, and my daughter, and son, and I've appeared upbeat about the whole thing, you should know that while I'm not wallowing in pity and stress, and overall anxiety about it, I HATE PATCHING. I hate putting elbow immobilizers on my sweet child. There is nothing I enjoy about patching, except maybe to enjoy hating patching.

But young kids pick up on that sort of thing so I try (very hard) to keep my patch-hating attitude to myself.

We should have a surgery date soon, and I'll update then. Cora should have straight eyes before her first birthday, and Lord willing, for a LOOOOOOOOOOOOOOONG time after that.


Tuesday, September 25, 2012

"Packets"

If you are one of my many friends with kids (do I even have friends that follow this blog that don't have, or regularly interact with, kids?) then you probably know what "packets", as we call them in this house, are. Need a memory jogger? here.

That is my daughter, at 8 months old, feeding herself with a packet.Also could a pouch. or a squeezie.

I could easily dig up for you a bunch of pictures of my son doing this same thing, but for the sake of a prime example, I'll share this one (Levi, 20 months):

But the bottom line is, while these things are AWESOME, and convenient, they're also expensive. As in, when on super-duper sale, I might be able to get them for a buck each. EACH. hmph...

So, imagine my shock and awe when I found this lovely device. I saved a whole $25 of my monthly spending money (because, as you may remember, we're a cash-only family) and I purchased this brand spankin' new Infantino product:

Just you wait for the pictures that will follow once I get my wits about me. Just you wait.
this is GENIUS!

Sunday, September 2, 2012

Back to school 2012!


This is the first of many more back-to-school posts, I’m sure. If I wait much longer to chronicle what you’re up to right now I’ll forget all the important things, So here we go!

Levi, you turned 3 just a few short months ago, and just last week I sent you off to your first day of preschool. You’re going three mornings a week. It’s quite a change for you, but so far you seem to enjoy the routine aspect, and (as always) you love playing with new friends and teachers. You aren’t shy, or clingy in the least. You have a great sense of self-confidence.

Your favorite color is red and it’s been your favorite for a year or so now. Your best friend (of course) is Teague, and you’ll make up almost any excuse to go over and play with him. You two attend preschool together. You tell me you want to be a fire fighter when you grow up, another desire that hasn’t changed for at least a year. You also want to be a daddy, and a superhero.

You know your alphabet, and you can properly identify your letters. Numbers, on the other hand, are still quite difficult for you, as is the sound made by the letter  “S”, but only when it precedes a consonant. You usually ignore the letter all together when unless it precedes a vowel. You’re beginning to identify simple words, like your name, and your sister’s name, but I stress “beginning”. My favorite word that you say right now is “their-chother”. I think it’s so cool how your language acquisition has lead you to make up words that your little 3-year-old brain assumes follow the rules of grammar. So cute! I also love how you have begun using adult idioms and figures of speech. It is not uncommon for you, when explaining an event at school, to use the phrase “we were going back and fourth…”. It’s funny to hear my words come out of your mouth. You also like the phrase, “well, actually…”

Your memory is like a steel trap. You can correctly tell anyone who asks what your full name is. Spelling and all (ok, you can almost correctly spell your last name) and your birthdate. You’ve recently memorized your address, although it’s a bit sketchy. We’ve also been memorizing simple scriptures as a family and you’re doing great! As long as we do the hand motions, you’re great with 1 John 4:8, and the first half of John 3:16. In the coming months we’ll be memorizing A good chunk of Luke 2 as a family. Can’t wait!

You’re still a tall drink of water, almost 39 inches. You weigh about 36lbs. We think you’ll be tall and lean like your daddy. You’re almost into a 4T, and a size 9 shoe. You’ve been potty trained now for about a year, and night-trained for about two months. You typically go to bed around 8, and wake up around 6:30. You’re a great sleeper, and like your parents, a total morning person. Breakfast is your favorite meal, by far. Aside from breakfast foods, your favorites include PBJ’s, cheese, yogurt, hot dogs, mac and cheese,  grapes, apples, cantaloupe, bananas, tomatoes, applesauce, and virtually anything else in the fruit category.
Some of your favorite activities include coloring & painting, reading, RUNNING up and down the hallway, making your sister laugh, running around outside, imitating any chore or task mommy & daddy do, and pretending; giving voices to all your toys. It is not uncommon for me to find you in your room re-enacting a scene from earlier in our day with a few of your toys. It serves as another reminder to me that you watch, and listen to me, even when I don’t think you’re paying any attention. Another great reason to be mindful of what I say to you.

Levi, we love you so very much – I love watching you grow and learn. What fun it will be to watch you over this year and see what the Lord has in store for your little life. 


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.

 Whew.

 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
7:30am

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.

Rewind...
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.

Monday, May 14, 2012

A letter to our children

Late one evening, long after the kids and I had gone to bed, my husband sat down and wrote a letter to our two children. I knew when I married this man that it was for far more than his good looks and intelligence. Indeed, I knew when I married this man it was because I knew God had chosen him to be the spiritual leader and driving force of our family-to-be. I'll share the letter he wrote to our children, and maybe it will inspire you, too, to put into writing the most foundational, fundamental truths you wish to impress upon your family.

To my beloved children.

I am taking time to write to you briefly of some important things I pray I will be given the opportunity to speak with you about and model for you on a continuing basis (along with your mother) as you grow up. There is much that could be said, but for want of ability to say it all I will limit my thoughts to what is currently most on my heart when it comes to you both.

First and foremost I commend you, along with J.C. Ryle (Thoughts for Young Men), to determine as long as you live to make the Bible your guide & adviser. The Bible may seem overwhelming to tackle and you will doubtless receive many and various opinions regarding it. I commend you to the task all the more and not without guidance.

Mark Driscoll sums the Bible up well in his small books On the Old Testament and On the New Testament, which I think you will find very helpful. The central things of which I have become convinced, but you each will have to discover yourselves, are the inspiration, inerrancy, and authority of Scripture.

The single thing I suggest, and eagerly so, you keep in mind as you search God’s Word is to learn the very nature of God. This can, I think, be seen most clearly in the New Testament Incarnation of God the Son – the life, death, and resurrection of Jesus the promised Old Testament Messiah or Christ.

The implications are staggering both for mankind and indeed the rest of creation! The themes of necessary atonement and promised restoration/reconciliation/renewal are rampant throughout the Bible and are among its chief unifying threads. They highlight the weight and depth of sin well as the beauty and extent of God’s gracious and loving provision of salvation and redemption.  

I have found the New Testament book of Hebrews to be particularly helpful to me in brining to Old and New Testaments together in Christ. The Old Testament book of Isaiah is lush the themes of atonement and restoration and connected references to the Messiah. Isaiah 53 has been, for me, the most impactful by far!  

The Apostle Paul spoke well when stating, “I am saying nothing beyond what the prophets and Moses said would happen – that the Christ (or Messiah) would suffer and, as first to rise from the dead, would proclaim light to his own people (for Jesus was a Jew) and to the Gentiles (for God so loved the world).” (Ac.26:22-23) To put it another way, “Salvation is from the Jews,” (Jn.4:22) but for both Jew and Gentile.

Secondly I must write to each of you in turn of the unique challenges you will face as male and female in the fallen world you find yourselves in.

My daughter, the world and the culture will strain it its attempts to persuade you that your value is in the way you look and dress. You will be encouraged to give pieces of yourself away (visually, physically, and emotionally) for far, far less that you are worth (and by that I mean life-long commitment in marriage). You will naturally crave attention as a young lady, so guard yourself well.

My son, the world and the culture will strain in its attempt to persuade you to take all that you can as it pertains to what it attempts to persuade women to give away. This will start with your eyes! It will encourage you to take looks, steal glances. You will naturally crave this, so guard yourself well. What you look at will have a profound affect on how you view women (worth life long commitment in marriage).

God designed sex to act like glue within the confines of marriage (for both are His idea, meant to be inextricably connected) and it serves its intended purpose well (Ge.2:24). Outside the confines of marriage it still functions much the same in a world that would encourage you to act as if it does not and therefor tear yourself apart moving from one partner to another as if sex were a purely a physical act (i.e. if the physical consequences be removed it has no affect on you as a person). This is pure folly!

Lastly, but preeminently, I want you to know that it is an unspeakable blessing and privilege to be your father and watch you grow up. It is second only to being the husband of your mother and a child of God. I was not until I was blessed with you as my children that I understood what my parents must have felt for my siblings and I growing up. And I think I learned just a little bit more of God as a Father.

I love you so.

And to this I will only add something small; Daughter of mine, After our Father God himself, look to your earthly father as a prime example of Godly Manhood. Watching him, and remembering how he treats you, will teach you everything you need to know to evaluate the men who value you enough to consider asking for your hand in marriage. And son, watch your father. In him God has given you your most excellent earthly example of biblical masculinity.

Lord, thank you for this man. From the overflow of the heart, the mouth speaks.

Wednesday, February 29, 2012

I was so nieve


It was back when I was pregnant with Levi, still working full time, that my then boss and I got caught up in a discussion about how his triplets (!!!) were being picky at the dinner table. They were five years old. They refused to eat anything green and also didn’t like potatoes. Any kind of potatoes. Even fries. I may have appeared understanding, but I was snickering on the inside. Surely, I thought, this was caused by soft parenting. Anyone whose anyone knows that if kids are only offered what the family is eating, eventually they’ll get hungry enough to eat what’s put in front of them and thereby conform to the family. I must have said something somewhat snarky because I clearly remember my boss telling me that, as a pregnant woman without any kids yet, I was the best parent I’d ever be.

Wow. Did he have me pegged or what?

This past week has been FULL of power struggles with my oldest cherub. I’ve been daily reminded that as humans, our sinfull hearts are evident even from a very tender young age. Discipline has been so difficult with Levi lately. What is right, what is wrong? How will he best learn? How can I give him the most accurate representation possible of how God loves us as HIS children? I must discipline him in love, and not anger, but MAN is that hard.

Oh, and he won’t eat anything I put in front of him at the dinner table.  Even fries.


Thursday, February 9, 2012

Overdue update


The fact that it’s been so long since I’ve blogged should give you some insight into how busy I am. Or rather, how busy I feel. I marvel at women who have more than two kids, as I myself don’t feel like I can adequately accomplish (to my standards) much of anything these days.  Ah well, comes with the territory. And that territory has been lots of fun lately. Here is a totally informal bulleted list of some of the things I’ve made note of recently:

·         Cora is closing in on the ten pound mark (I’d guess she’ll be there by next Wednesday at the latest) and has been consistently gaining an ounce a week on breastmilk alone. If you knew me when I had Levi (or if you go back in the archives of my blog) you will see that Levi and I struggled mercilessly with milk supply and traveled a long road of supplementation etc. before finally being able to exclusively breastfeed.  I prayed fervently for the breastfeeding relationship Cora and I would have, and the Lord provided greatly! Things have been so very much different!
·         For a LONG while (maybe 5 weeks) Cora would not go back to sleep and stay that way after nursing in the middle of the night. Ugh.  We tried EVERYTHING we could think of. Finally we reluctantly moved her to her own room as a last ditch effort. Ta da!  It was a huge success. A week or so later we attempted to swaddle her again (which had been a big mistake previously) and she decided it was quite a nice way to sleep. We’re very much enjoying one 5-6 hour stretch of sleep each night, and then another 3-4 hour stretch after that.
·         Cora likes to be close to mommy. Surprised? Don’t all babies? Anyway, she loves nothing more than nursing and snuggling in bed with us. And we love it too – just not all night long because this mama don’t sleep too well with a baby next to her. Our afternoon naps together are simply blissful
·         About two weeks ago Cora started mirroring smiles – it’s more precious than words can express, so I’ll leave you with a picture:
·         Cora loves bathtime. Like her brother, she plays the part of the exhibitionist joyously. She If she appears unhappy, take her diaper off and she’ll be happy as a clam.
·         Bright lights make Cora cry. Dim lighting makes her sleepy. She likes music, and white noise, and very soft blankets. Most of all, she likes to be kept unreasonably warm.
·         The car-seat isn’t her favorite (I don’t know many babies who enjoy it) but a good car ride will put her to sleep – until we reach a red light at which point I’ll look back and see her little face scrunch up until she whimpers. So sad to watch.
·         Levi loves his little sister, most of the time. He isn’t usually bothered when she cries – except on time last week when he sweetly shushed her before placing a pillow over her face. Darling child.
·         Cora officially outgrew her newborn clothes over the last week. She’s solidly into her 0-3’s (or 3 month if she’s in cloth diapers, which we’re using more and more these days, although not exclusively by any means)
·         Cora really only naps in her swing, but I can’t complain. heck, she naps!  As I type this, she’s swinging peacefully and Levi is crying in his bed. This past week has been VERY tough for him. I find him begging for attention and for obvious reasons I don’t as much to give him as I used to. As a result, he’s trying to get my negative attention by acting out and being intentionally disobedient. It’s heartbreaking and infuriating at the same time – especially as I have less than half the patience I need and less sleep than I’d like. Dealing with his needs (and not meeting my own expectations in that regard) is far more difficult than meeting Cora’s daily needs. Babies are easier than toddlers.

And with that I’ll go tend to the crying toddler. I may come back and add things to this as I think of them. Like that bit about how our friends bought us a Roku player which keeps me company during those late night feedings. It’s magical!

Tuesday, January 10, 2012

Guess who's here...

Yes, I know. I haven't blogged in - like - eons. And here's why:


This is the part where I say to everyone "oh, I'll do better from here on out, I'll blog daily again, really, I will. It's my new-years resolution in fact... yada yada yada" except I'm not going to because I'm more of a realist than anything these days. I know as well as you all do that there is even LESS of a chance that I will blog now, than there was that I would blog whilst pregnant. 

Whew. That was cathartic. Now onto cuter things.

Cora Grace Kathleen Hnosko was Born on Tuesday, December 20th at 10:46am - a full ten days before her due date (halleluia!) She weighed 6lbs 14oz, and measured 19.5" long..She is everything her brother was NOT as a newborn. She sleeps almost all day (and as a result is up a lot at night, but not in the screaming angry baby way, more of a "I'm awake and happy" way. It's cute) and is content to sit in a swing, or a bouncy seat and observe the view. It shocks me really. If you knew Levi as a newborn, it would shock you too. She sleeps A TON!

 In case you are interested in this sort of thing (and because I really should type it out before I forget it) Here's Cora's abbreviated birth story:

On the morning of Monday the 19th, something was different. I can't put it into words, but something was in the air - enough so that I called my friend Rachael, who was on "babywatch" to take Levi off our hands if we needed to make a dash to the hospital, and Joyce, my doula, to give them a heads-up. It wasn't until around 5pm that contractions started. I say "contractions" but in my opinion they were really just strong braxton hicks. They were wimpy to say the very least. I went to bed that night and tried to sleep them off.

I awoke around 1am and couldn't get back to sleep - not because the contractions hurt, but because they were annoying, and had moved closer together (about 3 minutes apart). I called my support team (Midwife, Doula, Rachael) and in a couple hours time we were on our way to the hospital at my midwife's request.

I was a mere 3 centimeters dilated. Hardly anything to be excited about. I was blessed with a delightful labor and delivery nurse (Jane) who also happens to be a midwife. She totally left me alone, which is exactly what I wanted. For the next three hours I paced and paced and paced. At this point my baby girl was ROP (Right occiput posterior) also known as mostly-sunny-side-up. NOT a comfortable position to deliver in. I knew the more I moved around, the better chance I had that she'd move into an Anterior position, but nothing was a sure bet. So, I mixed it up a little spending some of my time on my feet, and some on my hands and knees, hoping gravity would shift this baby around.

Somewhere in there I lost track of time. Tunnel vision came upon me and I wasn't speaking in sentences any longer. Remembering how long and arduous Levi's labor and delivery were I kept reminding myself that I had a lot longer to go, and that the pain still had much worse to get. This was only the small stuff, I had to keep it together because the worst is yet to come.

It must have been sometime around 10am when my water broke. That was something I never felt with Levi (I had an epidural around 9 cm and they broke my water just before he came out) and man, was it a weird sensation. At that point labor became intensely difficult. I struggled to focus. My midwife came to see how I was doing and, because I requested not to be "checked", she estimated I was around 6cm dilated based on where I was initially, how much time had passed, etc. She left the room to go check on another patient.

I was exhausted. I laid down on the bed for the first time that day. It was likely no longer than 10 minutes after my midwife left that I felt Cora turn from Posterior to Anterior (HOORAY!) and immediately my whole core began to push her out. I felt almost like a fly on the wall as my body did all the work for me. It was supernatural. I simply don't have the words to describe how relieving it felt to push through all that pain. Strange, I know, but that really was the best part of labor although I had feared it would be the worst.

 Now, mind you, my midwife was down the hall. Levi, my firstborn was out in 30 minutes, so I knew this would be quick. my midwife scurried back into the room, and threw on her gloves (no time for her gown) and with two pushes Cora was out!

She didn't cry. She was rather blue. So after a quick sit on my chest, off she went. Turned out that with her quick arrival she hadn't coughed up all the junk that had accumulated in her lungs over the past 9 months. Not only that, but she had a belly FULL of meconium (poop). Needless to say, she was in the nursery under observation for low O2 saturation for the better part of 3 hours. It was heartbreaking to see her lying there and not be able to snuggle and nurse her, but by the grace of God she came out of it and returned with us to our room.

 All in all, this was a fantastic birth experience for me - everything Levi's birth wasn't. It was healing. My recovery was 100% faster, and my post partum mental state an even keel. Nursing has also been completely unproblematic, and absolutely wonderful. Praise be to the LORD! Many of you know the trouble Levi and I had with nursing, and let me tell you, every baby is different, and boy am I glad.

And I'll have to leave it at that as I have not one, but two little ones who should soon be waking. Check facebook for more adorable pictures!