it's easier than you think it is...

when sophia was first admitted into the neonatal intensive care unit, three days after she was born, the immediately had an ng-tube (nasogastric) placed to help her get the hydration and nourishment that she would need to stay alive. it was sad and scary to see my tiny, 4 lb., 14 oz. baby lying in that crib, under the warming lamp, with tubes coming out of her every which way, including her tiny, sweet little nose.

every day, we worked tirelessly to get her to eat as much as we could through her mouth. she was so sleepy and weak, though, that we never made it through a meal. then, one week after she had been in the nicu, we did a swallow study to see if there was more than just fatigue getting in our way. she had been silently aspirating (the milk was going into her lungs, putting her at very high risk for pneumonia), because she couldn't coordinate the suck/swallow/breathe sequence properly. her muscle tone was so low, that things that needed to happen quickly and pipes that needed to shut off just weren't working right.

we were told that if we wanted to take her home, we'd need to learn how to change the tube confidently and safely, and how to run both a feeding pump and a heart and lung monitor. we were thrilled at the prospect of getting our little girl home, so we said we'd do whatever it takes. it was a little more challenging than we'd expected, though. can you imagine holding a tiny little fragile baby (especially if it's YOURS!) down and shoving a tube down her nose and throat and into her belly? man, that was horrifying. i was always so afraid that i would put the tube in the wrong place, or that i would tear something or hurt her in any way. i did understand, though, that without this tube, she would die.

that was one of the first contradictions of keeping my daughter from pain vs. keeping her alive. subsequently, she's had 2 surgeries and most notably, an iv placed in her forehead that made her scream in a way like i'd never heard a baby scream before. it took every fiber of my being not to jump over that table and not rip the nurse's head off that was placing that hydrating, medicating and medically necessary intervention. intellectually, you can understand that all of this is necessary, but there is something greater in most parents that makes them want to protect their children from harm more than anything else in the world.

we did what we had to do, though, and sophia came home. for the first year of her life, i was trapped in an endless loop of pumping, preparing, feeding, and cleaning supplies. things did get a little easier when sophia's g-tube was placed in october of last year. it was easier for her to absorb the nutrients she was getting, and there was no longer an obstruction to her breathing. there was also the cosmetic change... it was a little harder for people to "see" sophie's disability. it was a relief to no longer have to explain to strangers what was "wrong" with my baby.

then i was able, in may, to relieve myself of the electronic baby (read: hospital grade breast pump). it was hard to stop giving sophia what i knew she so desperately needed (breast milk) even after i was assured that i had done a great job, and more than most people would have ever done. i was, however, really liberating to move beyond that- to have more time to really, truly enjoy my time with my daughter, rather than going through the motions.

since that time, we transitioned sophia from breast milk to cow's milk. she's gotten better at eating, stronger at swallowing, and become an all around safer eater. when i was able to post that sophia was no longer using her g-tube, i could hardly believe it myself. we had a couple of close calls, thinking we might need to go backwards before we could move forwards- but as much as we feared having to use it again, sophia continues to move forward, dragging us along behind her.

today, i believe that we may have finally closed the door on this crazy "failure to thrive" chapter of our lives. sophia had her g-tube removed by the surgeon who put it there. the decision to do this was supported by her pediatrician and her speech pathologist. honestly, if they hadn't wanted to cover all of their bases and had me hear "the spiel", i could've removed it myself at home. i've had to replace the tube myself before (it had gotten clogged). all that she did was remove the contents of the foley (balloon that held it in place) and pulled it out. then she slapped some clean gauze on it, and taped it up. goodness gracious, it couldn't have been easier! i always think that this sort of thing is going to be more complex than it really is. the fear of the unknown is really all that gets in the way.

so now, we wait. i monitor the bandage, if there is seepage, i change it, and it should close up on it's own. most close up within 24 hours. about 10 percent require surgical intervention to close. if after 6 weeks, it is still seeping, we go back in and they will do surgery.

can it really be this easy? it's what i'm learning as we keep moving forward... it's usually easier than you think it will be, and it keeps getting easier with time. thank goodness for that.