For Prematurity Awareness Month and beyond, we are continuing our series Prematurity Voices, where we give parents of preemies a place to share their story in their own words. This is Jenny’s story – and Joshua’s – about what parents have to do and what they can’t do for their preemies.
On May 31, during a routine exam, my nurse practitioner had difficulty finding Joshua’s heartbeat. I was rushed via ambulance to the nearest hospital where a crash C-section was performed, and my son was surgically removed from me 14 weeks early. At 26 weeks gestation, Joshua Drake came into the world.
Becoming a parent of a preemie transformed who I am at my core. Seemingly everything was taken out of my control and it was hard to comprehend that my baby was no longer in the safety of my womb. 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 5 days before he felt the love and warmth of being held skin to skin. When I was finally able to kangaroo him, I was completely overwhelmed with an intense love and paralyzing fear for my 2 lbs., 10 oz, cub. Suddenly, this world seemed much too big for such a fragile little guy. What would become of him?
Joshie did surprisingly well his first two days of life. On day three, we were told that Joshua’s little brain hemorrhaged. The first MRI showed a grade II bleed on the left side of his brain and by the end of the week, had turned into a bilateral grade III/IV IVH brain bleed. When the doctors met with us about Joshua, we were given the worst case scenario, should he survive. The lists of complications were endless, it seemed.
It was then that I knew that 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 let him know every day that I was proud of him. I needed to pump, needed to stay healthy and, above all, I needed 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, Retinopathy of Prematurity stage 1, hyperbilirubinemia, umbilical hernia and he had a gastrostomy tube PEG placement surgery.
Looking back, I’m not sure how David & I got through it all. We heard things like, “I could never do that.” “You’re so strong…I don’t know how you do it.” But I think the truth lies somewhere in between. We all cope differently. But, when it’s all said and done, our strength shines bright when we’re really just doing the best we can with what we’ve been given.
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.
To date, Joshua receives physical therapy twice a week and an early developmental specialist comes to our home to work with Joshie once a week. Along with the therapists, daddy & I make sure to work with Joshua every day. Even our 2-year-old son, DJ plays a big part in helping with Joshie’s development.
It is definitely a team effort. Joshie is assessed on a weekly basis and 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 our dedicated specialists, we feel that this will help Joshua reach his potential.
Our Team Joshie 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 traveled together 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 home. As a mother, I have been forever changed. Our micro-preemie has given us more blessings than I can count and the lessons we’ve learned from him are ones that we hold dear to our hearts. Go, Team Joshie!