August 2013: Joshua
Becoming a parent of a preemie transformed who I am at my core. Seemingly everything was taken out of my control; my impossibly tiny child was surgically removed from me 14 weeks early. It was the first time I heard the term, “micro-preemie.” Joshua was born into this world in critical condition and remained so for months. Nothing in my motherhood bag of tricks could ever prepare me for this terrifying journey we were embarking upon.
I was finally able to see my Joshie 2 days after he was born. Every single part of Joshua was underdeveloped and fragile. At first sight, my instinct was to wrap him in my arms and protect him and yet, caressing or touching him gently would have physically hurt him. It would be 6 days before he felt the love and warmth of being held skin to skin with his mother.
When the doctors met with David & I about Joshua, we were told there was the potential for bleeding in the brain (which Joshua did develop), a hole in his heart, respiratory distress and failure, life support, being deaf and/or blind, cerebral palsy, developmental delays, autism, seizures, severe developmental delays, spending his life in a wheel chair, being ventilator dependent, with severe cerebral palsy…should he survive.
Throughout our journey, I was so proud that my son continued to fight. Joshua was fighting a battle that I couldn’t fight for him. He was fighting and I needed to be his cheerleader. I needed to advocate for him, pray for him, and support him. I needed to pump, needed to be strong, and needed, above all, to believe that he was going to come home.
Joshua spent 129 days in the NICU. During his hospital stay he was diagnosed with metabolic acidosis, respiratory distress, Patent Ductus Arteriosus, anemia, IVH grade IV & III (brain bleed), premature atrial contractions, abnormal newborn screen, apnea of prematurity, at risk for retinopathy of prematurity (ROP), hyperbilirubinemia, umbilical hernia and he had a gastrostomy tube PEG placement surgery.
Joshua is now home with his family, yet the intense need for us to do everything we can to advocate for and support our son has not wavered. Joshua’s success and development is all based now on preventative care. In collaboration with UCP and Joshua’s wonderful Child Development Specialist, Maria Montano, we feel that we are on the right track in providing our son with the best care possible. On a weekly basis, Maria provides therapy, reasurrance and positivity…all things both Joshua and I need, and because Joshua is assessed on a weekly basis, any areas of concern are brought to light and any changes noted in Joshua’s development are addressed expeditiously. Due to the amazing support system of Joshua’s family and dedicated specialists like Maria, we are finding success in helping Joshua reach his potential.
Our ship is definitely on a different course than what we ever imagined, but it has allowed us to see the world in a whole new light. I’m extremely proud of the way we have sailed our ship thus far. Most of all, I’m most proud of our Joshua. He held on tight enough even through the worst of the storm until we found our way.
To follow Joshua’s journey from his early start to his current progress, please click on this link: http://www.joshuadrake.info/
Story & experience written by Jenny Reyes (Joshua’s proud momma)