Schuyler Ruth Johnson January 3- January 9, 2013

Schuyler Ruth Johnson January 3-9, 2013

Rough draft movie but I wanted to get it up so everyone could see.

Day One...We had a little bit of a difficult labor but we got Schuyler here. She was having issues with breathing and the NICU doctors found a heart condition that required surgery.

When Chloe saw this picture she asked if this was Schuyler in a fish tank. 

Look at all of her hair!  I have never had a baby with hair and it was kind of reddish.

I love this picture with her eyes open.

 Chloe drew this picture.  It was my favorite.  Chloe drew Schuyler on a stool because she cannot stand, she is too little.

 Chloe with her "biggest smile"

 Later we found out Schuyler has trisomy 13 Which is having an extra 13th chromosome in every cell.  One of the side affects is having an extra toe or fingers.  She had a big small toe on one foot and a Siamese twin toe on the other.  Most babies that have trisomy 13 don't make it to birth much less the six glorious days we got to spend with our special little girl.  She was so special and had so much love to share we are so glad we got to meet her. 

 Chloe was obsessed with her feet.  She said one day "Yeah, her toes are friends."  Another time she said " they are like twins because they are the same size."

 Every time Rex came in he would point to Schuyler's food iv and regular iv and would declare "Schuylers Juice, Schuylers milk."

 Peek

 When my mom showed up Chloe came up to her and said "Nanna we have some good news and some bad news, do you want to hear?"  My mom answered "sure"  Then Chloe continued "The good news is we got to go swimming today! And the bad news is Schuyler has to go back to heaven."

 Proud big brother and sister.

 The remaining pictures are from a photographer that volunteers to take pictures of terminal patients and their families.  She did such a good job.  We were so thankful that we got some really nice pictures.

This is the dress that we blessed Schuyler in.

 We are so glad we got to meet our little Schuyler she is so special and we are happy for every second we got.  We were able to meet her and snuggle and spend time with her.  We had time to figure out what was going on, we got pictures and blessed her.  The 9th of January she decided she was done and her little heart gave out.  She was amazing and her life was so full for the short time she was here.  We love her so much and we are so thankful she touched our lives so deeply.  After meeting such a powerful little spirit I know there is a higher power that created such a beautiful little person and that we will see her again.  We had her funeral January 12 in Tacoma Washington and we are burying her Tuesday the 15 at 3pm in the Provo Utah cemetery.  Thanks to everyone who has showed us support and love in many different ways.  We love you all.