Happy 6th month birthday to our angel, Gabby Grace. Here we are in the month of July and I still feel like it should be spring starting not summer. Gabby was born in the beginning of January and time has not been my friend. Time. It just keeps slipping away and here we are smack in the heat of the summer. I guess that is because of the long hours caring for Gabby and everyone else with little sleep to go on. In the beginning of this journey with baby Gabby having a rare skin disorder her Daddy and I really didn't know how we were going to get through each day. We left the NICU having just learned how to change Gabby's dressings which, in the beginning, took the nurses 2 hours to change. How in the world was I suppose to do this twice a day with everything else on our plate. God is good. That is all there is to it. By the time Gabby was discharged her skin had healed to the point where her dressings were limited to her limbs and torso. Individually wrapped fingers and toes only when needed. She had come a long way and I kept hoping that she would heal and this nightmare would be behind us. After about three weeks at home, tiring three weeks, it hit me that Gabby wasn't going to heal. Her skin kept blistering, I kept lancing the blisters. Just as soon as we thought she was going to be okay the next day her skin would slip off in different places. I was spending my early mornings, afternoon, and late into the night feeding, changing, dressing/redressing, aquaphoring, & wrapping this little tiny bundle oh so very carefully. She cried a lot. I felt for my other children who needed me and most likely hated to hear her crying. Tylenol was given for her discomfort. Gas drops also were a big help. Despite all that this little one has dealt with she has pulled through and is such a sweetheart. She cries very little these days and began sleeping through the night around 4 months after I started her on rice cereal. That was wonderful! Gabby loves her baths. She can't spend too long in her tub or her skin becomes too soft and fragile. Heat is also an issue for her. I will share in posts to come what we have learned about Gabby's condition and more on how she is developing. It is a journey that is enriching us all.
This little angel has taught me so much in these last 6 months. My faith has grown and prayer is more real to me than ever. Mommy loves you my sweet sugar monkey. (A nickname given to her because of the sweeties in the NICU, sugar water to help calm her and her stockinette dressing that made her look like a sock monkey.)
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