Monday, November 17, is World Prematurity Day. Throughout this entire week, to mark this special day, we will be publishing stories of and by NICU parents and families. Our first post comes from Lesley Donaldson Reid. She’s a nurse, author and mother of an amazing NICU graduate. She will also be at INSPIRE! Toronto International Book Fair on November 16th, so if you’re there, swing by and say hi. Learn more about Lesley and her wonderful book.
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Take heart, preemie parent, you are not alone. I know you don’t feel like a mom or dad when your baby is in the incubator. You go home and your baby stays in the box. The plastic uterus is a poor replacement for the real thing.
You are not alone, for you’ve joined a community of parents who are fiercely proud. We endure those horrible moments, we witness great pain, and we come back to the hospital the next day to do it all again.
My son, Torran, was born without fluid. After continuous bleeding since my 6th week of pregnancy, my water broke at 19 weeks gestation, creating a condition called oligohydramnios. I waited to see whether or not Torran would survive his birth.
Our 136 days in hospital were the most heartbreaking moments of our lives. Torran had several preemie complications, including IVH (bleeding in his brain), infection (sepsis), and holes in his heart (ASD,VSD, PDA). He struggled on a ventilator for 8 weeks. On his due date, he had brain surgery to correct hydrocephalus.
Life forced us to be patient when all we wanted to do was run home with our baby. We couldn’t remove his life support, even though we knew his life would be complicated. Torran is now a thriving six year old boy. He has a little laundry list of medical and developmental complications, but our lives are brighter because he’s alive.
I wrote Growing A Rainbow based upon our experience in the hospital. It’s a fundraising venture for the Canadian Premature Babies Foundation. The narrative of Torran’s start in life, through my eyes, raises awareness about the emotional trauma of prematurity. It is the coping tool all preemie parents need.
This is an excerpt of Growing a Rainbow, and a piece of my heart:
Torran exists between a fetal and an infant state. We’re told he can hear us. I assume that’s true if his ear bones developed properly and his brain has sound wiring. There’s certainly no way he comprehends language yet.
Babies have an acute sense of smell. We probably reek of hand rinse. He may think his parents are alcoholics.
I don’t know that he’s able to focus on my face properly because I’m always behind the plastic wall of the incubator, several inches away.
All I can do is hope that somehow he knows his parents are here, and that he’s loved so very much. It is so unfair that this innocent child will spend the first months of his life enduring harshness. I have to put him through it if he is to have a chance of survival, even though it hurts me to do so.
Everyone keeps telling us that our family is strong and inspiring. Then why do I feel like I’m losing the will to fight?
An aura of gloom possesses me. I can’t shake it, even though the weather outside is brilliant. Not a day passes without tears.
I’m not a person who indulges in self-pity. We don’t know how to repay everyone’s kindness, positivity and generosity. Feeling desolate seems like an offense to them, as if I’m rejecting their encouragement.
But, I can’t run away from this. There is a reason why I’m here for so long every day. It’s more than my internal drive to stay informed about Torran’s medical progression. I’m his advocate and the attestant to his plight.
I can’t be a “normal” mother no how much I yearn to hold Torran. Like the other families here, Bruce and I adapted to a new modality of family life for our emotional survival.
These clinicians and therapists know more about our babies functioning than we do. It seems that way. Well-trained, proficient strangers care for our children. They don’t kiss away the big boo-boos.
Lesley and Torran. He’s still a hero, though not 2 pounds any more!