I spent the night in the hospital, away from my baby. The next morning, as waves of consciousness washed over me, I thought, for those few blissful moments, that everything was alright. I was still pregnant and everything was alright. A few moments later I opened my eyes and it all hit me like a dump truck of bricks.
I knew my baby was in Children’s Hospital of Wisconsin and, from the phone call from the hospital the night before, she had settled in well. There was nothing for me to do in a hospital 40 miles away. I wanted to be with my baby. I wanted to find out what was wrong and what I could do to make her life all it could be. They had given me the number to the NICU and I called it right away. They informed me she was doing well, but she was an ornery little girl. They told me she had pulled out all of her tubes, iv’s, etc. They had to shave a portion of her head (yes, she had thick beautiful brown hair – and it was long in the back!) to insert an iv into her head. I remember half laughing at her my daughter’s antics and half crying about the still unknown situation we faced.
My obstetrician came in later in the morning and fully understood that I wanted to be released and wanted to be with my baby. He informed me, before signing my discharge papers, that he reviewed every ultrasound I had during my pregnancy looking for something that would indicate my baby was going to be born with exstrophy. He said the way the pictures were taken and the way she was positioned there was just no way to see it. That may or may not be true, but at this point I figured what happened, happened and we will learn to deal with it.
A nurse came in and gave me my discharge papers, a prescription for pain meds, and the new baby packet. It contained the card with my daughter’s footprints on it, coupons for baby items, a pacifier, a soft baby book, and the memento birth certificate. I looked at the memento certificate and saw that they left the “sex” of the baby blank. The nurse saw me looking at the certificate and again indicated, “We cannot mark the sex of the baby because we don’t know.” I thought to myself, yeah, you and everyone else in this hospital have said that. The packet was also supposed to come with a little baby bracelet, beaded in either blue or pink beads, reading either “boy” or “girl”. They had omitted that altogether.
When we left there were no Congratulations or good wishes that I had anticipated for the last nine months. It was, “I’m sorry” and “Good Luck” said solemnly and with pity. It was at that point that I said to myself I will not allow my daughter’s life to be filled with “I’m sorry” and pitiful “good luck” wishes and glances. She was beautiful and she was feisty. With all the problems I had during my pregnancy (almost miscarrying at 9 nine weeks among other things) and now with the complications she was born with, she was still fighting and giving the NICU at Children’s Hospital hell. If she was going to fight so was I and I decided that she was going to be all that she could be. At that point, I was not sure what that was, how much she could do, or quite frankly, how long she would be around to do it, but she was going to be all that she was set on this earth to be.
What I found at the Children’s Hospital of Wisconsin was miraculous. Up until that point in my life, I had never had any reason to experience the inside workings of a major medical center, especially an NICU. The monitors, machines, beeps, buzzes, wires, tubes, incubators, warming lights and many other forms of equipment met us. The smell was medicinal and chemical. I’ll never forget that smell. The incubators stood in rows and some of them were covered with baby blankets and quilts, but some were open and you could see the tiniest little beings grasping on to life. I tried not to look, because really all I wanted to see was MY baby.
She was toward the back and when I came up to her incubator I was surprised. Not shocked as the nurse told me some of what to expect but still surprised. She had an ng (nasogastric) tube, and the iv in the side of her head. She had little arm boards on as she was being ornery about pulling at her tubes. She was supposed to be covered with a blanket or quilt, but as she was to become known for, she had kicked them off. Her exposed bladder was covered with a dressing and she had a catheter inserted. She had a diaper fastened loosely around her waist but I think it was more cosmetic because she had no openings down below (no anal or vaginal opening) except one tiny one sitting about an inch below her exposed bladder where they had the catheter inserted. She was awake and alert when we got there and was taking in all of her surroundings.
We were allowed to visit with her awhile and then the information barrage started. They told us what tests they had run and what they knew upon initial examination. I got to talk to the genetics Dr. (the Dr. not the residents on duty during the weekend) though and finally someone told me that my daughter’s condition was not fatal. She was going to make it!!! He said that it was too early to tell the degree of exstropy she was born with as everyone was still examining x-rays and ultrasounds but that she was going to make it. That was another time where I felt myself let out my breath when I hadn’t even realized I had been holding it. I remember him telling me, the concern should not be whether or not she is going to have a life because she will. The question was what quality of life she will have based on the severity of her condition. I made him repeat it again. I don’t really know why other than to re-enforce in me that my daughter was going to have the best quality of life that I could provide her with her current condition. We were not going to be beat down by this. We were going to learn and grow with this and make the best we could out of it.
Did I still have those “lost” dreams of a healthy child? Yes, they crept up here and there especially as we entered more and more surgeries but I didn’t dwell on them. My job, as I saw it, was to arm myself with the strength, knowledge and the tools necessary to provide my daughter with the love, support, knowledge and tools in order for her to have the best quality of life she could have in spite of her condition.
The other memorable moment I remember about talking with the genetics Dr. was the question of why did this happen? I hounded the man with everything I could think of. I asked about the foods I ate, the medications I took, the work environment I was in, the water, the air, the area I lived in, what I used to clean the house, the activities I participated in, the color of the sky, whatever entered my mind as to what I possibly did to cause this. He assured me that NOTHING environmental “caused” this condition. IT WAS NOTHING I DID. AND THERE WAS NOTHING I COULD HAVE DONE TO PREVENT IT.
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