Friday, October 31, 2014

Reflections on a Year with Cleft Palate

Last night I read a post about a fellow alum of Moody who had cleft baby. It brought it all back and I realized that today is not only Elly's birthday, but marks a year into this cleft journey. Since then it's filled my mind, the memories and my attempts to process them.

I remember the relief of the epidural and everything coming into focus again, and then how quickly it all went, the crazy birth that left the nurses amazed and Isaac and I looking at each in wonder that that was it, it's already over? as they placed my wet and squalling daughter on my stomach and I snuggled her in awe.

 I remember within minutes when she didn't immediately latch and made a funny noise, the nurse lifted her up so that light from the window fell on Elly's face. "Oh, it looks like she has a cleft," the nurse said as she nonchalantly handed Elly back to me. My heart nearly stopped and I spent the next hours processing and wondering and warding off fear, because clearly "cleft" didn't mean what I thought it meant, so what did it mean? What did it mean for the precious daughter in front of me?

I remember in the hospital room googling "cleft palate". I remember becoming, at that moment, very calm. I realized we were heading into a storm, and my reaction to an emergency is always steady, quiet, determined calm and quiet. I drafted an email to our family and closest friends, announcing her birth and giving what little information we did have, so that they would know and would begin to pray.

I remember when this photo was taken. I chatted with my family via skype from the hospital bed and I told them what I knew, which wasn't much, and my mom commented on the peace we exuded as I spent nearly the whole time stroking Elly's hair as she slept. Much of my time in the hospital was just like this, just Elly and I, since Isaac still needed to be watching Judah. We were quiet, my newborn and I. We tried nursing. I began pumping. We were peaceful. I was waiting. When she cried in the light I could see the darkness at the back of her mouth where there wasn't a palate, and where the uvula was split in two, and I was afraid of what it meant.

I also remember what didn't happen, and that frustrates me now. After that comment from the lactation consultant just moments after Elly was born, it was a full week before we saw a specialist of any sort, and the truth is we actually never saw a doctor specialist. The hospital (the same network that has had the Ebola chaos this past month) didn't have anyone on call that knew anything about clefts. They called a doctor to come see us, he didn't show, so we were discharged without seeing anyone.

I remember the questions. Was the cleft simple or serious - everyone said different things. Would Elly be able to nurse? Would Elly ever drink normally? Would she need surgery? How many surgeries? At what age? Would she be able to speak normally? Would she need speech therapy? I remember the nurse (an angel!) at a plastic surgery center who finally told us more about Elly's partial cleft and what it actually meant. She looked at me and said that it wasn't my fault, and she didn't know how deeply I needed to hear those words. She gave me a way to feed my hungry baby.

I remember a few days after Elly was born packing up to go to another appointment. She was crying, Judah was disobeying and crying, I was attempting to pack up bottles and pumping stuff and freezer packs and two diaper bags. We lived 30 minutes+ away from everything and I was pumping every two hours.  We were taking a second language acquisition course and were still raising funds to move overseas. I cried the entire drive to the doctor's, holding Isaac's hand, and just managed to get out, "It's just a lot" as an explanation. It was. I have been overwhelmed by juggling everything many, many times this year.

I remember at three months old not letting her out of my sight for weeks before the surgery. I remember walking her around the hospital, amazed that she wasn't crying despite having not eaten that morning. We passed three other cleft kids, one having a seizure, one preparing for yet another surgery of many. Elly slipped into a deep sleep in my arms just before I handed her off to a nurse to take her in for surgery.

I remember packing up the pumping bag and running to meet Isaac in post-op and my heart rising to my throat as I saw her limp, white body. Her hair was orange from antiseptic wash, her tongue had a stitch in it that was taped to her chin to keep her from swallowing it. Her lips were ringed with dried blood and her mouth had tubes and wires coming out of it. It might be my single most sickening moment of motherhood so far. I held her for hours, limp, unresponsive. I held her for hours that night as she came out of the anesthesia with wide, fearful and pained eyes and a mouth filled with pooling blood, murmuring but clearly afraid to swallow or cry. She only calmed when I held her and began murmuring if anyone else tried to take her, so I held her all night long. There was a fiercely protective momma instinct at play. She needed me. I would give her all that I could to help her just get through until it was okay.

I remember when the surgeon came in the next morning and told me that the cleft was fully closed, and how it took me a while to even process what he'd said because I hadn't realized it was possible. I remember the sun coming through the window and the silence of the room, just me and her again. I remember feeling deep peace and the sustaining prayers of God's people.

There were other days in recovery when we tried to figure out feeding and pain meds and it was stressful and overwhelming. But mostly she was fine after that. The difficult thing for me as been the daily juggling of two small children, nothing to do with the cleft palate, really. Just trying to figure out how to be a mom. That has been the primary, daily lesson of this year and, I imagine, next year as well. Ongoing.

I do feel, however, a deep sense of thankfulness. I am so thankful for the nurse that saw us after that first week, who helped us take care of us Elly and understand what all of this meant for her and for us. I am so thankful for the skillful surgeon who took us under his wing and worked wonders on Elly's palate. I am thankful for people who prayed. I am thankful for Elly's fight to eat and gain weight and learn to babble. I'm thankful it's gone as well as it has.

Most of all I am thankful for her, for her life, sweetness, and energy. She is delightful. She is my daughter. My Elly bean.

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