Saturday morning I shuffled to Indie’s cradle, and in a sleep-deprived stupor, brought her to her changing table and began to change her diaper.
What quickly woke me up was not a streak, or a trace, or any teensy amount, of blood, merely left in her diaper after a bowel movement,
but a full-on diaper covered in blood, and still filling.
I can’t even use whole sentences here because it was such a horrific sight to see
So much Blood and such a small baby
Like a slow-motion nightmare that you wake up crying from and gasping for air and it disturbs you all day long,
I will never forget as long as I live
I’m still shaking
I yelled for my husband who leapt out of bed in time to see me cleaning up the last of the mess.
Caleb was in denial a little; he assumed I was exaggerating as did every nurse we talked to that morning over the phone. He casually called around for a babysitter and I packed Indie’s bag.
No one believed me when I told them how much blood there had been.
Thankfully, Indie “performed” while being examined.
She was readmitted to the NICU that morning and has been stumping doctors ever since.
The breakdown: apparently the most common and most obvious reason for blood in the stool is a milk protein allergy. Ok, easy enough. I just go dairy-free and soy-free and all the -free I need to go in order to feed my baby what doesn’t make her bleed out before my very eyes.
But the amount of blood surprised and concerned doctors. She is also on the young side for presenting with symptoms of any allergy just yet. Her X-rays came back showing air bubbles and air pockets and loops and bulges in the intestines that shouldn’t have been there.
A condition called NEC was brought up (NEC–short for holy crap do not google this, because it’s a terrible disease where the walls of infant’s bowels are eaten away by infection and the pictures are beyond any terror you can imagine) but that didn’t make complete sense either: Indie had no fever, her stomach wasn’t distended, she acted/looked/seemed completely fine in every other way, very unlike a typical NEC baby, and much older than one, too.
To quote one doctor: “This is the kind of case doctors write studies on. We don’t know what’s happening with her. This is very rare.”
So we waited.
Indie’s IV was put back in. She was fed nutrients through a tube in her head while her belly grumbled. She pooped more blood. They took more X-rays, ran more tests. One minute she had a number of infections. The next minute she had nothing at all. For several days her X-rays came back unsettling.
Doctors started her on small amounts of Nutramigen.
Small amounts of blood still.
Our friends prayed. People of god prayed. People that normally don’t pray prayed.
And then, one evening, after a long day of hard news, and after everyone in our circle had basically swamped God’s throne with fervent prayer for Indie….no visible blood. No infections. Clear test results. A happy, squirming baby girl with good color and an appetite.
We get to bring her home.
A dairy-free, soy-free diet is my life right now, just in case I am one day able to breastfeed her along with Duncan. Although an official diagnosis of a food allergy was not made, that is what doctors are treating it as until we can meet with a gastroenterologist at OU Children’s Hospital. And I’m okay with that.
Can we just?