Home away from home.

It's hard to believe she's been home for a month now! Today is the longest she's been home since she was born. Since birth, McKenzie has been admitted to Arnold Palmer four times. We haven't kept her home longer than a few weeks at a time and honestly, our lives are chaos. Living an hour in a half away from the only hospital that will care for her is stressful, I've learned to keep a bag packed and handy for random trips and admissions. 

Overall,  McKenzie had heart failure and G-Tube placement, she spent 10 days in the Cardiovascular ICU. One week later she spent four more days due to dehydration from her heart medication and an intolerance to her formula. Three weeks later, she spent another week for a 102. temp and a UTI which caused an obstruction to her kidney. Three in a half weeks later, she spent 8 days for her heart surgery. 

Having her home is almost like a dream - Sometimes I wonder if its safe to put my bag away or if she will end up needing to go back. The hardest part of having a baby with medical needs is the constant worry if her behavior is "normal" baby worry or if it's something related to her diagnosis. 

The hospital has been good to us and even though we've become very familiar with the staff,  I'm just hoping shes home for good, I feel like her infant months were taken away by her medical needs  - I just hope her toddler years aren't the same.