I looked at the small white flower in my hand with tears streaming down my
We walked away from our 18-week ultrasound appointment with stunning new knowledge. The daughter we’d been waiting years for would be born with a cleft lip and palate. The doctors were unsure as to the extent of the cleft, whether it would be unilateral or bilateral, whether it was part of a larger syndrome. A few things were certain, however: she would need multiple surgeries starting at 3-months-old and continuing throughout her most formative years; the likelihood I’d be able to breastfeed her was extremely small; our daughter’s road would be a difficult one.
We met with a plastic surgeon, with an orthodontist specializing in craniofacial defects, with a speech and feeding therapist, and with other very kind specialists, each educating us in what this cleft would mean for her care. But most importantly, we met with other cleft parents and realized that we were far from alone. And that our daughter had every chance of being the happy, social, functioning kid we hoped.
As her due day approached, it became clear I was having complications due to preeclampsia. So, exactly three weeks before her due date–and 29 weeks after that ultrasound–we met our beautiful little girl, Ainsley Persephone. I had very real fears that I wouldn’t like how she looked and I worried I wouldn’t love her–fears that were so incredibly wrong I can almost laugh at them now. When they first laid her on my chest, I knew with every fiber of my being that she was the most beautiful creature I had ever seen and I loved her from that moment on with a depth beyond which I even knew I was capable.
Immediately it became clear that this girl was a fighter. We were told to expect some time in the NICU with feeding tubes–Ainsley ate from a bottle right away and was discharged to go home before I was (I was hooked up to the dreaded “mag bag” to get my blood pressure under control).
Our first three months with Ainsley were harder than average. In addition to the late-night feedings and diaper changes all parents face, we had to tape a NAM device and palate prosthesis onto her face multiple times a day. I cried the first time we had to rip the tape off her precious, delicate face and she turned red and cried in pain. There was a nasal stent that needed to be removed and cleaned, then reinserted as well. She was completely unable to breastfeed, so I pumped around the clock every 2-3 hours. It took enormous energy, but we knew it was critical for Ainsley’s chances at having the best possible outcomes.
Three months along, we faced her first (and arguably most transformative) surgery. With an aching heart and a brave face, I handed over our innocent, delicate little baby girl to the anesthesiologist. My husband took me in his arms while I cried from fear, worry, and sadness. After several hours, they called us back to the recovery room to see Ainsley. Some cleft parents talk of their child looking so different they barely recognize him or her. That wasn’t the case for us. Our daughter still looked like Ainsley. She just had a different smile, and praise heavens, she didn’t have to wear that NAM anymore! We had a year of scar care ahead of us (rubbing the scar of a baby is more difficult than it first appears), but the hardest part was behind us.
Every surgery, she’s had four so far, she was discharged home the very next day. She is vibrant, full of wonder, silly, and spreads love everywhere she goes. We are often told how much she looks like her daddy. How beautiful her headful of blonde curls looks. How incredibly smart she is. Less often we are told that her scar “looks great” or how it’s “barely noticeable.” I think this is the case for two reasons: 1. Her surgery was very successful and her lip is, indeed, well formed. And 2. Ainsley is so obviously more than her cleft.
If I could talk to that couple walking out of the ultrasound appointment, looking at that white flower, I’d tell them that they’re on the right track. Their little girl would be as beautiful as that flower full of holes, but they’d need to expand that one flower into thousands. A field full of beautiful flowers; that’s closer to the truth.
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Tarah, Thank you for writing this. This makes me so happy and so happy for you. You're all amazing! Love Tyler and Marie