Monday, October 24, 2011

Still on the Yellow Brick Road...

Tomorrow, October 25th 2011, at 10:13 am....My baby girl will be 4 years old.  While my heart is filled with an infanite amount of love and pride....I will forever be scarred from the pain I felt on that chilly October day in 2007, and it has nothing to do with childbirth.

Sara Evans, "I could not ask for more" was playing on the doctors OR playlist...I was numb from the waist down, all I could feel was tugging and alot of pressure as I gave birth via C-section to a beautiful baby girl, weighing in at 7 lbs 15 oz.  As I stared into the mirror above my head, my husband saying "We did it baby" rang in my ears but didn't register in my mind until someone said "its a girl!".  I couldn't believe it...I didn't know how much I wanted a little girl until those words were spoken.  And in that very instant my family was complete.  In that moment, I had found all I'd waited for...I didn't need to ask for more. 

But the irony in the song playing that day had not been realized yet...

"These are the moments
I know heaven must exist
These are the moments
I know all I need is this
I've found all I've waited for
And I could not ask for more"

Nothing would prepare me for what happened only seconds later...
My daughter, wrapped so snugly in a hospital blanket, was handed to my husband and brought over to me to meet for the first time.  I lay there, physically paralyzed in the delivery room...but my heart was beating out of my chest, I tried to cry but my lungs didn't feel like they were working, it was hard for me to breath deeply.  She was beautiful...and my heart was overflowing with love and joy, yet the moment she opened her eyes it shattered all over the operating room floor.  God had given us this amazing gift, our daughter...the baby we had dreamed about for 9 months.  That should have been the happy ending...but instead it was the beginning of a never ending nightmare.  Our precious baby girl, just seconds old, was already being challenged to a life of uncertainty and hardship....she was blind.

As the shards of my shattered heart were still settling on the floor, it was business as usual for the doctors and nurses.  They went to work putting the rest of my body back together, while they unknowingly had turned me into the Tin Man from the wizard of OZ...(there is irony in that statement as well).  I was about to become a poorly oiled machine, without a heart.  Or maybe I was the Lion....where my courage would be tested and the faith I had in myself would be questioned.  We were about to begin our journey down the yellow brick road to find the Wizard....the one and only person who could open the door for us and change my daughters world of black and white into a world of beautiful colors. (insert scene of Dorothy entering the land of Oz here).

Dr. Zaidman is our Wizard...he is the man behind the curtain. 

I DID need to ask for more...I needed to ask God to give us a miracle...Give Emily her ruby red slippers and allow her to see.  Forego giving the scarecrow his brain, and give Emily new eyes instead. 

4 years later, we found Oz and our wizard...but we still are and will always be on the Yellow Brick Road, waiting for the ugly flying monkeys (Cornea rejection and Glaucoma) to swoop down and take back what Emily has fought so hard for.

Holding My Breath

Its' been 7 months since I posted last, and I feel like I've been holding my breath for that long.  Emily's surgery to remove the scarring on her left eye was sucessful, but the healing process has not gone as expected.  Dr. Zaidman removed about 70% of the scar (calcium) and had to leave the remainder as to not do further damage to her cornea.  Her "band aid" contact fell out within 3 days of the surgery, and since then we've relied on Lacri-lube, a strong ointment commonly used for dry eye, as a protectant and to aid in the healing.  We still use the ointment at bedtime, and her eye still is not healed.  Our doctor was concerned up until about 2 months ago, but at that time said that the healing had been progressing because endothealials had begun being replaced.

When is this going to get better?

When am I going to be able to breathe easier?

I feel like I'm turning blue from lack of oxygen....

Tuesday, May 24, 2011

Slow Healing

May 23, 2011

Its been two and a half months since Emily's surgery to remove the calcium buildup on her left eye and it is still not completely healed.  It took all of 3 days for the "bandaid" contact lens to pop out and that meant the risk of infection increased and new medicine needed to be used.  At first we tried Tobrex, an antibiotic ointment, but within a week it didn't appear to help heal her eye much and she started showing signs of dry eye again, which is what caused the scar in the first place (after she scratched her eye in January of 2010).  Here we are 16 months later and still dealing with the same scenario...frustrating does not even begin to explain it.

So Dr. Zaidman switched her off of the Tobrex and asked us to use an over the counter ointment called Lacri-Lube.  It's made by Refresh and contains 40% more mineral oil than other dry eye ointments.  Its the lubrication and moistness of her eye that allows it to heal so the additional mineral oil content makes all the difference.

Why can't this healing process just work faster for her???  It's breaking my heart.

Wednesday, March 2, 2011

Posting from the hospital...

I am attempting to write this post from the recovery room at the hospital. I think I have a WiFi connection.

Pillows of Hope has been a success!!! Today we brought 70 pillow pets to the Childrens hospital and the response was wonderful! 50 went upstairs to the kids who have been admitted and staying here while they fight their illnesses and recover from surgeries. The other 20 we brought with us into the surgical unit and passed a few of them out to kids who were having surgery today. Emily gave out the first one, a puppy, to a 4 week old little boy who was having hernia surgery. While he might not be old enough to fully appreciate what we were doing, his mom and dad were comforted buy our gift and our experience with Emily's previous surgeries. It was so nice to be able to help someone who had never experienced what we have come to feel is our normal...a day in the surgical wing with your child.

Emily went into surgery today at about 2:30, Jason went in with her to the OR. She is old enough now to understand what being here at the hospital means and when she was brought into the OR she covered her mouth...she knew the anesthesia mask was coming. "I don't want anything on my mouth" she said. I'm glad Jason was there, that would have broken my heart. This was Surgery #19 for our sweet little girl. She's a pro at this, but that doesn't mean its fun or not scary.

While she was in surgery we gave another pillow pet to a little boy and his face lit up like a christmas tree! His mom was in tears and I tried to comfort her telling her a little about Emily. This was her sons first surgery and she was scared. I'm not sure what he was here for, but I hope I was able to give him and his parents a little comfort and Hope that everything was going to be ok.

Emmy is now in recovery sleeping off the anesthesia, lying on daddy's lap. Dr. Zaidman said it was difficult but he was able to remove about 70% of the calcium scar. I haven't been able to see what her eye looks like yet,but she is wearing a "bandaid contact lens" while it heals. In other good news, her corneas look great and her eye pressure is normal! We are hoping for a complication free recovery which would mean the calcium doesn't come back and this procedure doesn't trigger any problems with her cornea.

Thank you to everyone who has kept Emily in their thoughts today and who have so generously helped us make Pillows of Hope a success!

More updates and pictures will be posted soon!

Thursday, February 24, 2011

Update on Pillows of Hope

I am so overwhelmed by the response we've received about Pillows of Hope! I was brought to tears when I started receiving coupons, pillows and donations in the mail.  I never thought I'd have such a great response!  So far we have received more than 20 pillows (only 15 are in the picture below) and with the coupons I've gotten, we plan on buying a whole lot more! 


Thank you to everyone who has been so kind and generous! The kids at the hospital are going to LOVE these! We have 1 WEEK LEFT before Emily's surgery, so I will be using all those great coupons to purchase as many as we can very soon!  If you would like to donate a pillow, there is still time! And even if you can't get it to me before March 2nd, its ok.  Emily will be going back to the hospital often, so we can always bring your pillow at another time.  What's most important is that these adorable pillows bring a smile and hope to some very sick children.  Please continue to help us! 

Thank you again!

Sunday, February 6, 2011

Renewed Inspiration - Pillows of Hope

Often we get so wrapped up in our daily lives that it takes something simple yet profound to remind us of things that really matter in life.  That is exactly what happened to me this morning. 

Just last week, we were blessed by the kindness and generosity of The Knights of Columbus in Kinnelon, the town Jason and I grew up in.  For the second time in a year they hosted a pancake breakfast fundraiser for Emily.  It took us by surprise because we had no idea they were planning it until a week before hand when a sign was posted in front of the town hall with the information.  The amount of love and support for Emily from friends, family and strangers alike has been extremely heartwarming and we are once again overwhelmed by it all.

For a very long time, I have been trying to find a way to "give back" and "pay it forward" but just haven't found something that would truly feel rewarding to us...until now.

While browsing through my facebook page this morning I stumbled upon a story that was posted by a friend in Indiana about a 7 year old boy with stage 4 Alveolar Rhabdomyosarcoma, a very aggressive cancer.  He was diagnosed on Oct. 13th 2010.  And at the beginning of his treatment, Jake faced 54 weeks of chemo, radiation and surgery.  His prognosis is not good but he is a very strong, brave and selfless little boy.  Inspired by the dinosaur pillow pet he was given as a gift, Jake is trying to collect 1,000 pillow pets for all of the sick children at his hospital.  Why pillow pets?  In the words of his mom "Because they don’t feel like playing games or doing the artwork all the time since the chemo makes them very sick. The doctors are telling the kids scary things every day, and there are lots of shots to endure.”  Jake knows what sick children really need...a soft friend to help comfort them when they are scared and not feeling well.


You can read about Jake's journey below:


http://www.caringbridge.org/visit/jacobmcconahay.

I cried when I read about his story and immediately I knew what I needed to do. 

When Emily was just 5 weeks old, we brought her to the Maria Fareri Childrens Hospital for the first time.  The building looked so comforting and we had a sense of peace as we walked from the parking lot, hoping that our answers and a good prognosis for Emily's eyesight were waiting for us inside.  But as we approached the entrance, a young girl with a bandanna wrapped around her head was being wheeled out to her car in a wheelchair.  She was weak and we watched as her father picked her up and put her in the car.  She undoubtedly had cancer of some kind and at that moment my heart sank and tears welled up in my eyes. 

Inspired by Jake's story and that sweet little girl in the wheelchair, we have decided to also start a collection of pillow pets to donate to the sick children at the Maria Fareri Childrens Hospital. Emily has endured countless surgeries at this hospital and is scheduled for another one on March 2nd.  We are hoping that we can collect as many pillow pets as we can by then so that we can bring them with us that day. And she will be bringing along her own dolphin pillow pet she also received as a gift!


We know that Bed Bath and Beyond sell these adorable Pillow Pets and are hoping to collect as many of their 20% off coupons as we can from friends and family to use to purchase them with.  If you have any coupons you would like to pass on to us we would appreciate it so much!  Or if you would like to purchase a pillow pet to donate yourself that would be just as wonderful! 

Bed Bath and Beyond Coupons or Pillow Pet donations can be sent to us at the following address:

Pillows of Hope
c/o Emily Bott
13 Mott Drive
Vernon, NJ 07462

We are so excited about this and cannot wait to finally be able to pass on some of the kindness and happiness that has been given to us. Our goal is to make each child smile, give them some HOPE to hold on to and a little extra strength to fight against their illness. 

Please help us pay it forward!


Emily, you are our inspiration of HOPE!