Surgery Day Part 1 - Congenital Cataract

We had found out 5 days before her surgery was scheduled that M had a congenital cataract in her right eye and that we had 2 choices: operate to remove the cataract and work to restore vision, or do not do surgery and monitor the vision in her right eye.  We knew going to that appointment that it was most likely a cataract and we knew that we would want the surgery done in hopes of having some vision for M in that eye.  We were given the best case scenario for M's vision in that eye at this appointment and it was significantly lower than we thought.  She had a dense, large, and centred cataract that was not caught early in her life, making vision recovery not as promising had it been identified and treated earlier.

Pre-surgery time sucked.  I cried all day, almost everyday, and it was negatively affecting my 3 year old son.  After 2 days of crying all day, I promised I would quit crying in front of my son E; those days I just cried in the shower, when he was napping, and after he went to bed.

This is a pre-surgery picture of M sitting in our kitchen about 6 am getting ready to head to the hospital.  She had the surgery on November 23, 2012 just before she turned 9 months old.

M had the 10:30am surgery which meant we had to be at the hospital at 8:30am.  We checked in and eventually saw a nurse to gather details about her history, her likes and dislikes, and information like whether she was breast or bottle fed.  We provided the nurses with her suther and a little blankie that she always sleeps with, hoping that she would find comfort when the time came from these familiar objects in such an unfamiliar place.

We were able to be with M just until surgery.  The surgeon, nurse, and anesthesiologist came to talk to us in a little room.  They asked us a few more questions and told us that they would be taking her to put her under and start surgery.  I had to hand her over to the nurse and watch the nurse take her out of the room.  Neither parent was allowed to be with her when they put her under because she was less than 1 year old.  

She was operated on until around 12:15pm.  The surgeon came to get my husband and I in the waiting room.  He said everything went well, and only 1 of us was allowed to see her in the recovery room.  I went in to find her being held by the anesthesiologist.  They passed her to me as soon as I got there.

Arm Immobilizers Arrive!

The arm immobilizers arrived in the mail today!  Took 10 days from order to get to my door from the US.  

I ended up buying a pair from www.snugglewraps.com.  There are a few options out there.  I primarily chose these ones because they looked less 'medical'.  One of the comments on their website was about how people were less likely to ask you how your child broke both their arms when you wore these immobilizers compared to some other brands out there.  I agreed with this comment, just by looking at the options online, and figured I've been answering enough peoples' questions just by having M wear a patch, I didn't want to have to add explaining that her arms weren't actually broken.  Apparently these will be able to fit under a shirt, but can also be worn over some clothes as well.

They just arrived so we haven't tried them on M yet.  She has been remarkably good for the past 10 days since I actually broke down and put in the order for these things.  I think she must have overheard our conversations and realized she'd better start behaving or she'd be sporting these lovely doggie arm immobilizers!  

What I Know About Patching So Far...

1.  It sucks!!

2.  Patching means that you are putting a patch over a child's 'good eye' to force the 'bad eye' to work.  Patching is to encourage the eye/brain connection that has already been 'switched off' to 'switch back on again'.

3.  Patching started after M's cataract removal surgery when she was wearing her contact.  She was required to wear her patch for all waking hours of the day except the hour before bed.  She is still required to do this amount of patching each day.

4.  The first 2 days of patching M couldn't see a thing out of her eye that wasn't patched.  She sat on the floor and cried, or was held in my arms and cried.  She cried all day for 2 days because she couldn't see.  It was horrible.

5.  Eventually she learned that she could rip her patch off.  Once she learned she could rip it off, she made a habit out of it.

6.  Every time M rips her patch off she rips her skin off.

7.  Applying Calamine lotion to the skin that is going to come into contact with the patch adhesive works pretty well.

8.  Applying Cavilon to the skin where the patch adhesive comes into contact with her skin helps too.

9.  I think that the patching is working to develop the sight in her eye that had the cataract.  A few days into patching she ran into the couch while crawling.  Now she can maneouvre around our house avoiding most obstacles, and can even find smaller objects on the floor.  She can also find her way around new places.

Lost - One Custom Contact

Today we lost a custom contact somewhere in our house.  It fell out of M's eye.  Everyone in our house searched on their hands and knees around most of the house looking for a small clear contact - or a shriveled up piece of plastic.  We found lots of other things, but no contact.  $175 added to my floor grime...

But the good news is M came and told us by crying and wanting up when we think it fell out!  So she notices a difference between having it in when she's patched, and not having it in when she's patched!  And this is the first custom we've lost so far (trying to add to the positive side)...

Red Eye Reflex - Congenital Cataract

Another sign of cataracts is the absence of a red eye reflex.  It is exactly as it sounds.  When you take a picture of your child with a camera that allows red eye to show up, both eyes should have red eye.  If an eye lacks the red eye look in pictures, or if the red eye looks different between the eyes, then there could be an abnormality.

Red eye reflex should be screened for by a family physician at regular visits during a child's early months of life.  The earlier an identification of an abnormality in a child's eye the more promising the visual outcome will be.

The picture below shows M the morning of her cataract removal surgery.  M's left eye shows the red pupil, whereas her right eye shows no red in it.  Her left eye exhibits this red eye response, which is what is supposed to happen when there is no cataract there.  Her right eye does not show any red because it has the cataract in it.

M's left eye is clearly showing a red eye reflex, by appearing red in this photo.  There is no red in her right eye because it has the cataract.

All infants are supposed to be screened for a red eye reflex within the first 2 months of life, and thereafter.  It's supposed to be performed by someone who is trained to do that (could be a family physician, pediatrician) and is supposed to be in a darkened room.  Just ask your physician if they are looking for it - at least then they'll know that they should if they haven't or be able to tell you what they are looking for if they are doing it.

The American Academy of Pediatrics has an article online: Red Reflex Examination in Infants.

http://pediatrics.aappublications.org/content/109/5/980.full

It gives a brief outline on what should be done by physicians when examining infants for the red eye reflex.

The First Few Contacts

The first contact we got for M was a disposable one.  Her optometrist gave us 2 for free at our first appointment.  I was prepared to start paying for them right away, but was told to take the 'freebies' while we had the opportunity.

The first 2 disposables we got were easy to get in her eye, however, fell out of her eye regularly.  The first time it fell out I had her at the pool and it fell onto the pool deck.  Thinking that this was a rarity I just threw it in the garbage!  Little did I know I would kill to have that contact back no matter where it fell - throwing it in the garbage wasn't such a smart idea...

The second disposable we got at that first appointment also kept falling out of her eye.  It was almost as if they flew out.  She wasn't rubbing her eyes, and her eyes didn't seem too dry.  I would leave her somewhere in the house for a few minutes, and would realize she had lost the thing.  I spent so much time looking in and examining her eye, trying to figure out if the contact was still in there.  Also spent a lot of time tearing through the house to try and find any shriveled up contact remains.

As it became apparent that the disposables weren't going to stay in her eye, the optometrist decided to order a custom lens.  These lens were not to be thrown out!  They cost $175 each.  The first one we got was too small for her eye.  It was harder to get in her eye because the actual contact diameter was smaller, and the contact was stiffer when bending it to get in her eye.  It went in fine but kept floating to the outside corner of her eye and getting stuck there.  I had to manually move it back over her pupil and iris repeatedly and constantly use moisturizing drops.  This contact wasn't working.  We were told to stop using it and go back to the disposables until the next custom contact arrived.

Custom contact bottles

The second custom that arrived didn't cost us anything.  We just had to return the first custom we had, and exchange it for the new custom.  There seems to be a return and exchange program.  So as long as we don't lose the 1 custom contact we paid for, we won't have to pay for the next as we are fitting them.  The  second one worked pretty well.  It generally stayed where it should, and never fell out!  It was a huge feeling of relief not to have to be constantly worried about it!  However, the outer part of the contact appeared to have a wrinkle in it when M would wear it, and the centration (magnified circle in the middle) was sitting lower on her pupil.  The optometrist looked at it in her eye, and ordered another custom lens that was slightly different than this one.

This 3rd custom contact that we received still has the same wrinkle around the outer edge of the contact, and the centration is still lower on her pupil than it should be.  We've been wearing this one the majority of the time now.  It has fallen out twice so far, but generally you can see when it is going to happen and prepare!  The wrinkle seems smaller, and the centration seems to be a bit higher on her pupil, but still has it's problems.

We are still working to find something that doesn't wrinkle, sits higher over her pupil, and doesn't fall out.  Meeting those 3 criteria seems to be more difficult than one would think.

Cool Patches!

I searched for cool patches online and found a few different companies.  I never did find one that ships from Canada, so ordered from a company in the US.

These eye patches I ordered from myipatches.com in the US.  They had lots of different designs.  I didn't try them, I just hoped for the best and ordered $80 worth!  Before these arrived I was just using the Nexcare brown patches which were working fine, but they were just too boring and medical looking to put on M everyday.

Here's M sporting the winter themed snowflake patch!

People were asking me a lot of questions when M showed up one day with a patch on her eye.  The first time people saw her were with the brown patches.  I think, looking back, people thought she had had an accident or something 'had happened' and people were always asking what was wrong.  Now that M wears the more decorative patches people never ask me what happened to her or what is wrong with her.  A friend, who had heard people asking about M's eye when we were out in public, thought that with these new decorative patches people wouldn't think that something 'happened' but rather see it as more of a permanent thing.  People have definitely been asking me less about what's wrong with her.  Instead people are talking to her more, and commenting on her patch.  I must admit, this is way better for me.  I was amazed, appalled, and just surprised at how people would just come up to me, even when I had my 3.5 year old son with me, and want to know what happened to M.  I was/am sick of telling people what's 'wrong' with my baby girl.

Monkeys and bananas!  It's one of her older brother's favourite.

Another thing that really helped M's older brother adjust to this new patching system was being able to choose a kind of patch in the morning that she would like.  He had started telling me that he doesn't want to look at her patch on her eye anymore, so I thought he should become a part of the process more.  He chooses her patch in the morning when he wants to, and sometimes tells her about the patch and how pretty it looks!

These are the variety of designs I got for M's patches.  

Happy Place

I got a copy of this picture printed and put it on my fridge.  I look at it when M is having a hard day with her patches, when I wish she was born without a congenital cataract, when all I want to do is cry with her all day, and when all I want to do is give up.

I look at this picture to try to remember that even though all of this sucks really badly right now, every minute, hour, day we are successful in patching her, means that her vision will be that much better in the future.  I look at this picture so I can remember that my happy little loving life baby girl will be ok.  She'll be ok today, tomorrow, and in the many years to come.  She'll be better than ok!

The Dreaded Contact

Getting the stupid thing in!

We were told that after M had her cataract removal surgery she was going to have to wear a contact in that eye.  I think I might have laughed out loud (amongst the tears) when the doctor told us that!  But we knew we were going to have to do it, and figure out how to get it in everyday.

We met with an optometrist, one week after M's surgery, who explained some things about the type of contact we were getting for her.  The first one we got was a disposable one.  He wanted us to start trying to get the contact in her eye as soon as possible, so that we could all get used to it.  Get used to getting the contact in?!  He showed us how we would have to hold it, and the motion you would do to get it in the eye.  Told us we would probably have to hold her down to get it in, and open her eye up to be able to put the contact in.

So we tried for 3 or 4 days again and again with no success.  My husband was kneeling on her immobilizing her body and arms, and kind of puts her head between his knees.  From that position it was his job to open up the eye lids while I would attempt to get the thing in.  We kind of decided that I would be the one to handle the contact because I wear contacts myself, and have more experience handling them and getting them in eyes.  Not that this helps when getting in a 9.5 month old's eye!

It was terrible trying to get the contact in.  M screamed as loud as she could.  We tried for days with no success at getting the thing in which was also terrible.  It seemed like we were just making her cry all the time.  The first time I managed to get the contact in her eye was when I went back to the doctor that did her surgery.  He 'restrained' her in his lap and opened her eye for me and it worked!  It was one of the happiest moments to know that I could actually do it!  After that I went home with more confidence.  

The next day my husband and I tried again to get it in in the morning.  It took us 7 minutes to get it in her eye.  She screamed for 7 minutes while we were trying to do it.  My husband and I were fighting, and I was crying.  It was a mess.  But the contact got on the eye.

The 3rd day we got it in in the morning again and it only took 5 minutes.  She screamed for 5 minutes while we did it.  My husband and I fought less, and I cried later instead of while I was trying to get it in her eye.

The 4th days we got it in again in the morning and it took 2.5 minutes.  She still cried for 2.5 minutes.

The 5th day we got it in again in the morning and it took about 15 seconds.  She cried for 15 seconds.

These days we can get the contact in every morning just after she wakes up in about 2-15 seconds.  She still almost always cries while we are doing it.  I almost never cry when trying to get it in, or about having to do it anymore.  My husband still kneels on her and opens her eye while I'm in charge of handling the contact and getting it in her eye.  

It was terrible at first, and hard on everyone in our family.  But now, it's still terrible, but just doesn't have the same emotions attached to it, or frustrations of not being able to get it in.  We now know we can do it, we know we have to, and M has begun to realize it's a part of her life.  

Arm Immobilizers

I'm ordering the infant arm immobilizers.  Measured M's size from armpit to wrist.  I'm hoping they will come quickly.  The mitt system is failing - she's figured out how to get the things off by shaking her arms for extended periods of time.

Also hoping that when they arrive I can put them on her a few times and then she will learn that she likes her patch on her eye more than she likes the arm immobilizers on her arms.

I'm not sure what happened to all those 'good' patching days we had in the beginning.  She has figured out that she has the ability to take the patch off, and I think she has just started to get some bottom teeth.  Either way, I'm hoping that this will offer a solution to this current problem we are in...

Talk about roller coaster days...  One day can be amazing, just a couple patches on her, she can get around the house and play like normal.  Then the next day she needs to be wearing mitts all day so she won't rip the patches off and make her skin bleed.  I figured I wasn't going to need the restraints 2 days ago, and now I'm not sure we can even make it through the next couple of days without a better system.

Figure I'll get the arm immobilizers and then at least I will have them if they are needed...

I'm sure there will be a future blog entry on these things if I end up using them!

A 2 Patch Day!

Yesterday M only used 2 patches!

And she only wore mitts when she was sleeping!

It was also a full day of patch wearing!

Patching Challenges Continue

We can now get M's contact in her right eye every morning so she is supposed to be patched every waking hour but the hour before bed.  I've been making her sport mitts on and off throughout the day to stop her from ripping her patches off.  After a day or two of heavy mitt wearing I can now just put the mitts on for about 30 minutes a day, those times of the day when she's most likely to rip them off (just after the patch has gone on, just after waking up from a nap...).  I've also kept her in her mitts for nap times because it's a pretty popular activity for her to sit, after her nap, and pick at her patch until she gets it off.

Today we went through 3 patches, and I gave up 2 hours early.  Thought I would give her skin a rest by not putting a forth patch on.  Every patch she rips off makes her skin more irritated.  

I think I have to be ok with it if patches are getting ripped off.  I think I also have to learn or be ok with it if I miss a few hours a day.  I just find it so frustrating when she's rips them off - doesn't she know it's for her own good?!

A Sign We Missed

M was born with a cataract in her right eye and we didn't notice it was there until she was 9 months old.  Looking back we can now see it in almost all of her pictures.  Her right pupil is cloudy, and definitely not as black as her left pupil.  Her right eye hadn't 'gone lazy' yet and there seemed to be no 'jump-out-at-you' signs.

The above picture was taken when she was just about 3 weeks old.  You can see the cloudly white part in the right eye.  The left eye is all black and the right eye is not.

This second picture was taken just before she turned 2 months old.  You can see the white circle that is in her right eye pupil.  Don't you love her hair?!  It was wild since birth - very dark and just stood straight up no matter what you tried!

At the time  we weren't looking at her eyes specifically and just didn't notice that they were different.  Now looking through all of our pictures it's all that we can see.  I rationalize to myself and think that if I had noticed I would have thought that they were just different flashes from the camera, or reflections of light from the flash.  Unfortunately, they weren't...  Also, looking at the pictures gives a clearer image of the cataracts because of the light reflections perhaps.  When you were looking at her in person they didn't look the same as in the pictures.

Patching - The Bad Days

We've been patching her left eye - the 'good eye' - since December 3, 2012.  The patching started the first day we were able to get the contact in her right eye - the eye that had the cataract removed.

Jumping ahead...

This is the 3rd day of M ripping off her patches. The 1st 'bad day' she ripped off 10-15 patches throughout the day, and of course now has raw skin where the adhesive was. So yesterday and today I have been putting her mitts on her hands.  This obviously is stopping her from ripping off her patches, but leaves her unable to do much around the house.  This makes M miserable.  And of course makes the rest of us miserable too.  

These pictures are not representative of her mood when she is required, by me, to wear them!  I picked some happy moments of her, while she's sporting the mitts!

She seems to have figured out that she can rip the patches off, and it's becoming a habit rather than an isolated incident.  We had had weeks of 'easy' patching, and now are thinking about having to get those Pediatric Arm Restraints.  I'm going to keep trying to use these mitts for a few days, and consider getting the arm restraints if it continues much longer.  The big benefit of the restraints would be that she can use her hands; right now it's obviously frustrating for her because she can't use her hands.

She is also wearing a surgical patch because her skin is irritated from all the patches she has been ripping off.  We happened to be at her doctor's yesterday, and they gave us a few patches to use until the skin heals.  The adhesive just connects with her skin in a few different spots, hopefully allowing for some healing in the spots that need it.

Congenital Cataract

Our baby girl was diagnosed as having a congenital cataract.  On November 16, 2012 my brother noticed that her right eye was cloudy and suggested we get it examined as soon as possible.  November 17 we took her the Emergency Room at our nearest Children's Hospital.  Officially she was diagnosed on November 19 by the pediatric opthamologist as having a congenital cataract in her right eye.  Surgery to remove that cataract was performed on November 23.

It was a hard week for our family.  M seemed to be so healthy, was developing in all the right ways, and was moving around our house for months.  We had no idea she couldn't see out of her right eye.  She had been born with this cataract in her right eye and surgery to remove it was done a few days before she turned 9 months old.