And the results are in

And they are not what we expected.  I knew that Julia's right eye would not have "normal" vision.  I expected a number like 20/200 (which is legally blind).  I had steeled myself to hear that and be okay.  I figured the left eye would come in somewhere at 20/40 or so.  Her left eye is a bit farsighted, but at the last appointment we decided to wait on glasses because we were hoping she would grow out of it.  So I finally got a call with the numbers and...



20/400 in the right eye

20/100 in the left eye

I was stunned.  I had never expected her left eye to be that impaired.  We are counting on her left eye to be strong and healthy so that if we never attained good vision with the right, well, we could count on the left.  Now her "sound" eye (as the doc calls it) isn't seeming so sound.

Even the doc was surprised, which sparked great anxiety in me.  I didn't understand how my baby's vision is so terrible but she runs around like a maniac!

To make matters worse, we had a terrible incident with her on Sunday.  Jed accidentally ran into her and she fell straight back onto her head.  She immediately started screaming, but when I picked her up, she stopped.  I figured she had calmed down, but when I looked at her, her head was tilted back and she wasn't breathing.  Her eyes rolled back in her head and she went limp.  James started screaming her name and I froze.  After blowing in her face and even puffing air into her mouth, she started screaming.  She cried and cried, but was lethargic and sleepy.  So we immediately went to the ER.  Of course, by the time we got there, she was acting completely normal.  Docs said that she probably was so stunned that she tried to take a long, deep inhale but got "stuck" and held her breath.  She didn't have a concussion or anything so we came home.  It was the scariest moment of my life.  Scarier than handing over my baby to a surgeon, scarier than learning about phpv and cataracts, scarier than anything I have ever experienced.  I keep seeing her image in my face and it tears me up every time.  I thought I was going to lose my baby in that moment, and it was too much.  I couldn't take it.

Well, that incident, on top of the new vision information has set my anxiety on edge.  I am by nature an anxious person and always feel better if I can "do" something or "fix" it.  Well, I can't fix this and it makes me crazy.  I'm walking around with a ball of nerves in my stomach feeling like I am constantly filled with adrenalin.  It is a horrible feeling and I'm not sure what to do (short of becoming a zombie on a ton of anxiety meds!)  So I text some imoms and realize I'm not alone.  Read some other blogs and know that other families are facing the same challenges.  Talk to my husband and my mom and accept that I am a great mom that is taking care of her baby in the best way she can.

So, after emails with the doc, contacting First Steps about more vision services, and lots of tears - I have done all I can.  We are seeing the doc Oct. 2nd (perhaps earlier - he told me to call his nurse to get squeezed in) and he is going to do the Cardiff test himself to make sure the numbers are right.  And we will go from there.  He is also going to go over the results with the surgeon to see if/when we should do the strabismus surgery.

There is a bit of good news though.  The fabulous nurse, Tracy, from the Eye Clinic called and said that Julia's back up contact was in.  The company sent a three pack (so we have three back ups!) and the cost is only 90 dollars for all three!  I don't know if this is an apology for messing up so many lenses or their normal bulk price, but it is great.  I can't figure out how one lens is 150 and three are 90, but whatever.  Maybe they made a few extra and since they are custom and don't really sell that size they are discounting it.  Who cares - I get cheaper lenses!  But wait, it gets better...



The doc emailed me and he spoke with our insurance and they are approving the lens!  So I am getting three lenses at no cost.  That made my day.  Gave me just enough boost to keep going.  So we will get up tomorrow, put the contact in, collect our patches, and go about our day.  One day, one patch, one contact at a time...we will do this.

You know you're an "imom" when...

So some of the other great moms that I have connected with online have coined a term: imom.  Moms who are dealing with intense eye issues in their little ones.  We are versatile and up to date like an ipad, provide memory and entertainment like an ipod, and we deal with eyes so we are the mighty "imoms."

So I have compiled a little list.  You know you're an "imom" when...

1.  You choose your child's patch to match his/her clothes.  I mean really, to my diva, the patch is just another accessory to work her style.  When she gets older and can choose herself, I'm sure it won't match, but for now - we color coordinate for the most stylish looks.

Lady bug patch, lady bugs on the dress.

Pink and orange patch, pink and orange outfit.

This one is older, but note the black/white animal theme she is sporting!

2.  You have some sort of bin like this:

Patches, saline, cleaning solution, cases and even milk of magnesia for those pesky patch rashes!

It may be a drawer, a countertop or a bucket - but you have a centralized spot for those fun eye supplies. 

3.  You may also have a container like this:

Drops, drops and more drops.  And a few extra cases and some eye shields.

Again, it may be a bucket, drawer, or counter - but you know you are an imom when you are a stealth bomber when it comes to putting in drops.  If a random stranger watches you put in drops at daycare and comments on how easily you can administer drops and how well your child tolerates them - then you know for sure, you are an imom.

4.  You probably have something like this in your diaper bag:

A pretty way to carry a spare contact case and solution!

If your diaper bag has contact cases, saline solution and random spare patches - you might be an imom!  (I never thought contact solution and cases would be necessary in my diaper bag - it definitely wasn't on the registry list I saw before my babies were born...maybe I need to inform Babies R Us that they need a diaper bag with an "eye" compartment.)

5.  You probably have this in your diaper bag too:

Spare glasses.  She won't keep them on, but we at least have them as back up.

Nothing worse than losing a contact when you are out an about.  A smart imom keeps a spare set of glasses in the diaper bag.  Even if said glasses will never stay on the child's face for more than a nanosecond - the imom feels better about having the glasses and carrying them around.

The glasses are on...

.05 seconds later...

Here mom - I don't want these (note the matching patch!).

6.  Everywhere in your house you see this:

Yep, that is a patch on the changing table. 

If you find patches stuck to tushies, on the couch, in the swing, and even on the bottom of feet - you are definitely an imom.

7.  You have a stash of these:

Flashlights.

Every good imom knows that the best way to find a contact is to shine a flashlight everywhere and look for the "sparkle."  You also know you are an imom when your 2 year plays with the flashlights and says "find the contact, find the contact."  Or he constantly tells his sister "stop rubbing, stop rubbing."  Such a good "ibro" helper.

8.  You have toys like this:

Flashy toys.

The "shiny" imom knows that patch time is better with flashy, loud toys.  The brighter and louder, the better.  (That star actually blinks and suction cups to the wall - spectacular!)

9.  This is only for the hardcore imoms.  Those with particularly stubborn kids (or drugged up kids after surgery:

Can you guess what it is?

Extra patches, but something else.  It is fancy, fun elbow splints!  In all seriousness, most kiddos don't have to resort to elbow splints to keep the patches on.  But Julia was rubbing, rubbing, rubbing after surgery and these splints were the only way to keep her from damaging her fragile eye.  We are keeping them "just in case" we hit a rough patch. (get it - rough patch?  I crack myself up.)

10.  You use acronyms like "PO" or "EUA" and expect everyone to understand you.  The words strabismus, esotropia and amblyopia are not foreign languages, but words you actually know and understand.  You know what the normal eye pressure is for a child.  You know you are an imom when you scour the internet for information because you want only the best for your baby.  You cheer on other imoms when they have victories like low pressures at a PO visit and you cry and pray when these fellow warriors find out their babies need surgery. 

11.  Last but not least...

You might be an imom if...you are the strongest person your friends have met.  All the imoms I know are the strongest, most amazing people on the planet.  They swaddle their babies and put contacts in their eyes.  They have to put a sticky, icky patch on their kids everyday.  They might be crying inside, but on the outside they smile and kiss that patch and tell their kids how courageous they are.  They go to countless appointments and hold their screaming babies while doctors shine lights in their eyes.  They check their baby's eye every 5 minutes for the elusive contact.  When the contact is not there, they gather the flashlight and search and search and search.  They've been through surgeries, EUA's and other traumatic experiences.  They fight to keep the patch on, keep the glasses on, keep the contact in.  They fight the battle on a daily basis - and they are fighting to win.  You see...imoms are not fainthearted.  They are not fighting for a trophy, a ribbon or even a cash prize.  They are fighting for their kids to be able to see.  And that is the best prize of all. 

So if you identify with even one item on this list - consider yourself an imom.  And know that all across the planet (even though you don't see them) are other imoms that are fighting the fight.  We are fighting together and we will win this war.  We may lose some battles along the way - but in the end, the war will be won.

beautiful things

Things have been challenging lately.  Several of my "imom" friends are dealing with surgeries - scary surgeries.  Well, all surgery on your baby is scary, but the thought of losing vision, when you have fought so very hard to preserve it, is terrifying.  And I don't have the right words to say.  I'm not sure how to help.  And I remember being in the same situation - you go to the eye doctor expecting a routine appointment (although deep down inside you are worried but would never say it out loud) and instead of "normal" you are scheduling your baby for another surgery.

I remember driving home from that appointment and I called my sister and cried.  I cried for Julia - for the pain she has had to endure and the bravery she has shown at such a young age.  I cried for myself - what had I done wrong?  Why me?  Why Julia?  What was going to happen?  Would my baby be able to see out of both eyes?

My sister was wonderful and just let me cry.  She didn't try to fix it or make it better, she just listened.  So far all of you wondering how you can help a friend in a similar situation, here is some advice.

Don't say:

- It is going to be okay.  You don't know that and can't guarantee it.  A better choice of words: I know this is difficult and the future is scary, but I will walk with you to the other side.

- It could be worse.  She/He could have cancer, heart disease, etc.  We know it could be worse.  We visit hospitals all the time with our children and we see other kids in terrible health situations.  But we don't need to hear this right now.  Because right now it is "worse" for us.  It is our baby and we are scared and angry and upset.  A better choice of words:  This is horrible.  It is not fair that your child is going through this.  It is okay to be upset, afraid, and angry.  How are you really feeling?

- At least she/he has a good eye.  Again, we know this.  And while we are thankful for this - it doesn't help to be reminded in this moment.  We are scared, sad, and angry about the other eye (leg, arm, whatever the case may be).  A better choice of words: What is her prognosis?  Do you want to tell me about the situation?  How can I help you while you go through this?

I think most of all we just want to be validated.  We may feel like our world is crashing down around us and we need someone to understand that.  To hear us vent, be scared and rant about how unfair this whole situation is.  Someone to listen.

I know that I have felt lots of emotions surrounding Julia and her "eye."  It has been a roller coaster ride that is neverending.  I have wondered, "Did I do something during the pregnancy?"  "What did I do to make God angry?"  "Why is this happening?"

A couple weeks ago at church I heard a new worship song.  Here are the lyrics:

All this pain
I wonder if I’ll ever find my way
I wonder if my life could really change at all
All this earth
Could all that is lost ever be found
Could a garden come up from this ground at all

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

All around
Hope is springing up from this old ground
Out of chaos life is being found in You

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

You make me new, You are making me new
You make me new, You are making me new
You are making me new

And I realized, God is making me new.  He is making beautiful things out of the dust.  Don't get me wrong, it isn't easy or fun.  This is the challenge my daughter has and I am going to let God make something beautiful out of it.  I have never liked the Christian platitude that "He turns a mess into a message."  When I am in a "mess," the last thing I need to hear is that God is going to use it for his glory.  Really?  God gave me pain and suffering on purpose so that He can have a message?  He made my daughter suffer so that He can have a testimony.  I don't buy it.  I'm not sure why some people suffer in certain ways but I know that this journey is changing me.  And I am going to try to let it change me for the better.  Not for a "message" or "testimony" but because He cares about me.  God loves me and wants my life to be a garden springing out of the chaos of this world.  So in the chaos, pain, hurt and fear - I will find beauty in the dust:

He is making something beautiful out of us:

And if you want to listen to the song, here is a link:

You Make Beautiful Things - song