Marina's Page

 




 


 



Marina with Adriana. She just came to us January 17. She is very energetic and is keeping us very busy. They seem to enjoy each other's company, most of the time.
 

Photos updated!
First, I would like to thank all of you for sharing pictures and/or personal stories of your journeys with your special child.

My husband and I have been married for almost 15 years. On July 23, 1997, we welcomed our first son, Joshua Martin. He was a beautiful baby boy, almost 9 pounds. My labor was long and difficult, and unfortunately, Joshua suffered brain damage. He spent 45 days in NICU, and when he finally came home, we started to realize that he was going to be a very special little guy. He had a short and painful life, full with therapy and routine visits to his pediatrician and to the local emergency room.

 


 My husband was going to school at the time and I worked at a bank. Joshua had his own caretaker and went to day care and eventually school. His last year was his very best, he was now five and was attending school and day care, he had so many friends. Sadly, he died peacefully at home on November 28, 1992. We lived in Puyallup a small town south of Seattle. I quit my job and my husband transferred to the University of Arizona to complete his Mechanical Engineering degree. I do not remember much of the years that followed, I was deeply depressed, and I did not know what I could do with my life to fill the hole that the loss of my son had created.

 


The summer of 1996, I started school at a local community college, I had decided that I wanted to become a Nurse. Often, my husband tried to talk about having another child but I refused to even think about it. I was aware that children can be injured at birth, but they can also have many problems and I would not be able to handle another tragedy. I heard from so many people that the chances of us having another child with problem were minimal. We decided to go to Spain (that is where my whole family lives) to start the new millenium and when we came back to Tucson, we realized that we were having a baby. I had the best Obstetrician in town and to ease my fears, she agreed to deliver the baby by cesarean. We had routine sonograms, and we were told that the baby had a "huge" forehead but she was fine. 

 

On August 29 my 36 weeks gestation, my blood pressure was dangerously high, so my doctor decided to deliver the baby that day. The surgery went well and I finally saw Marina. My first thought was that perhaps the medication that I was given to prevent seizures (a possible outcome of the high blood pressure) was making me see things. My doctor told me that she was a beautiful baby but she had some anomalies on her hands. She was rushed to NICU because she was in respiratory distress; nobody said a word to me until I was moved to the recovery room. The neonatologist came and told me that Marina had Apert's syndrome. He also gave my husband and I, a photocopy with a brief description and a couple of pictures. I know that only you can imagine and know what we were feeling. She spent 6 days at the hospital while we commuted back and forth to hold her and feed her. My husband found Teeter's page and some information about Apert's.
Marina is now almost 6 months old, she had had one surgery on her hands to begin to separate the thumbs and the little fingers because the nail was growing into the nearby tissue and it was causing an infection. On the 21st of this month, she had another surgery to continue the reconstruction of the right thumb. She did extremely well, we have not seen the results yet, but we will post pictures as soon as possible. At this point, her doctor does not know what he will be able to do with the middle fingers.

The first craniofacial surgery is tentatively schedule for May of this year. She is doing well; our main concern right now is her eating. She eats enough but does not gain as much weight as she should. I am desperately anxious to get the surgeries over with, but very frightened.

 

This page was updated September 29,2007

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