Perfectly Imperfect

It has been quite a while since I’ve had time to sit and write, and boy have I missed it! Even though it’s been weeks since I’ve written, my mind hasn’t stopped thinking about what is best to share next.

For months before Claire was born, it seemed like everything surrounding her and my pregnancy was so closely monitored. We had to make sure we kept tabs on her because no one really knew what to expect with her growth and development since we had refused any genetic testing at that point due to the potential risks while our baby was still in utero.

Once she was born, the hype and chaos with doctors only heightened. Life in the NICU is such a roller coaster of emotions. And, for me, the stress of the unknown was always hanging over me like some dark cloud that kept following me around. I remember having a pit in my stomach most days as I drove to the hospital wondering how Claire had done the night before. What would I be walking into? What problems came up? What issues were resolved? And that same pit would return as I drove away — half of my heart left at the hospital while the other half waited at home to see mommy after a long day.

Anyone who has experienced life in the NICU, no matter how brief or how long of a stay, will tell you it’s one of the most bittersweet experiences. It’s sweet because you know your baby is in good care. It’s sweet because (selfishly) you don’t have to cook and you can eat french toast every day and no one judges you (ok, maybe I’m the only one who ate french toast every day, but I’m not ashamed to admit it)! It’s sweet because beautiful new people and relationships are brought into your life that never would have been otherwise.

There’s also a side to life in the NICU that’s very bitter. It’s bitter because for every one step forward there seem to be two steps back. It’s bitter because your tiny little baby is struggling and nothing you do or say can make it better. What was particularly bitter for me during this very early part of life with Claire was how much of a medical enigma she was. She struggled in so many areas; maintaining her temperature, apnea of prematurity where she would randomly stop breathing and turn blue, and she was sooooooo slow to gain weight.

With this whirlwind and roller coaster of highs and lows, the five weeks we spent in the NICU were exhausting physically, mentally, and emotionally. Reflecting back, a lot is a blur. I remember the social worker at the hospital recommended journaling. I thought to myself, “Hell no. This sucks. I don’t want to remember any of this!” But instead I smiled, took the notebook, and left it sitting on the table for five weeks…unopened.

Luckily, I do have several very vivid memories from our 35 days in the NICU because they left a lasting impression on my heart. There were days when I felt like our room had a revolving door and specialist after specialist would come and look at my daughter, trying to pinpoint what was “wrong”. I would feel so frustrated and so defeated as each one would come in. They’d check her eyes, her ears, her nose, take a heel prick for blood work, do a brain MRI, do a bone survey…I literally felt like I had met every local doctor and still no one could pinpoint what was going on. I think this is when my heart started getting hardened towards some doctors. I knew it was part of their job to come and look at her, but so much of it seemed incredibly impersonal. Find the missing piece, solve the puzzle was the mentality several had. There were times where I felt certain doctors cared more about their ego and their need to put a name to what she had than about who she was. 

We had a lot of visitors when we were at the hospital, but one visit in particular had a profound impact on me.  If you’ve been following Claire’s story, you’ll remember the post that recounted a brief yet beautiful rendezvous I had with my grade school BFF a few months before Claire was born.

I had promised my friend that we would stay in touch and I would keep her updated on how our baby was doing. I messaged her not too long after Claire was born to give her the usual details: birthday, weight, height, gender, name. Well, as it turned out, she lived literally five minutes away from the hospital and maybe a week or two after Claire was born, she came up to visit. When she visited, Claire had already been seen by a multitude of doctors, and my head was spinning with all of the “We’ll just have to wait and see,” comments we kept receiving.

Our baby girl was so tiny. When we held her, her itty bitty toes would be at my elbow and her head could rest in the palm of my hand. It’s almost unfathomable now. Although my friend later admitted to being a bit intimidated by how small and seemingly fragile Claire was, she came to visit and was hardly done scrubbing her hands in the hospital room sink before she scooped Claire into her arms and snuggled her in close.

“Oh!” she exclaimed, “she’s so perfect!”

And that simple expression, said with so much excitement and love, stopped me dead in my tracks. It completely changed my perspective on this challenging circumstance we had been dealt. That was the first time, in over five months, that anyone had used the adjective “perfect” to describe my baby. And it was the first time I started looking at her that way, too.