Friday, November 30, 2012

Goodbye Gastroschisis!

Today is a huge day for our family.

I know that most people who actually read this blog know me or my family personally, however there are a few who don't.  Sorry to be a bit redundant for those of you who have heard this all before.

When I started this blog it was a way for me to get my thoughts together, however silly they may be.  Since then it has grown into a documentation of our girl's lives.  A place where they can look back and remember how loved they are and all of our stumbles along the way.  I would be remiss to not add todays events here.

When the Mister, my sister, Rhiannon and I went in for my 20 month check up, excited to see what kind of baby we were going to have, we were instead told that our daughter had a very serious birth defect called Gastroschisis.    (If you want to learn more, click the link.)  It is a horrible terrible defect where the babies are born with their insides out.  It causes many problems with the pregnancy.  The children born with this are often hospitalized for months and endure many surgeries and life changing complications.  When Clara was born she was only 4 lbs.  She was so beautiful and SO tiny she didn't look like a real baby.

Right after Clara was born I was able to glimpse her from across the room before she was whisked away to be prepped for her first surgery, which took place a mere 2 hours after she was born.

I've always been very protective of her first pictures we took of her, as they are quite graphic.  Children who were born with this condition 20 years ago pretty much just died.  It is so amazing how far doctors have come when it comes to gastroschisis.  I'm actually writing this post now for the women in the support groups I joined that were my lifeline when we were in the thick of all of this.  

After our diagnosis, I immediately googled the condition, read all the horror stories, and wept my eyes out.  The pictures were horrific.  The outcomes were bleak.  There were babies that were dying left and right.  We met with our amazing doctor, Dr. Erin Rowell from Childrens Memorial Chicago, and I told them of all the horrible terrible things I had learned from Mr. Google.  I was very firmly told to STOP GOOGLING! Every case is different.  Stay positive and be the best you can for your baby.  If you are going through this now, please take heed from this advice. 

Clara's Gastroschisis

This is how Clara looked th first time I was allowed to touch her.

Clara had two surgeries and was in the NICU for 82 days.  This next picture is on Easter Sunday of 2010.  She had her second surgery the day before.  

She was in so much pain.  Everyone around me kept telling me how great she was doing.  All I could see was how bleak it looked through a mothers eyes.  

But you know what?  

They were right. 

(This picture was taken on April 2.  We went home on April 23.)

Today we went in for our yearly visit.  Clara is supposed to have these visits until she is 5 years old. 

However, today Clara was officially released from the care of the Pediatric Surgery Team.  

We are done.  

She is healed.  

I am so happy from the inside out.

If you are dealing with a pregnancy/child who has been diagnosed with Gastroschisis and would like to talk to someone who has gone through it as well, please don't hesitate to contact me whether it be through my email or comment section on here, or even Facebook.  I would be happy to give my personal insight to you.

Also, Congratulations Clara!  You are one tough cookie.  Love, Mom & Dad.


  1. Definitely cried! So so so so happy for your wonderful news and your beautiful trooper of a daughter! <3

  2. :) Thank you! Seriously been tearing up all day!

  3. I am wiping the tears from my face Crystal. I am so happy for you and Clara and your family! What a relief!!! I don't know if you are a believer but.. Praise God! Such wonderful news. Clara is so beautiful and will be a world changer!

  4. Hey Crystal, you don't know me and I don't know you. I am pregnant with a gastro baby. Id love to connect and chat! My name is Whitney D, and I sent you a message on FB :)