post surgery

As the 8th loomed closer and closer, I felt an increasing uneasiness in the pit of my stomach.

Surgery?  Doesn't matter how routine it is, as a mom I just don't like it.  I mean, I'm not crazy about my child going under anesthesia.  And there always is the possibility that something could go drastically wrong with the eye during surgery.  So myself and a waiting room does not a happy combo make.  Not one bit.

However as I was getting ready to leave for Duke in the wee hours of Friday morning I realized that it wasn't just the procedure itself I dreaded.

It was my lack of being able to fully explain what was coming for the day that made me feel anxious.  After all, this is my child who comes downstairs nine mornings out of ten and greets me with, "Jidan (eggs) pleasy Mama?," and I knew that I wasn't going to be able to give her anything to eat.  I also knew that the events of the morning were going to be unfamiliar and I had no frame of reference to assure her that everything was going to be okay.

Thankfully in an answer to prayer, she never once asked for anything to eat, even though the schedule was running behind and she wasn't taken back until after 11.  She asked for her siblings several times as we waited, but seemed pacified that they were in school and that Daniel was with Grandma.  She remained happy and calm until about 30 minutes before surgery time when they brought us the gown for her to put on.

That's when the wheels fell off the bus.  (And I could have kicked myself for not seeing it coming...though in retrospect I'm not sure exactly how I could have prevented it).  After all, there we were, in an unfamiliar place, with part of her normal 'peeps' missing, and we were trying to take her clothes off of her.  The last time she changed into different clothes and went to an unfamiliar place, her entire world changed.  She may not have had the vocabulary to tell me her fears, but the look in her eye, the mournfulness in her cry, and the intensity with which she held to my neck spoke volumes.  Needless to say we quit trying to get her changed at that point.  My heart was breaking and all I could do was whisper over and over that I loved her so much and that she was going home with us later.

Eventually the nursing staff brought in a dose of premedication for anesthesia and that, combined with me putting on my 'clean suit,' calmed her nerves enough to put on her gown.

very loopy smile brought to you by anesthesia premedication

Then it was time.  Time to walk my baby girl back to the OR.  I'm thankful that they allow parents to accompany their children back to help alieve their anxiety, but it sure isn't good for mine.  See the first paragraph...I just don't like anesthesia...and while I would have gone anywhere with her, taking a child of mine back, to hold her in my arms while they put her under is something I simply will never get used to.

Blessedly the premedication relaxed her a good bit and she didn't struggle against the anesthesiologist at all.  As soon as she was asleep, I was escorted back out to Ian and then we went to take our chairs in the waiting room.

And then we waited.  And waited.  And waited.  Dr. F took every minute of the 100 she estimated the surgery would take.  Almost to the second of 100 minutes after I walked out of the OR, she came out to find us in the waiting room to give us a run down of the procedure.

Briefly, here is what we learned.  Once she was able to fully examine both of Natalie's eyes under anesthesia, she opted for the less invasive of the two surgery options.  If it isn't successful in relieving the pressure then Natalie will have a second surgery to implant the tiny drain in her eye before Christmas.  We also were given the discouraging news that Natalie also has glaucoma ~ though it is much milder ~ in her left eye as well.  This is disheartening because secondary glaucoma as a result of a port wine stain is notoriously difficult to control.  For now Natalie will have drops in both eyes, and will be closely monitored to be prepared for surgery if the drops don't do their job.

Finally it was time to meet my girl in recovery.  She came out of anesthesia pretty much as you'd expect a spicy girl to wake up...and we'll leave it at that.  Eventually she calmed down and we were able to leave.  When we finally got home around 3:45, I had a VERY hungry girl on my hands.  Thankfully Ramen are both very fast and a comfort food for her, so noodles it was.

She surprised me here.  I explained to her that I'd take off her no-no's as long as she didn't try to touch her eye.  She hungrily slurped down an entire package of noodles and when she was done, she held out her arms for me to put the restraints back on.  I explained to her that if she continued to leave her eye alone that she wouldn't have to wear them, but she insisted, so back on they went.  She may be stubborn, but, most of the time, she is obedient.

She was exhausted, as were the rest of us, so it was an early bedtime for the M7 on Friday night.  The last light went out in the house around 9pm.

Now we wait out the rest of the 'non-active' restriction.  Ever tried to keep a four year old rough and tumble type ~ with two rough-house loving brothers ~ calm and quiet for a week?

And we wait out to see the results of this surgery.  After the first post-op appointment Saturday, it wasn't the slam dunk we were hoping for.  But He is faithful and we trust that His plan for Natalie is good...

Her eyes ~ the sequel

Yesterday I got an email from one of my aunts just checking in on Darcy.

It would seem that she remembered reading about the increase in pressure in DQ's eye back in August and wanted to know if we'd had the follow up appointment yet because while she had been on vacation for a few weeks, she went back to check the blog for news and didn't see anything.

Big "bloggy mommy fail."

can you hear the disbelief in her voice that I forgot?

It would appear that all the excitement of the wee one turning three, my big girl starting school, the kick off for the formula fundraiser and then two half birthdays had me distracted.   In the midst of the chaos that is life right now, I totally let a follow up report slip.  Oh for just a little more time in the day and a bit better memory...

So how did it go?

Well, lets just say that despite not being seen until 2 1/2 hours after our appointment time, we walked out happy campers.

dq jumping for joy!

The new drops are doing their thing!

Lil' missy here is pretty happy to have surgery back off the discussion table for now.

And of course as her mama,  I am too!

Her eyes

Part of our routine involves heading to Duke every quarter to check Darcy's eyes. 

Our first visit was just a few weeks after she came home last March.  As we began treatments ~ several types of eyedrops and two goniotomy surgeries ~ we began to see the pressure in her glaucoma affected eye start dropping.  

Unfortunately this visit we saw a pretty big increase in pressure instead of it holding steady at the "below damage level" numbers we had seen earlier this year.  I knew things weren't as good as they had been when the resident who did the initial exam took one pressure reading, started flipping through Darcy's chart, took another reading, got an ever so slight frown and took yet another reading.  Then when Dr. F came in she totally skipped checking DQ's vision (which, from the exam by the resident, seems to be holding steady at this time) and went straight to checking her eye pressure.   

 

Dr. F is concerned because of the damage done to DQ's optic nerve during the first three years of her life when the pressure ran unchecked.  And the fact that the pressure has climbed up from back in March indicates that it is time to take action.  Darcy of course was listening and is not pleased at all with the discussion of surgery (this time to implant a tiny little valve that will help control the pressure) again.  

The last option we have before surgery is scheduled is replacing one of her twice-daily eye drops with a new one.  Apparently one of her drops has a high tendency of people building a tolerance to it, but it has less side effects than the new one we've switched to.  (Main side effect of this new one being that it gets into the blood stream through the tear duct and makes patients REALLY sleepy for about 30 minutes ~ a blessing at bedtime, not so much in the mornings...)  But we'll deal with sleepiness and give it a shot until our follow-up visit on September 2.  Pressure that day will determine if we leave after the exam or go to a pre-op appointment.  

To say that we are disappointed would be accurate.  However, while this increase in pressure surprised us, it certainly has not surprised our God.  We know that He has all things, including our baby girl's eyesight in her right eye, under control.  And so we will try what the experts say yet put our trust in His healing...

Is it just me?

Or did her switching from these...

...to these,

add about three years?

And I just have to take a minute to offer serious Thanksgiving here.

Less than one year ago, on March 23rd actually, we had our first visit with Darcy's eye specialist.  Despite the crazy high pressure that was built up in her glaucoma affected eye, Dr. F was able to determine that DQ did indeed have sight and not just light recognition in her eye.  Granted, it was about 20/400 at the time, but it was sight...

We were given our first eye surgery appointment and a prescription for her first glasses which would bring sight in her "helper eye" up to about 20/100.

Two surgeries, and eight months of patching therapy later, my little girl can see at about 20/70 WITHOUT her glasses on at all in her "helper eye."  Add her new "big girl glasses" with her new prescription and we know she can see even better.

How much better we don't know just yet, we'll find that out at her next exam in April.  But I can tell you that the difference I can already tell sure has made sitting in the waiting room during eye surgery twice and chasing my wee one with a patch in one hand some afternoons when she's feeling particularly mischievous worth it, that's for sure!

And I just had to share!

the business of miracles

We celebrated last night.  Not just a 'hey, let's have a scoop of the Blue Bunny Peanut Butter Panic ice cream in our freezer' deal,  but rather a 'let's go get some of the good stuff at our local favorite frozen custard place!' kind of evening!

The celebrated?  Darcy.  Her right eye to be exact.

Yes.  I said we celebrated her eye.  Why? 

Well, before her first surgery, the pressure caused by the glaucoma in that eye was above 30.  Dr. F (have I mentioned before how much we love her?) wanted to act quickly to lower that pressure as it needed to be below 20 to stop further damage to Darcy's optic nerve.  Back in April the fact that my baby was having surgery just one month after she got home had my head spinning!  But today I'm so grateful that we moved at a quick pace to have one surgery that was quickly followed by a second.  That's because at her final surgery follow up exam this week, the pressure in Darcy's eye was 18.  Yes, EIGHTEEN!!! 

That means that the shunt implant ~ which has many potential complications ~ is officially off the table for now.  Can I get an AMEN? 

And I just have to mention that when her strong eye was patched in the doctor's office, Darcy's vision was tested at 20/60 in her 'helper eye.'  Yeah, 20/60!  I used the term 'helper eye' because that's what we thought her right eye would be.  Kinda drastic improvement from the 'not as good as 20/400' diagnosis we were given at her first pre-op appointment with Dr. F back in March.

Using both eyes, (with her glasses) my girl now sees at 20/30.  Oh, and I have to brag again to say that she now uses the letter chart instead of pictures ~ she must have a pretty good preschool teacher.  ;)  

To me  it's all amazing when you consider what Dr. F said to me at this most recent appointment.

"I know you remember that first visit when I told you we were going to be trying to preserve light recognition in Darcy's helper eye.  If you had told me that day that in six months you were hoping for pressure under 20, without an implant, AND vision in that eye of 20/60 with corrective lenses, I would have told you that you were whistling Dixie.  She's a miracle child."

Some people take the position that God is no longer in the business of miracles.  There was a time that I may have fallen into that camp.  But today I present evidence that proves otherwise.  My baby can see!

God is bigger than the boogie man

We do watch a good bit of the Veggie Tales around here...

But seriously, at the end of our first surgery follow up today, this song ran through my mind.  "God is bigger than the boogie man.  He's bigger than Godzilla or the monsters on TV.  Ohhh God is bigger than the boogie man and watches out for you and me!"  (Click here if you want to watch the video.  Go ahead, you know you want to!)

Now we haven't been having any Boogie man sightings around here, but we have had Sturge Weber Syndrome and glaucoma trying to rear their ugly heads.  Type I (the most serious form) Sturge Weber was stopped dead in its tracks at our first ~ and to this point, only ~ visit to neurology back in April when the neurologist observed Darcy, gave a quick exam and then asked, "So why exactly are you here?"

And while glaucoma keeps trying to have the victory, today I heard news that delivered her glaucoma a real blow.

Oh, I totally forgot to mention that since her surgery in April that Darcy has grown over an inch in height. (Admittedly that has nothing to do with glaucoma, but I still thought it was pretty cool).

First of all, today, within minutes of having the gauze removed from her eye, Darcy had a vision test.  With her good eye patched, she was seeing pictures at 20/100 vision.  Dr. F. was amazed that she was so close to her best vision test (20/80) the day after surgery when things were expected to be cloudy.  And I also must say that she was able to verbally identify all the pictures ~ meaning that her vocabulary has improved ~ instead of pointing to a "match sheet" as she had to the first few visits.  

But the really cool part was when Dr. F. and I were discussing a few non-surgery related things today at the end of our visit.  I asked about prescription sunglasses for my little one (transition lenses will be our solution to that with her next frames) and then about eye drops in the future.  (Darcy will have daily drops for life ~ not a concern for us, more a curiosity question).  After we chatted about drops and Dr. F's hopes that this surgery will be the last, Dr. F. started heading for the door.  And as she began to step out she stopped and sorta hesitated before she said, "You know, this little girl is amazing.  When I saw her for the first time, I think I told you that we were simply trying to allow her to have light recognition in that eye.  Now, four months later, we are working to preserve real vision.  I never would have thought..."  Then her voice trailed off as she smiled and walked out the door.

(Think about it for a minute.  These words coming from a doctor who treats pediatric glaucoma patients not just from all over NC and across this country, but also internationally.  She has seen many, many children with advanced glaucoma.  She's an expert, and yet she has no words for how well Darcy's eye has responded to treatment thus far ).

That my friends is God showing up in my baby girl's life.  I don't know why He has chosen to reveal Himself in such a big way regarding her vision, but it does make me look forward to His plan for her.  I just couldn't let this day pass without giving my creator a huge shout out.

Sing it with me now, "God is bigger than glau-co-ooh-ma..."

Surgery tomorrow

Just got off the phone with the schedulers at Duke Eye Center.  My baby will have her second eye surgery around 8:45 in the morning.

She's a trooper.  We've been talking about what's coming up this week for a few days now.  She's not thrilled to be going back again, but sighed and gave an "Okay" when we explained how it will help her continue to see.  Her glasses and patch have helped so much already that I think it makes it easier to understand.

As for me, I've done this once before.  (I wrote about it here).  I know I can do it again.  The surgery is minor and routine.  Still I must admit that I'm not looking forward to my time back in the waiting chair because anesthesia is anesthesia and I'm not going to pretend to like it.

This time though, I know that there are many out there ~ dear friends, loving family, and even folks who come by Fireworks and Fireflies on a regular basis to check what's going on with our little family ~ that are praying.  If you are one of those, THANK YOU!  Your prayers got us through last time and we covet them again this time.
Here are a few things on our hearts as we wait for surgery to be complete:
Darcy will not be anxious or afraid as this time she knows what the surgery center is.
Darcy will not be hungry before surgery.
Peace of mind for Ian and I as we wait.
Dr. F's hand to again be skilled.
Darcy will wake up gently from anesthesia.
Darcy will not experience nausea following surgery.
Quick recovery.
This half of the goiniotomy will get pressure numbers down to where they need to be and Darcy can avoid another eye surgery.

I'll post when we get home tomorrow...

Two days, two specialists...

For a while I have to admit I wondered why Ian and I were "uprooted" from our happy existence in our old town.  Recently I've come to realize that God was at work getting us closer to Duke, long before we even had an inkling of our reason to take advantage of the "world class" doctors there...

In a typical week when we're home we use just over a half tank of gas in the Sienna.  But this week we used two tanks as Darcy and I burned up the highway between here and Duke two days in a row.  Admittedly I wasn't thrilled about the way scheduling worked out, but we'd been waiting for her dermatology consult since the week we got home from China and Dr. F wanted us back on the surgery schedule ASAP.  So two days, two specialists it was.

Wednesday was dermatology.  Dr. B was FANTASTIC!  I have to admit that I had been slightly put off at having to wait three months to get in to see him, but after meeting him I understand why he's got such a waiting list.  He has an amazing "bedside manner" and quickly even had Darcy ~ who is a bit suspicious of anyone approaching her in an exam room ~ at ease.  We had his full attention for over 45 minutes.  He went over how the pulsed dye laser works (Ian could totally explain it to you, I'll have to settle for saying it is really cool...) and gave his thoughts on how he thinks Darcy's port wine stain will react.  He also noticed how both she and I are starting to have our summer tans ~ despite being slathered in SPF 50 when we are outdoors ~ and decided that we'll wait until October to begin treatments.  Then he gave time for us to ask questions and just talk about our feelings on seeking treatment.

I've been a bit on the fence about going through with dermatology since we've been home.  On the one hand I don't even notice her birthmark anymore.  I do think she is beautiful just the way she is.  And I would never want Darcy to think that we felt like we had to "fix her."  But on the other hand I know how cruel kids can be.  I suffered from dreadful acne in high school and I cried so many nights just wishing that I had beautiful skin like some of my friends.  Later when I got to college I finally found a dermatologist who had a medical solution and I remember wishing that my parents had taken me to him years before.  I expressed all this to Dr. B who offered to let me contact some of his teen patients who serve as references.  In the end we decided, for now anyway, that we're going to start treatments and see how they go.  Dr. B's PA gave Darcy a teddy bear and a ring pop and said that by the time we were finished that we'd all feel like family.   (That's because most people need at least 10 to 15 treatments before the stain is "as light as it is going to get," though some get optimal results in three to four visits while others take closer to 100).  Armed with this information we headed out as Darcy offered him a high five and promised to see him soon.

Oh, I nearly forgot though, Dr. B gave us time to ask questions.  After taking care of the big stuff, we asked one more question that has been buzzing around in our house for several weeks now.  And armed with permission, (didn't know how her port wine stain covered ear may react) tonight we went and took care of something Darcy's been wanting.

 Um, yeah, those are Hello Kitty studs ~ AND that is one happy little girl!

Not a single tear, and they did them one at a time.


Thursday was eye.

We are scheduled for surgery again on July 7, but we got some very encouraging news from Dr. F during our exam.  First of all, the pressure has stayed at 23/24 since our last visit a month ago.  That was good news because when the last reading was taken, Darcy had just come off some high steroid eye drops that could have been the reason for the lower pressure in her eye.  (These drops are only for short term use).  But since the number hadn't climbed back up Dr. F thinks the goiniotomy was successful and now wants to go back and do the other half of the surgery.  If it ends up lowering the pressure down to anything below 20, we will be avoiding the valve implant for a little while longer (possibly forever).  So we're going to give it a try.  If it is unsuccessful in bringing the pressure down to below 20, we'll have surgery again in the early fall to do the valve implant. 

The other great news was the result of Darcy's vision test.  Before her first surgery (which relieved some of the warping of the eye), Darcy's vision in her right eye was about 20/400.  Surgery and glasses improved it to around 20/200.  And Dr. F thought that was "as good as we were going to get."  But she wanted to do the patching to make sure Darcy's brain continued to receive signals so vision wouldn't deteriorate.  She didn't expect any improvement.

I guess God had other plans.  In just one month of patching, Darcy's vision in her right eye has improved from 20/200 to better than 20/100! (they think it is around 20/80)  For anyone (like me until we started this "glaucoma journey") who doesn't understand those numbers, a person with 20/200 can be considered legally blind.  This means that the smallest letter than can see standing at 20 feet away from the chart can be seen by a person with normal vision from 200 feet away.  Think stop sign letters.  (Can you imagine how bad 20/400 must be?)  20/80 means that you can read an alarm clock at ten feet and the source I found mentioned that news headlines are typically this size.  What a HUGE difference for my sweet girl.

And to think that we had been told that surgery and glasses would be a one time improvement.  Oh I just love the surprises God throws in!  That boost even gave me a chance to share a bit of my faith with Dr. F.  And that was fun because just the night before the kids added praying to be able to share the love of God with someone to their nighttime prayers. 

So even though I could have grumbled about finding coverage for my older kids (one more blessing, two WONDERFUL friends who happily took them for me during marathon appointments) and driving all the way to Duke two days in a row, we were given reasons to celebrate.  God is good!

A new look on life

Well, today's eye exam didn't give quite the results we were hoping for.

At the last visit three weeks ago Dr. F was encouraged by the reduction in pressure in Darcy's eye and hoped that we'd be able to avoid further surgery for months, possibly even years.  But the pressure has remained the same since then and so our next visit in three more weeks is a combo eye exam/pre-op.  At that time Dr. F will determine if the goniotomy was successful enough to try to open the second half of the drain or if it is time to go ahead with the Baerveldt valve implant.  That news was disappointing, but we are thankful that Dr. F wanted to work Darcy into the surgery rotation ASAP after we told her of our current situation.  She feels confident that we can get scheduled before our current insurance plan changes on June 30.

But there was a really good part to today's exam.

Our little girl has a new look on life.  Her strong eye went from 20/60 to 20/40 and her helper eye went from 20/400 to somewhere between 20/200 and 20/125.

 And not only does Dr. F (and therefore we) know she is seeing better, more importantly, it appears she knows she's seeing better.

Cause she grinned as soon as they were on her face.  Then she spent a little extra time studying mine.  She never once tried to take them off all day.  And when she reappeared from her bedroom after her nap, she was sporting her little pink frames.

Something tells me that her little grin means she thinks she looks pretty.  Of course we do too!

And you know what I love about my kids?  Both of her siblings were pretty supportive.  Of course I wasn't really surprised about that.  These days, about 90% of the time, that's the way these guys are.   Loving life.  Laughing.  Smiling.  Together. 

Now, there is the news that we will start patching her strong eye so that the brain is forced to accept information from the helper eye.  Three hours a day.  Seven days a week.  For the next two years.

Can't say that I'm looking forward to it, but we'll see how the first patching goes tomorrow.  Course from what I know about this little girl, she'll roll with the punches.  It's what she seems to do best.  And when she gets a questioning look from someone in public about her patch, she's got her posse by her side.  

 And when you got love like this on your right and left, who needs to worry about what others might think...

This side of surgery

**I am dreadfully behind on posting details about Darcy's surgery that was three weeks ago yesterday.  How has that much time passed already?** 

The eye center at Duke is TOP-NOTCH and I have only gushingly positive reports to give them.  The worst part was waiting to be called back to be with Darcy in recovery.  By the time an hour had passed since Dr. F came out to talk with us, I was pretty much climbing the walls.  But then the nurse called for me to come even though Darcy was still "under."  She smiled and said that when she read that it was Darcy's first surgery she remembered being in those shoes as a mother.  So she encouraged me to rub Darcy's face and talk to her until she was awake.  I was so happy to be with her when she began to flutter her eyelids and call in her sweet, sleepy voice, "Mama?"

When she kept down both 24 ounces of apple juice and 12 graham crackers and all her vitals checked out fine we were finally dismissed to head home.  We walked in at 8:45 and left shortly after 2. 

She did doze off on our way home, but shortly after we got her propped up and settled, she woke up.  Hungry!  And those pesky "no-no's" weren't going to stand in the way of her beloved Ramen.

It was then ALL we could do to keep the girl from jumping rope or hula hooping.  Finally I decided that despite the fact that she slept all morning, my best bet to keep her from being "too active" was having her take a nap.  Guess there was still some anesthesia in her blood, cause within minutes she was out cold and enjoyed a several hour nap.

There are many things about Darcy that I will always wonder.  One of those things is how she became so compliant.  I mean, she never once, in the five days that she wore her patch, ever tried to pull that patch off her face.  And the tape for it pulled as we had to pull it off ten times a day for her drops regimen.  But never did she complain or flinch.  She also never fought putting her "no-nos" back on which we took off for meals (after explaining to her with a combination of n Mandarin words. pantomime, and the English word eye that she could not touch her eye).  She'd just audibly sigh and hold out her little arms as we velcroed them back on.  And the drops themselves?  Lets just say that with a schedule like this

that I'm thankful it wasn't like that episode of Friends where Rachel had to be tackled by the rest of the crew to have drops in her eyes!  Darcy would simply rattle off something in Mandarin while holding out her hand for a tissue, leaning her head back at the same time.  Sweet girl even did what she could to keep her eye open in order to assist us.

The next morning we headed back to see Dr. F and she was very happy with the way things looked.  The pressure was at 31 (a bit higher than it had been during surgery the day before), but we were told that it was expected to temporarily rise due to the eye being messed with.  At home that afternoon Darcy was back to her spunky little self, blowing bubbles

And yes, I did take her to Duke that morning sporting a VT polo dress...

and putting on a little fashion show.

Yep, my gal is full of personality.  Never mind that she had been in our home for only one month and four days before going through surgery.  It didn't seem to phase her one bit.  I praise God for it not appearing to be an issue with our bonding/attachment progress.

We returned to see Dr. F the Monday after surgery for another pressure reading.  I was thrilled to hear her say, "I'm very encouraged by the results at this point!" (The pressure was down to 22, just three points above the normal range). Followed by, "If we continue to see this type of pressure decrease, we may be able to avoid further surgery for years."  What a wonderful thought after knowing that even if the goniotomy went well that we may be back for a second part of it in six to eight weeks!  

Monday we go back for the next follow up visit.  Obviously we are praying for a pressure reading under 19.  Monday will also be fun as Darcy's glasses have come in and we'll get to pick them up at that visit.  So tune in next week to see what comes next. 

One thing for sure, there is never a dull moment around this house.  Oh, except for moments like right now...

Yeah, common nap time is what keeps sanity in this house!

**And for a bit of housekeeping, thank you to everyone who has offered support in light of our recent "employment situation."  So many have left encouraging comments and scripture verses.  Believe me when I say we have been devouring those scripture references!  I have a lot of emails to respond to, but please forgive me if it takes a bit longer than usual ~ I am sharing my computer with someone who is job searching and resume tweaking...  And some of you I'd just call, but the only thing we lost this past weekend in GA is my voice.  It's on its way back now.**

Surgery

Sunday morning at church Ian and I observed Darcy drawing a picture.  When she was finished she held it up and looked at it from about three feet away.  Then she held it over on her right side and held it about three inches from her eye.  And I realized then just how difficult it is for her to see with her "helper eye."  That "sealed the deal" for both of us on how excited we are for her to have surgery to relieve the pressure in her eye so that glasses will improve her vision.

Tomorrow is the big day.  Darcy's goniotomy surgery is scheduled for...well...honestly I don't know exactly what time it is scheduled.

Today I've alternated between being excited about the procedure that I believe is going to relieve the pressure in Darcy's eye to being a bundle of nerves about my baby going under general anesthesia.  When I called for her surgery appointment time I was in an "unnerved state" and jotted down the reminder notes about "no food or milk after midnight, only clear liquids up to 7am, check in time at 8:55,"  answered questions about if she's had a fever or been exposed to any contagious diseases in the last week, and gave cell phone numbers in case the surgeon gets behind early in the morning and they call to delay our check in.

It's just that  somehow I forgot to clarify exactly what time the surgeon will be working to improve my girl's chance for sight in her eye.  I'm thinking that check in is an hour before the actual procedure, but there's a lot going on in my mind right now and I just can't seem to remember for sure. And I also seem to be experiencing writer's block.  I spent a good part of nap time today trying to compose my thoughts and am unhappy with my inability to convey my trust in God, unease about anethesia, and excitement for the potential results with words today.  But having extra prayers being lifted for my youngest was more important than my writing skills today...

So will you join us in praying at a vague time in the late morning tomorrow that Darcy's surgery is successful?  

We're excited that soon she may be able to see much more clearly!  I'll update as quickly as possible tomorrow once we're home, though it will be a few weeks before we learn if additional surgery will be necessary. 

My baby's eyes

 They are beautiful eyes, don't you think?

(taken Saturday at the zoo)

So Tuesday was Darcy's big day at the eye center.  One advantage of living where we do is that there is nationally ranked eye care within an hour's drive.  The pediatric department is TOTALLY set up for kids and was AWESOME!  Immediately upon walking in I was so thankful that the first opthamologist decided to go ahead and refer us on.

God continues to go before us in all we do. That was confirmed when our "randomly assigned" doctor who is working on her pediatric glaucoma fellowship turned out to be fluent in Mandarin.  Hearing a familiar language really put my girl at ease and she complied with all she was asked to do.  So we didn't have to wonder if it was vision or mis-communication anymore.  The doctor was able to talk with Darcy and get her to do everything necessary in order to test her sight.

After several rounds of dilation drops and being checked and rechecked by both the fellowship doctor and the specialist, a plan of action was put in place.  First of all we were happy to hear that the sight in her strong eye is pretty decent ~ like 20/50.  Then we were thrilled to hear that while the sight in her weak or "helper" eye is pretty poor (like 20/200) that she does indeed have vision in it.  The specialist was quite surprised and her exact words were, "I wouldn't have given a nickel for her to have anything more than movement recognition in that eye with all the distortion from the pressure build up."  Apparently the glaucoma has been there for at least a year and likely since she was born.  And with her high pressure the specialist is amazed that there hasn't been more damage to the optic nerve.

She also said that we are at the point that a few more months may be critical, so we are going ahead with the surgery on April 7.  She will be having a goniotomy procedure.  (Link included here for those of you who want to know exactly what that is ~ like I said, Ian has already watched one on YouTube.)  It is the least invasive of the surgical procedures for glaucoma (actually outpatient) but Darcy will be put under general anesthesia, so your prayers that morning will be appreciated!

We were also given a prescription for eyeglasses for my beautiful girl.  We believe that her glasses will give her 20/20 vision in her strong eye and will improve her "helper eye" up to about 20/100.  The good news is that glasses look great on her face.  The bad news is that toddler glasses ~ the ones with the little "wrap around" ear pieces ~ are hard to find.  And expensive.  So far we've found three to choose from.  And with the amount we're going to have to pay for them, I want to LOVE them, not sorta like them. 

These are my favorite of the three.  Yes, they are Disney.  Yes, they come in pink.  Yes, they are ridiculous in price.  I like them, but I'm not sold just yet...

Anyway, back to the end of our day at the eye center.  After a detailed discussion about the surgery, the hopeful outcome, what the next step will be, and of course the risks involved, we rushed over to Darcy's pre-op exam.  The nurse practitioner was really great and we enjoyed our time with her.  And I just had to share that while she was going through the questions, she asked about Darcy's diagnosis.  So I told her that right now the neurologist is calling it Type II Sturge Weber Syndrome though we won't have complete confirmation that it is Type II and not Type I until we have a MRI run.  Then I actually started to explain to her the difference between the two, forgetting that while SWS is extremely rare, that the specialized team at that university clinic sees many SWS patients from the around the state.  But instead of being put off with me for "teaching a nurse" about a condition that she has MUCH more experience than me with, she gently said,  "I've seen a lot of Type I SWS patients, and Darcy is nothing like them.  I believe that MRI is going to tell you the same."

So then, some three and one half hours after we walked in, we were back on our way to the car, glasses prescription and pre-op orders in hand.  One more piece of the puzzle in place...

The new kid in town

 Proudly showing off her birthday nightgown.

Actually calling Darcy the new kid in town pretty much seems like it can't be true.

I mean, sure, we did have a total and complete melt-down today leading up to nap because she wanted milk and I didn't understand her (at first polite but then frantic and sobbing) request.  After I finally (with Kylie's suggestions) figured out what she wanted, we added milk to her signing vocabulary...

But other than that, it feels like she's been here in our home with us for months already. Sometimes I even find myself wondering if she and Caleb came from the same mould.

Wish they had been eating their cupcakes beside each other instead of across the table from one another (so I could have gotten both in a picture) that night ~ it was a mirror image going on for sure!

But then I have to stop and wonder if it were actually she and Kylie.

 A second "little momma" lives in the house.

 We continue to make break-throughs daily, this little one and I.  Take for instance her nightly bottle.  Which for a second I must side track and recall the complete disbelief on our guide's face when she asked us if we brought a bottle along with us and we said no.  I mean, really, she was just weeks shy of turning three.  How were we to expect that she still took a bottle at night?  But oh how glad I was that she did, bottle time is wonderful for bonding.  Except that first night she refused to let me do more than sit her on my lap.  She put her back to me and grabbed the sippy cup out of my hand (we've bought a bottle since we've come home).  But tonight as I gave her the bottle she laid back in my arms and gazed at me as she let me stroke her face.  

And many nights I wake up either with her arms around my neck, her hands on my face, or her fists wrapped in my hair.  Sure, I'm a light sleeper and all, but it warms my heart that she wants to be so close.  Because at first she wasn't too thrilled with her new mama.  Besides, one day she'll move to Kylie's room (that's Kylie's current prayer request at night ~ that "soon Darcy will feel safe to sleep in her bed in our room so we can be sisters together") and our queen bed will feel huge again.  

In addition to starting to trust me, Darcy is learning the routines of the house.  Dishes to the sink after a meal, dirty clothes to the laundry basket after bath, shoes to the closet before bed, toys put away in their respective spots.  And the funny thing is that frequently she is reminding her brother who is lost in his cars.  It cracks me up to hear her yell, "Hah!  Ge ge!"  (Hah is her little yell to get your attention, it sounds sorta like hey, but not really.  And ge ge is  Mandarin for older brother) at him across the house.  

She is also learning to endure her eye drops.  Those got started  on Saturday night.  (They would have started on Thursday night, but we decided to wait for her to be added to our insurance before we paid for the drops.  I stopped by Thursday to get them and they were going to be nearly $300.  After insurance they were $60).  By now she climbs up in my lap when she sees Ian coming with the bottle, rattling off something in Pingyao (what we were told her dialect was) and holding her hand out for a tissue.  Then comes the smile as she's also learned that in exchange for the torture that she gets two M&M minis.  

 "Maybe if I wear sunglasses Mom and Dad won't recognize me and then can't put my drops in"

Yes, she's wearing four pair.  No, it wasn't really anywhere near "drop time."  I also had to include this picture full size to document how her pants slide down.  Poor girl has no hiney to hold them up...

Speaking of eye drops, the day before we even started them, we spoke with the pediatric childhood glaucoma specialist (or rather I listened as her secretary spoke to me) and learned that we have an appointment to meet with her on the 23rd, immediately followed by a pre-op consultation, and Darcy has surgery for her right eye scheduled on April 7.  I questioned if they were going to give the drops a chance and was told that Sturge Weber related glaucoma is notioriously difficult to control with drops, so they are putting us down for one of two surgeries (to be determined during our visit with the specialist on the 23rd) but can simply cancel the surgery if the drops work.  This way we are already in the system in order to get things moving to preserve whatever vision Darcy has left in her right eye.  Sorta made my head spin.  My darling husband on the other hand was immediately on You Tube and found a video of the surgery Darcy is most likely to have.  He was like, "Hey honey, check this out!" but I saw a needle and an eyeball and decided that he could be the "family expert" on what was coming down the pipes.  I'll be there to love on my girl, but I'm not gonna watch it!

So, I said Sturge Weber related glaucoma.  Following our visit to the local pediatric opthamalogist and then our pediatrician, Sturge Weber was put on the table.  Fair enough.  Some additonal research (to help explain what it is to family) revealed the following.

"What Does Sturge-Weber Syndrome (SWS) Look Like?

The most apparent sign of SWS is a birthmark or port wine stain (PWS) on the face. The PWS is due to an overabundance of capillaries just beneath the surface of the involved areas.
When the port wine stain covers the eye and forehead region of the face, SWS should be considered.
In rare instances, SWS is present even in the absence of the PWS. SWS consists of three basic types involving a PWS on the face, eye or the brain."

One thing I want to point out is that, in our case, a child with Sturge Weber looks like any other everyday kid.

She runs and plays on the playground

and gets excited about birthdays. 

Which brings me to the visit with the neurologist.  We walked in and after he observed Darcy for a few minutes and asked me about her medical history (which of course is limited) he looked at me and asked, "So why are you here?"  And it wasn't a smart alec way that he asked.  He asked me to put my mind at ease and while he did confirm that Darcy has SWS, he gave his medical opinion (that can't be 100% confirmed without an MRI) that Darcy has Type 2 SWS.  So there it is.
(Type 2 involves a vascular malformation on the face and the possibility of glaucoma, but no evidence of brain involvement.  Recognizing the facial port wine stain is often the first sign.  Throughout the life of the individual, connected symptoms may include glaucoma, cerebral  blood flow abnormalities, headaches and various other complications.)
When I questioned him to learn if seizure activity could have gone undetected in China (which would change her classification to Type 1 which is MUCH more involved and unknown) if they were petit maul seizures he assured me that SWS seizures would be grand maul "jerky movement" seizures.  Then he gently suggested that we have an MRI scan in a few months to put my mind at ease, but AFTER we deal with the pressing issue, which is her eye.

Oh, and yes, we are planning to see what a dermatologist (we are lucky to have one of the country's leading pulsed dye laser surgeons here in our greater metro area) can do about her port wine stain.  We've gone back and forth on this one,  (Honestly I think that making decisions that can be viewed as cosmetic are loaded) but in the end have decided that if we can help prevent her PWS from thickening and becoming raised later in life that we will do it now.  I called his office as soon as we got our referral, but he is so booked up that our appointment is the first week in June.  At least we have some time to build language skills before that round of treatment begins...