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We were so excited to be expecting our second baby, everything went well through-out my pregnancy, I did not even have morning sickness.
I do remember one day where I didn't feel the baby move. I came home from work and called my Doctor right away. They told me to lay on my side and if the baby moves 9-10 times in an hour, the baby is fine.
I did this, and low and behold the baby moved 9 times.
The delivery of our first baby was quiet long (24hrs) so I was expecting a long delivery this time as well.
On October 13 1986, we delivered a gorgeous baby girl, 7LBS 10Oz. this time the delivery was only 10 hours long. I had both babies in the Hospital by mid-wives with no medication what so ever, both babies were full term.
Everything went well in the hospital the first night. The next morning I noticed that my baby girl had what looked like little freckles all over her face. I had asked the nurse about it and she told me that with babies that come through the canal fast can have bruises like this, but they will go away.
The 2nd day, I was resting in my room with my baby by my side in the little crib. I woke to her breathing hard and her eyes were very wide. I sat up in my bed and reached for the call button, but the time it took to reach for the button, she had stopped the heavy breathing. I took her out of her crib and thought to myself "Your just being a paranoid mom, that was not a seizure" I did not say anything to the Doctors or the nurse about the episode.
The little bruises were gone with-in a day or two. Then we noticed that she was becoming more Jaundice, we did a day of light therapy while in the hospital and then took the lights home with us. The jaundice did resolve itself with-in about a week.
Kiera did not take to the bottle well, she had a very pour suck. It took a lot of energy from her to get a feeding. She was 3 weeks old when we had some friends over, my friend was feeding my baby her bottle, she thought that my baby was starting to choke. I took my baby and right away knew that she was not choking, she was having a seizure.
She had three more right after another than night. They looked like a startle reaction that babies do, arms out, fingers spread, legs straight, and holding her breath.
We called the Doctor right away, they said to bring in the next morning ( I know, looking back we should have just brought her in the ER that night, but the reality is, even doing that would not have changed the outcome of Kiera's path in life)
The next morning we took her in, they decided to keep her for a few days to run some test. She had an MRI which came back normal, she had a EEG that showed some seizure activity. Then they tried to do a spinal tap but they were unsuccessful.
The outcome from these test showed that she had infantile Spasms. They told me that she would most likely grow out of them.
They sent us home with Phenobarbital.
As the days and weeks went on her seizures became much more severe and changed from IS (Infantile Spasm) to Myoclonic seizures. I remember sitting on the floor with her feeling so helpless as she had seizure after seizure, to the tune of about 100 per day.
We were then put on an add on drug called Dilantin, another seizure medication. We were still not seeing any change for the better with adding a new drug, seizures continued to change in their severity and duration.
At around 6-8 months of age she was diagnosed with hypotonia (low muscle tone through-out her whole body) so we started going to a day program for such issues.
She was a very quiet baby for her first year, then the long spells of crying began. This behavior went on until she was about 16 years old, and along the way was laughing spells too.
It was very apparent that this was not just a seizure disorder that she would grow simply grow out of.
- Skills I've gained, Hold my head up while prone ( for about 10sec)
- Diagnoses, Infantile spasms, myoclonic seizures low muscle tone (hypotonia), Jaundice, & a pore suck .
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