Update on Millie's Eye

For those who are wondering...here is an update (in a nutshell) on Millie's eye.

(isn't she cute?? I love her!)

We finally got her into the doctor here.  There are only a handful, and of course, we wanted the best care (as any parent would) for our Millie...so we waited and waited.  

Got her in.  

He answered lots of unanswered questions, although there is still some unknown.

He evaluated her.
Her pressure was up.  37!!!  It's supposed to be below 20.  We are now putting drops in her eye twice a day.  Since the first appointment we've had her pressure checked again, 15-17.  The drops are working! No surgery. 

She has a condition called PHPV.  It stands for Persistent Hyperplastic Primary Vitreous.  Which is where the space at the back of the eye, behind the lens, is normally filled with a clear jelly.  This jelly is called the vitreous.  Millie was born with a hazy, scarred vitreous.

She also has optic nerve hypoplasia.  Her optic nerve didn't fully develop.  At this time, we (meaning the doctor) don't know how developed it is.  Time will tell. 

They don't know what caused it.  It is just a birth defect.  Her eye just didn't grow normally in those first few weeks of development.  

Now, she wears a contact, because her lens in her eye is gone.  This contact takes place of the lens.  Did you ever know that babies could wear contacts?  Neither did we.  Do we hate changing it?  YES!  Are we good at changing it everyday?  No.  But we are trying to get better.  It is complete torture to us, as parents, and to Millie as well.  So we try to take it out and clean it once a week.  Then we'll move it to every three days and hopefully we'll get so good at taking it out and putting it in that it will become part of our daily and nightly routine.  Baby steps.  Baby steps.  

We will continue to have her pressure checked.  And hopefully it stays down.  If not, she will have to get surgery...we are hoping and praying that it continues to do well.  And so far it has!  

We are still patching Millie's good eye.  (is that horrible I call it the 'good' eye and the 'bad' eye?)  This strengthens the defective eye so that it will follow with the other eye and give her the best possible vision for her.  She doesn't like it, and will pull of the patch.  We are getting really good at distracting her!

Can she see? Yes, she can see perfectly.  Just with one eye, and possibly with the other...just not like as you and I see with both eyes.  But hey, she doesn't know any different.  So how she sees is how you and I see.  She does run into walls, tables, chairs, etc. quite often, but who knows if that is due to her eye or just because. 

So that's the update. 

I always tell myself...it could be worse!  We are so grateful and blessed!

see more about her eye. here.

A Pirates Life

Thank you so much for the comments on the space saver and highchair post.  Cason and I read them together and the feedback was very helpful!!

Oh what would a pirates life be like?

Just ask Millie.  She knows!

On Friday, I remembered that I need to get back into the habit of patching Millie's eye.

I absolutely hate doing it.
(and hate is a strong word)

I have only done it one other time since we've lived here.
And I'm supposed to do it everyday.
It is pure torture for the both of us.
But it has to be done to make her weak eye stronger.

So...I opened that patch up.  And started to cover her eye.
She reached and grabbed and pulled at my hands.
She didn't want it.
Well, she wanted it, but not on her eye.
Usually she fusses and cries until the patch comes off.

Not this time!

The first ten minutes passed...not a single tear.

And the next ten minutes...nothing.

Then the next ten minutes...a few whines here and there, but nothing like when I've patched her eye before.

Maybe, it's the remote control that distracted her.  She is in love with that thing.

   

   

   

And then the patch came off.

I couldn't believe how well those 30 minutes went.
She must not mind the experience of a pirates life.
Either that, or she doesn't quite know how to pull it off yet.

It was a successful patching session, and because of it,
I won't be so hesitant the next time I remember.

Which will hopefully be today.

Millie Lou

Yes, I know I'm up late...but I have been googling things like cataract, scar tissue, lens development, optic nerve development, glaucoma. You get the picture.  

Today was another day at the doctors office.

Dr. Wright tested her eye pressure again.  Last visit it was a 20.  All I know is that if it's above 20 its dangerous.  Today hers was a 35.  He gave us some eye drops that will hopefully reduce the pressure...if the drops don't work they have to poke a hole in her eye and drain out the fluid. 

He also told us that today was the first time he could see all the way back to the optic nerve.  The optic nerve is like a cable that connects the brain to the eye.  Millie's optic nerve didn't develop all the way.  I don't know how severe it is and neither does the doctor, because it is hard to tell at this point...but we are not giving up.  I am hopeful that she can still see.  Actually, I know she can see.  We just don't know how well.  

Everyday is different.  

One day everything looks great.  

The next day it might not be so great.

I still have faith that everything will work out in the end.  I am hopeful.  I am grateful.  Things could be worse.  I just have to keep telling myself that.  Everything will work out.  And she will be fine.  At least she's healthy, happy, coos, kicks her legs, looks around, and is cute! 

(these pictures were taken right after we got home from the doctor @ 7 weeks 4 days old) 

look at those rolls on her legs starting to form.  Love it!

I just love her.

You-Tah

We just got back from Utah yesterday, and it was great!  

Cason did a triathlon-which unfortunately I didn't go to.  Wish I would have. 

His time was 30 minutes faster than last time!  

Way to go Case!

I ran a 5k with some friends to earn money for a mom who has cancer.

Millie loved the stroller ride and I loved the exercise. 

My dad introduced me to sushi.

I have tried it before but hated it...now I think I love it!

Millie was held and cuddled and loved.

Although a little blurry, this is a priceless moment.

Look at those long eyelashes!  I love them. 

We went boating on Monday night for a couple hours.  

The weather couldn't be more perfect.

This is my all time favorite picture!  

Millie sure loves Grandma!

Loved seeing my family.

Glad they finally got to meet Millie.

Miss them.

Love them.

Millie Update:  On our way home from Utah we stopped by the doctors office and had her eye checked.

He said everything looked good except there is a little pressure (glaucoma).  

This can be caused by the drops that we put in her eye.

We stopped the drops and will go for another check up on Friday.

She got her contact put in.  

Although it irritated her eye at first, I can already tell she can see better.

She doesn't have to turn her head quite as far to see things.

She coo's alot more and gazes at things longer.

It is so cute!

Went in again today for a check up.  The doctor said things don't look good...they look great!!

That was music to my ears!

up uP UP

Things are looking up!
We went to another appointment today and they said that things are looking great!

This is Millie 2 days after surgery.
It's still healing, but I am amazed at the outcome for such a big surgery.

She is back to her normal self.
Now we just have to get back to her schedule...working at it.
Her eye looks slightly different from her left one, but that's what will make her...her! :)

We got the go ahead to go to Utah this week for Cason's triathlon and
for my family to meet the little Miss.
                                                                
Can't wait for them to meet her!                                                    

Post Surgery Update

These last few days have been quite the emotional roller coaster.  

I think I prefer the unknown a lot better before we met with the doctor 

and knew exactly what was going on.

We experienced quite a miracle!!

Millie's surgery went well.  

Yesterday was a hard day.

Last night was hard too. 

All of this has been hard.

But we're getting through it and that's good right?!

Right when we walked into the recovery room I burst into tears.

It was so hard to see my baby like that and to know what she had to go through.

What's a mom to do?

Relaying the news to my family and Millie waking up at the same time starving!

Today we went to her check up and they took off her eye patch.

I shouted for joy!! 

It was difficult to feed her with that thing on.

It just got in the way...it reminded me of the first few days she was born.

Here is an edited email Cason wrote to our families explaining exactly what happened:

(if you care to read)

We wanted to let you know Millie's surgery was a success!  Yesterday she was diagnosed with a cataract in her right eye which if not removed, would not allow her to see out of that eye.  A cataract is the clouding of the eye's lens.  The lens is what helps our eye focus.  She went into immediate surgery today to have the clouding removed. Once the Dr was in operation, he realized the lens of Millie's eye never developed.  The only remains of a lens was white scar tissue.  In 25 years of performing pediatric surgery, he has only seen a case like Millie's five times.  Once in surgery, there was no "clouding of the eyes lens" because the lens was not there.  He decided he had to clear the scar tissue from the eye and remove the scarred lens completely.  The force it took to remove the scar tissue put a lot of stress and caused her pupil to now be slightly misshapen.  The tissue had to be removed in order for her to see through that eye, the slight misshape to the pupil then was minimal.  The good news is what had to be done was done and it was a success.  The future however is unknown.  The Dr said it is likely that this is not her last surgery.  The fact that she doesn't have a lens in her eye means she will always wear a contact lens and be more suseptive to future complications.  Millie continues to be so sweet through all of this.  The Dr has told us she will not experience much pain in her recovery.

We recognize that the faith, thoughts and prayers of all of you allowed the Dr to perform a successful surgery. 

Thank you for thinking of us, and thank you for your thoughts and prayers. 

We tried and continue to try to email, text and return phone calls...

Even though we weren't able to respond to all, 

just know that they are what keep Cason and me going.

So thank you!!

(Sorry there isn't much explanation of the series of events prior to this surgery.  

That'll have to come another day.)

Surgery

picture taken by jylareannphotography

After many doctors appointments and a long day at the doctor in Los Angeles,
Millie will be going in for surgery tomorrow.

The doctor told me today that she has a cataract and they will be putting her under to operate.

I would be lying if I told you I wasn't nervous for my baby, because I am, but I know that this is best for her and her future eye sight. 

It makes me cry to see my baby girl go through this.  It's hard to not ask the big "WHY?" but I'll be honest, I have asked that many times.  

Why does such a perfect little angel have to go through this?  

But I know that this experience will only make me stronger.  

I am grateful that it isn't something more serious.  

It could be 10x worse.

This is a trial that we are facing and will learn, have already learned and continue to learn from.  

Cason gave her a blessing last night, before todays appointment, and will give her another blessing tonight before the big surgery.  We are turning it over to the Lord and putting it in His hands and know that everything will be okay in the end.  

I don't ever want to put Millie down.  I just hold her and cuddle her in her white rocking chair.

I kiss her little cheekies 5 million times a day and never stop.  

When I look at her she makes me cry.  It hurts me to know that something is wrong with her eye. 

I get the smallest glimpse of how much our Savior loves each of us.  

I just want to take this from her.  

I will deal with it.  I don't want her to.  

But I know that she is in good hands and will be taken care of.

I will give you more details at a later date...

but if you wouldn't mind just saying a simple prayer for our little Millie.

It means so much to us.  So thank you.

I have faith that everything will be okay.