After the NICU-Before the Deafness
Welcome Home Baby!
Bringing our son home from the NICU was both a exciting time and a scary time in our lives. We were thrilled to finally have our son home where he belonged, and yet we were afraid that he was not ready to leave the hospital. What if something went wrong?
The first night home was a little shaky for everyone. I couldn't sleep and neither could the baby. He cried so much. He didn't like to be touched or held. This was probably due to the fact that he could not be held until he was 3 weeks old-after the breathing machine and the tubes were removed. He didn't like to be cuddled and rocked like most babies and this made comforting him difficult. It was so heart-wrenching to want to hold and comfort your child and they won't let you. I really didn't know what to do. I tried everything, even car rides, but I soon found out that HE HATED to ride in the car and screamed his head off. However, a car seat on the floor became our best friend. I could rock without touching him. He slept in that car seat until he didn't fit into it anymore.
Like every mother that has a baby, those first few weeks were a blur to me. We had so many doctors appointments to make sure that he was still healing the way he should be. He had so much blood taken from him when he was little that now, needles do not bother him at all...he doesn't even cry. As the weeks went by, we started to notice that he just didn't act like a baby should...even a baby with his birth history.
The first thing that raised some red flags was the fact that he didn't focus on anything. It was almost like he couldn't see. I knew that babies didn't see much at first, but if you looked into his eyes, it was an emptiness that I can't even describe. He laid there much of the time, doing nothing. No wiggling, no exploring, no baby coos, no nothing. The movement he made with his arms and legs seems involuntary; It was like he was lost. We brought these concerns to the doctor who ran some tests. “I'm sorry,” the doctor said. “The tests that we ran on his vision showed that he is blind. He can't see anything.” I don't remember the rest of that appointment except that we had more bad news.
From there, the doctor referred us to a neurologist because it was beginning to look like he may have some brain damage as well. Would this never end? What had we possibly done to deserve all of this? All we wanted was a baby to love. We didn't want all of this. I became so angry and hateful. I had done everything I was supposed to do to keep my baby healthy and this is my reward? Because of a few negligent people, my son was to pay the price for the rest of his life? I hated the world. I carried this hate with me for a long time.
(Just a side note, my son's condition was due to the fact that I had antibodies in my blood and was not properly diagnosed or treated-see Rh disease for more information)
We had to wait two weeks before we got into see the neurologist and it is an appointment that I will never forget. She looked over his birth history, asked some questions, and then did an evaluation. Her news was not what we wanted to hear. It looked like he had some brain damage called Kernicterus. It is caused by the severe jaundice that he had after birth. It is characterized by a yellow stain on the brain tissue near the spinal cord. It causes severe developmental delays, blindness and deafness. The odds were rare. Best it was possible. This could also mean that he had cerebral palsy. More time was needed before a diagnosis could be made. She recommended that he be evaluated for early intervention so that he could start to work on physical skills because he couldn't even hold his head up yet. She scheduled an MRI to confirm her diagnosis of kernicterus. We had to wait only a few days for the results.
Good news. She didn't see any staining on the brain. That meant that at that moment, he didn't appear to have brain damage. However, she cautioned, a baby's brain is always changing and it could be there and she just didn't see it in the image. She wanted to run another test in about 8-10 months to see how things looked. Until then, she would continue to see him once a month to track his progress and she wanted him in early intervention as soon as possible so he didn't fall further behind. From 2 ½ months old, our son received early intervention services- I don't think that he would be where he is today without those wonderful people that worked with him for his first two years of life.
I am not sure what happened after that appointment but our son changed. Some of my family and friends call it a miracle from God, but for me I just think he had the determination to beat the odds against him right from birth. All of these extra problems were nothing in comparison to that. It was like he was out to prove all of those doctors wrong. He seemed to see. I know that sounds crazy, but he would follow his brother around with his eyes and if I smiled at him he would try to smile back. He still didn't move around all that much but he seemed more alert, more alive. In a matter of a week his whole personality changed and it was amazing to witness.
By the time the next doctor's appointment came around, he was even trying to hold his head up. The doctor was amazed at the difference and did some basic vision tests right in the office. He was shocked because it seemed that he could see. He was doing all of the things that he should be doing with his eyes. The doctor pondered a moment and said that he has heard of the brain making alternate pathways for information that goes around the damaged areas. Maybe he couldn't see, but in a matter of weeks, his brain created a different pathway for vision. So now he could see. He said it was the only explanation that fit. I had a different explanation: He wanted to prove all of you doctors wrong! I could not have asked for a better gift...maybe things wouldn't be so bad after all.
So, at 6 weeks old our son was blind and by 2 and a half months old he could see. Our happiness was short lived because at three months old we found out that he was deaf (see Parenting A Deaf Child). The cycle never seemed to stop. I just wanted it all to stop. I became depressed, withdrawn, and unsure about what I was supposed to do. I had never felt so helpless in my whole life. I had never felt this lack of control over anything. These feelings remained for a long time. Unfortunately, I hurt many people along my journey to healing and acceptance.
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