Tuesday, April 16, 2013

Kate and the Neverland Pirates

As I mentioned in my previous post, once Kate and I were discharged from the hospital, we didn't get to go straight home - we had to go to see a specialist. 

Rewind to the evening of the day Kate was born. Because our pediatrician doesn't work on Wednesdays, his partner came to see us to give us the report on Kate's first check-up. Everything looked perfect except for one little thing: he saw a spot on her left eye. He described it as a freckle. We noted it, and just waited to hear from our regular pediatrician, Dr. Scott.

Dr. Scott visited Thursday morning. He reiterated the remark about the spot on her eye, saying it might be a cataract. To be safe, he suggested we see an ophthalmologist* as soon as possible. Lucky for us, there was one right across the street, so immediately after we left the hospital on Friday, we headed to see Dr. Tong. 

*Yeah, so I will SO be able to spell ophthalmologist now. Remember that beast of a word from the spelling list back in the day? :)

There, Dr. Tong confirmed that the spot on Kate's left eye was a cataract. He informed us that sometimes these had no effect on a child's vision whatsoever and required no action, but sometimes more intervention was needed if the cataract would affect the child's vision. He suggested two things: one, Kate should wear a patch over her unaffected right eye for about 30 minutes a day to help ensure the left eye get practice/"reps" to help be sure it develops properly**, and two, we should see a pediatric cataract specialist at Children's as soon as possible. They sent us home with some eye patches and helped us get an appointment with a specialist on Kate's one-week birthday, just five days later***. 

**I am POSITIVE I am doing a terrible job explaining these things in technical terms. Please forgive my humble right-brained explanations.

***In hindsight - no pun intended - this should have been when I realized that this cataract was probably not innocuous.

We headed home a little shell-shocked but undeterred. Here is Kate sporting her first eye patch: a lovely pink, cat princess patch with glitter on it. : )

Here's a less cute patch that I just included because I think the look on Kate's face is hysterical. It screams awkward family photo to me! :)
"Oh my gosh, I just saw a reflection of these bears on my eye patch, and they are HIDEOUS!"

I also emailed my siblings, parents, and a few close friends about Dr. Tong's report and included this thought: "I know that God's will we be done, and I know that if Kate has a visual impairment, it's His plan, and He will take care of her. I mean, obviously I hope the cataract is no big deal, that nothing is wrong with her, and that we'll eventually show her pirate era pictures to her prom date and laugh at all of this. But if it isn't, I'm not going to rail against our circumstances or God." Just a perfectly calm attitude. For whatever reason, we just assumed there was nothing to worry about. So while we waited to see the specialist, we just did our routine things around the house, like chilled out in our swaddle sleep sack...
 ...and notified Mommy that FOR REAL I AM STARVING PLEASE GET ME A BOTTLE NOW!!!!

Before we knew it, it was time to see Dr. Wang at Children's. 

Here's how it all turns out: Kate's cataract is large enough that it will interfere with her left eye's development if we don't remove it before she is six weeks old. Dr. Wang let Jeremy and me look at it with her special-eye-doctor-tool-thingy, and even with Kate's eye dilated enormously, the cataract occupied nearly the entire pupil. We see Dr. Wang again on April 24, and we have a surgery date set up for May 7 - a day before Kate turns five weeks old. From there, she will have to wear a contact lens in her left eye and periodically wear a patch on her right to help her left develop properly. When her eye reaches its full size - which we believe is between ages 8 and 10 - she will be able to get the crystal-lens surgery as a permanent fix. So, is this life threatening? Not at all. Is it inconvenient, annoying, and, for now, super scary? Totally.

You can read this page for more about cataracts. Congenital cataracts occur in 3 of 10,000 kids. That's 0.0003, or 0.03% for you mathletes out there.

I'm writing this post six days after the fact of finding out about this. I can assure you that my first reaction to the doctor's report was, despite the wisdom I showed in my email to family, to rail against God and our circumstances. There were tears. (It didn't help that the weather last Wednesday was NASTY - a gray, dreary, rainy day, perfect for bad news.) And once I saw the statistic above, my thoughts were not PG. At all. Honestly, I was pissed off. Though Luke's needs and Kate's needs are apples and oranges, they are special needs, and if I'm being honest, I was just really angry at being dealt a tough hand. They say God never gives you more than you can handle, and in those initial moments after finding out about this, I wasn't too happy with Him.

BUT... :)

Then life took over... Jeremy came down with a nasty virus that turned into a sinus infection, so he had a fever for 3-4 days. He was sick, and I entered uber-mother and care-taker mode. (Talk about a rough week, y'all!) I guess that helped me put things in perspective.

At one particularly rough moment, God reminded me of where I was about a year ago. It took a while to get pregnant with Kate, and while I waited (rarely patiently), I prayed that God would give us the family He wanted. I prayed that sincerely, even though to pray it sincerely was difficult; praying it that way meant I had to submit to the possibility that He didn't have another child in mind for us, or that the child He had for us might have special needs or face profound challenges. Recalling this prayer and the heartache I felt waiting to be pregnant reminded me: He has a special plan for Kate, just as He does for Luke, and just as He does for Jeremy and me. We hoped so much to have Kate, and her little cataract doesn't change the love we have had for her since she was a plus sign on a pregnancy test (even earlier). I'm sure some of you have seen this on Pinterest: 

I choose to believe that this must be why God keeps giving Jeremy and me these really unique, awesome kids. We're a great team, and we will take care of our Baby Kate - contact lenses, eye patches and all - and our Sweet Luke. He's got faith in us, and He'll take care of our family, the family He chose for us.

And with this epiphany came renewed gratitude, too, for the blessings we've had in identifying this issue and getting connected with the right doctors as quickly as possible. If you're in the Grapevine-Colleyville area and need a pediatrician, Dr. Scott has been absolutely awesome for Luke and was critical in spotting this for Kate. And I get the feeling we are going to know all things pediatric ophthalmology and optometry before it's all said and done, too, so if you need recommendations there, we'll be here for you. :)

While I sound super brave here, I know that as Kate's surgery date approaches, I will be a TOTAL BASKET CASE. Though cataract surgery is the most commonly performed in the US, it will still be performed on my baby... it makes me tear up just thinking about it! Accordingly, I ask that you please keep our family in your prayers.

Meanwhile, Kate is totally chillaxed about all of this. :)

Thank you for reading ALL of this... I'll post updates here and on Facebook as I have them! We love you guys!


Traci said...

Lisa, this is so beautiful and made me cry! I often pray for stronger faith, and the faith you have is AMAZING!

Anonymous said...

What a wonderful testimony. I will put your family and little Kate in my prayers.


Kim A. said...

Kate will be in my prayers! I love Dr. Scott, he's Braden's pediatrician too, and he refers to the best specialist, so Kate will be in not just good, but great hands...