Sweet, blissful ignorance…
I thought it would be easier now that I’m older. I was 18 and 20 when I had the first two – so young and so dumb. Looking back, it’s a miracle they survived. I was so unaware of what could go wrong! I just didn’t think about it. I just learned as I went and luckily, they were both super easy, super healthy babies. Flash forward a full decade, and I’m thinking I’ve totally got this. I’ve done this twice before. M is 12 and E is 10. They’ll be able to help me out, which will really make it easier this time. If I could do it at 20 and still manage going to college, it’ll be a breeze now that I’m 30 and a stay at home mom! It’ll be fun…(famous last words, right?)
Before she was even born, my little O made it clear that things would never be the same. Everything I thought I knew about motherhood went right out the window the day we were told she would be born with a major heart defect.
Let’s hear that one more time: Transposition of the Great Vessels, or TGA for short. Even the name is overwhelming. I am pretty sure the cardiologist was forced to repeat this news 10 times before I heard it. The world was on mute for those first moments. I could see her mouth moving, but there was literally no sound for me. It truly took a moment to hear what this doctor was telling me.
In order to survive, she would need to undergo a balloon atrial septostomy immediately after birth. This would create a hole in the atrial septum of her heart in order to allow oxygenated blood to reach her body. Then she would need open heart surgery – called an arterial switch – a few days later. They weren’t even sure if I would be able to hold her after delivery because she would have to be immediately transported from the delivery room at one hospital to the cardiac cath lab at the children’s hospital. OMFG…
We went into shock at that moment and we still haven’t fully recovered. The days following her birth are a blur. I’m not sure how we got through it. I have never known fear like the fear I felt on surgery day. For 2 days afterward, her chest was a huge, gaping hole and you could literally sit and watch her heart beating. Indescribable.
We lived in the NICU for a month (33 days to be exact) while she recovered. That period of time was traumatic for everyone and it still feels like some distant nightmare. Like it never really happened. We got through it with the help of amazing family and friends and she is totally healthy today, thank goodness.
Going home, I was a nervous wreck. She still had a huge chest wound that had extended our NICU stay because it somehow got infected with staph! We couldn’t hold her like a normal baby. We had to be gentle and she could not lay on her tummy at all. She wasn’t eating well yet. I was terrified of bringing this tiny, fragile little angel home. What if I don’t know what to do?
That month in the NICU had left me feeling powerless. Powerless as her mother unable to control what was happening to her, unable to take away the pain, unable to hold her and comfort her. I also felt powerless as a human being as I realized that sometimes really bad stuff happens and there is nothing you can do about it. I really struggled with this. I felt panicky, hyper vigilant, out of control…and completely powerless.
It didn’t take long for O to put everyone in their place! The fragile little heart baby from the NICU transformed into what we lovingly call Hurricane O…
She’s intense, demanding and stubborn as hell. Her voice is loud and she has a lot to say. She has no patience for incompetence. I am constantly being cussed at in baby babble. She never sleeps. Ever. She’s 6 months old and it was the best day ever when she slept for 4 hours straight one night. A normal nap is around 10 minutes. She wakes up refreshed and full of energy, ready to attack. I am O, hear me roar!
You know what though? I LOVE her craziness! I love her intensity and stubbornness, and how loud she is. She has been a fighter from the start and is a force to be reckoned with.
She is FIERCE.
This journey has challenged me in ways I never imagined. I’m exhausted. I also cherish every minute of it and I feel honored to be her mother.
This is O’s world now and we are just living in it.
What was the biggest lesson you learned this year? I’d love to hear yours!
**This was previously published back in August, but as 2014 comes to an end, I’m reposting it. I think this was my most important lesson of this year. **
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