Friday, May 17, 2013

How Did Eliah Get That way?

Thursday, June 21, 2012

Sometimes people ask me what happened to Eliah to make him the way he is. Was he born like that? Did I know something was wrong right away? And I thought I would give a somewhat concise description of what happened.  

My pregnancy with Eliah was normal.  All of his ultrasounds were normal.  Even his birth was normal.  We thought we had just added another perfect child into our family.

Four days after birth, Eliah's circumcision was completed, and the nurse handed him back to us and said, "Just keep an eye on it, and if it starts to bleed, just let us know". Well, four hours later, he was bleeding. We didn't think too much of it at the time.

Twelve hours later, he was still bleeding, despite all attempts to stop it.  Twenty-four hours, lots of pain, crying, blood tests, and 13 stitches later, Eliah was transferred to the NICU, and we were told that our son had Severe Hemophilia A, a blood clotting disorder.  "Down here in the South, we call that a Free Bleeder."

As scary as that was, we moved forward with our normal life, being careful not to bruise our new infant.  We treated him like a piece of glass.  Regardless, all he did was scream...all the time.  There was rarely a moment's peace without the screaming.  But we loved him, and we tried everything we could to help soothe him.

Then, at three months, Eliah had such a bad screaming spell, that I was compelled to call the doctor.  They gave him the medicine to treat a bleed, not yet knowing the cause of his discomfort, then led us to the hospital for a scan of his brain. 

They immediately came back and told us Eliah had a brain bleed.  Apparently, it happened either while I was pregnant or during birth.  It could have been one of the couple times I fell while pregnant.  We don't know.  Ultimately, we will never know.  But they assured us that he was okay to take home...."just be careful".

I walked with him every day in the stroller. We walked approximately three miles a day, and the bumpy stroller ride seemed to make him quiet.  I thought all was well, as this went on for a couple months.

Then, at five months, I looked down in Eliah's bouncy seat one evening as he was asleep (and I thought dreaming), I felt something wrong.  I tried to wake him, but he just kept sleeping.  We called the doctor, who told us to head straight to the ER. 


We soon found out that Eliah had two major brain bleeds. One from a couple weeks prior, and one current. The entire left side of his brain was covered in blood and pooled down at the base of his skull. He had been seizing, not dreaming, for hours. It's possible that the bumpy stroller rides caused this new bleeding in his brain.
We spent four weeks in the hospital trying to the stop the seizures. The doctors made several attempts to put Eliah in a coma to settle his brain down. He had surgery to put in a port, so that his blood clotting factor could be given on a regular basis. And he was as close to death as you can get....Although, nobody told us this until more than a year later. We really had no idea how close we were to losing him.



At one point, the doctors were so desperate to stop the seizures, they scheduled brain surgery to drill a quarter-sized hole in his skull and drain the blood. But for the grace of God, the morning of his surgery, he stopped seizing for the first time. They canceled the surgery with only an hour to spare, and we began the process of healing.


Since those four and a half long years ago, Eliah has had a very hard road. His brain is damaged. He was blind for the first year of his life due to the nerve damage in his eyes.  He has high blood pressure.  He still has many seizures, where he stops breathing, and we have to resuscitate him. He still has bleeding problems. He still can't walk or talk at the age of five. But he has overcome some HUGE obstacles, and he still has many to go.

Every day he fights to do the things we take for granted. And we question every day if this will be a good day or his last. Every night I pray that he will be alive when I wake up.  Every day is a struggle, because it is work to play with him or feed him or bathe him. It's work to include him in activities. It's never relaxing to go on vacation with him, or take him to the park, or just to take him to the store.

But he is happy. And he is worth every single effort it takes to see that smile or hear that laugh.


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