FIRST REAL PAIR OF APHAKIC GLASSES!!!!

Thanks to the generosity of fantastic friends and family, we were able to pick up Sadie's first pair of Aphakic glasses!!!  We drove to the clinic in Edina to pick them up over Joel's lunch break.  Drum roll please.......

 She loves them!!!  At the clinic she was staring at Joel, Emma, and myself with a big smile on her face.  Tears of joy came down my face - they've been coming all day!  
Admittedly, they are a bit shocking at first, since they are SUPER thick and magnify her eyes.  I have been familiar with this in pictures of other little ones online, but in my own daughter.....it was jarring at first.  But we're getting used to them QUICKLY since she has adapted so well and loves them!!!  She seems to be seeing things for the first time in months.  
Contact lenses are still the way to go, and we get that.  But temporarily, while she can't use the CL's after surgery, it's so nice to have a back-up.  Plus, if there's a day that we need to jet out of the house and can't battle the strong baby, then we can just try again later and still have the glasses so she can see God's good world.  :)  
Enjoy the pics!!!


 

Sadie's Christmas presents

Our presents to Sadie for Christmas!  Merry Christmas, darling!

Contact lens cases from the dollar section at Target.  :)

Because I'm too lazy to take a picture with my camera and then download it to my computer, I decided to take a picture with my webcam.  Hopefully you can all read the backwards print.  :)

Yes, we did get her other items, such as toys, but these were glasses/eyes related.  And super fun!

Excuse the language.....

Just to put a smile on your face (and mine)!

Saturday Post-Op

As we've normally had surgeries scheduled for the beginning of the week, having surgery on a Friday left us wondering how we'd handle the post-op.  Dr. G. to the rescue - she met us at the PWB building on campus where absolutely no one else was in the office.  The nice thing was that we got to chat with her for an extended period of time without being concerned that we were taking her away from other patients.  

Sadie's eye looks wonderful!  We are thrilled with how clear the cornea looks.  This morning we got a really good look at where the shunt(s) is located - it's a very tiny plastic tube that we can see at the very top of her cornea (the blue part), but you can only see it if you are shining a very bright light in that area.  It's fascinating, and gruesome at the same time.  :)  We discussed glasses vs. contacts further, and we have more information to understand where Dr. G. is coming from when she requests that Sadie should not wear the contact in her surgical eye for up to 4 weeks.  When the shunt is placed, there is a very tiny plastic piece underneath a fold in the very upper part of her eye, and the tube reaches down into her cornea.  The fear is that while this area is healing, the contact could not only irritate and possibly infect the surgical area, but there is the possibility that the contact lens could go underneath the fold and behind the eye.  

All together now......"GROSS".

So, we're working on a temporary pair of glasses, yet again.  They were not able to check her prescription, so we're getting a lens for her that is akin to a drug store lens - very simple prescription but SOMETHING while she can't wear both contacts.  Our amazing new friends loaned us two pairs of their daughter's glasses that she used when she was Sadie's age.  They are so generous!!!

Hang in there, Sades!  We're getting closer to a more stable life for you, my love!

EIGHTH procedure......sigh.

After the EUA was rescheduled from Monday the 16th to today, Friday the 13th, we frantically changed our schedule, canceling two appointments for the morning and asking for help when it came to my theatre performance that night.  My parents graciously rescheduled their return to the midwest from Florida and were able to come and be with us.  

 

 

After being delayed for about 45 minutes (MUCH better than we assumed after being scheduled for an early afternoon procedure), Joel and I went into this day being more mentally prepared that Sadie would most likely need a Baerveldt shunt placed in her right eye today, and we were correct.  The good news is that her left eye (having been worked on November 11th) is handling the pressure quite well and was at a 16!  (As a reminder, anything under 20 is good.)  Thank the good Lord!  Finding out her right eye was at a 40 was a blow, considering we've been so diligent about the glaucoma drops, but if the shunt is the way to go, that's obviously the right decision.  

 
Sadie was a trooper as usual; we're always amazed by her eagerness to eat after being under anesthesia.  Maybe when she's older it will be harder on her tummy, but she gulped down almost 4 ounces of Pedialite right away and another 4 ounces of formula.  Good girl.  :)  Her post-op nurses were wonderful as usual, and the best news of the day was that because she's past the 6 month mark, she didn't need to stay for the previously required 2 hours in recovery!  
Dr. G. told us that yes, there was another crack in her right cornea, but that SHOULD heal after the pressures go down.  There was a suture coming out in the left eye, so she took care of that.  She also told us that Sadie was a fighter in the OR, showing the nurses and doctors her strength when they were trying to administer meds and tubes.  That's my girl.  :)

Although this is her EIGHTH surgery in 6 months, we pray and hold on to hope that the Lord above knows what He is doing and that this is the right path for our daughter's health and vision.  She amazes us everyday.....we are so lucky to be her parents and learn what real strength is!  

New Book

What we got in the mail today from Auntie Katie and Unkey Davey.
Jack Wears Contact Lenses and Glasses....Just Like You!

So excited to read to Sadie!!!

A good view into Sadie's visual impairment.

I found this today on one of the fantastic FB forums and groups.  

Although incredibly helpful for others (and myself) to understand what struggles Sadie might currently face (and battle in the future as well), it's also quite hard for me to grasp.  I would do anything, anything, to grant my baby perfect vision.  Although I am near sighted and need glasses/contacts to live everyday life, I no longer take my vision for granted.  

I vow to give Sadie every possible experience life has to offer, regardless of her visual struggles.  

With Halloween upon us....

Daddy vs. the Contacts

After reading this on eyepowerkidswear.com, Infant Contacts 101, Joel and I decided to have him learn how to put in and take out the contacts.  It would be great to have another set of hands that's knowledgeable in case I am unavailable.  

Tonight was a great success!  Though he admitted being nervous, he triumphed in the right eye after only 2 tries!!!  (I had already taken out the right CL.)  Way to go, honey!!!!

And not a hint of jealousy from me (who is a contact lens wearer) who struggled for MONTHS to really get it right!  :)

Eye "contact"

Looking back on Em's baby photos, I see so many pictures of her looking directly at the camera, from very early on.  She got used to mommy being in her face, and I became her paparazzo.  :)  I have done the same for Sades, taking many pictures of her daily life, trying to capture every moment.  What I have noticed from my Aphakic baby is that she has a very hard time focusing on something for more than 1 second (the vision teacher calls it "broken tracking"), so I am unable to get many pictures of her looking at the camera, smiling at me with her amazing beautiful face. It breaks my heart, and it's a new learning experience for me: trying desperately not to compare my little gal to other babies her age, or even her older sister.
But today I got the greatest gift - a picture of Sadie smiling at me. I'm not sure if God knew that I needed a "win" or if the contact lenses are helping her vision.  But I know that I will treasure this....forever.  

"Hi, Mommy!"

SUCCESS!!!!

I.....GOT.....THE....CONTACT........LENSES.....IN......BY......MYSELF!!!!!
(Ok, perhaps Em assisted by distracting Sadie, but still.)
Do you know how hard this is?  Seriously?!  It's like trying to put pants on a fish.  Just shows what you can do if you HAVE to.  Success!

Renaissance Festival

We were lucky enough to get free tickets to the Renn Fest today, and I'm super glad we went, as it was great weather, and Em had a wonderful time.  Sadie slept most of the time, but when she woke up, instead of keeping her in the stroller, I put her in the Baby Bjorn so she could "see" what was going on.  I had her big brimmed pink hat on her, covering up her eyes from the powerful rays of the sun.  It's so tough to be outside with her glaucoma; it makes me sad that life is so bright for her.  

As we were walking up to a vendor to get some ice cream for Em, the gentleman working behind the counter mentioned that Sadie couldn't see from underneath her hat.  Maybe it was his tone (don't-you-know-your-baby-can't-see-anything) or look of questioning, but something inside me snapped.  "She has glaucoma!", I almost shouted.  I'm sure he meant nothing by it, but some days I am able to be patient with the comments and some days the comments trigger my "Momma Lioness" (as Sadie's wonderful ECFE teacher calls it).  

Sorry, vendor at the Fest.  I'm still learning how to deal with this life that God has given me.  

Picture of Sades in her hat (from a previous outing).  BIG brim to cover her eyes!

Organization for this cluttered mind!

I had a conversation with my dad yesterday; I explained to him that my life has changed in ways I never knew it could.  Obviously, having my second blessing in my life was bound to change our family and our lives in wonderful, amazing ways.  But, with Sadie's diagnosis, things have REALLY changed.  I now live in a world of surgery and doctor's appointments, plus looking at Pintrest ideas for visually impaired children as well as blogs and websites for children with glaucoma.  In order to make sense of the chaos, Joel found and bought a fantastic product, "My Doctor Book".  I finally got the finishing touches done last night, and I love it!!!  I will bring it to every future appointment for Sadie, including our visits to Gillette Children's for physical therapy.  

Inside it has space for business cards, insurance information, medicine info (doses, date taken, etc.), and procedural information.  I have added tabs for each surgery that Sadie has been through, so I can look back and refer to doctor's notes at any time.  I love this!

Post-op!

    Although I certainly don't enjoy going to post-op appointments on my own, I understand that Joel has taken his share of time off recently, so I journeyed to campus yet again to check in with Dr. G.  Sadie was SUPER fussy last night and this morning, and although it's to be expected post surgery, it makes the whole family a little irritable.  It's certainly not easy to hear her suffer during the 40 minute car ride; Tylenol just doesn't cut it after a Goniotomy.  
    As we arrived at the clinic, Sadie was (yet again) the youngest patient by at least 70 years.  The only good thing about that is we get a lot of sympathy from the elderly patients, similar to how a great grandparent would be.  This time around I talked to a very nice older couple who asked about Sadie's shield and patch; they were quite surprised to hear about bilateral cataracts in a baby.  
    After a blow-out diaper, using all the wipes I had, and coming unprepared with no extra outfit (Murphy's Law!), we were called back.  Sadie was unable to be soothed by bottle, pacifier, rocking, etc. so by the time the intern came in to take off her patch, I just asked that he do it QUICKLY.  She always cries so hard when the tape comes off, and it breaks my heart, but thank God she is easily soothed.  
    The right eye looks WONDERFUL!  We are jumping with joy, and I am holding on to hope that this surgery remains successful.  Her cornea is very clear, and there is little blood and bruising this time.  Dr. G was very happy to see the eye so clear as well.  We are back to our strict regimen of drops 4 times a day, shield on for a week, no contact in the right eye for three weeks, no rubbing, etc.  (By the way, trying to keep a STRONG WILLED 4 month old from rubbing her eyes is a FULL-TIME JOB, and it's exhausting.......)
    Next EUA (examination under anesthesia) is November 11th at 9am.  We pray for LOW glaucoma numbers and NO SURGERY NEEDED!  :)

September 23

Another one on the books! 

  We (Joel, Mom, and I - Dad was home to see Em off to school and be there when she came off the bus) arrived at University of Minnesota Amplatz Children's Hospital at 7:30am, after giving Sadie her 3am formula and 7am pedialite.  Check-in has been smooth, as we are familiar with the registration process by now.  We barely had time to sit in the waiting room before we were brought into room 5 for pre-op.  

Styling in her koala rocket ship surgical wear.

The nurses were exceptional, as always.  We went through the same routine: meet and talk to the anesthesiologist (had the same one as last surgery), the nurse anesthesiologist, nursing assistant, and see Dr. G.  The patient care coordinator was there as well, and we always go through the old song and dance: "Oh, you're here!  I'm happy to see you again but sad that you have to be back." 

Sadie really has been a trooper; we are constantly amazed that she rests before each procedure and is calm for the bulk of our waiting time.  She never gets upset when they are checking her blood pressure, putting on her ankle name bracelet, or attaching her oxygen monitor.  

Sleeping peacefully with Grandma Debbie.

Sades with GIGI, her giraffe.  

She was taken back to the OR at 9:15, and goodbyes are always hard.....they never get easier.  The tears flow quickly and hard, and then we take deep breaths and remind ourselves that we are doing the right thing.  

After a LONG 45 minutes, Dr. G's nurse called into the waiting room phone to let us know the plans: she was going ahead with a goniotomy on the right eye.  The glaucoma pressure in her left was at an 18 - best it's ever been!  We were very excited to know that the goniotomy on that eye has been successful thus far and doesn't need a shunt quite yet.  Then we were informed that the right eye (which only three weeks ago was at a 20) was now at a 40 and needed a procedure to lessen the pressures.  WHAT?!  But we've been so diligent about drops!  After I got off the phone, I cried with mixed emotions; I was thrilled to hear that the left was still doing so well (as Dr. G had assumed she was going to go ahead with a shunt in the left), but I was frustrated that with all of our hard work, the right pressure number still raised.  I'm also learning to trust my "mommy gut"; in the past two weeks, I've noticed some haziness in her right cornea, but loved ones around me tried to convince me that I was overreacting.  Low and behold, glaucoma was rearing it's ugly head again, and surgery was needed.  (If you would have told me last year that I would know so much about the human eye, I would've thought you were crazy!)

While in the waiting room, we met a wonderful family whose 10 month old was born with a unilateral cataract and was going through an EUA that morning to check for glaucoma.  She had a fabulous pair of pink glasses on, and I got to chat with her grandmother about the battles of contact lenses, drops, and the like.  How wonderful to not be alone in this battle!  We have now added sweet Gracie to our list of nightly prayers.  

Sadie was in the recovery room by 11:57, and we were called back shortly after.  It's never easy to see her with a flushed face, squirming in pain, and restless.  Yet she was an amazing trooper once again, and she never cried.....I wish I had her strength!

I fed her 2 ounces of pedialite, and after she polished that off, we gave her 4 ounces of formula.  She takes food SO well after anesthesia, unlike most of her family members.  :)  We waited around for the 2 hour window to pass, and blood pressure stats, oxygen levels, temperature, and heart rate was all healthy and strong. Dr. G checked on us, and I explained my frustrations with the glaucoma meds not "doing their job".  She said it was a tricky disease - is it ever!  It has a mind of it's own, and if all of the parts in Sadie's eyes are not working together to drain the fluid, the pressure numbers rise.  We were encouraged, however, to hear that there were no cracks in her cornea this time around, and the optical nerve looked good.  Thank God for small miracles!

After being discharged, we rested at home.  The night was hard, and her pain was high, but she's HOME.  God bless our fighter!

"ET phone home".  

International Talk Like a Pirate Day

This is what I posted on FB today:

It's INTERNATIONAL TALK LIKE A PIRATE DAY. Here's a pic of Sades from weeks ago. The cutest pirate I know!  Aargh!

Then I read a great article on L4E: Not a Pirate, Just a Kid.  Now I feel, well, horrible.  I am learning as I go, and in many ways this world is still incredibly unfamiliar to me.  It's becoming more "normal" every day, but it's still not right or fair.  And I strive to gain more knowledge of this world EVERY DAY.  So forgive me, social media, for not understanding that my child's diagnosis and disease is not something to joke about.  But please forgive me when I need to joke about it, when laughter is all that can make it better at the moment.  I am only human.  I am learning.

Contact lenses - not just for adults anymore!

Dr. W., Sadie's contact lens doctor, has officially trained us twice in getting the contact lenses in and out.  It's been, well, horrendous each time.  Our little gal screams her head off the second Dr. W. comes close to her, even though she's an amazing and sweet woman.  I tell her not to take it personally; I have a feeling she's been through that before!  :)

Every time Joel and I have attempted to take out the contacts, I have lost my cool - I curse God, curse my husband, curse myself.  I cry and start shaking from the sheer stress of it all.  WHY IS IT RIGHT AND FAIR AND OK FOR ME TO BE PUTTING CONTACT LENSES IN MY THREE MONTH OLD?!  Why is this happening to US?!  Why must Sadie go through such struggles at her little innocent age?!  I have not handled myself in the best way, and I'm ashamed of my reaction(s).  Yet, who knew that God had this in store for me when we were trying desperately to add to our family?  

All I can tell myself is that up in Heaven, there was this perfect little angel with one "minor" imperfection: her eyes needed help.  God heard mine and Joel's prayers for a second child, and knowing that we'd do anything for our babies, granted us this truly remarkable baby girl who was destined for greatness.  Along the way there would be some pitfalls, trials, and tribulations, but it would make us stronger in the long run.  

I keep repeating my mantra - some days it sticks, most days it's a challenge to remember the positives.  But temporarily, this is....well, the hardest thing Joel and I have ever faced.  Please, God, be with us and help us to see your plan.   

Contact Monster

Friday night at age 23: going out to the bar with friends, socializing for hours, coming home in the wee hours of the morning.  
Friday night at age 33: staying in, putting oldest daughter to bed at 7:30pm, then searching for youngest daughter's contact lens with the hubbie for 30 minutes.  
My, how my world has changed.  :)  (And yes, we found the lens.  No lost ones.....yet!)

Post-op.

Another appointment at the U, this time for post-op.  Saw this on the wall and wanted to share.

Sadie's left eye looks pretty rough.  Although Dr. G. was thrilled with the appearance of the eye post surgery, Joel and I are still taken aback by how red and bloody it is.  Dr. G. came in through the inside (near the nose) to the outside (near the ear).  Here's hoping this new procedure works!!!

Taken a couple days after surgery - giving her eye a break from the shield.  The left eye shows some blood pools.  

cry.....cry.....cry

Another failed attempt at getting out my almost 3 month old daughter's contacts. Dear Lord above, help me through this! 

July 29th surgery (glaucoma)

Sadie update: Surgery was performed yesterday morning on the left eye. After the examination under anesthesia, her surgeon came out and discussed that even though the right cornea looks clear from last Monday's procedure, the pressure is still high. We discussed whether it was worth a shot to go through with the left side, but considering eyes are independent of each other, we wanted to give the left eye a fighting chance. Drainage canal procedure went well; in recovery she seemed to be experiencing more pain than the previous times, which was hard. We came in to her recovery room to find her fussing a LOT and the nurses holding her and trying to get her calm.  Again we received the most amazing care from the staff at Amplatz, and we have become familiar to and with the nurses and caregivers. We are also lucky to have both sets of parents come as of late to help us with support, love, and be with Emma. 

 
 

  

Sadie was checked this morning for the post-op and the eye looks good. She has a new regimen of drops, and the shield moved to her left eye. We have an apt with a glaucoma doctor next week to check pressures and discuss future options, including a possible need to get shunts placed in both eyes. 

Although Sadie is still being incredibly strong (and we couldn't be more proud of our girl!), it's difficult to continue this journey with all of the uncertainty we face. Sadie has lost some weight, and she gets backed up from all of the meds from her surgeries. Administering the eye drops is not getting any easier, but we continue to be diligent about them to help our little girl in any way we can.

Thank you again for the prayers. God has a plan for our baby. Someday we will understand it!