Guest post by Sarah Rush Van Dermyden
Anyone who has lived through a neonatal intensive care experience would probably agree with me when I say “if you’ve heard one NICU experience, you’ve heard one NICU experience.”
I became a NICU mom on October 27, 2006. Our twin baby “b” was born with pneumonia in her small lungs, and was hooked up to a ventilator for 10 days. Additional days were needed on oxygen and a cpap machine with an entire stay of 19 days. In 2008, our son was born, and he experienced a similar complication although his stay was much shorter–only 7 days. Following our discharge, I discovered I was a part of club to which I never expected to belong.
Once home, I discovered that coming home from the hospital didn’t mean sunshine and unicorn kisses. After talking to other NICU moms, here are some things we all share in common.
1. You will feel cheated.
Let’s face it. You wanted those first precious days with your baby snuggled up in the new clothes and blankets you lovingly prepared and chose for your baby. You had dreams of being wheeled out of the hospital holding that precious bundle while you headed home. Instead, you spend every minute sitting next to a bed where you probably aren’t allowed to touch your baby. I missed their first feeding, their first bath, and their first diaper change. In the grand scheme of things, sure, it’s not much time, but those are things I can’t ever get back. I’m just going to come out and say it. It sucks.
2. You will feel guilt.
Oh the insidiousness of guilt, because in the case of NICU stays, it hits you twice. First, of course, is the guilt you feel about your pregnancy and baby. I could have eaten better, I could have prevented that c-section, I should have been less active, I should have been more active, maybe I was too depressed, or maybe I took too much tylenol…Moms are great at making themselves feel like junk, and NICU moms are the elite guilt mongers of the parenting world.
So, as if feeling guilty about yourself isn’t enough, you discover another form of guilt swirling around your mind–survivor’s guilt. For me, this didn’t happen during our NICU stay, it happened years later when I met a twin mom who lost her daughter, born at 35 weeks, to complications from pneumonia. My twin daughter, born at 35 weeks, who survived pneumonia was 6 years old at the time. Guilt. My baby survived and was thriving in first grade while this woman was burying her child. As I meet more moms, I meet more women who never got to bring their babies home. I think, “how dare I feel cheated? I had to wait 19 days to bring my baby home, at least my baby came home.”
3. Coming home from the hospital is only the beginning.
In our case, coming home from the hospital meant visits from Early Intervention and home health nurses. It meant we were obsessed about milestones. It meant writing down every feeding, every poop, every pee. It meant RSV shots and staying at home for 6 months. It meant me eventually leaving my job to keep up with therapies and appointments. It means you never stop reading, never stop learning, never stop wondering if you are finally free from the complications that come from a NICU complication. You learn that everything from vision problems to learning disabilities can stem from a NICU stay.
4. You have an amazing pain threshold.
Moms, you know you hurt when your child is hurting. We want to take away every cut, every bump, and every mean word ever directed to their child. When you’re a NICU mom, though, you’re helpless. I can’t even begin to describe to you the pain of watching your baby cry with an intubation tube in her mouth so no sound comes out, and you can’t scoop her up and hold her to your breast and comfort her. The pain of watching failed attempt after failed attempt of getting an IV or a PICC line into my son while I stood behind glass and watched. You survive it, and you come out of the experience feeling like a badass street thug. You just won the gold medal of parenting in a crisis, and from here on out, you feel like you can take on anything.
5. You will experience flashbacks.
For me, the smell of the soap in my pediatrician’s office is enough to send me back to those early days in the hospital. With social media being what it is, I also have discovered I can’t handle the picture of a sick baby. It seems a bit foolish that seeing a picture of a baby with a nasal cannula can cause an anxiety attack in a person, but the truth is, it does. I suppose you could call it PTSD in my case, but at any rate, the emotions can come rushing back at the drop of a hat. Our first NICU baby is entering 3rd grade, and I still have these reactions. I can’t help but feel a bit foolish if I’m being 100% honest here, but, well, it’s the truth.
6. You lose your innocence.
This may be my naivete speaking here, but I trusted my doctor. I honestly felt like because I planned and took care of myself, that absolutely nothing would go wrong. The truth is, things go wrong all the time, and there are no guarantees in the birth of a child. Sure, taking care of yourself helps. Good prenatal care, healthy lifestyle, and a stable relationship will only benefit you in the birth of child, but the truth is, it isn’t always enough. With the birth of my son, I discovered that lightning does strike twice. He was full term, but we decided for a repeat c-section 10 days prior to his due date. I was assured by my doctor that everything would be fine, but it wasn’t. The same year, a few months after he was born, a new study was released that optimally, we should have waited until he was at least 39 weeks. Those extra days may have prevented his NICU stay. Perhaps if I’d attempted a vaginal delivery after a c-section, I may have avoided it. Either way, I learned that it’s my job to educate myself and blindly listening to my doctor was no longer an option. Jaded? Probably. Smarter? Definitely.
Photo credit: Sandra Haydon