Lainey Mae Perrin

This is Little Lainey Mae Perrin and she was born September 23, 2014 at 5lbs 3oz. She was born barely attached to my cord we were hanging on to eachother for life. The cord also was wrapped around her beck 4 times. She didn't breathe for the first 4.5 minutes of her life. They did 4 chest compressions and I heard a scream. I Realized that night something wasn't quite right with her. She was rushed to the nicu because she wouldn't eat and just screamed. She is now 4 months old and hasn't had a day go by that she doesn't just scream. It's a ear piercing scream till the point she starts choking. I noticed a few days after she was born that her eyes would go downward or inward. I continued to take her to her pediatrician and they would tell me she was colic. I tried everything gas drops, warm baths, warm pads on her belly, gripe water, pumping her legs etc for the colic. She is a exclusively breastfed baby. I knew it wasn't colic. Her forehead protrudes out and her eyes would never be able to focus. She screams non stop for hours on end. 9 at night till 4 in the morning with no break or relief. As soon as she wakes up non stoo. She will eat for 5 minutes then give up. Day after day it was just getting worse. I took her back and the pediatrician told us she has sunset eyes and he ordered an ultrasound of her brain. We went the next day to her ultrasound and the tech walked out and told us she would be back, she never came back in the dr came instead and told me she has hydrocephalus. I had no idea what this term was. He explained that she has fluid on her brain and told me I would be contacted for the next step. As a mom I sat there in complete shock, heart broken and numb. So a couple days goes by and I decide this isn't right noone has called me for the next step. Its not normal and I demand answers I took her to get an MRI that was scheduled without sedation and she wouldn't hold still and just screamed. There is no way this child in so much pain would sit through a MRI that takes on average 45 min. We then we're referred to Childrens hospital in oakland California and we had a consultation with the neurosurgeon and we were told at this time her hydrocephalus is moderate. 2 days later we are home and she just screamed and screamed. Nothing I do gives her relief. I called the on call neurosurgeon and was told to bring her in right away. We arrived at CHO childrens hospital of Oakland and were admitted were we stayed for 3 days for her to be watched and to have an MRI done with sedation. my husband and I sat there for 3 days and got no real answers, no help. Staying at the hospital made us have to put our home life on hold. our oldest daughter Arraya is having to live without her mom, dad and sissy for 2 days out of each week due to having to drive to Oakland for neurology appointments, and her physical therapy. 8 days out of each month my daughter has to live without her family and her needs be put on hold. My mother has to miss work to help raise her. Arraya has to go to school on days she isn't supposed to be there and it cost us 56 dollars each day, gas there and back is 180 per month, hotels on average are 60 each day for us to stay. Parking is 9 dollars a day. Her glasses are 190 dollars and not including other specials needs equipment she will need and not covered by her insurance. In the last visit to the hospital we spent over 200 dollars on expenses. I'm now told by her neurosurgeon that this will be at least 3 months of back in forth to Oakland from stockton 84 miles one way before she can get her shunt surgery done. Each visit and appointment is crucial to give Lainey Mae the quality of life she deserves. I want and need my babygirl out of pain. Her little 11lbs body is now having fits where she throws her head back and clinches her whole body on pain. She can barely hold her head up and when she does its for a short time. She gets tremors in her legs since birth and are now getting worse. She I am not one to ask for help as I am one that tries to give help for example I donate my breastmilk to help other sick babies and give them the quality of life they deserve. As I sit here and write this with tears filling my eyes I know my mom, my husband and I can not do this all on our own. We need the help. Thank you for contributing to Lainey Mae Perrin. God bless you and please send her prayers! ♡