What a difference a year makes.

Exactly one year ago, on this day, I was sitting at my very first appointment at the pediatric opthamologist.  I knew something was terribly wrong with Julia's eye.  I could tell in the way the pediatrician had talked to us at her well-baby visit the evening before.

This is the day of the appointment.  I immediately noticed the cataract in the picture.

That day is pretty blurry, yet some things are crystal clear.  I remember what I was wearing (black pants/purple sweater) and what Julia was wearing (turquoise flower outfit).  Julia was amazing all day.  We were there for several hours doing several tests.  I was terrified that she would scream, because she had been screaming most of her short life.  But she didn't.  I think she just knew, in her baby wisdom, that this was a rough day for mommy and she was quiet the whole day.

I remember hearing the words "cataract, surgery, contact lens."  I know I asked what would happen if we didn't have surgery.  Getting the answer, "She will be blind in that eye," was not reassuring.  I remember the fellow explaining that the lens is shaped like an M&M and they were going to "suck" the chocolate out (that is the cataract) and I remember being told about a stalk.

Waiting for first surgery.

I actually didn't freak out until the next day.  Once I got on google and started doing some research, I realized that my daughter probably had phpv.  I realized we would be patching.  And I was terrified that this wouldn't work.  That my baby wouldn't see.  That her eye wouldn't grow and wouldn't develop.

And then we waited for surgery.

Which is ironic, because here we are again.  One year later, and we are again waiting for surgery.

We have been through 3 surgeries, countless patches, at least 10 contact lenses, 3 sets of glasses and probably 15 eye doctor appointments.  I've endured the stares, the comments, the snickers and laughs from strangers.  I've also experienced the support of wonderful imoms, friends and family. 

After second surgery.

Other imom's told me, "One day your life won't be consumed by the EYE."  I don't think I believed them.  But it has happened.  Her day is more about being an active toddler and less about the EYE.  Yes, she wears glasses.  And yes, she still patches.  But she also walks, climbs, plays with toys, and throws food off her highchair.  Don't get me wrong - the EYE is always there, in the back of my mind.  But I am learning to trust my mommy instinct and trust the doctors.

We lost a lot of these.

I can't believe it has been an entire year since we first learned about the EYE. 

This year was long, painful, wonderful and momentous.  It inched along like a turtle, yet flew by in an instant.

I never imagined this day would come.  A day where I finally feel like we are normal.  Just a little family, living life, enjoying one another, and sticking patches on an eye.

My little man.

My beautiful doll.

LOVE

 

 

Happy Mother's Day

Happy Mother's Day to all the wonderful moms out there.  This mom thing is hard - no lie.  You sign up for this gig and there are no guarantees.  It is so painful, heart wrenching, and scary that your heart wants to burst.  Then it is joyful, beautiful and so amazing your heart wants to burst.

I have always wanted to be a mom.  I don't think I will ever forget the emotional roller coaster of trying to get pregnant.  I know my journey was no where near as difficult and challenging as others.  But I do know that the month after month of negative pregnancy tests was hard.  It didn't take long to get pregnant with Jed.  Julia was another story.  She seems to have been difficult from the very beginning!  And in between the two we had a miscarriage.  It was heartbreaking and painful and I still think of that baby.  But then I squeeze my two little ones and my heart continues to beat.

During my pregnancies I was an anxious mess.  I was so worried of losing my baby.  Even past the first trimester - I was afraid of losing them.  The end was the worst.  I was terrified to make it to 39 weeks and then have a cord accident or some other freak occurance and lose my baby.  I was so focused on making it through the pregnancy that I never stopped to think about after.  It never occurred to me that my baby would have any special needs or health problems. 

Julia's eye took us by surprize.  And I still sometimes feel guilt.  When I am low, and feeling like I can't do anything right - it is then that I feel like I failed.  I couldn't even grow a "healthy" baby.  I somehow failed my beautiful girl in the second trimester.  When the tiny blood vessels in her eye were supposed to dissapate, my body failed.  Her eye didn't form the way it should.  Rationally I know that this is not my fault, that there was nothing I could have done different.  Julia just happened to be the 1 in 10,000 who are born with a cataract.  But the emotional part of me doesn't understand that and longs to have done something different.

But here we are.  We have a rambunctious two year old boy whose smile lights a room.  He is funny and smart and handsome.  And we have a beautiful 7 month old who is starting to crawl and really starting to smile.  She is perfect and made our family complete.

I often hear people say, "if I could go back, I wouldn't change anything.  The struggle made me who I am today."  I will freely admit that I am not there yet.  If I was able to go back and change things for Julia so that she didn't have to have surgeries, wear a contact or suffer through patching - I would.  In a heartbeat, I would.  Maybe when she is older she will be able to say the struggle made her the strong woman she is - but right now I would do anything to make things easier for my baby.  That is the heart of a mom. 

Happy Mother's Day!

Disappointed

I am pretty upset.  Not sure this post will make a lot of sense.  And I am definitely not in the mood to put up in pictures.

Julia had her eye appointment today.  It did not go well.  We had thought we would just get a spare contact, check her prescription and order a new contact.  Our doc put in a spare contact and then started looking at her eye with the lights and the little microscope thing (I really should figure out what those instruments are called).  He commented that her pupil seemed smaller than before.

So he took her to the treatment table and we held her down and really looked at her eye.  He told me he had bad news.

Julia has formed a membrane over her pupil.  If you really look for it you can see it.  The cells around where her lens was removed have regrown over her pupil and are blocking her vision.  He dilated her eye so that she can see a little better - with the pupil bigger she can see more "around" the membrane.

The really bad news - it has to be surgically removed - and soon.  Like day after tomorrow.  They are calling me tomorrow if they can squeeze her into the surgery schedule on Thursday.  If they can't we will keep her eye dilated with drops to help her see until we can get her into surgery.  She will technically be having a membranectomy.  Sounds fun right?

I am so mad and so frustrated and angry and sad and nervous for my baby.  It really feels like we just cannot catch a break.  Do I have a bullseye on my back?

So say some prayers for Julia.  I'll post more later with details - probably after surgery if we are going in on Thursday.

Some Pics

So I found a few more pics that I wanted to share - some pics that document the beginning of our journey with Julia's eye.

Here is a pic from right after surgery:

And the one right above is once we got home. 

And even before surgery - you can really see the cataract in these photo:

And this is a few weeks after surgery.  Because we couldn't get a contact right away and couldn't start patching, her eye started to turn inward. 



Surgery

Julia's surgery was scheduled for December 22nd.  At first, she was an emergency add-in to the surgeon's full schedule.  So for several days we did not have a time for the surgery because she was going to be "squeezed" in.  The day before surgery, we got a call that the doctor had a cancellation and they were re-doing the schedule.  She was the youngest patient, so she would be the first surgery of the day.  I trusted the surgeon as he was the best in the area (people fly in all the way from California to see him) and he does this type of surgery all the time.  Julia could not have any formula after 2 am, no liquids at all after 4 am and we had to be at the hospital at 6am.

Children's Hospital is wonderful!  Everyone was so friendly and helpful and supportive of the parents.  My mom went with me and James for the surgery.  We got there, checked in and were taken back to a room in the day surgery area.  Julia was put in a little gown and she had to have 2 different drops in her eyes three times - 5 minutes apart.  She was amazingly happy.  Here she is on the hospital "crib":

When they came to get her for surgery, I was so scared.  I won't lie and say I was strong - I wasn't.  I cried as the nurse carried her away.  They told us it would be a couple hours depending on what they found.  They were doing a EUA (exam under anesthesia), a lensectomy and vitrectomy.  They did the iv after giving her some gas so I didn't have to see that.  Thankfully, they were back to see us in about 1 1/2 hours.  The doctor reported that everything had gone really well.  They had removed the cataract and when they went to take out the "stalk" it had just fallen away.  It was still attached at the back of the eye, but the retina was good and he was very optimistic about her regaining vision in that eye.  I was so happy!  The surgeon came and told us basically the same thing as the other doctor.  Then the nurses came and told me the best news - we could go back to recovery and see Julia.  We went into recovery and she was all swaddled and cozy.  We carried her back to our room and she started to wake up.  We fed her some pedialyte and some formula.  Since she kept that down, we were able to go home!  She had an eye shield that had to stay on until her appointment the next day, but I could tell that her pupil now looked black and normal!



She actually was fine the rest of the day!  We planned to go back to Children's the next morning to have the shield taken off and have her eye looked at.  We weren't sure when she would be getting her contact but we were hopeful that it would be soon.  I was just glad to have the surgery behind us so we could move forward and start saving her sight!