Nobody ever thinks to worry about the spending cap on their medical insurance - but when the first 2 days of life totals over $30,000 - you know you’re in some serious trouble. You look down the road at a LIFETIME of medical issues and that million dollar cap is looming. Every preemie has underdeveloped lungs, very little body fat, sensitive eyes, non-functioning bowels, low kidney function, etc. Our neonatologist was most concerned with the Grade IV brain bleed Daisy had suffered at birth.
The dates and terms have long since been deleted from my memory banks, but I’ll do my best to recollect these memories that I’ve chosen to forget.
Within days of her birth, a team of neurosurgeons from Children’s Hospital came with a treatment plan for us. They started with a ventriculostomy, a neorosurgical procedure that involves creating a hole within a cerebral ventricle for drainage, so our child had a tube inserted into her inner brain to release the pressure and blood. We couldn’t pick her up, we could barely touch her, and her bed had to be at a certain position at all times. We were told it may resolve in a week. Yeah well that didn’t happen.
Once they removed the vent tube, it was discovered that she’d developed a disorder called hydrocephalus, a condition in which fluid accumulates in the brain, typically in young children, enlarging the head and sometimes causing brain damage. So, plans were quickly set in motion for us to be transferred to Children’s Hospital for placement of a VP shunt. A ventriculoperitoneal shunt is a surgical procedure that places a thin, flexible tube into the brain and subcutaneously follows a route behind the ear, along the front of the chest bone and into the abdomen, allowing excess brain fluid to drain into the abdominal cavity, where the body can absorb it. A tiny pump is fixed in the skull to remove fluid when the pressure in the skull increases.
More than you wanted to know? Yeah me too.
I quickly noticed that we were the only ones in the 4th preemie room at the NICU with a baby with this issue. Our team of surgeons (like 1-2 department heads and 10+ residents) would march in and out and our room, including all parents, would need to clear out of the room. Since most of these meetings would occur while Dave was at work, I would be there alone, standing at the end of the hallway, hoping they’d come out and tell me what was going on. All of the other parents would stand away from me, giving me looks of sadness and I was feeling very alone. They didn’t know what to say. Eventually, the surgeon would come and chat with me about next steps and how everything was going to be ok. It didn’t look ok, so I started to investigate.
Our first day there, we were told about a preemie handbook we could purchase off the internet. So I ordered it (because who wouldn’t?) Within days I was reading about everything the nurses and doctors were talking about, including brain issues. So the next time the neuros came marching through, I asked him “what grade is the blockage?” He was surprised and immediately asked “how did you find out about that?” “I read it in my book ...” “Well, we don’t really like to give those specifics to the parents, but Daisy has a Grade IV blockage. Irreversible.” Score! They knew better than to hide details from me, and now I knew how to deal with it. Ok, next step!
My nerves subside when I know what’s next - so knowing what the shunt was and it’s intended purpose I knew what to expect and what I can do to prepare. The next day, Daisy was transferred by ambulance with my favorite nurse to Childrens, a place not far from the UW, but somewhere I’d never had to visit before. I followed her directions and met them at the door. She was scheduled first on their schedule the following morning.
They tell you things that could go wrong, but who ever assumes that means YOU?
When you’re helpless in a situation, you take charge in any way you can. My way was to sit on the floor as close to the outside of the operating room door as they’d let me. It certainly didn’t help anyone, but I just wanted to be as close to Daisy as I could get. Since then, I’ve always been allowed a little extra early into recovery. It’s always been important to me to be there before she wakes up, for me to be the first face she sees and to hear my voice telling her it’s okay, even when she didn’t understand what I was saying. So there I sat, twice in the span of 24 hours.
I was once told that putting in a VP shunt in a preemie was trying to feed a fishing line down the inside skin of a very small orange. And remember that phrase about things going wrong? When Daisy woke up the next morning and opened one eye.
Doctor: “She is having trouble waking up, she’ll probably open it later.”
Me: “Um, I don’t think so.”
So she went back into surgery to move the shunt off her 3rd cranial nerve, which unfortunately did not improve the permanent palsy now present, and which would become a problem we will chase for years with surgeries, patching and multiple eye surgeons and doctors.
Since birth, I think we’re up to 7 shunt surgeries, a few replacements, some blockages, all emergencies. When we would experience symptoms of shunt malfunction, our pediatrician would call Children’s ER, and they would be waiting for us when we pulled up. Straight into the CT and a shunt series of X-rays. And usually straight into surgery. And straight into my hallway floor waiting space and 2-3 days of only a few hours sleep.
My biggest tip to getting what you need when your kid is in an emergency room ... stand in the doorway. The staff doesn’t seem to like you watching them. They’d ask if I needed something “yep, just waiting for the CT results” “yep, just waiting for the IV team” “yep, just waiting for someone to come and save my kid!”
Daisy did experience brain damage, but it hasn’t dulled her firery personality one bit! She fights me on everything, including talking about all of this, so it’s a darn good thing I’m in Eastern Washington today going through college orientation with my youngest. =)
