Waiting...

Now it is the waiting game.  The nurse from the eye clinic called me yesterday at work and asked about Julia's cough (she had coughed while she was seeing the doc).  I told her it wasn't bad, she didn't have snot or a fever.  She still said I had to take her to the pediatrician ASAP to get her cleared for anesthesia.  So I leave work (which means I lose pay) and take her to the pediatrician and he says she is completely healthy.  So I call the nurse back and tell them she is fine.

Then I wait.

And I wait.

And I wait.

They finally call me late in the afternoon to tell me that the doctor wants to do surgery next week!  What!  I left work to see a pediatrician and now you are making us wait until next week?

Oh well.  At least now I'll be on spring break and won't have to miss work.  But now I have to deal with nerves for a whole week (and a contact that won't stay in).  At least we don't have to patch.  But we are back on drops 4 times a day.

So I am trying to relax and be normal until next Thursday.  Thankfully I have two munchkins that keep me pretty distracted!

Finally a smile!

Monkey see, monkey do!

Jumping together!

Fresh corn - yummy!

Patches and camo!  Well - no patch today.

In related eye news - Julia is very sensitive to light.  I knew that if we wanted to do anything outdoors this summer that she was going to need some shades.  For grins, I asked the WalMart optical shop if they carried any infant sunglasses.  They looked at me like I had grown another head.  Then I explained that Julia wore a contact and she looked at me like that second head had morphed into an alien!  Really? - you are an optical shop.  The "manager" came over and said that they can fit a pair of youth glasses with sunglass lenses but it is 80 dollars.  No thanks.  I ordered these instead:

Pretty cool!  They are actually lavender and pink and come with a looping strap for around her head.  They are symmetrical so there is no up or down when you put them on.  I hope she tolerates them!

So keep us in your prayers.  Surgery is Thursday and in the meantime we have to keep track of an ill-fitting contact and keep her eye dilated with drops.  We are just waiting, and waiting, and waiting...but enjoying life during the wait!

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.

Feeling better

I haven't blogged since Tuesday, when we lost Julia's contact.  I was trying to stay so positive, looking on the bright side, accepting the inevitable.  Well, on Wednesday morning when we went out to load the kids into the care to go to daycare and work, we realized someone had bashed in the rear passenger window on our SUV.  This was the straw that broke the camel's back and I lost it.  Just when we had settled into "normal" we have 2000 dollars of hail damage on our car, ear and eye infections in the kids, a lost contact and now a smashed window.  I needed a few days to fume, vent, cry and whine a little. It just felt that I could not win.  Was it not enough that we were dealing with Julia's eye and all the things that come with that?  Isn't that enough for one family?  Why all this extra stuff?  I basically needed a small pity party.

 Now that I am done with my pity party, I feel like I can face the world again.  The sun is back out and the world looks a little brighter.

The day before the lost contact.

We are enjoying our week of no contact and no patch.  Her eye definitely turns in a lot more without her contact, but there is nothing we can do.  Her doc ordered her a new one and we are waiting for it to come in (it is made in Colorado).  She has her normal eye appointment on Tuesday anyway and may need a prescription change.  So the next few weeks could be interesting when it comes to the contact.  I am a bit nervous about this appointment because I have noticed her eye turning in a lot more even when she was wearing the contact.  And her good eye seemed to turn in sometimes as well.

The kids are finally feeling better and it seems the ear infections are clearing up.  Jed has been super rambunctious and has definitely hit the terrible twos.  This is how he "plays" with his sister's toys.

Saggy pants!

The playmat must be conquered!

I think the playmat conquered him!

But overall, we are feeling better.  The good weather is helping to lift our moods and keep our spirits up.  And Julia deciding to sleep through the night helped too!  I can't say that too loud.  If she hears me she will probably stop!

The day has arrived...

I knew this day would come eventually.  For the first month I absolutely dreaded it.  It made me sick to my stomach to think about it.  I agonized, dreaded and was anxious.  Then over the last month I have just come to accept that this day would finally arrive andt here was nothing I could do to change it.  Well, the day has come - Julia has lost a contact. 

I feel like I am handling it quite well.  I could scream and stomp my feet and go on about how life isn't fair - "Why Julia?  Why me?  There goes another 150 bucks we don't have.  This isn't fair."  But I'm not (well, maybe a little inside - but no complaining on the outside!).

I think I had prepared myself that she would lose some and to stress out is not going to make the contact magically appear.  She lost it somewhere at daycare.  I looked in her pack and play, the swing and the floor area where she plays.  I couldn't find it.  And since it isn't my house, I couldn't keep searching for hours and hours.  I had to let it go.  I just left - leaving instructions that if she found it to put it in the case I've left there.  I am not going to let a miniscule piece of silicon hydrogel ruin my day, my week or my life (or Julia's life).

I called the Dr. and he said he may have ordered a spare when he ordered the first one.  If he did, I can come pick it up tomorrow.  If not, he will order one.  We already had an appointment scheduled for Tuesday so we can get a new one then.  If she needs a new prescription on Tuesday, it will be under warranty and we can exchange it. 

I guess this is just part of the initiation into the "eye club."  Just one more thing to take in stride. 

I worry that she is going a few days without a contact and without patching.  The doc said that her eye will probably turn without the contact - and it really does.  She looks really cross eyed without it.  But again - nothing I can do.  I am choosing to remain calm and let this bump in the road roll off my back.  I may not do this next time, but for now. we are okay - even with a lost contact.

My new friends

Here is a pic of Kimberly, McCoy, me and Julia after our delightful dinner.  I have definitely found a new friend!

I am so thankful for all the internet "eye moms" that I've connected with!

When it rains...

Seems like life is a bit crazy again - okay, a lot crazy.  To start with, we had a hail storm yesterday evening.  Unfortunately it hit while James and I were shopping with the kids at Wal-Mart.  The hail was so big, it actually broke through the plexiglass skylights!  My poor car got a lot of damage.  The insurance adjustor is coming on Wednesday to make an estimate. 

Last night Jed would not sleep.  He kept coming into our room.  Over and over and over and over.  And repeat.  Eventually James slept in his room on the floor.  Hey, you do what you have to do.

This morning I noticed that Julia had some eye boogers.  I figured it was just from sleeping.  No big deal.  Well, during work, I got a text from daycare that Jed's eye was red but not goopy or watery.  Then I got another text that he had drainage from his ear.  So off to the doctor we went.  Turns out he has an ear infection and eye infection.  Our wonderful doc checked out Julia too and she also has an ear infection and eye infection.  Thankfully I had taken out her contact before we went because she had more goop in her eye.  I guess she gets a little vacation from her contact and patch.  This is her second eye infection since surgery.  It just seems that as soon as we all get well, the cycle starts over and the sickness just runs through the house.

To make matters worse, I was alone with the kids at the doctors so I went to Wal-Mart to pick up all their medicines.  They said it was going to take an HOUR so I wandered Wal-Mart with Jed and Julia.  They were out of popcorn chicken (Jed's favorite).  Then I noticed his diaper had leaked and soaked his pants.  So I had to buy him new pants to change into.  I fed him goldfish, oreos and lemonade as we wandered the store.  He was a mess with cookie all over him, snot on his face, goopy eyes and gunk coming out of his ears.  Then we waited and waited and waited.  An hour and a half later the prescriptions were ready but the insurance had denied them!  Twenty more minutes and it was worked out - but I realized I was THAT mom.  You know, the mom you judged before you had kids.  Before you had kids you saw the mom with the messy, wild kids that wouldn't stay in the cart and you wondered why she didn't control them?  I ask forgiveness for ever judging that mom - because I am now that mom.  With two sick kids who have reached the end of their rope - they were messy, snotty, crying and crazy.  But I finally made it out of there with two sets of eye drops and two sets of antibiotics!

On a good note, Julia turned 5 months on Thursday!

The other good news - Ortopad released their new patches!  And they have pink camo!  And leopard print.  There are new boys patches too.  I can't wait to order some.

You can find them here.

And last - just a pic of me and my babies.  I don't look the best, but I am happy.  They are my everything.





New Friends

I had the most amazing evening last night!  I was able to meet - in person - another mom of a kiddo with phpv!  I met her through this blog and found out she lives in my state (well, our state - since we both live here).  She is on the other side but her family lives near me.  She was going to be in town to visit family so we met for dinner.  The awesome thing is that her son is only 5 days younger than Julia - they are literally the exact same age.  So we are both in the same stage of this journey.

He was so very cute!  We talked about contacts and surgery, our fears of glaucoma and how odd it is that we have to pack contact cases and solution in our diaper bags with bottles and wipes!  I felt like I was talking to someone who really GOT me - who understood the fears, worries, concerns.  She had literally walked in my shoes and it was a connection I will always cherish.

I have met other great moms through blogs.  And while I don't get to see them in person, I can feel their support and know that I have great women to turn to for advice and a shoulder to lean on.  And I know that they GET it.

Eye moms are the best.  We are strong and resiliant.  We fight for our kids vision.  This war may be long and the battles rough - but we are going to see it through to the end.  I have to believe that when I put a contact in Julia's eye and she is screaming - I have to believe that I am doing the right thing.  When I patch her eye and she is grumpy and clingy - I have to believe that we will win this war in the end.  When I take her to the opthamologist and they put in drops and use a metal contraption to hold open her eye - I have to know that this is worth the fight.  That when she is 16 and has both eyes to see out of - that she will thank me.  I am going to do what is the very best for my daughter - even if it is hard, painful, heart-wrenching and difficult.  Cause that's what mom's do.

And Kimberly, the wonderful mom I met last night, she is doing the same thing for her beautiful baby boy. 

And a pic of us will follow - I was a goof and forgot my camera so as soon as Kimberly emails the pic of us and our babies - I'll post it!

Pics

Jed as a newborn.

Julia as a newborn.

Jed at one month

Julia at one month.

Jed at two months.

Julia at two months.

Jed at 3 months.

Julia at 3 months.

Jed at 4 months.

Julia at 4 months.

 

Big Brother!

Jed is getting so very big!  He will be 2 years old in about 6 weeks (where has the time gone?).  He is truly "all boy."  He loves "bang bangs" (guns), cars, trucks, trains and his workbench.  Everything is turned into a sword and his favorite movie is "How to train your dragon."  He is constantly asking for "dragon movie."  And when we say no, he asks "why?" 

He would sit and listen to books all day.  The problem is he wants the same book over and over and over and over....you get the picture.  I could never read "The Train Book," "Thumpity Thump gets dressed" or "Llama Llama Red Pajama" again and be perfectly okay.

He now knows who Mickey Mouse, Donald Duck and Bubble Guppies are.  And he asks for them.  Often.

He sleeps in a big boy bed with his Lighting McQueen bedspread.  I have been awakened a few times in the middle of the night with a small pair of eyes peering at me from the side of the bed (talk about a creepy feeling).  But for the most part he does well.

Our next mission will be potty training, but we are going to wait a few more months. 

He is good at climbing, jumping, dancing, playing and saying please.

And he is very good at being a big brother!  He loves Julia and has really never shown any jealousy.  I think he knew in his wise little mind that Julia just needs a little extra attention and he has always been okay with that.  He will say "Jooyeea" and kiss her little head.  He tries to smother her with kisses (and his body) but we usually step in.  He can always get her to smile much faster than we can!  I know that when she gets older she will be thankful to have such a wonderful brother to look after her.

Of course Dad's socks make good gloves!

My new baby sister!

Fire hat!

camo

So you might be wondering what camoflage has to do with Julia, eyes or anything else.  You see, my husband is an avid outdoorsman.  Hunting, fishing, camping - he does it all.  And I usually go with him.  So we both own a lot of camo.  When I found out that Jed was going to be a boy I received a lot of camo for our little boy.  Julia even has a onesie that says "my favorite color is camo." 

The interesting thing about camoflage is that you wear it to disappear - to blend in with the surroundings - to not be noticed.  When worn correctly you should not stick out from your environment, but literally become a part of it.

The irony is that now we are nothing like that.  Anywhere we go - we do not blend.  We are not invisible.  We are noticed - by everyone. 

Amazing how a tiny little patch can do that.

Gotta love big brother - loves his sister, patch or not!

The first few times I went out with Julia when she was patched I definitely noticed the stares, the double takes, the lingering glances. 

The first few Sundays at church we got a lot of questions and we patiently answered them.  Most people already knew because our church family had been praying for Julia and for her surgery.  Now at church no one notices or comments.  I love that.  I love that our church family has accepted her and she is now "just Julia" there.

But at Wal-Mart, the mall, even the doctor's office - we get questions, comments, glances.  Some are pure curiousity.  People genuinely want to know what is wrong, how we knew something was wrong, why she wears a patch.

Others are know-it-alls and assume that she had tear duct surgery (what?) or that she simply has a lazy eye.  (Then of course they ask how we knew she had a lazy eye at only 4 months old).

When they find out it was a cataract - they are amazed that infants can have them.  And the reactions we get when people hear she wears a contact!  Yikes!  You'd think we were vain or torturous!

I don't know if I will ever get used to the staring and questions.  I liked it much better when we blended into our surroundings.  Maybe with time we will blend again.  Maybe we won't blend, but others will blend and we won't notice their stares.  Maybe if she wore a camo patch.  :)

Sickness

Our house is finally healthy (knock on some serious wood).  It has been a rough couple of months.  We were already dealing with trying to find a contact that fit (see the last post) and staying on top of the reflux.  Well, Jed starting coughing one Sunday afternoon and it hit him so suddenly and seemed so severe that I took him to the pediatric urgent care.  They diagnosed croup and gave him a dose of steroids.  By Tuesday his eyes were full of green goop, his nose was simply disgusting and his cough was terrible.  So we went to the pediatrician and saw a nurse practictioner.  She diagnosed ear infections and some sort of viral infection, so he started antibiotics.  He was so miserable.  My baby has never felt so bad.

Fast forward to the end of the week.  By Friday Julia is coughing.  So I take her to the pediatrician and she tells me that it is probably a virus and there isn't much we can do.  She said to come back if it gets worse.  Well, by Sunday Julia is screaming all.the.time...  So we go to the nurse practioner (thank goodness our doctor's office has weekend hours!).  She says that the cough is making the reflux worse and there isn't much we can do.  She referred us to a pediatric gastro doc but I really didn't want to put Julia through even more testing and poking if it wasn't necessary.

Well, by Tuesday, I knew something was wrong with my baby. I even texted my good friend who is a nurse and told her:  "Something is wrong with my daughter and someone needs to figure it out."  We saw another nurse practioner since it was her doc's day off.  Julia had lost 6 ounces since Sunday and was on the verge of dehydration.  She wasn't eating because she felt so bad.  The NP sent us to the emergency room as she suspected that Julia had RSV or pertussis.  Both seemed very scary and I was not prepared to be sent to the ER!

To make matters worse, whatever she had seemed to have settled in her phpv eye.  It was all gunky and green.  We took the contact out.

So we went to Mercy Children's and saw a doc in the ER.  My baby had to get an IV, get blood drawn and have swabs taken of her nose and throat.  She started getting fluids while they did a chest xray and ran tests.

The docs came in and said the rapid RSV and influenza tests were negative and she seemed okay so we would be going home.  I had written out the check for the co-pay and was looking forward to going home when I noticed that her oxygen stats were hovering around 88-90.  I didn't realize this wasn't normal.  The alarms had sounded earlier, but no one had come in.  The nurse came in and said that her levels were low and she needed oxygen.  So they put in a nasal cannula and her stats went right up.  But then we were told that she would need to be admitted since she was requiring oxygen.  This is what my baby looked like:

So she was admitted to a room and we began a very long night.  Thankfully my mom and dad picked up Jed and my sister kept him for the night.  Everyone that came in the room had to wear a mask because she was being tested for pertussis.  By later in the evening she was off the oxygen.  It was a long night as she would have horrible coughing fits that caused her to gag and vomit.  I spent most of the night in the recliner holding her so she could sleep.

We were discharged the next day after we found out that she actually had tested positive for RSV.  It was funny.  The nurse came in to do the discharge and suddenly she is wearing a big yellow gown.  James said, "is that for us?"  He was joking around.  But she said, "yes, she has RSV so we have to wear these."  Home we went.  Her cough didn't get any better and she would be awake all night with terrible coughing fits.  Her contact had to stay out for a week while we did antibiotic ointment in her eye.  The next week she spiked a fever of 104 so we headed back to the pediatrician.  She ordered a chest x-ray and we found out Julia had pneumonia.  Thankfully she did not have to be admitted and just needed another round of antibiotics. 

She finally started to feel better even though she developed thrush from the antibiotics.

Now, a few weeks later, the sickness is all behind us. Finally.  It was such a long month.  I was so worried about her not wearing her contact and not being able to patch.  And I just wanted her to get better.  In hindsight - I'm sure what Jed had was RSV, it just isn't as dangerous in toddlers as it is in infants.

Now if we can just make it through the rest of flu season unscathed...