Baby Penelope was just born in late October 2017. She was heaven-sent and the perfection of health at a full term birth. The youngest of three daughters, our New Mexico family felt utterly blessed. Penelope's 4 year old and 10th month old big sisters adored their new little angel.
At only 20 days old, suddenly and unexpectedly, Penelope started crying and screaming non-stop. She would no longer eat and started vomiting. At the same time, she would continuously arch her little back in agony. She would not sleep and her eyes remained constantly open and un-tracking.
We rushed her to the pediatrician, who made us rush her to the ER. The ER immediately placed an i.v. in her because she could not hold down any nutrients. The doctors immediately started running tests and transferred her to another hospital where she stayed for a week before she received an MRI that showed a massive amount of fluid surrounding the brain. She was once again transferred to another hospital, this time in the NICU. She would not stop crying and we could only watch as our little angel's head started visibily enlarging.
The neurologist did another MRI and decided that Penelope needed an immediate EBD shunt placed in her brain cavity to attempt to release the pressure on her brain. The poor New Mexico doctors were at a loss as to how to help and Penelope was flown to Denver Children's Hospital. We had no time to prepare or to explain to our family what was happening.
Unfortunately, the flight placed more pressure on her brain and Penelope had to undergo yet another EBD shunt. The doctors said that our poor baby was in so much pain that not only could she not eat but she stiffened her own body to the point of creating dangerous hernias in and around her neck and spine, which required even more surgery. On top of that, she is allergic to pain medication and is suffering through this only with the help of ativan. To add to her suffering, it wasn't long before the doctors then did more procedures so that her spinal/brain fluid could drain through a tube into her tummy, along with a feeding tube.
Our family is seperated and struggling. All we need is to be together so that can support eachother and our 3 month old Penelope. We pray that she can be a normal baby and we can be a normal family again.
We are like most New Mexican families and work hard to make ends meet. Our family of five initially all went up to Denver but we can no longer maintain. My husband is trying as hard as he can to support the family and our other two daughters while I am in Denver with our sweet little Penelope. Needless to say, it is extremely difficult trying to attempt to maintain a home, regular bills, medical bills, and keep food on the table. Frankly, at this point, we are in dire and immediate need. We need food vouchers from the hospital in order to eat, and of course that adds to the stress of this ordeal.
We pray everyday that God will allow our family to be together and healthy.
We humbly request support from our community so that our baby lives and family gets through this.
Thank you and God bless! We appreciate your kind attention and support through this unimaginable, heart-aching time .