Sierra
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Sierra was born on November 28, 2004. She is my second child, she has an older brother Ryan. We had decided to be induced after we found out that Sierra had Craniosynostosis (where the sutures in her head closed too early). Being induced turned out to be a good thing, we had a team of doctors and nurses ready to take care of Sierra the minute she was born. The minute she was born Sierra had trouble breathing (her first apgar was a 2). She was whisked away to the NICU. It was six hours before I was able to see and hold her.
One of the nurses taking care of Sierra had to hold something in her mouth to keep her tongue from blocking her airway. It was then decided that she would have to be transported to a Children's Hospital where she was finally intubated. While in the NICU we learned Sierra had trouble breathing due to Crouzon's syndrome. Children with crouzon's syndrome facial bones do not grow enough and skull bones grow too fast. The facial bones were too far back to allow a proper airway.
On day ten Sierra underwent her first surgery a tracheostomy. Just hearing that your baby needs to have a trach is scary, but we also didn't want her to have to be hooked up to all the machines and tubes (which she didn't like...she extubated herself three times in ten days). We were finally able to bring Sierra home Christmas week when she was three weeks old after we learned how to take care of her and her trach. Although we had to bring her back the following week for a cranial surgery.
When Sierra was about 4 months old she started having problems breathing even with the trach. She stopped breathing 11 times in six weeks. After being scoped we found out that she had tracheamalacia, bronchomalacia, subglottic stenosis, a superstoma granuloma, and scar tissue. Thankfully, the steroids were able to shrink the granuloma and scar tissue. Since then she hasn't had any more problems breathing.
Sierra is now 3 years old and will have a lower jaw distraction this summer, June 04 (last summer she had a midface advancement) to help open up the airway. Sierra will most likely need to have a airway reconstructive surgery and then hopefully she can be decannulated after that.
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Christmas 2003
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Easter 2004
Update December 2005: Sierra made the 2006 Advanced Bionics Calendar (this is the company that made her cochlear implant). She is on the June page top row.
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Natasha~Mommy to~
Ryan (8/25/97) & *Sierra (11/28/00)
*Multiple Craniosynostosis, Crouzon's Syndrome,
Asthma, Trach, Tracheamalacia, Subglottic Stenosis,
Chonal Stenosis, FTT, GERD, G-tube & Nissan,
Profound hearing loss
Sierra's story:
www.cappskids.org/CAPPSCranioKidSierra.htm
http://www.caringbridge.org/oh/sierra/
