the first day...

today i didn't have to feed my baby through a tube. today she ate and drank everything she needed to grow and be healthy without any intervention other than a little sugar free chocolate in her milk. today i have to figure out how to give my daughter a soluble tablet of medicine without using a tube, because i have faith that we may never have to use the tube again.

tomorrow the nutritionist will be here. we will calculate the calories she is getting and make sure that we are keeping her hydrated. we will check in about vitamins and minerals and all of the rest. i am very excited for tomorrow.

the first three days of sophie's life, we didn't know she was sick. i put her to breast and she latched on and she seemed to be eating, even though she was very sleepy and floppy. she snuggled and we danced and i loved every little bit of her. those were three wonderful days.

on sunday may 4, we were getting ready to be released to go home. then sophia's temperature dropped. she was dehydrated. they suspected sepsis.

i will never forget the moment that they wheeled her away to the nicu. my life was forever changed in that moment. i was heartbroken and terrified and i had no idea what was wrong with my baby, but i knew that things would never be the same.

the next time i saw my daughter she had a feeding tube, an iv, and a million other monitors and tubes coming from her tiny body. we tried to feed her through a bottle, but she was uninterested and fatigued so easily. she only seemed to want to sleep. she rarely made a sound.

my heart ached with how much i loved her. i sang to her. i held her. i rocked her. i had to leave her there at the hospital each night and go home. no mother ever imagines having to leave her newborn in the hospital, in the care of others. it was excruciating. i promised to come back again first thing in the morning, and i did. those were long days. long days of not knowing what was wrong with my baby girl. long days of not having her home where i knew she belonged.

seven days after she was born, we had a diagnosis. prader-willi syndrome. even today, when i tell people about what sophia has, they've never heard of it. so very rare, these children are. so misunderstood. the term "failure to thrive" was awful- but at least we knew. we knew what we were up against, and we knew what we had to do.

before we could go home, we had to have a swallow study. the study showed that sophia was "silently aspirating". she was quietly getting liquid in her lungs with each swallow because she couldn't effectively close the passageway that lead from her throat to her lungs. we had to learn to feed her through her tube. to use the machinery to nourish our daughter. i was pumping breast milk, and we were putting it in a bag and pumping it into her. we had to learn to place her nasogastric tube, in case she should pull it out. we had to learn to work a heart and lung monitor. i was quickly learning the newborn nursing basics. i was unafraid. i knew it was what i had to do to bring her home. i was unwilling to leave her any longer.

these nearly fifteen months later, it all feels like a blur. today, i am a tube feeding expert. i am unafraid to tube feed my daughter wherever we happen to be at the time we are due to do so. sophia, however, has other ideas. she is growing up. she is an active little girl. she is no longer content to lay passively and receive her tube feeding. she wants to be up, to be playing, to be exploring- and i would rather that she be doing those things, too.

today was a milestone. i will remember today above so many other days. today was the first day that we didn't have to do a tube feeding. now i know what they mean when they say, "today is the first day of the rest of your life."

today is the first day of the rest of our lives. we are moving forward. towards the next milestone. i am so excited for tomorrow.