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The becoming of a Special Needs Mom, My Journey: Parts III & IVMay 03 '05 Write an essay on this topic.
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The Bottom Line The last 2 1/2 years in just a few words: Denial, Fear, Anger, Acceptance and finally Strength. Feelings that pop up all the time and make me question almost everything.
Parts I & II, Leading up to the Birth and After the Birth. Part 3: The NICU After I was all sewn up, I was wheeled into my room and given the number to the NICU. “Call if you want to hear about your baby” they said. I called every 2 hours that night and each time, all they could tell me was that he was sick, but stable. They would know more in 24 hours. The next day, I was anxious to see my son. I wanted to get out of bed, but needed permission to do so. After pushing the nurses and repeatedly telling them that I would get up on my own if they didn’t help me, I was given a wheelchair and wheeled into the NICU to visit my son. He looked so small surrounded by all those tubes and wires. The only thing that I wanted to do was reach out and scoop him up and make everything better again. I grabbed my husbands hand and then with my other hand, I reached over the warmer and touched him. All of a sudden alarms started going off and the nurse ran over and told me that he couldn’t be touched. When he was touched he would stop breathing and that later she would show us how to touch him the right way. Imagine that, being a mom and being told that you could not comfort your hurting baby by touching him, that the only way to let him know you were there was to talk to him. Later that day, we were shown how to touch him. He couldn’t handle anything but very subtle pressure, no rubbing at all. I could place on hand carefully on the top of his head and the other lightly on his tush. That was the only way. That visit was followed by a talk with his doctor. My son had was born with a high temperature and was septic. There were a few other things, but he was being watched closely and only time would tell. The days went by and I visited all that I could. I was lucky to have my hospital room directly across from the NICU, so it didn’t require much walking. Of course, the time came when I would have to go home. On the morning of my discharge from the hospital, I received a call to my room. My son had been given a brain scan, an ultrasound of his brain, which is common for all preemies and they saw something that was suspicious. I was told not to worry and that they will do another one soon and just to wait until then. I was under the impression that since it was not a bleed, that he would be fine. After my discharge, my husband and I, in between many NICU trips, waited patiently to find out the results of the second brain scan. Our days were filled with ringing alarms, babies with wires and nice dark circles around our eyes from lots of worry and the lack of sleep. Finally they had come in and we just had to wait for the doctor to speak with us. It was Christmas Eve and the best time to hear good news. Only it wasn’t good news at all. My son was diagnosed with what is called Periventricular Leukomalacia or PVL for short. PVL is a condition where the white matter of the brain around the ventricles dies from lack of oxygen. In other words, my son had suffered brain damage. For the next week, I walked around like a zombie. Being told that your child has suffered brain damage is hard enough, but being told when your child is already dealing with the problems that come along with being a 2 month premature baby and you yourself are dealing with the hormones from just giving birth 2 months early, it just makes it all the harder to deal with. I think that at that time, the best way for me to deal with it was to just not deal with it at all. The only time I would deal with it was while in he NICU and even then it was more denial and pity. I feared for my son. Once again I would sing the words to Baby Mine, only then they began to mean so much more. It is amazing how those words that I sung to my tummy the day I found out that I was pregnant could become so prophetic. Part 4: Discharge Along came the day when we were finally able to bring our son home. He had only been holding his own temperature for a little less than 24 hours and had been having bradychardias and apnea spells, but for some reason, they felt that we would be competent enough to handle him at home. Before we could leave though, we had to be versed on infant CPR and how to revive him should he not recover from the apnea. He would then be released to us on an apnea and heart rate monitor that would continuously track his heart rate and his breathing. We also had to have a meeting with his neurologist. I was seated in the waiting room when his neurologist came to see me. He told me that my son’s brain injury was unpredictable. That there are children who have mild PVL who are severely effected and those who have severe PVL and are effected mildly. My son would have a 70-80% chance of developing cerebral palsy, was high risk for developmental delays and behavior issues. He told me that since his injury showed up so clear on the brain scan that it was likely that the brain injury occurred weeks before I was ever in the hospital. That the time before he was delivered was probably not the first time he had tightened the cord around his neck. In fact, he was showing signs of the brain injury right away in the NICU. His breathing was erratic, his heart rate would change constantly going from extremely slow to fast again and that a baby of his weight (almost 5 pounds) should have been able to hold his temperature much better. All of that didn’t leave us with much hope. I just wanted to get my baby home and forget all the medical crap. I left the hospital with my son at almost 9:30 that night. Driving home I wondered what the future held for the tiny sleeping baby in the back of my car. Parts V & VI, The First Year and the Turning of One Part VII, The Turning of two  |
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