Emotional

I seem to be an emotional wreck lately.  I've been stressed and edgy which turns me into a "cry at the drop of a hat" kind of person.  This last surgery for Julia took a toll on my emotions and I still don't feel quite right.  My biggest fear now is that we have been 7 weeks (YES, SEVEN weeks) without a contact or patch.  Her eye is constantly turned in now. My mind begins to race and I begin to think that we are missing the window - that this critical time when her brain should be connecting with her eye is flying past and we are MISSING it.  Then I obsess and worry and cry and sometimes turn into an OCD crazy person.   (My poor husband gets the brunt of that last one).

Her poor little eye.

I want to be in control.  I want a plan.  I want to make a list and check everything off, one by one. 

1.  Cataract surgery - check
2.  Wear contact - check
3. Patch her stronger eye - check
4. Get an IOL - check
5.  Julia can see - check

See how easy that would be?  Why can't it work that way?  Instead we have had -

1.  Cataract surgery - check
2. Can't find a contact to fit - check
3.  Finally find a contact - check
4.  Take out contact because of eye infection - check
5.  One month later lose the contact  - check
6.  Fight with insurance to pay for another contact - check
7.  Get a spare contact (that isn't the right prescription but is at least something) - check
8.  Lose the spare contact - check
8.  Have another surgery - check
9.  Wait what seems like forever to put contact back in - check
10.  Watch your daughter's eye slowly turn in more and more - check

To take back some semblence of control I asked the PO about glasses.  The first doc said no - that it would be a waste because the prescription for her aphakic eye (the eye with no lens) would be so high that it would be like looking through a magnifying glass.  Because the images would be so big, the brain would shut it off anyway.  Keep in mind this was the surgeon.

I sat on this for a couple weeks and then decided I wanted another opinion.  So I talked with the PO that handles Julia's vision - the doctor that determines her presciptions, fits her for contacts and helps with patching.  He said that we can do glasses but that it is the least successful option and most kids only tolerate them when patched.  I said that I didn't care - I needed something.  So off to the optical shop we went and got these:

But of course they are pink (I just couldn't find a picture of the pink ones).  They are really cute and hopefully will be in soon.  We will find out on Wednesday when we see the doc if we can put her contact back in.  We are caught in a horrible catch 22.  She desperately needs to wear the contact to restore her vision.  But in order to avoid a repeat of the scar tissue and regrowth, she desperately needs drops.  Lots of drops.  All day long.  If she wears the contact, the drops don't get into her eye - they are soaked into the contact.  Which puts her eye at risk and also ruins the contact.  But she needs the contact to regain vision and she needs her eye to not grow scar tissue to regain vision too!  Ack!  It is such a love/hate relationship.  I hate that she cannot wear her contact right now.  But I do love that I don't have to worry about losing it or putting it in.  Maybe I should just try to enjoy this time of no contact and no patch.  But then the eye keeps turning and turning.

I know it is vanity to be upset at an eye turning in.  But as a mom, I just want my little girl to be happy, accepted and "normal" (whatever that is).  The stares with a patch are bad enough.  But I also catch glances now because of the eye turn. 

The kids had their pictures taken and even the photographer commented on her eye.  It was so obvious in the pictures that I came home and cried.  Again - I know it is vanity, but my heart hurts for everything she has to go through.  At daycare today, when I was picking up the kids, I had to put in her eyedrops.  Another mom commented, "She handles that so well.  She must be used to the drops."  I don't want my daughter to be "used to eye drops!"

I guess I am having a small (okay big) pity party.  Maybe I didn't "grieve" when I found out about her condition.  I was so focused on getting through the initial surgery and getting a contact that I didn't really "feel" anything.  Now that we are just waiting and waiting, I am "feeling" a lot!  And I am angry, upset, terrified and angry.  Did I mention I was angry?  And upset?  And crying at the drop of a hat?

But all these emotions are worth it.  I wouldn't trade them because with all these emotions I got a beautiful little girl.  A sweet, happy, loveable, kissable, squeezable little girl.  Who right now doesn't know that her eye is turning and just loves smiles, hugs, kisses and her brother.

Turning Two!

My little boy has turned 2.  He is no longer that snuggly, small baby that falls asleep in your arms and needs you every minute of the day.  He is a little boy - a rough and tumble, "I do it," climb on everything, big laughs, name all the construction equipment little boy.  He says "I love you Mommy" and my heart melts as much as it did the first time I saw the little flicker of a heartbeat on an ultrasound.  He asks for the "sunshine song" every night before bed.  I wish I could permanently imprint every single moment in my mind - I never want to forget his smiles, his laughs, his funny sayings, his adventurous spirit.  He still snuggles, still wants to be held, and occasionally falls asleep in my arms.  He doesn't need me every minute of the day, but I am still there for every minute.  Watching, remembering, trying to capture time as it flies by. 

It seems like just yesterday that I was counting down the days to the end of my pregnancy, waddling around, and going through labor.  Wasn't he just laid on my chest in the hospital?  The little 8 lb bundle is now a 29 pound little boy with an attitude and a brilliant mind.

There is something special about a mother-son relationship.  I cherish it.  It is beyond anything I could have ever imagined. 

36 weeks pregnant

Newborn

One year old

Two years old!

Eating cake.

I love my sweet boy.

E is for Easter...and for Eye Shield

Easter was great.  Jed had a great time with the egg hunts and candy.  Julia didn't really know that it was a special day, but we enjoyed the time together.  Jed went to two egg hunts on Saturday and then had 2 more egg hunts on Sunday with family.  At the first egg hunt, he wanted the eggs, but he wanted to open each one before he tried to find another one.  As a result, he only got a few eggs at each hunt.  By Sunday he had gotten the hang of it and knew the key was to grab and run!  We celebrated our risen Savior at church on Sunday by serving in the nursery.  Julia had pretty much recovered from surgery but still was wearing the eye shield and required drops every 2 hours.

Look what the Easter bunny brought!



Enjoying the treats!

Julia with her treats.

Yum!

Ready for church.

Egg Hunt!

As far as Julia's eye - so far so good.  We had a follow up appointment with the surgeon the day after surgery.  We found out that the surgery was more intensive than they had thought it would be.  Julia's iris had "fallen back" and fused with the lens.  The lens had regrown over the pupil and her pupil had shrunk to a miniscule size because of all the regrowth.  The surgeon had to snip the iris from the lens with tiny, tiny scissors and clear out all the regrowth.  Her pupil is much bigger now.

A week later we went for another follow up (after doing drops every 2 hours all week) and the eye still looks great.  They are really pleased with the results.  We are able to decrease the drops to every 3 hours and we are going back in 3 weeks.  They originally were going to wait 5 weeks but I was concerned about the length of time she has gone without a contact.  The doc doesn't want her to wear her contact yet because it will block the drops from getting to her eye and they really want to be aggressive with the drops to keep the inflammation and regrowth down.  So we go in 3 weeks to see if we can put the contact back in - it will have been almost 7 weeks of no contact by that time.  She also has to wear the eye shield for another week. 

For all you eye moms - I've found a great trick for the eye shield.  So if your kiddos have to wear one after surgery, here is what you do.  Take some scissors and cut the center out of an eye patch.  The remaining "sticky" part of the patch is the perfect size and shape to stick to the edges of the plastic eye shield.  That way you don't have to have a ton of tape all over their faces to keep the shield on!  Hopefully you won't ever need to use that trick - but if you do, it works well!

You can see the "patch" holding the eye shield in this pic.





Home

We are home!  I am so glad that surgery is over.  Julia was a champ.  She always is - such a brave little trooper.  Even though she was starving, she was great.  So here is the rundown:

We found out last Tuesday (quite unexpectedly) that Julia needed another surgery.  After some crazy scheduling, we found out it would be today (Thursday).  So last night she could not have any formula after 2 am and nothing at all after 4 am.  I tried to wake her at 3:45 to have some pedialyte but she refused.  My Julia is headstrong, and if she isn't hungry, she will NOT eat.

So we left the house at 5 am so we could be at the hospital by 6:15.  We got there, got checked in and Julia was weighed, measured and changed into a gown.

We then had to answer the same questions over and over and talked with the surgeon, the nurse practicioner, the anestheiologist and the fellow.  They put a mark over her right eye to make sure they did surgery on the correct eye!

Then it was time to take her away.  They would give her some gas to go to sleep, then do the iv, insert a breathing tube and the surgery.  It is so hard handing over your baby.

Then you wait and wait and wait.  You check the clock and pace and think and pray.  Finally, after what feels like an eternity, the surgeon came in and said that everything went fine.  He said that they were able to get out the entire membrane, open the pupil and her eyes look great.  He did tell us that he wants to be more "aggressive" with the drops to try and prevent this from happening again (think every 2 hours!).  Then we waited for a little bit more and the phone in our room rang and they told us to go to recovery.

In recovery, Julia was still sleeping and hooked to monitors and had an iv.  She looked pitiful.  When I picked her up she became really agitated and was rubbing her eyes and fussing.  They gave her pain meds in her iv and by mouth.  She was able to rub off her eye shield so they had to retape it.  I fed her some pedialyte and we were able to walk back to our room in the Same Day Surgery area. 

She was still very agitated and fussy.  She then projectile vomited all the pedialyte.  It was awesome (and by awesome I mean disgusting!).  She calmed down after that.  So we sat and let her rest.  The nurse ordered some arm splints to keep her from rubbing her eye shield.  After sitting for about an hour, the nurse took out her iv and we were able to go home.  So we loaded up and brought Julia home. 

She slept most of the day.  She had lots of bottles in the afternoon, probably to make up from not eating all morning.  I am just so glad that it is over!  I appreciate all the prayers from everyone!  Hopefully it is a long, long time before we have to do this again!

I am still worried because it has been about 3 weeks without patching because of the lost contact and then surgery.  I am not sure when we can put in a contact again and start patching.  Part of me hopes it is soon so we can start forcing that eye to work and another part of me is enjoying not having to worry about the contact or the patch!





Zoo

Spring break is here and I am off work for an entire week!  Unfortunately Julia is having surgery on Thursday, but I am determined to enjoy the other days off (well, not Friday because she will be recovering and have to see the doc that day).

Yesterday had its ups and downs.  It started with lots of difficulty getting her contact in.  While she was laying on the floor playing with a teething ring, I unpacked all of Jed's summer clothes to switch out his wardrobe.  I moved her into his room while I packed up clothes.   When I picked her up I realized her contact was gone.  I searched and searched and searched and couldn't find it.  And the heartbreaking thing is that I didn't know when to stop.  How long do you keep looking for a miniscule, yet expensive, little peice of plastic/silicone/whatever it is.  I had a good cry and a small pity party (why me, why Julia, how am I going to get through this, etc) and then moved on.  Jed played outside on the deck in his little pool and we enjoyed the rest of the day.  It is hard to believe that it is the first week of April and we could already play outside in the pool!

Today we went to the zoo.  St. Louis has the best zoo (and it is free!).  My sister, her kids, my other neices, and my mom and dad went too.  We had a great time.  It was Julia and Jed's first time there.  Jed was a little (well a lot) rambunctious and demanded to run the whole time.  He wouldn't sit in the stroller, he wanted to RUN.  But he loved the animals and had a great time.

In the petting zoo.

Playing in the children's zoo.

He found those pink glasses in the jeep.

Chillin in the stroller.

Finally a pic of an animal - sort of.

So I am trying to keep busy to keep my mind of Julia's surgery.  I know it will go fine and everything will be okay.  I just don't want any more surprizes.  So if you think about it - say a little prayer for Julia on Friday.