Monday, August 5, 2013

on The Day Before

Being a mom to a child with special physical needs, I've had to deal with many days before surgery. Having done this for almost TEN years now, my perspective is a little different.

Daniel was born with many medical issues, (more than most, less than some) causing him to have surgery the day he was born, live in NBCSU (New Born Special Care Unit) for 5 weeks, and have heart surgery at 3 months old.  One of his many challenges has been eating enough calories for him to grow at a consistent rate. On top of that, Daniel has horrible acid reflux, because of his anatomy, and has been on Zantac and Prevacid since infancy.  Daniel was born small, but when he was around 4, his weight gain plateaued.  He wasn't eating enough to grow at all. So. We agreed with the doctors that the best way to force feed Daniel was to place a feeding tube into the stomach. 

This helped, but Daniel continued to struggle with serious reflux leading to vomiting, and aspiration pneumonia. For the past few years, Daniel has had a g-j tube, with which the formula gets dumped directly into the intestines, bypassing the stomach, and cutting down on reflux.  This has worked really well, but when the tube needs to be changed, Daniel has to go to the hospital and have it placed with an X-ray. This is a pain, expensive, and exposes Daniel to quite a bit of radiology.  The surgery tomorrow (at 2 pm) is to place a j-tube surgically into the intestines.

So many of our day befores have been full of fear, full of anticipation, being thrust into a new world of the hospital.  So many of our day befores have diapers, strollers, and nursing little siblings. This day before feels different. It's a surgery, for sure, but we're somewhat at home in the hospital. The little ones are safe with Grandma and Grandpa , Daniel is old enough to entertain himself, and even some of the unknowns sound vaguely familiar to me.

Thanks for all your thoughts and prayers, for tomorrow, and through the past years. We cherish the love you all send! And we'll let you know how it goes.