June 2020 marks the 23rd year we’ve managed to keep our miracle baby alive. No small feat even after her release from the hospital in September of 1997. The first 3 months were a breeze because she was constantly being monitored by highly trained nurses and a bajillion machines. Right about the end of September that year, we were on our own, trained by the NICU nurses and my pediatrician’s number on speed dial. Not so unlike many other parents who have gone before and after us. The problem was, this kid came with a HUGE instruction manual due to complications and diagnosis.
Is she dizzy?
Who can tell? She just lays there all day. Is it shunt related? Is her head swelling?
Is she throwing up?
Like projectile vomiting or are we talking spit up?
Is she eating every 2 hours?
Yes, but when do I start counting? If it takes her an hour to eat 2 ounces in the middle of the night, do I start counting from when I started or when she finished? Because if I start again from when she finished, I’m getting about 45 min of sleep every 3 hours.
Through all the surgeries, therapies, specialists and advocating, we did it. She’s our Miracle.
As much as she really hates me talking about her birth story, her disabilities or making any overtures about how much she means to me … she’s my Miracle.
So, in honor of my Miracle this month turning 23, I purchased a special Glassy Baby … welcome Miracle to our home.