Autumn was born with spina bifida on September 22, 2008. She has myelomengocele with level L4-L5, hydrocephalus with a VP shunt, and a severe Chairi II malformation. Complication from the AC II malformation has caused her to have central apnea and ventilator dependent. After a failed decompression surgery it was decided that she would need a trach. At almost 2 months old she received her trach and Mickey button. Only a couple of weeks after trach surgery she started nipple feeding and LOVES her bottles. So, we are no longer using her Mickey button and she is just now learning to spoon feed baby food. After 4 months in the hospital we were finally able to bring our baby girl home!!! She has been doing great since being home and we expect her to need the trach and vent for 4-5 years. She has the greatest personality and always content. She has been a wonderful blessing to our family.
Hi, you have done a fantastic job on your daughter's homepage and blog! I can't believe how similar your family's story is to ours. We have not tried the decompression surgery yet. We decided to wait until our son is a little bigger - he is seven months, so just a little older than your daughter. He still is unable to protect his airways, so he has his JG-tube. Did I understand your blog correctly - you don't have nursing until summer? Does someone need to be awake with your daughter 24 hours a day? Our insurance has started to cut our nursing hours, but even with all the alarms, I'm nervous to sleep without having a nurse with him. My husband and I both work, so it has been interesting to figure out which hours each day work best for us to not have a nurse in our home. I hope you don't mind the long message and questions - I just haven't met anyone yet with a story so similar to ours!
Best wishes for you and your family!
Melissa Methner mmsolos@hotmail.com
Your Homepage
Hi, you have done a fantastic job on your daughter's homepage and blog! I can't believe how similar your family's story is to ours. We have not tried the decompression surgery yet. We decided to wait until our son is a little bigger - he is seven months, so just a little older than your daughter. He still is unable to protect his airways, so he has his JG-tube. Did I understand your blog correctly - you don't have nursing until summer? Does someone need to be awake with your daughter 24 hours a day? Our insurance has started to cut our nursing hours, but even with all the alarms, I'm nervous to sleep without having a nurse with him. My husband and I both work, so it has been interesting to figure out which hours each day work best for us to not have a nurse in our home. I hope you don't mind the long message and questions - I just haven't met anyone yet with a story so similar to ours!
Best wishes for you and your family!
Melissa Methner
mmsolos@hotmail.com