Charlotte's story....

Where do I begin...

Charlotte came into this world 4 weeks early...at 36 weeks, when my water ruptured.  At 5 lbs 14 oz (18 in) she came into the world a fiesty little thing.  Little did I know right after delivery would be the first and last time I ever got to hear her sweet cry.  I was completely out of it due to my blood loss during my c-section.  All I remember is her getting taken to the NICU to get intubated...which took a couple tries.  
I finally got to meet my princess a couple hours later...she was so special and beautiful.

 The next morning things got sorted out and they came up with a diagnoses that Charlotte had CHARGE syndrome.  I had no idea what it was and really didn't want to think about...they didn't know for sure.  I thought how could that be since the amino was normal.  Since she has a heart defect, choanal atresia, and small ears...this is what they came up with.  I chose not to research about it on the internet, but to just enjoy my precious gift from God.

At 4 days she was transferred from Peoria to Children's Memorial in Chicago to have her choanal repaired.  Peoria didn't have a Peds ENT doctor....we couldn't believe that they didn't!  We put her in God's hand and would do whatever it took to get her healed and HOME!

At 10 days old she had her first heart surgery to repair her PDA.  Charlotte was a very SICK little baby before her repair.  She didn't tolerate her blood being acidotic.


At 6 weeks she got her heart repaired.  They really thought the outcome would be a single ventricle heart....but she got a two ventricle heart!  A NORMAL heart!  Her is a little off balance and has some leaks around the valves....but she got the full repair!

At 8.5 weeks old Charlotte got to meet her big brother Clayton.  What a day to have my two children in the same room together!  He loves his baby sister!  She loves him too....

At 10 weeks Charlotte had her choanal atresia repaired and got diganosed with CHARGE syndrome.  She had a rough recovery.  After this surgery she developed the plureal effusions.  At 14 weeks she had a thoracic duct ligation to stop the fluid buildup around her lungs.  It went away for 13 days.  Our hearts nearly broke in two when it came back.  After failing extabation due to fluid around her lungs...she got a trach at 4.5 months.  It was a blessing to see her face!!!!  She started smiling and sucking on passies.  We are grateful we got to spend so much time with her.  Enjoy every minute....enjoying the small things.  At 5 months she got her first tooth!  Charlotte had a rocky last month of her life...so many ups and downs.  I am  grateful I got to hold her when she went to be with Jesus on Jan 23rd 2012 at 5 months 9 days old.

Charlotte had never looked more beautiful.  Free of machines and medicine...she was finally at peace...which meant we were at peace also.  It was the hardest moment of my life...and probably will be forever.  I miss my sweet girl every second of every day.

I really feel like I didn't do Charlotte's story justice with this short recap.  I tried to make it a short "overview".  Her story is really embedded in this blog since we found out Charlotte had a heart defect.  And my words through this blog is something I will cherish forever...and I hope you do too.

Thanks for following along...I will continue to post about our lives as I use this as a scrapbook for my family.

Love to you all!