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?

Monday, January 7, 2013

The unknown

"We may never know what caused this."

One of the doctors said these words to Mark and I as we were leaving the fetal care institute in early August. By that point, I knew there was major problems, and I'd been watching the fluid build up week after week. My concern wasn't what caused it, my concern was how it was going to effect my baby. Would Evan make it to our due date? Would Evan be able to breath on his own? Would Evan make it home? This is what I worried about. The unknown. Most days I was faithful that he would be okay, but those fears crept in at times, I'm not going to lie. Knowing what caused the blockage just didn't matter to me. I am sure some parents want to know, but I wasn't one of guess what? Soon after Evan's delivery, I would get to find out EXACTLY what caused the aquaductal stenosis. And what caused that is something that happens randomly, with little explanation in every one in 5600 births. 

I am going to go off on a side note for just a second. I never intended to go this long between posts. I cant even chalk it up to being a busy new mom. The first 29 days of Evan's life we spent the vast majority of our time in room 1823 at the NICU at Cardinal Glennon. I was never so happy as the day we went home, but I was also sad. That place was Evan's first home. Those nurses will forever hold a special place in my heart. In those 29 days I spent a LOT of time sitting and watching Evan. I had more than enough time to blog, but I didn't know what to say, or how to say it. Things changed daily, minute by minute in fact at times. I also wasn't ready to tell everyone that Evan's Hydrocephalus wasn't a random isolated occurrence  It was a bi-product of a much bigger issue. A syndrome that even as a special education teacher, I have never heard of. All of the things I worried about (Him breathing, the rush to cardinal glennon...none of that was worth my worry. He had apgar scores of 9/10. But when Mark carried him over to me, minutes after being born, I knew, I knew something else was wrong. 

Evan has Goldenhar syndrome, also called OAV ( Oculo-Auriculo-Vertebral) For Evan, that means that his left eye did not form. His left ear is very small and there is no opening. Two of his vertebrata are butterflied and he has a 13th rib. Evan's left jaw is underdeveloped, and he has palsy on the left side of his face. Evan has focal alopecia on the left side of his head, yet right above that, he has a tear shaped purple mark, where the hair has grown out 2-3 inches. It sticks straight up and makes me smile every time I see it. Evan is also the cutest little boy I know. Evan has a button nose and a cute little baby mullet  He is laid back and sweet. and only cries when he needs to tell us something. Evan has done better than anyone thought he would. Evan has a mom and a dad who will move mountains to give him what he needs. Evan also has a lipid tumor, just between his third and forth ventricle in his brain. THIS is what cause the fluid to build up. The fluid would keep his brain from forming the way it should. It caused Agnes of the corpus collosum. Evan's pituitary gland is smaller, and sits at an angle. Evan's sweet demeanor and warrior spirit won the hearts of his resident doctor and the greatest primary nurse in the NICU. There are many things "wrong" with Evan, but there are so many things that are RIGHT.

His lungs, heart and kidneys are healthy. He never needed oxygen and breathed on his own from the word go. He is strong and has been through more in 8 weeks of life than most kids go through in 20. He is HERE, and every morning when I wake up, panic hits, just for a moment. Then,  I lean in....and when I hear it, my heart skips a beat and a rush of joy fills my heart. I hear his steady breaths going in and out and I thank God for getting my baby this far.