Monday, June 27, 2011

"Bee"-ography Monday

Ethan was born to his birth mother via C-section. They found he possibly had hydran at an ultrasound right before his birth. His apgars were very poor and they did not expect him to make it.Attempts to intibate him failed but he finally showed them what a fighter he was and came around! He was life-flighted to the nearest children's hospital where he stayed in the NICU.

I got a phone call one afternoon asking if I would be willing to adopt a child with hydrocephalus. I immediately said YES! I didn't even know if it was a boy or girl when I hung up. They called back to ask if I wanted to meet HIM in two days. I could not wait! I was not sure what to expect since they said his hydrocephalus was quite severe. I did know I would love him no matter what! When I went in to meet him, he stole my heart immediately.  I got to hold him and feed him. As they told me the questionable condition of his brain and how he would likely be blind and possibly non-responsive, I was not really hearing them. He was staring at the stripes on my shirt and  holding each of his fingers up to me individually for me to stroke them. So much for blind and non-responsive.

I hated to leave him, but had to as they had not made a decision as I later found out someone else had originally wanted to adopt him! I had to wait several days to see him again before they finally called to say he was mine. I went up every day to the NICU to see him. At the first visit I took a list of about ten names with me to see which one fit. The ONLY one that fit him was "Ethan". The nurses asked what I was going to call him and even though I told them it was not his legal name, they couldn't write it on his crib card or clothing fast enough.

They weren't sure if they were going to do a shunt or not. At the time I did not know how important shunts are to relieve pressure and pain when they are needed. I was hoping he would not need surgery - mostly out of not knowing the facts. I was surprised one day to go up and discover he had gotten a shunt that morning! I was kind of upset I hadn't gotten to be there for him! It was the only surgery he would do without Mommy! Only a couple of days later they cleared him to go home with us!

The day I took him home I was basically begged not to take him home. They seemed surprised that I wanted him. He did not have a definite hydran diagnosis yet, but they felt he would definitely be completely dependent on a caregiver for life. They said he would be blind, deaf, non-responsive, never do anything purposeful, and not know his family.

His first four months were very stressful. He was adorable and we all loved him to pieces, but he screamed almost non-stop and hardly slept. He started having really bad seizures and had a bout with RSV. He was in the hospital several times. Once we got him on seizure meds and meds for reflux, he seemed to settle down and be a lot happier.

We started using Early Intervention as soon as he came home. We had an amazing team who were with us until he turned three. They helped us learn baby massage, how to position him, how to work with him, how to do therapies, how to feed him, and helped us get equipment we needed.

By the time Ethan was a year old he was much happier and cried almost never He got a g-tube at 8 months old as he was no longer able to suck his bottles. He ate some small amounts of food by mouth until he was four when we began to notice him aspirating. At that time we felt it was safer not to feed him by mouth anymore. We finalized his adoption when he was 10 months old.

Ethan started preschool when he was almost three. His teacher has been AMAZING. She includes him in everything they do. He is graduating at the end of July and I am super sad to see him leave! I know he will miss them too. I am known at the preschool as "Ethan's mom" If we are walking down the hall all the teachers and students have to stop and talk to him.

These days Ethan is quite happy and active. He likes to go out and about and gets very vocal. He loves to visit family and friends. Everyone just loves him. His smile can light up a room. Ethan has this overwhelming sweetness about him that everyone is drawn to.

Ethan enjoys watching movies on his DVD player, going for walks, playing with toys, looking in the mirror, listening to music, going out just about anywhere, and especially going to school. He can roll over a good bit and operate switch toys.

We tried several meds for his seizures over his first two years with little success. At one point he was having 20+ very long seizures a day. We started the ketogenic diet and it has really worked for him! Generally a few days a week he might have one or two brief staring seizures. Occasionally  a few bigger ones if he is sick. He has been on it three years now and I recently refused to entertain the idea of weaning him off of it.

While Ethan does have some cortical vision and hearing impairment, he does see and hear. He does know his family, he DOES do purposeful things and he is living a happy life. I remember once hearing how some of the other hydran kids had favorite toys they were attached to and hoping some day Ethan would too. Ethan does have a favorite toy named "puppy" he is very very attached to and I do so adore that.  Not a day goes by I don't thank God for sending me this precious boy. He teaches everyone so much. Everything he does, every little sliver of progress he makes, is a true miracle.

1 comment:

  1. This was so sweet to read the story of how Ethan came into your life. I am so happy to know you, Ethan and Nicole :) You are a great family! God has truly touched you and your beautiful children.

    Hugs! Melinda & family


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