Posts Tagged ‘oral aversion’

Sophia’s diagnosis

esophageal atresia, tracheosophageal fistula, tracheomalacia, reactive airway disease, gastroesophageal reflux disease, congenital nystagmus, anisocoria, Horner’s syndrome, strabismus, ptosis, congenital esophageal stricture, heart murmur, dimple on spine, sleep apnea, oral aversion, global developmental delay, and two pneumothorax!  Sophia has had twenty surgeries all together including ligation of tracheosophageal fistula, esophageal atresia repair, G-tube placement, distal esophageal stricture repair, tubes in her ears and 16 esophageal dilatations

My Sweet Sophia

On May 19, 2009 after ten hours of hard labor my daughter, Sophia,  was born.  After birth, I was able to hold her for about ten seconds before she was taken away to the NICU.  About four hours after she was born my husband flew in, he was stationed down in Florida at the time.  We went to truly meet our daughter for the first time.

I will never forget the first time I saw Sophia.  She was hooked up to so many tubes and wires.  That baby in the NICU couldn’t be my baby, how was this possible?  Sophia had some problems in the NICU, including a code blue, which means she stopped breathing just hours after her initial surgery.  Throughout her stay in NICU she continued to have problems with gaining weight and having to be continuously suctioned. (more…)


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