My first experience with my child needing surgery happened over the phone. Yes, you read that right. Over the phone. Exhausted and recovering from a cesarean section in one hospital while my son was in intensive care in another hospital across town. A couple days after he was born, in the fogginess of two hour sleep intervals for pumping, my phone rings around 8am. I pick it up, even though I didn’t recognize the number.
“Yes, this is she.”
“Hi, this is anesthesia calling to get consent for baby Edmunds.”
I was speechless. I look over to my husband who was fast asleep across the room from me. He had been studying for law school finals while running back and forth to attend to our son in one hospital and me in another. I stuttered to find the words to say. I was being asked to consent to put my 4lb 5oz son under anesthesia. I hadn’t really even met my son — he was born in respiratory failure with an imperforate anus and needed intubation and an immediate transfer to our local children’s hospital’s neonatal intensive care unit (NICU). My mind raced with thoughts like: What if he’s allergic to the anesthesia? What if he doesn’t come out of surgery?
Terrified doesn’t even begin to describe what I was feeling. But here I was, a parent for a few short days in an exorbitant amount of pain and responsible for a baby I’d met for about 30 seconds. At this point, I had never held my son or heard him cry. I had no idea what he felt like, what he sounded like, or even what he looked like. Yet, I was supposed to give permission to a complete stranger to administer drugs that would put Oscar to sleep for surgery — this mystery Oscar who I yearned to see, to touch, to hold— this mystery Oscar with a mystery diagnosis, my son.
Talk about being thrown into parenthood. Most parents’ first big decisions tend to run along the lines of whether they want to use a bottle or not or whether they’ll supplement with formula. My first experience as a parent was consenting to surgery, the first of quite a few that would take place in Oscar’s first year of life. The decision was clear — of course, I would consent. The alternative to surgery was quite grim. The medical interventions that Oscar would endure in the first few days of life were life-saving and absolutely necessary, but that doesn’t take away from how scary and difficult they were to endure.
You have been a mom for literally seconds and you’re being pulled to answer questions about paperwork, consent, pump rentals, medical insurance, having visitors, and being made to walk around the hospital to begin recovery. You’re hungry, but nauseous. You want visitors, but you also want to crawl into a corner and cry. You want to pump to bring on your milk supply, but you want to sleep for more than two hours at a time. You want people to support you, but you don’t want their pity, and, trust me, nothing anyone says will make you feel better. You want to hold your baby, but you can’t. You want to speak to him, but you don’t have the words to say. You feel like everyone is looking at you to all of a sudden know how to be a mom and make serious medical decisions, but you really have no clue as to what you are doing. At least, that’s how I felt.
It will never get easier to hand your child off to the next surgeon. In fact, I would argue that it gets harder. As your bond to your child grows exponentially over time and he or she gains their own personality, it’s harder to let go. It’s harder to watch them being whisked away on a stretcher into a room where you are not allowed. When they are first born, and you know that the procedures are life-saving, you’re in survival mode. There is no time to think, and before you know it, your child is in recovery and you’re on to the next thing — caring for a newborn who is recovering from surgery.
Watching an infant as the morphine drip wears off is a torture I wish upon absolutely no one, and I dread the next time we have to go through this. There is a heart surgery looming in our future, and I’m pretty sure the surgeon will have to pry my child out of my Kung Fu grip. I know it is necessary. I know not having the surgery could mean a worse prognosis. But, when I think about what happens in the operating room, and what it will be like for Oskie to recover, I can’t bear the thought of it. No child should ever have to endure this amount of pain.
Becoming a parent is an adjustment for anyone, and nothing can ever really prepare you for it. Becoming a parent to a child with serious medical issues which require immediate intervention is indescribably difficult. I wish I had some magic advice for parents staring down a long road of procedures and testing, but I can only offer what I know.
Chances are, you are never really “out of the woods”, for the rest of your lives. You just get more used to the procedures, tubes, medicines, and therapies. They become less shocking, and less scary as you gain more knowledge and information — the unknown is what is so dreadfully frightening. You will adjust, in time. You will gain strength you never knew you had, you will gain acceptance that others spend a lifetime trying to achieve. You will become an advocate, for your child and for all others like him or her. You will learn your limits, you will learn to make boundaries, you will become more sure of yourself than you’ve ever been. You will create teaching experiences for those who don’t know better, making the world a more accepting place, one awkward encounter at a time.
You will be tired, scared, and confused half of the time, but your heart will learn to love like it has never loved before, and for that we can be forever grateful.