Madilyn's beginning

Madilyn Rose is my special needs granddaughter that I am raising.  This blog will be about our day to day life, the struggles, joys, accomplishments, frustrations and overwhelming love that comes with raising a special needs child.

Madilyn's life began at Froedtert Hospital in Milwaukee, WI at 4:30 am on Thursday Oct. 6, 2011 via emergency c-section after her mother's umbilical cord collapsed.  She came out breathing on her own at One Pound 5.5 ounces and 12 3/4 inches long.  She proceeded to spend the next 2 1/2 months in the NICU/NPCU at Children's Hospital of Milwaukee before she was able to come home.  Madilyn has multiple health issues starting with a Dandy Walker Malformation (part of her brain did not develop) that she was diagnosed with while her mom(my daughter) was still pregnant with her.  While in the NICU she suffered from retinopathy of prematurity (ROP) which ended up leaving her blind in her left eye and with visual problems in her right eye.  She had hydrocephalus (water on the brain) to which she has a VP shunt on the right side of her brain.  She has an infant feeding disorder so she gets the majority of her nutrition through a g-tube in her abdomen.  She had been diagnosed as failure to thrive and has an X-chromosomal abnormality with a Turners Syndrome Variant.  They've never see the x-chromosome lines that Madilyn has before so they are tracking her for research so they can learn from her and maybe someday it'll help another child.

first time I got to hold her in my arms!!

proud grandpa!!!

this is a normal size newborn carseat...she's sooo small...

Madilyn finally came home on December 23, 2011 weighing 5lbs 3 ounces...
She was hospitalized in March 2012 for 5 days for failure to thrive and did all right for a few months after that and finally came to live with me (grandma) in September 2012.  She weighed 9lbs 5 ounces then.  Madilyn's parents both love her dearly but they are young and being with grandma is the best place for her at this point in time.