denise rast
07-06-2008, 01:24 PM
Alexa Lena Rast was born on September 27th 2007. She was beautiful with a full head of hair. The day after she was born I noticed a crease across her nose and one eye seemed to always be open more then the other. I asked the nurses about it and they said it was from the birthing process. I have a 3 ½ year old also and she wasn’t squished from birth. I asked the Pediatrician that they sent to the Hospital and he too said it was from birth and that I don’t need to worry about it. My husband, my parents, my family, me friends, all told me I was “over paranoid” and not to worry about it. But I knew something wasn’t right.<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>
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After one week I called the nurses station at the hospital and questioned why it wasn’t changing. They told me if I was that worried to take her to her Pediatrician. She had her 2 week check up coming up but I didn’t want to wait. Our Dr. wasn’t available so we saw Dr. Scott Yang, he immediately noticed that her face was asymmetrical and told me he was sending her to a Neurologist. (Needless to say he became my children’s Peditrician). A few days later we were in the bay area meeting with her Neurologist. She looked at Alexa and did some testing, she said that her motor skills were great and that her face could be due to muscle or nerve damage. She wanted us to keep an eye on her for 2 weeks and bring her back. She wanted to do an MRI, but they won’t do that on babies under one month due to the fact that they have to sedate them. So two weeks later we were back in her office with no changes for the better, she was looking worse to me and one side of her forehead looked like it had a bump. She sent us to have a X-Ray across the street and told us she would call us in a few days after she sees the X-Ray.<o:p></o:p>
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The next day she calls and asks me to sit down, I knew it wasn’t good. She started telling me that my daughter’s skull was fused together and this was called Craniosynostosis. She said Alexa would need surgery to correct the problem. I think in that conversation I heard about every third word. I was in shock and all I could think of was “my baby has to have surgery on her skull”. I lost it. I called my parents and they came right over. I become almost obsessed with finding everything out about this disorder. That’s how I found this web site and the Children’s Craniofacial Association site. <o:p></o:p>
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Well my daughter’s surgery was scheduled 3 times (due to emergency surgeries that came in she was postponed twice). She finally had her surgery done on June 24<SUP>th</SUP> 2008. It was an amazingly stressful day and I dreaded handing her off to the anesthesiologist. But she went with a smile. I ran out of the hospital and broke down. We had lots of family there with us that day. The surgery was 8 hours skin to skin. The longest day of my life. We had hundreds and hundred of people praying for us and somehow through it all I felt a sense of peace. I knew God was in that OR and his hands were in control. <o:p></o:p>
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When we got to go up and see her, I had been prepared for what I would see, the mothers on this site and some other ones had shown me pictures of their children so I wasn’t shocked to see her face so extremely swollen. The Neurosurgeons said the surgery was an amazing success. She did wonderful, she was taken off of the breathing tube right away and her swelling was less than the normal swelling of a child with this procedure. She was eating after a few days and one of her eyes never completely swelled shut. There was just a slit opening but she could still see us and I know this was comforting to her. She was a trooper and we are so proud of her and blessed that God was with her. <o:p></o:p>
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She has been home now for 2 weeks exactly and her head still has the medical tape and gauze covering the stitches but her wrap came off the next day. She is beautiful and we are so happy that this journey has ended, praying the healing and the fusing will be a success. <o:p></o:p>
<o:p></o:p>
God is good!!!!
<o:p></o:p>
After one week I called the nurses station at the hospital and questioned why it wasn’t changing. They told me if I was that worried to take her to her Pediatrician. She had her 2 week check up coming up but I didn’t want to wait. Our Dr. wasn’t available so we saw Dr. Scott Yang, he immediately noticed that her face was asymmetrical and told me he was sending her to a Neurologist. (Needless to say he became my children’s Peditrician). A few days later we were in the bay area meeting with her Neurologist. She looked at Alexa and did some testing, she said that her motor skills were great and that her face could be due to muscle or nerve damage. She wanted us to keep an eye on her for 2 weeks and bring her back. She wanted to do an MRI, but they won’t do that on babies under one month due to the fact that they have to sedate them. So two weeks later we were back in her office with no changes for the better, she was looking worse to me and one side of her forehead looked like it had a bump. She sent us to have a X-Ray across the street and told us she would call us in a few days after she sees the X-Ray.<o:p></o:p>
<o:p></o:p>
The next day she calls and asks me to sit down, I knew it wasn’t good. She started telling me that my daughter’s skull was fused together and this was called Craniosynostosis. She said Alexa would need surgery to correct the problem. I think in that conversation I heard about every third word. I was in shock and all I could think of was “my baby has to have surgery on her skull”. I lost it. I called my parents and they came right over. I become almost obsessed with finding everything out about this disorder. That’s how I found this web site and the Children’s Craniofacial Association site. <o:p></o:p>
<o:p></o:p>
Well my daughter’s surgery was scheduled 3 times (due to emergency surgeries that came in she was postponed twice). She finally had her surgery done on June 24<SUP>th</SUP> 2008. It was an amazingly stressful day and I dreaded handing her off to the anesthesiologist. But she went with a smile. I ran out of the hospital and broke down. We had lots of family there with us that day. The surgery was 8 hours skin to skin. The longest day of my life. We had hundreds and hundred of people praying for us and somehow through it all I felt a sense of peace. I knew God was in that OR and his hands were in control. <o:p></o:p>
<o:p></o:p>
When we got to go up and see her, I had been prepared for what I would see, the mothers on this site and some other ones had shown me pictures of their children so I wasn’t shocked to see her face so extremely swollen. The Neurosurgeons said the surgery was an amazing success. She did wonderful, she was taken off of the breathing tube right away and her swelling was less than the normal swelling of a child with this procedure. She was eating after a few days and one of her eyes never completely swelled shut. There was just a slit opening but she could still see us and I know this was comforting to her. She was a trooper and we are so proud of her and blessed that God was with her. <o:p></o:p>
<o:p></o:p>
She has been home now for 2 weeks exactly and her head still has the medical tape and gauze covering the stitches but her wrap came off the next day. She is beautiful and we are so happy that this journey has ended, praying the healing and the fusing will be a success. <o:p></o:p>
<o:p></o:p>
God is good!!!!