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!





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.