Wednesday, January 30, 2013

Warrior spirit

Before Evan was born, the docs gave us the worst case scenario  We will take him early. We will airlift him. You may only have a few seconds to see him. We don't know if his lungs will be developed  We don't know if he will breath on his own. We will stabilize him and prep him for shunt surgery as soon as he is strong enough. We will monitor him for seizure activity..blah blah blah. I prepped for the worst and prayed for the best.
Did the fluid go away? No. BUT the BEST that could have happened, did. Our prayers were answered in the God intended them to be.
He was born. He breathed on his own, he cried and he was strong. He came into this world and surprised us all. He came into this world without his left eye, his left ear, with a slightly curved spine, a small pituitary gland and an extra rib.  He came into this world with a small, pea sized tumor in his noggin that I despise. I HATE THAT TUMOR. IT caused the blockage that caused the fluid. Having Goldenhar is a bad enough....and in RARE cases, Goldenhar presents with hydrocephalus. Stupid Tumor.
That "stupid" tumor also gave us a GREAT opportunity.  We could avoid the shunt. We had the chance to give Evan a shot at a shunt free life. Soon after I got to leave St. Mary's and join Evan in the NICU, we were told that Evan was a candidate for the ETV (endoscopic third ventriculostomy) Our neurosurgeon would go in and place a small hole in the floor of his ventricle. Very few surgeons perform this brain surgery on children under the age of 2. Under the age of 2, children have only a 40% success rate. To be given a shot at this was a blessing. Mark and I spend 2 days in the NICU discussing the options. A shunt can fail at any time. 50% of shunts fail in the first year. . Poor kid had been dealt quite a hand....this was his big break :) I truly believed in my heart that the ETV was going to work.
Seeing him in that crib, prepped for ETV surgery was my lowest point. NO CHILD should have to go thru this. No mother should have to sit in a hospital recovering from delivery without a baby. No father should have to pack a car and drive his wife home with a empty car seat in the back. IT WASN'T FAIR. But the ETV..this was going to make up for all of that.
Evan went in for surgery. He came out with a big bandage  Our neurosurgeon said it was one of the most successful surgeries he had ever preformed on a neonate. This was day 12 of Evans of life.
Day 13, day 14 day 15....everything looked good. Day 16, 17...18.19....
During rounds on day 20 (8 days after surgery) his head circumference jumped. They attributed it to the plates "leveling out"...
we left the nicu on day 29. Evans head circumference never stopped growing.
On January 17th at 11 weeks old Evan got his shunt. The ETV had failed. We got to cardinal Glennon and checked in. I was handed the smallest hospital gown you've ever seen and THAT broke my heart. The fact that so many children go through illnesses & accidents that these little gowns are common place just sucks. No eloquent way to say it.
This time I got to carry Evan from the pre-op room to the surgery floor. He was as happy as a clam and looked adorable in his gown, I might add. We sat and waited for anesthesiology to come get him. 4 hours later he was done,  He got another super cool bandage and another battle scar. A one night stay is WAY better than 29 :)
When he woke up the next morning, he was his old self. He smiled at his dad and kicked his legs. He was 11 weeks old and had just survived his 2nd brain surgery. and he was a happy baby :)  Once again, he pulled thru and was no worse for the wear. I hate that the ETV failed, but I am still thankful that God gave us a shot at it. We have no guarantees that his shunt will function properly, it could be 6 days or 6 years before his next surgery....but what I do know is this. Evan is going to take each challenge head on. He will overcome it, and we will make the best of it. And so will we. After all, with a warrior spirit like his, how can that NOT be contagious?

1 comment:

  1. the tumor is simply a fatty tumor. there is no expectation that it will cause any further issues.