It’s 6 a.m. The sun hasn’t even come up and the panic has already started. To those who don’t suffer from PTSD (post-traumatic stress disorder) or anxiety, these thoughts are impossible to understand.
I’m awakened by the sound of my 2-year-old daughter, Estella, dry-heaving and gagging. I jump up without even breathing first and sprint into her room. I sit her up. She is still dry-heaving. She vomits up mucous. The thoughts start.
Did she aspirate? Did I get into her room fast enough and sit her up quickly enough? If she aspirated, she will get pneumonia. We will end up at the hospital. It will be so hard for her to fight aspiration pneumonia.
I shouldn’t have let anyone with a cough into the house yesterday. They should have told me before coming in that they were coughing. A little cough for someone who doesn’t have special needs is one thing, but if my daughter catches something it could be life or death. It’s never just a cold.
Or what if this is the start of a stomach bug? God, seriously, then if the vomiting continues she will have a hard time keeping anything down. Which means, what if she can’t keep her medications down? If she throws up her seizure medication, she will be a seizure risk. She does have a g-tube. I could just give her her medication slowly through her port and hope for the best. I could keep her hydrated that way as well.
I get her out of bed and wipe her off with a washcloth. Within a few minutes, she is back to acting like her typical morning self. Thoughts of her having a stomach bug start subsiding. I get a bottle ready and start feeding her. She is sounding junky. She better not have aspirated earlier. God, why couldn’t I have gotten up faster?
While feeding her, her eyes roll back slightly. Oh my God, is she having a seizure?! OK, she looks normal now, but I better get her emergency medication (diastat) out just in case she does start seizing.
I start feeling nauseous, and my heart races from this panic. I think to myself that I’m going to give myself a heart attack. It’s only my daughter and me home, so if I have one, who will be able to help me? What if I die from it? Will my daughter know how much I love her?
I do the breath-holding exercises my doctor taught me and start to panic less. I entertain my daughter with blocks and then put her in her walker. She is low tone from hypotonic cerebral palsy. I wonder if she is in pain as everything she does and every move she makes takes a lot more energy. I seriously feel like I’m going to vomit watching her struggle. I tell my daughter how sorry I am that she has to go through this. She doesn’t hear me as I whispered it. The panic turns into anger. How could this have happened to her? My pregnancy wasn’t easy, but this lack of oxygen she experienced during birth wasn’t something any of us would have ever expected. How could I let this happen? Slowly those thoughts subside.
She falls asleep at night and her father puts her in her crib. I watch her on the video monitor. Is her chest going up and down? I make sure she’s breathing, which she is. Nights are fight-or-flight for me. I ask my daughter’s father if she will be OK. Whatever that means. I ask him if she is going to die. He says no and that she is a fighter. Why couldn’t I have protected her during her birth? Her traumatic arrival into the world should never have happened the way that it did. I know he thinks I’m crazy.
I text my friends. They make me laugh. They don’t think I’m crazy if I ask them if Estella is going to be OK. I just need to hear it in order to stop panicking. I check my daughter’s breathing in the monitor again. She still sounds junky. God, please don’t let her get sick.
Family members don’t know what to say sometimes. A lot of times they think I’m overreacting, but that means nothing to me when I feel like I can’t breathe. Why can’t they even put themselves in my shoes for one minute? Most people’s children do not have a 48-day NICU stay with half of that time having machines breathing for them.
I hope my daughter doesn’t remember when she’s older what a nervous wreck I have been.
I tell myself I’m in therapy and this will get better. I go on my PTSD group online and I feel less alone.
I pray tomorrow will be a better day.