Preferred Patch Position

This is how Tommy would prefer to wear his patch.  We've had a rough patching week!  Not to mention, I added up how much we have spent on patches in these short 8 months... $190!  OUCH!

Patching... painful but worth it!

We saw the ophthalmologist a few weeks ago.  For the first time, they used the "teller cards" on Tommy.  These are cards with varying black and white lines that they use to determine visual acuity in infants.  They tested Tommy while patched and seemed pleased with the results.  They did many other checks that I have no idea about and involved a lot of head gear and lights.  Amazingly, little Tommy, who has developed a major case of stranger anxiety, cooperated beautifully!  The ophthalmologist, optometrist, and technician were all excited that he "tolerated his patch so well" and seemed to be benefiting from it greatly.  I had to laugh... while Tommy was doing just fine in the office in regards to his patch, he was already on his 2nd patch of the day and his appointment was at 8am!  I did remind them all that he hates it and we sometimes go through 8 patches per day, but they still seemed surprised that we kept up so well.  I am so thankful for our great daycare who keeps up on this painful process every day and for our family who endures his crankiness during patch time. Yes, there are days where patching is miserable and I feel sorry for Tommy and me and our whole family, that I want to give up on the whole thing!  But news like this, that Tommy's eyes are improving, makes all the stress and hassle worth it.  Our contact prescription went down again (+23 to +20) and his eye is growing.  All major strides for a baby with PFS (or PHPV).  Life is good.  I have a lot to be thankful for!

As if patching weren't enough.

We took a mini-vacation to a water-park last weekend.  Tommy's dad ran a marathon, so we tacked on a family vacation to it.  Overall it was tons of fun.  It is always great to have a few days off of work, cooking, laundry, and cleaning.  BUT... there is always a but, right?   Just before leaving, someone posted a question about baby goggles on an aphakic web page.  Baby goggles?  Yes, apparently in addition to worrying about LOSING a contact, I also had to worry about it getting infected with nasty pool-germs.  What?  Ok, so I know pools are gross, but as the mother of 4, I've gotten over a lot of my squeamish tendencies.  I fully believe in the 3-second rule, and I've looked the other way when I see Tommy chewing on one of his own shoes.  I can let myself forget all the 20/20 shows with the blacklights and sit on the bed in the hotel room, and although I know pools are gross, kids love water parks, and the germs never hurt anyone with a fully functional immune system.
But... when it comes to Tommy's eyes, I tend to be a little over-the-top wimpy.  According to moms on the website, the Silsoft contact he wears can absorb germs.  So any water that gets in his eye could be dangerous.  Of course, I read this at 8pm the night before we leave so there is no way I can call his ophthalmologist, so I have to believe in this.  Yuck, ugh, mini "woe is me" melt-down.  Now what?  Does he have to sit out and lose out on any fun?  Should I worry more when I give him a bath?
It all worked out fine, Tommy isn't old enough to do any slides, so I patched in the morning with contact in and basically held him while I watched his sisters have fun.  (My arms were TIRED!)  Each afternoon, I'd take the contact out and he could go in the kiddie-pool for a little bit and splash away at his heart's content.  I know, it wasn't a big deal, but it isn't FAIR!  I know, there are so many other worse things.  He is a healthy little boy and is making great progress.  But I was jealous.  Jealous of all those little babies splashing away in the pool without a care in the world.  And yes, he was one of them for a little bit each day, but for 6 hours, he was stuck watching with his patch on.  People were generally gracious about his patch- although I did want to get business cards printed up with his story so I wouldn't have to repeat myself... or listen when people thought he had a lazy-eye and shared story after story with me about themselves, their son/daughter/cousin/friend/etc.  I did patiently explain (when asked) or nod (when they assumed) but it was tiring.  If I'm this tired of what I have to deal with, I can't imagine how tired he must be of having to wear that itchy, hot, sticky patch each day.

Alphabet Soup

I haven't posted in a while... first, there isn't much going on that is new with Tommy's eyes.  That is good news, for sure!  But there is another reason.  I WANT to write a post on PHPV or PFV (whatever you want to call it).  But I can't.  I can't face it.  I know what it is, I know what it means, I know Tommy has it. What I can't do is face what it means.  Writing about it will make it more real.  I'll have to confront everything I have been pushing out of my mind.

So forgive me for my lack of posting, I'll get there.  Until then... enjoy this cute little face!

Day Off

Tommy lost his contact... again.  Lost it for good this time.  I don't know where or how.   He's been fussy lately (teething boy)- and I would have thought it would've popped out during one of his fits... nope.  I thought it might pop out when I made him cry (shriek) himself to sleep.  Nope.  I think it happened while his sisters were having breakfast while he was happily playing on the floor... the floor that was so nicely vacuumed later that day.  It wasn't in any of his normal spots, not in his carseat, and not at his daycare provider's house.  Gone.
Oddly, I was less frantic about this than I have been the other zillion times it has been lost.  I called the clinic to order a new one, we'll see if insurance pays.
Regardless, Tommy has enjoyed a patch-free, contact-free day!  No fits today, I guess we all need a day off now and then.

Family Business

I'm afraid our other 3 kids are too worried about Tommy and his contacts and patch.  I don't mean that they are worried about his future or are all doom and gloom.  They worry about the day-to-day stuff.  If they notice his patch is off, their first reaction is "Mommy!  Tommy's patch is off!" in near panic- even if it is the evening.  They worry about his contact and whether it is in or not.  My oldest was born a worrier- but she is constantly gazing into his eyes to make sure she sees it.  It is difficult to see, so she regularly sounds the alarm "I CAN'T SEE HIS CONTACT!"
It struck me most when Tommy rubbed his contact out last Friday on the drive home and it was sitting on his cheek.  My 4-year old was in the car yelling that Tommy lost his contact!  At first, I just thought she was trying to get in on the panic action.  Her 6-year old sister peers over the back seat and said "It's true, he lost his contact!"  Lo and Behold, the contact was sitting on his cheek, plain as day (and thankfully safe!)
While I am happy to have help in keeping track of all of this, other times I worry that they are too worried about non-kid stuff.  No 9 year old should have to worry about her brother's patching time.  (Although, if I am honest, she'd find something else to worry about if it wasn't that!)  No 4-year old or 6-year old should watch out for her brother's contact.
I guess that's just one more reason my girls will be spending time on a therapist's couch someday....

Telling our story

Tommy is now 5 1/2 months old.  His cataract is such a small part of who he is, that I don't even think about it on a daily basis.  Sure, I think about his contact (whether it is there or not) and his patch (and how much he hates it), but all that is just part of our routine... much like brushing teeth or getting dressed.  While I don't exactly forget that he has a patch, I don't often remember that it is strange for a baby to be wearing one!  So, it has started to surprise me when someone asks about it.  
I've had to explain the story quite a bit lately, as my husband gave a testimony in church a few weeks ago about small groups.  He told Tommy's story- it relates to small groups as our small group was an amazing source of support for us. 
Now a lot of people in our church (in our relatively small town) see us around town and ask about Tommy.  It is very difficult to explain the patch.  People think we patch the "bad eye" to protect it, or we previously patched the "bad eye" after surgery.  They are often surprised that we patch the "good eye" to make the "bad eye" stronger. 

Strangers are a different story.  I think I have it down pretty well, I usually tell them that he had a cataract at birth, similar to the cataract you get when you are older.  I also tell them that it is different, because 1) it is rare and 2) since a baby learns to see after birth, the cataract is a much bigger deal and we are working to correct his vision.  I tell them that he wears a contact, and laugh about how much it costs ($250 EACH, not for a year's worth!) I explain that we patch the "good eye" to make the cataract eye get strong.  Those who are interested will ask follow up questions, those who are bored will glaze over and be glad when I am done talking.  Interestingly enough, I have never had a negative experience with all of this.  I've caught people staring, which I completely understand, I tell them the story (whether they asked or not!) and it is fine.  We certainly have had quite a few kids ask us what happened, and I modify my above speech just a bit.  But really, no one has been malicious.  I've had a few "poor baby" or "isn't that terrible?" comments- and I agree with them, it is terrible that he had to go through this and will deal with a lot growing up with this.  But I also feel very thankful that he is otherwise a healthy, happy little baby.

More on Infant Contacts for Aphakic Children

The contact Tommy uses is a Bausch and Lomb Silsoft lens.  We didn't have a choice of lenses, this is just what our ophthalmologist prescribed.  These are extended wear (our doctor recommends changing weekly, although the package insert says that some people change them monthly).  Upon further research, I'm happy he chose these!

Most ophthalmology text books recommend the following guidelines for infant contacts:
1.  Lenses should have maximum oxygen permeability
2.  Lenses should have variety of power options available
3.  Infant lenses need a steeper base curve
4.  Infant lenses need small diameters
5.  Lenses need to be easy to handle and fairly sturdy
6.  Lenses need to be able to tolerate medication administration
7.  Lenses should be reproducible
Source:  Scalfani L.  Aphakia. In: Horn MM and Bruce AS, eds. Manual of Contact Lens Prescribing and Fitting. 3rd Ed. St. Louis, MO: Elsevier Inc, 2006; 577-8.

Silsoft lenses meet all criteria- AND they are extended wear, which makes it easier for our busy family.  In addition, Bausch and Lomb has great customer service.  Tommy's contact was ~2.5 months old and it began to cause eye irritation (red and itchy while contact was in).  I called the manufacturer to inquire about potential problems, and they were very helpful.  They sent me a new lens (at no charge!) and sent a postage-paid mailing label to send his old one back so they could examine it.  The new lens came within 5 days as promised.

I found an interesting link while researching them... some of you may find this helpful: http://www.revoptom.com/content/d/news_review/c/18417/dnnprintmode/true/?skinsrc=%5Bl%5Dskins/ro2009/pageprint&containersrc=%5Bl%5Dcontainers/ro2009/simple

I've read a little bit about other lenses, but have no experience, so here is just a listing:  Flexlens (daily wear), Kontur Kontacts (daily wear), Alden Optical Lenses... and I am sure this is not a complete list!

He Can See!

Our last visit to the ophthalmologist was fairly boring (and quite short!).  At 4 months old (3 months post-op) it consists only of an extensive eye exam.  The last visit didn't even include dilating!  I'm not complaining... just surprised.  I keep expecting things like EUA (exam under anesthesia) or lengthy visits or dilating or glasses prescriptions... and was happily surprised with a dismissive "We'll see him back in 4 months!"

We always have a few questions.  One question we've always wondered about and never dared ask was "will he be able to see out of that eye?"  And the doc seemed surprised at the question and replied "Oh, he can see!  We won't know what his vision will be, but we hope it to be 20/70 or 20/50."  What wonderful news!!  If Tommy didn't have one "good eye" and had 20/70 vision, he could drive during the day.  If he had 20/50 he could drive unrestricted.  We don't have to worry about that, assuming his "good eye" has normal vision.  Our doc called his aphakic eye his "spare tire eye".  If the "good eye" goes bad (macular degeneration or something) he has this eye to back him up.  It was wonderful news!  I'll take a boring visit any day!

I did it!

Tommy has become an expert at losing contacts.  So far, we have found them: in his car seat, on the wood floor, on the carpet, in his swing, and at daycare.  Each time I stress out and panic.  But, I have now successfully inserted his contact twice- with no crying (for either of us!)  I've also managed to take it out twice.  Since I am slightly (OK very) squeamish about eyes- I am quite proud of myself!  I never thought I'd be able to do it... if I can do it, anyone can!  If only I could figure out how to make him keep the contact in (and the patch on)...

Patch Rash

Tommy has reached the point in his therapy where he has to patch four hours per day.  He has also reached that point in his development where he can successfully pull off his patch.  He hates being patched.  At baseline, his skin is sensitive and appears to itch all the time.  The patch just adds to that.  I'm fairly certain that he can't see very well out of the "bad eye" (but I'm trying to remain optimistic that he can see something!) and the patch irritates his skin.  I don't blame him for being crabby- but it is no fun for anyone!  I haven't found that magic thing to keep him occupied while patched.  I've heard that TV, video games, movies, and bribes may work when he is older.  At 4 months old, it is just simple persistence.  I'm thankful that we have a daycare provider who genuinely loves him and wants him to see as much as we do.  She helps out a TON by keeping him patched during the weekdays, I'm certain that most daycare centers wouldn't be so vigilant.

Nonetheless, Tommy went through 3 patches today.  I even tried a super-sticky, ugly band-aid type patch.  He pulled that off as well, and was left with "patch rash" that makes him look like he has a big red circle around his eye.  I've been putting hydrocortisone on it, but the poor baby is stuck looking like this for a few days!  I need to keep reminding myself that patching is good for him and it makes his eye stronger.

Infant Aphakic Contacts vs "normal contacts"

If you look closely, you can see a bulge in his eye- that is the center of the contact!

Tommy's Contact- look at that bubble!



Daddy's contact- look how thin!



I am constantly amazed at how thick Tommy's contact in.  I can actually see a bulge in his eye- which makes it easy to spot, but must be slightly uncomfortable.  That bubble in the middle is not solution- it is his thick contact!   To put it in perspective here is Tommy's contact, a prescription of +23 dipters to his dad's prescription of -3.25 diopters.  Yes, that is a difference of 19.75 diopters!  (His dad does not have aphakia)

Found: 1 Very Expensive Contact

Wow- the contact has been found!  Our wonderful daycare provider found it today- hooray!  She found it sitting on the couch- plain as day.  We lost it Friday and she found it Monday morning after I told her about the loss.  It was a little curled up, but not the shriveled mess I expected.  She put it in the contact case with saline solution and we plan to disinfect it tonight.  Let's hope it is unscathed!

I already ordered a new one from the optometrist- if this one works, let's see if there is a way to stop the order!

Missing: 1 very expensive contact

We lost our first contact.  I don't know exactly when it happened, Tommy woke up on Saturday morning with no contact.  I don't remember exactly when I last saw it in his eye- it has become habit to look so it barely registers in my mind anymore.  I searched his car seat, his bed, each blanket he played on in the last 24 hours- no luck.  I scoured his clothes, my clothes, and the chair where I feed him in his room- no luck.  We had been out to dinner and shopping the night before- my guess is that we lost it somewhere while out. I'm so mad!  Mad at myself for not checking before we leave anywhere, mad that each contact costs $250, mad that I have no idea if our insurance will cover it or not.  I'm also mad that it happened on a Saturday- the optometrist isn't open until Monday morning, then they have to order it.  He will be without a contact for at least 5 days- 5 days where he won't be gaining strength in his bad eye.
I'm doing my best no to rant against insurance companies here.  I've done my best to figure out what our insurance will cover for contacts.  We were considering getting supplemental insurance, but wanted to wait to see if our primary insurance would cover contacts.  I called the insurance company on three different occasions- and no one could give me an answer.  A claim has to be filed before they can tell me anything.  (How backwards is that?)  So far, they appear to have paid for his initial contact and his first change in prescription.  I guess this will be the real test to decide what they will cover.

Shocking Realization

It has hit me in the past few days that Tommy is actually normal!  Now, normal is relative in our house, but nonetheless, Tommy is no longer "My Baby with a Cataract" but just Tommy, my baby.  I say this with such surprise because when we first found out about his condition, it consumed my every thought and ounce of energy.  I mourned the fact that he wasn't a normal, healthy baby.  I worried about what might happen,   I worried what people would think, I worried that he might not be able to see, I worried that he wouldn't lead a full and productive life, and yes, I worried about how his condition would impact the rest of our family.  I worried constantly about anything and everything.  I obsessed over his condition with all of my might. 
Yes, he wears contacts, he gets patched multiple times per day, and I have no idea what the future holds for him.  But really?  He is a normal, healthy 3 month old boy.  He cries, he smiles, he laughs, he plays, he screams, he sleeps.  We enjoy him fully- but not like he is a fragile sick boy. 
 This must have happened gradually, but it hit me all of a sudden.  When it hit me was yesterday at church someone asked me "what happened to his poor eye?" and it took me a minute to remember.  I was not thinking about his contact or patch or cataract!  It is a great feeling and I am ever so thankful for it!  I know he has a rough road ahead, but overall, we are pretty lucky for his addition to our family. 

Fun Eye Patches

Once I knew we were going to be patching, I set out to find patches that weren't the ugly skin-colored bandage color.  None of the stores in my area carried eye patches that weren't the black pirate type.  While searching online to order any patch, I came across quite a few cute options!

I ordered Nexcare patches online... and while they stuck really well, they left a horrible red mark on his eye and he fussed when it was time to take them off (it hurt!)  I tried using baby oil and lotion to help remove them, but that didn't help.  I tried to do the Maalox trick where you dot parts of the patch with Maalox in hopes that it won't stick to certain parts of the skin.  That was just messy.

Tommy in an Eye-Doodle patch

The first fun patches I came across were eye-doodle patches at http://eye-doodle.com/.  These are patch stickers that go over any eye patch.  They were created by a mom of a child with cataracts.  Her story is posted on the website and I just had to support her!  These are absolutely adorable patch stickers.  They came quickly and had great customer service.  These will be great when Tommy is older and can pick his own.  They are not too expensive, when added to a standard patch (I had Nexcare brand) the total cost is comparable to pre-decorated patches.

Tommy in an Ortopad patch

The next ones that I tried are from Ortopad.  http://www.ortopadusa.com/  These patches are hypoallergenic and were reported to be better for sensitive skin (which Tommy appears to have).  They  have many options- cute styles for girls and boys that are pre-decorated.  They also have a plain beige option which includes stickers that you can add.  I bought the Ortopad Elite Boys version and am very happy with them.  I had some initial user-error (you need to apply the patch then hold the patch for a few seconds to make it stick) but once I got the hang of it, I love them!  His skin never breaks down as it did with the Nexcare brand patch and they are cute.  I don't love all the designs- but I can use the Eye-Doodles over those!

Other brands that I have found, but not tried are:
http://www.myipatches.com/home.php  These patches are cute (I requested a sample) and this company lets you pick the styles of patches that you want.  They sent me a free sample, but sent a note with tips on how to make them less irritating to the skin.  Since Tommy is having enough trouble with cradle cap and baby rash, I'm waiting to try them.  They supposedly stick really well, and I have a feeling that I will need those as my little boy gets bigger!

http://funeyepatchkitsforkids.com/ These patches allow your child to decorate them with stick-ons (like jewels and foam stickers).  They also have a nice selection of cool colored patches.  Since Tommy doesn't decorate yet... I haven't tried them.  I may order some for his sisters to decorate for him, but haven't done it yet.

I have found quite a difference in how people react to a fun patch as opposed to a plain patch.  People will ask what happened to him and often give positive comments on the patch.  With a plain "flesh-colored" patch, they tend to look away.  An interesting aspect of human nature!

Since we will likely be patching for quite some time, I am so thankful that some companies have cute options available.  My favorite company is still the eye-patch stickers as I love the fact that a mom of a child with cataracts created them initially to make her daughter's experience better.

Lost and Found

Tommy has been wearing contacts for about 5 weeks now... and he finally lost one.  Of course, we were not at home, and he had not been home since we put it in this morning.  We noticed that it was missing at gymnastics... and my mind was racing.  For some reason, this made me super-stressed, which is silly, since it was only a matter of time before one was lost.  We poked all around his eye, poor little guy, and finally we admitted defeat.  I looked in his car seat (covered in a fuzzy sheep-skin blanket) and there it was!!!  Covered in lint, but happily sitting right at the bottom.
My obsessive-compulsive preparation came in handy here.  I had dutifully prepared a kit with contact lens solution, contact case, and extra patches.  Today, we needed it!  We rescued the contact and stored it safely in the contact solution.  Phew, it is like I just saved $260!

Patching Works!

We went for another follow-up visit to the ophthalmologist (1 month post-op)... and finally had some good news!  Tommy's original contact prescription was +32 diopters, at the last visit it changed to +23 D.  That is a significant change!  To put it in a little perspective, a typical farsighted contact prescription for an adult would be ~+3.1D.
While Tommy's prescription is still a HUGE correction, it represents positive results!  The doctor and the nurse were impressed with his progress.  He patches 2 hours per day,while not easy, it has been worth it!  They also mentioned that his eye was getting bigger- more good news!  Since he has PHPV it is (was?) possible that the eye wouldn't grow.  So, the eye is growing and seems to be improving.  We won't be able to tell his real vision prognosis until later, but for now, I choose to be optimistic!

Eye Patching

When Tommy has his contact in we have to patch his "good eye" in order to make his "cataract eye" work hard.  Babies LEARN to see starting at birth- and since Tommy's eye was covered in a cataract, that eye didn't start learning until he got his contact.  The contact acts as the lens to focus images.  He needs to use it in order for it to grow stronger.  We are hoping that he will have at least some vision in that eye when he gets older.

We had ordered some patch stickers from a really cool website http://eye-doodle.com/.  This is a company started by a mom of a child with cataracts.  When I came across this site, I just HAD to order them and support anyone who is trying to make it easier for kids who have to patch.  As an added bonus, the owner has GREAT customer service.  The patch stickers came quickly and were adorable!!!

We have to patch for 1-2 hours each day (we were told to do it 1 hour for each "month" he is old).  He doesn't love the patch- but he does OK. It ends up being on for about 6-8 hours each day to get in 2 hours of awake time!  The worst part is that it irritates his skin and leaves red marks.  He also is on atropine drops right now to train his pupil to dilate.  If I put the drops in and the patch on at the same time, he gets really frustrated since I imagine that he cannot see!  If I do the drops early then patch a little bit later, it goes much more smoothly.

Tommy and his patch (complete with eye-doodle sticker!)

Another not-so-fun part is explaining what "happened to his eye" to so many people.  I don't mind them knowing, and I don't mind explaining.  The only problem is that it is hard to explain an infant cataract in the limited amount of attention span that most people have.  And, do people really care?  I tell them anyway and just get amused when their eyes start to glaze over.  Worse is trying to explain it to kids that we see at our daughter's activities.  Interestingly, I have found that people are much more likely to ask me what happened if he has a cute patch on.  If I don't put a sticker on the patch, they often look away and don't engage me in conversation.

What is a Cataract?

To take a step back for a moment (I realize that I haven't addressed this yet):
A cataract is a cloudiness of the lens of the eye.  We often think about old people having cataracts and having them removed rather easily (The whole procedure can be done in 20 minutes in adults).  This is a link to a great short (< 2 min) video on pediatric cataracts.http://youtu.be/gzsSjUr7iNc.  He describes it much better than I ever could!

First Day of Contacts!

The contacts finally came and it was time to put them in.  Tommy's dad had put the contact in fairly easily in the office when they were showing us how, but it had been over a week since that tutorial.

We had everything ready, he took the contact out and wet it, just like he was shown in the office.  He folded it like a taco just as he was told.  He pushed his upper lid up and tried to put it in... and no go.  Tommy screwed his eyes up tight and started fussing.  Tommy had gotten very tolerant to the eye drops and eye ointment he's had to use over the past two weeks, but when he scrunches up his eyes, it is nearly impossible to open them.  This was one of those times.  The stress was palpable- I felt terrible for both of them.  I could only imagine how frustrating it was for his dad- and poor Tommy probably felt tortured.  About 5-6 tries (and much stress) later, he tried and it was in- or at least it wasn't on his finger anymore.  But, we couldn't see it in Tommy's eyes.  (It was hard to see anything since Tommy was closing his eyes up tight).  We let Tommy have a short nap and looked around on the floor (just in case).  When Tommy opened his eyes again- we STILL couldn't see it.  Now were were starting to sweat.  This was our first try- and we couldn't see it.  His dad THOUGHT he saw it up high, be we couldn't be sure.   (Remeber, these babies are $500 each!)  We decided to call the ophthalmologist office for advice.  We were thinking that we'd probably have to go to the office the next day and have them remove it or look at it or something.  When I finally got to talk to the nurse, I hear "There, I see it, it is on his eye now!".  What a relief!  Even though I had to stammer through something to discuss with the nurse (I just asked what we should do in the future if it gets stuck high in the eye), I felt MUCH better that it was in.

There is a great video posted on YouTube from a mom who has two sons in contacts:  http://www.youtube.com/user/suebhoney2672
She is incredible- we've watched this a few times.  Maybe I can convince my husband to make his own video since he is so good at it!  I thought about taking pictures this time, but I figured he would nix that idea.

The day after surgery

The appointment the day after surgery was pretty non-eventful.  There was a lot of waiting (our appointment was at 8:30am and we didn't leave until 12:30pm!) and very little talking.  We saw the ophthalmologist, the ophthalmology resident, an optician, and a nurse.   The ophthalmologist looked at his eyes (after they dilated them, of course!) and said that the surgery aspect looked good and there was still too much swelling to tell how much the PHPV would affect Tommy's eye.  Ugh, more waiting.

The optician and the nurse came and fitted Tommy for his contact.  The ophthalmologist came back and decided on the strength.  Then came the hard part:  trying the contacts on!
We had a very nice nurse- he was funny, nice, and professional all in one.   He brought a fitting contact and popped it into Tommy's eye like it was nothing.  Tommy barely blinked.  Then he taught us.  When I say "us", I do mean that he taught Tommy's dad.  Since Tommy's dad wears contacts, he was elected to be the contact guy.  Interestingly enough, the nurse told us that in his experience, it is often the father's who put in and take out the contacts.  I watched, and I will probably have to learn... but will do that in the safety of my own home!  He then showed us how to "pop the contact out".  When he did it, it looked easy- again, Tommy was unfazed.  Now it was dad's turn to try to put the contact in while the nurse was there to help.  He was nervous, but when he tried to put the contact in, it was as if he had been doing this forever!  I was quite impressed.  Getting it out was a different story.  The nurse told us to "pull the eyelids open, push down, and the contact will pop out!"  Sounds easy, right?  It isn't.  Tommy cried and dad felt bad, so we let the nurse take it out.  After all, the poor guy had been through enough eye trauma with the surgery the day before!  While I am describing what it was like, I realize that I was too chicken to do it.  I am completely impressed at his willingness and ability to do this, and I do dread the day that I have to do it alone.

One of the scarier parts?  The nurse told us that the contacts cost $500 each.  FIVE HUNDRED DOLLARS!  And that some kids lost one contact a week.  YIKES!  I had half-heartedly tried to find out what our insurance covered before this visit- but now I am on a mission!

Post-Op: More bad news

After about an hour and a half we were ushered into a consult room.  Admittedly this made me a little nervous.   They didn't make anyone else go into a room... what could it be?  Luckily, we didn't have very long to dwell on the "what ifs" because our ophthalmologist came in fairly quickly.  He sat us down and told us that the cataract surgery went well and the cataract was removed.  Unfortunately, he also told us that Tommy has PHPV (Persistent Hyperplastic Primary Vitreous).  He explained that this was a lack of development in the back of the eye and he didn't know how much of the back of the eye was involved yet.  He said that there was a wide range of severity with this condition, but couldn't tell Tommy's prognosis yet.  This was disheartening, but our baby was out of surgery!  We had to wait a little bit longer before we were brought back to the recover area.

In the recovery area our little Tommy was wrapped up in a big warm blanket and was being cuddled by one of the nurses.  He looked so little!  He had the protective patch over his eye, which would stay on until the next morning.  This nurse mentioned that he might be a little sleepy as they had just given him morphine since he was screaming (my guess is that the poor little guy was hungry!)  We finally got to hold him- and waited for him to wake up a bit so I could feed him.  We noticed that his eye patch was coming off a little bit.  We called his nurse over (which was not the same one who was cuddling him) who basically blew us off.  Tommy ate- and I handed him over to his dad.  At this point, the patch was over his eye, but was gaping at one side so you could SEE his eye- while this was probably OK, we didn't want to have to deal with it falling off at night and us freaking out not knowing what to do.  So, we asked the nurse again- and she very reluctantly put more tape on.  But, she put it in such a strange spot, it really wasn't worth it.  We decided just to secure it at home.  We wanted to get out of there and go home!

Tommy slept all day long once we got home.  The family we had in town helped us cuddle him all day.  We kept him comfortable and he only needed a dose or two of acetaminophen.  Unfortunately, this meant he was awake ALL night long!  It is amazing how resilient children are, he really had very little residual issues related to surgery.  The next day (aside from a visit to the ophthalmologist), you never would have known he had been in surgery!

Perspective

We were in a general pediatric surgery area for Tommy's surgery.  Within minutes of checking in,  we were humbled by what surrounded us.  We have been stressing and worrying about Tommy and his surgery and diagnosis for weeks.  We'd gone through the "poor baby" thing with a million people.  There were a lot of people thinking about him and praying for his surgery to go well.  Looking around, we realized how incredibly lucky we were to be worrying about this- which is a relatively small issue compared to what some people go through.  While we don't know the stories of anyone there- we know at least two of them had cardiac issues.  There was a family- there must have been a group of 10 people with shirts saying "Save Krystyn's Heart" or something like that.  While I don't know that they were currently there for major cardiac surgery- I do know that they've had a much tougher road than Tommy.  I also know that they weren't sent to the family waiting area, which likely meant that they were admitted to the hospital post-op. 

In any case, this experience has given us a whole new appreciation for what people can endure.  We realized that we have family members and close friends who had dealt (or are dealing with) medical issues with their children.  Some with much more significant surgeries than Tommy.  We can only hope that we were supportive enough, because as we learned, you really have no idea what it is like until you go through something yourself.

The waiting game

We had been told that our ophthalmologist was slow during surgery- that made us happy, we certainly didn't want him rushing.  So, we knew we had a long wait.    We were notified when Tommy was asleep and the surgery began and were told that they would update us every hour (if it lasted longer than an hour).  We were able to get a bite to eat and let our friends know that he was in surgery.  We watched as other surgeons came and talked to parents right in the waiting room.  Thankfully, there did not seem to be major drama for anyone around us.   Here is a link to what the surgery looks like (not Tommy's) - I haven't been able to watch it all the way through yet.  http://www.youtube.com/watch?v=phradRutgOU

After about an hour and a half we were ushered into a consult room.  Admitedly this made me a little nervous.   They didn't make anyone else go into a room... what could it be?  Luckily, we didn't have very long to dwell on the "what ifs" because our ophthalmologist came in fairly quickly.  He sat us down and told us that the cataract surgery went well and the cataract was removed.  Unfortunately, he also told us that Tommy has PHPV (Persistent Hyperplastic Primary Vitreous).  He explained that this was a lack of development in the back of the eye and he didn't know how much of the back of the eye was involved yet.  He said that there was a wide range of severity with this condition, but couldn't tell Tommy's prognosis yet.  This was disheartening, but our baby was out of surgery!

The day of surgery

The day was finally here- surgery day.  A day we both anticipated and dreaded. 

Tommy's surgery was scheduled on a Monday- which appears to be "surgery day" for our ophthalmologist.  Tommy couldn't eat for 4 hours prior to surgery- which I thought was going to be a DISASTER for this little baby would eat non-stop if he could.  Check-in was at 6:30am, so he ate last at 2:30am.  I got him ready and at about 4:30am he started crying- poor baby was hungry!  We left the house at 5am (it was only a 30 minute drive- well, less at that time of day- but we didn't want to be late).  Tommy fell asleep (thankfully) in the car and was an ANGEL the whole time.

We checked in at the appropriate place and waited for our names to be called..

He slept the entire time we waited.  We finally got called back to pre-op for more waiting.  A nurse came by to take his vitals (the chunky monkey was already 13 pounds!) and check him in.  They gave him a hospital bracelet- and still he slept on!  The anesthesia resident came by and asked his questions and gave his spiel.  I asked him what they would be using and made him tell me drug names (we never open with "hi, we are pharmacists!" because we don't want to be those annoying people but we do insist on knowing what our kids will be getting.)   I have to admit that he was a little scruffy and he made me nervous.  I know that appearances mean very little, but he had the 3-day scruff going on and it made him look a little less professional, I like my doctors to be clean-shaven!  (You should know that my husband thinks I am crazy for this thought!)  The ophthalmologist resident came by and she marked his eye with a marker to make sure they operated on the correct eye.  It was the strangest thing!  There was a magic marker all wrapped up in sterile wrapping- I understand why, it was just weird to see.  The attending anesthesiologist and another ophthalmologist resident came by- it seemed like a million people came and asked the same (or similar) questions... but we were at a teaching hospital, so it is common.  I know people get annoyed by this, but I found it reassuring that so many people were thinking about my baby!   At last it was time to take him- the attending anesthesiologist came and took him in her arms (which I am very grateful for, it was much less intimidating than wheeling him off in a big bed).  I still cried, but it could've been worse.  We were then lead back to the family waiting room.  At the reception area we received a pager that would go off if they needed to talk with us.

FYI:  In medical training, there are residents and fellows.  Residents are licensed professionals (in this case physicians) who are in post-graduate training.  This can be in general medicine or specialty areas (such as anesthesia or ophthalmology).  Fellows are also in post-graduate training, but are also post-residency.  They are specializing in an area and are undergoing more extensive clinical training as well as adding a research component to their training. 

Just a Cataract

Finally, the day of the eye doctor visit was here.  It was on a Tuesday at 2pm.  We had scrambled to make arrangements for our other children because we had been told that the appointment would last hours (bring a snack kind of visit!).  Amazingly, we had been able to put things out of our minds off and on (the sick-house probably helped!).  But, the day of the appointment was a different story.  I couldn't help but replay all of the possible "what if" situations and it was killing me.

We get to the appointment, check in, and wait.  Tommy was thankfully asleep and thus was very patient.  We watch other kids come in, and I tried to picture in my mind what they were in for.  Some had big metal patches, which I assumed was from an eye injury, some had big thick glasses, some had other development issues, and some had no obvious eye issues.  We were finally called in by a sweet resident and went to a dimly lit examination room.  She introduced herself, examined Tommy, put drops in his eyes to dilate them... and sent us back to the waiting room to let them dilate.  She gave no indication of what could be wrong... and we weren't brave enough to ask any questions we didn't want the answers to.  This is fairly amazing as we both like to be in-control and in-the-know of what is going on, so for both of us to be silent, you know we were scared.  So we waited again, watching kids come and go.  We discovered Angry Birds on my husband's smartphone (love it!) We waited some more.  (Did I say we waited?)  Finally, we were called back in to another room.  These rooms all looked the same, big eye equipement chair, desk for the doctor, a kids movie playing on a big-screen TV, and these little dogs mounted on what seems like a motor high up on the wall.  I am slightly fascinated by these little stuffed dogs because I have NO idea what they could be used for.  I recognize most of the equipment (I can't tell you what much of it does, but I know it belongs in the eye doctor's office!), they still use that stupid little booklet to test depth perception.  But those dogs?  No idea.
We waited and waited and waited.  Tommy was incredibly good during the whole visit- he barely fussed (only when he was hungry) and tolerated all the poking and prodding just fine.  Finally the "attending" ophthalmologist came in, introduced himself, and examined Tommy.  He was silent during his examination.  I couldn't decide if I should be paranoid or relieved at his silence.  (Remember, I'm still fairly newly post-partum and on pain killers, and we are both fairly sleep-deprived and stressed out.)  He examines, writes a little note on Tommy's chart, puts on some funny piece of equipment on his head, making him look a little silly, then he examines and notes some more.  FINALLY he was done and says "Well, he has a cataract" and then discusses treatment with us.  He was so matter of fact and made it seem so simple and easy to say.  Like he had no idea that this had been ripping us apart for so many days!  Don't get me wrong, this man is great and brilliant and I have absolutely no complaints, it was just so... so anti-climactic after the build-up we had created for ourselves.

His treatment plan included surgery at 5-8 weeks old to remove the cataract by removing the lens.  He would then fit a baby contact that we would have to put in and take out every week.  (Contacts, in a baby?!)  Once we got the contact fitted, we would patch the good eye to train the bad eye to see.  He explained that babies need to learn to see, so catching this early was likely a better prognosis.  (Thank-you to our stellar pediatrician!)  He would also need glasses (bifocals) and would need surgery again at age 9 or 10 years once his eye was fully grown.  (I guess it is an old-wives tale that you are born with eyes fully grown!)  The ophthalmologist did tell us that his contact was big enough that he could not fully see the back of the eye, which meant that he couldn't tell us long-term prognosis for sure until he "got in there" to see.  I asked him, since I needed to be sure "But, you are sure that this isn't retinoblastoma?"  I could ALMOST see him chuckle- but he did confirm that Tommy did NOT have retinoblastoma.  (Note: My husband remembers this slightly differently.  He remembers him saying that he couldn't see completely into the back of the eye due to the size of the cataract, but didn't think that retinoblastoma was the cause of the leukocoria.  I'd believe him if I were you, as I can't remember signing the consent for surgery but there my signature was on the day of the operation!  I'm happy to rember the relief that I felt.)  After that, nothing mattered.  This treatment plan seems horrible to write out (and admittedly isn't super-easy) but it was such a relief!  It wasn't cancer!  We were HAPPY for a cataract.  Never in my wildest dreams would I have predicted that I'd be happy for a baby of mine to go through surgery for "just a cataract."  But we were.  Perhaps those 4 agonizing days of waiting and wondering were all for the purpose of making us realize how incredibly fortunate we really are.  This could have been so many bad things but it was "just a cataract" and we were thrilled!

Our ophthalmologist has an interesting name- on that felt very familiar to me- but how or why I couldn't put my finger on.  About half-way through the visit it dawned on me- I know his daughter!  In fact, I had precepted his daughter when she was a pharmacy student.  Then came the dilemma, do I tell him that I know her?  What if I am wrong?  So, at the end of the visit (while he was writing his finally check-out stuff, I casually asked if his daughter was a pharmacist.  I was right- she was!  I told him how I knew her, and he lit up like any proud papa discussing his little girl!  It was nice to see his "softer side" and it can't hurt to have a personal connection to the guy cutting into your son's eyes, right?

We left with surgery scheduled for his 5 week old birthday.  We were instructed to contact a special supplemental insurance company to help pay for these contacts.  Silly us thought that this was unnecessary, we had good insurance and didn't think we'd need that!  Heck, my husband wears contacts and they are only a few hundred dollars a year!  But that story is for another day... after all, we had some calls to make.  Tommy had "just a cataract!" and we had to spread the great news.

Red Reflex

Our resolve NOT to look things up lasted approximately 5 minutes... it lasted until I could turn on the smart phone and start googling.
What is this red eye reflex?  This was a term that neither one of us had ever come across before.  We knew that the pediatrician always checked the kids' eyes during well-child checks, but we always thought it was to check that the pupils were round and equally reactive.  We have since learned that there are MANY reasons why they check the eye:  they check the pupils, the cornea's appearance, they check visual acuity, ability to fixate on objects, alignment, and they check for a red reflex or presence of leukocoria to name just a few.
The red reflex

The red reflex test or "Bruchner's test" can detect many different ophthalmologic problems in children and should be performed as part of a normal newborn screening.  In normal eyes, the practitioner will shine a light into the eye and will see a red reflection with the ophthalmoscope.  This is also what causes "red eye" in pictures.  From some stories we read on the internet, this is one of the ways their child's problems were diagnosed, parents would notice that the eyes didn't match in pictures.  This isn't something we noticed before our pediatrician visit... but looking back (hoping to find 2 shining red eyes) we saw what she saw:


His left eye show no red reflex



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So, Tommy had no red reflex (or rather, he had leukocoria, which means white pupil) in his left eye.  The pediatrician casually mentioned the word "cataract".  She did not mention the other horrible things it could be such as retinoblastoma, chorioretinal coloboma, persistent hyperplastic primary vitreous, endophthalmitis, Coats disease, retinal detachment, or other seemingly scary things.  We scared ourselves silly googling information (even though we knew better), then scared ourselves more by trying to dig into the scientific literature.  The literature was perhaps scarier because we read that the incidence of retinoblastoma was not comfortably (or significantly) different than a cataract in the literature we could find.

We spent 5 days torturing ourselves with all of the terrible possibilities.  Did he have cancer?  Would he lose his eye?  Would he be able to see?  We cried, we prayed, and debated about how many other people to torture with this information.  In the end we told a few close friends and just a few family members.  It got to the point where I just had to look at him and I would cry... so telling people about this just seemed worse, it was like reliving the terror.  We were sleep-deprived, had a house full of sick kids, and I was post-partum... looking back, I still am not sure how we survived that weekend!  This was the only positive thing about having a house full of sick kids- they provided a much-needed distraction from our own imaginations.

And so it begins....

When Tommy was 4 days old, he had his first pediatrician visit.  We have been seeing this pediatrician for 8+ years and LOVE her.  We expected the normal new baby weigh in visit complete with lots of oohing and ahhing about how cute he is and amazement over how big he is.  We had also brought one of our older daughter's (who was home sick that day) and our doctor was concerned about her cold and was examining her!  Just as our pediatrician was walking out the door, she stopped and said "Wait, I have to check his eyes!"  She later told me that something just 'clicked in her brain' that she needed to do it again, as she thought she had already checked.  She had no reason to be concerned as the report from the hospital pediatricians was completely clear, perfectly healthy baby.  She looked in his eyes, then she casually asked "Did anyone say anyone at the hospital say anything about his eyes?".  Nope.  "Hmm, do you have a family history of congential cataracts?"  Again, No.  She then turned out the lights and examined again.  Now, we have known this doctor for a long time, we have a decent relationship and we could tell there was something wrong.  Without really panicking... she was a little rattled.  She told us that she could not see the red reflex in his eye.  The pediatrician left the room, promising to be right back.  His dad and I are both pharmacists who are relatively intelligent, I even work with kids, but this did not trigger any alarm in us, especially in our sleep-deprived state.  So, we waited.  She came back telling us that we needed to see an ophthalmologist very soon and she was working on getting us an appointment (not an easy feat at 4:30pm on a Friday afternoon.)  Ok, now we started to worry a little... but still no big alarms, after all, I had lazy eye as a kid and was doing just fine now.  When she came back with the appointment, we asked what would happen if it was a cataract, couldn't they just remove it and everything would be OK?  After all, older adults have cataract surgery all the time... right?  She was hesitant in her reply and evaded my question with a "Well, I don't really know, this isn't my specialty, that's why we have to get you to an ophthalmologist."  This is when I started to worry a LOT... this pediatrician was pretty smart, and I could tell she was trying NOT to go through all the worst-case scenarios with us.  So, we took her at her word and left.  Of course, in my sleep-deprived, hormonal state, I was weepy, but still was thinking it couldn't be THAT bad. 
When we got to the car, we agreed to not obsess about this and to not look things up on the internet.  You see, we can be our own worst-nightmares.  First, much of the information on ANY medical condition on the internet is crap and some of it is just plain dumb.  Second, we know just enough as pharmacists to understand some of the information, but not enough to make complete sense of everything (especially relating to the eye!)  How long do you think our resolve lasted?

Tommy arrives!

Tommy (or Thomas Jacob) is our 4th child (yes, fourth).  We have 3 beautiful little girls who are ages 8, 6, and 3.  We were SHOCKED when we found out we were having a boy... we thought we only made girls!  After that shock wore off the entire family (although admittedly, part of me wondered if they were wrong, despite 3 ultrasounds telling us otherwise) we looked forward to a little boy to balance out the girl-heavy house.  Dad was happy to not be the only human male in the house (we do have a male dog and cat.)

Tommy was born 4 agonizing days late (anyone who has had children understands why this was agonizing).  After a long labor (which ended in a surprise c-section), Tommy entered the world at a whopping 10 pounds 15 ounces and was 22 inches long.  All was well and we brought Tommy home on a Wednesday to our crazy house- we welcomed him home to our crazy house of 3 sick kids (it was February after all, I guess I should have expected that) complete with high fevers (105.1 F) and vomiting.  We felt very fortunate that newborns have an incredible immune system from mom and he did not join the sick bay.