One of the ladies who works at the hospital in my department had a little granddaughter who was born 3 days after Cooper. He was born on a Thursday and little Chloe arrived the following Sunday, also premature and also weighing a little over 3lbs if I remember correctly. She was transferred to the NICU after being born at another hospital because of her prematurity, as well as something that was going on with her skin and a stomach blockage. After many doctors and tests it was determined that this little girl had a rare condition called Epidermolysis Bullosa. It is a genetic condition where among other things, the individual's skin is extremely fragile and even gentle friction can cause painful blisters. Because of this fragility, children with this condition are often referred to as 'butterfly children.' This past Saturday, March 24th, less than 2 weeks before her 4 month birthday Chloe passed away from complications from this illness. I saw photos from her funeral service and graveside service and the sorrow has still not let go of this momma's heart. She looked like a beautiful little porcelain doll. What has stayed with me the most though are the photos from the graveside. Her mother's hand resting on her tiny casket before it was placed in the ground...the grief in her face was tangible. Although I could never begin to know exactly how she feels, my heart ached. I sat on my couch last night and I sobbed just thinking about it all. I looked over at my precious boy sleeping in peacefully on his Boppy pillow, nearly the exact same age as little Chloe and I thought about how stupid I was. When we received Cooper's diagnosis early in my pregnancy I thought the world was crashing down around me. My world ceased to turn for a time, its rotation coming to a screeching halt. I mourned and cried and tried to make sense of it all and I felt like I didn't know the baby I was carrying anymore. They say hindsight is 20/20 and boy is that ever true. I know now that there was no cause for mourning. My baby is here and he is healthy and that is what matters. The past few weeks I have been stressing because Cooper is quickly nearing 4 months and still wasn't tracking objects with his eyes, won't hardly work to hold his head up, and try as I might I couldn't get him to smile for anything. Seeing the pictures of that mother burying her baby was like cold water being dumped over my head; like a big flashing neon sign screaming at me to forget about milestones and Ds and to just love and cherish my baby. Last night, I picked up my sweet boy and I hugged him. I nuzzled his soft downy head and listened to his sleepy rhythmic breathing, and I thanked God for him, and I came to a greater level of awareness and gratitude for him. Please friends, don't take life for granted. Hold not just your babies, but all loved ones close. We are not promised our next breath. To the Jones family who released their baby girl into the waiting arms of heaven--Thank you so much for sharing your beautiful girl with the world. God bless, and peace be with you all<3
PS---> Just when I thought it might never happen, as I was getting ready to feed Cooper yesterday morning and he was staring at my face intently and cooing, "I goo!" this is what I saw:
Not the best picture but I was scrambling for my phone!
And one more just because. He has recently decided he is a side sleeper:
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