Three posts. That’s it. How do you share a story, our story, in word form? 26 letters in the alphabet put together forming sounds that make words and words that have meaning behind them. I have three amazing kids and one amazing baby. The baby girl, tiniest of our family but houses the most affection from us all. She pulls our attention and we all fight over who gets to hold her, carry her, put her in the car seat, the stroller, the crib, and on and on. I couldn’t have ever predicted how much love our family would bestow upon her. How her difference would allow us to see the world in a completely different light. I never noticed how many people deal with something. And yet we all deal with something, whether you see it externally or not.
Marley’s arm is in a state of contracture with her fingers dislocated. Her thumb is stunted. She wears the scars of the skin grafting on her right leg. She has no movement in her fingers or wrist. We’ve heard amputation more times than I could ever imagine and permanent fixation. Estimated 14 surgeries for the grafting before she’s an adult. Onset osteoporosis in that limb. A doctor told us on her second day of life that her right arm would only ever be a helper hand. He didn’t sugar coat it. Shock. Disbelief. And we didn’t see him again after that- gone. More doctors three days later and no answers. How did this happen? Neonatal gangrene. A byproduct of some vascular blockage that prevented the tissues from getting adequate blood supply, but not enough to keep the arm/hand from forming. I had an hour long ultrasound at 20 weeks and we never could get a good read on either hand. No history of complications and voila we have a baby at 40 weeks.
It was a surreal experience. I’ve read stories on mothers that experience a trauma at birth with the baby, of how time stops. Of how they survey the room and watch the faces of others, particularly the father. The reactions may be different, but the intensity the same and the clarity of how it is a life changing moment in that very second. Usually the father completely in awe unaware of what was happening. I can feel the time stop. I can close my eyes and see the nurse’s face. I can see the moment she realizes that arm is different. I can cramp with the fear that crept inside my very belly that my sweet girl was just in. I can almost touch the moment it’s so palpable. Holding there. My husband casual and again amazed by it all and yet so familiar like another casual Saturday. We were supposed to go to a friend’s house that night and meet some acquaintances. We were supposed to be induced Sunday morning. We were supposed to take our baby home the next day and bring in the kiddos to meet Mar.... I didn’t even get a picture.
She was whisked away to NICU then transferred to Children’s about an hour later. And there she stayed until she came home.
Day 4
Marley’s arm is in a state of contracture with her fingers dislocated. Her thumb is stunted. She wears the scars of the skin grafting on her right leg. She has no movement in her fingers or wrist. We’ve heard amputation more times than I could ever imagine and permanent fixation. Estimated 14 surgeries for the grafting before she’s an adult. Onset osteoporosis in that limb. A doctor told us on her second day of life that her right arm would only ever be a helper hand. He didn’t sugar coat it. Shock. Disbelief. And we didn’t see him again after that- gone. More doctors three days later and no answers. How did this happen? Neonatal gangrene. A byproduct of some vascular blockage that prevented the tissues from getting adequate blood supply, but not enough to keep the arm/hand from forming. I had an hour long ultrasound at 20 weeks and we never could get a good read on either hand. No history of complications and voila we have a baby at 40 weeks.
It was a surreal experience. I’ve read stories on mothers that experience a trauma at birth with the baby, of how time stops. Of how they survey the room and watch the faces of others, particularly the father. The reactions may be different, but the intensity the same and the clarity of how it is a life changing moment in that very second. Usually the father completely in awe unaware of what was happening. I can feel the time stop. I can close my eyes and see the nurse’s face. I can see the moment she realizes that arm is different. I can cramp with the fear that crept inside my very belly that my sweet girl was just in. I can almost touch the moment it’s so palpable. Holding there. My husband casual and again amazed by it all and yet so familiar like another casual Saturday. We were supposed to go to a friend’s house that night and meet some acquaintances. We were supposed to be induced Sunday morning. We were supposed to take our baby home the next day and bring in the kiddos to meet Mar.... I didn’t even get a picture.
She was whisked away to NICU then transferred to Children’s about an hour later. And there she stayed until she came home.
Day 4
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