Ivy was diagnosed with Hydrocephalus and a Meningocele on the back of her head at our 20 weeks ultrasound we were so scared and so worried I cried for days we didn’t know what that meant for our baby girl so they told us we’d be going to chop from there on out for appointments and for me to deliver when she was born I couldn’t wait to hear her cry and then to see her I waited a long nine months just to see her face we found out just a couple weeks after she was born that she was diagnosed with walker Warburg syndrome which is a recessive congenital muscular dystrophy I didn’t get to hold her for days as I had a cesarean section and she went directly to the nicu 2 days after she was born they placed a shunt to help drain the fluid then about 2 weeks later they removed the fluid filled sack on the back of her head and we were transferred to a floor that was preparing us for discharge and when we didn’t her car seat test she failed and noticed her numbers were dropping so then rain test and found out she wasn’t blowing out enough co2 and needed to be put on a bipap machine so they moved us to the picu for a could days but that turned out to only help for a little while so they decided to move us yet again and then they told us her best chance at survival would be to have a tracheotomy done she was taken into surgery and we spent a couple days in the nicu again so with a lot of tears and many talks with doctors we came to the decision to go ahead even though it’s gonna be a tough road we want her to be comfortable and to live as happy and as normal of a life as possible we have been in the pcu for about 3 weeks now doing trach training she’s will need nursing everyday of her life and need to have a portable vent with her at all times along with a suction machine and other things I can’t tell you how hard it’s been but I can tell you how much of a trooper she is she’s been such a fighter shes one of the strongest little girls I’ve ever met I’m only sharing our story because I know there’s other family’s out there who may be going through the same thing and I want them to know you aren’t alone please follow along on our journey with our precious baby girl 💛