tracheotomy surgery

‘He is 1 in 6 billion.’ I clenched my husband’s hand in disbelief, tears welling in my eyes.’: Mom praises medically complex son, ‘He is our little heart warrior’

“He was lifeless and pale. The clock was ticking. All we could do was pray and hold his little hand. Sitting beside his hospital bed, 3 genetic doctors in white coats rushed in. ‘Can we go to a private room to talk?’ I walked down the hallway in a fog. ‘We were wrong. It’s severe. He will never live independently on his own.’ Soon after, he had a stroke and began seizing up. This was the worst-case scenario. It was really happening.”

‘You must be so relieved. I bet you can’t wait to take her to Target.’ This medical hell would follow us home for years to come.’: Mother shares reality of daughter’s tracheostomy post NICU, ‘If I was going to do this, I’d become the best damn trach parent ever’

“If I was going to do this, I’d become the best damn trach parent that ever lived. The reality is, while our NICU chapter is over, this is far from normal. I can’t take Lily to the store, or anywhere, alone. My husband and I haven’t been alone in 4 months. One of us needs to be awake around the clock to care for her. There is no longer privacy in our home as our ‘special guests’ come in and out all day and night.”

‘Your daughter will never be more than 2 feet tall.’ My husband and I broke down in tears. ‘…If she survives.’: Mom births baby with rare Thanatophoric Dysplasia, ‘I will never give up on her’

“The news broke me and honestly ruined my pregnancy. I prayed our baby girl would grow, that her little chest would expand to survive this birth. I wanted Paisley to have a life, no matter if it was only for a few seconds or a few years. She deserved the world and I was determined to give it to her.”

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