Avery Alexandra was born on October 14, 2009. She has had many health issues to battle in her short life and this blog is for our family and friends to stay updated on her progress. We also want to document this process for other families to view who may be going through the same experience. We thank you all for your continued love & support..♥♥
Thursday, December 31, 2009
Wednesday, December 23, 2009
She believes that the tumors and SVT have nothing to do with her other issues. She also believes (as do many of the other doctors) that the tumors are benign and not ominous at this time. The issue will be if they are growing. Our MRI is scheduled for January 4.
The Craniofacial Plastic Surgeon told us during the appointment that he put in the paperwork for surgery and suggests doing it around March/April.
Thursday, December 17, 2009
We scheduled the MRI for January 4, 2009, at which time we should know if the tumors are growing or not.
Monday, December 14, 2009
Sunday, December 13, 2009
Craniosynostosis is a condition in which one or more of the fibrous sutures in an infant skull prematurely fuses. This results in restricted skull and brain growth. Because the brain can not expand in the direction of the fused suture, it is forced to grow in the direction of the open sutures, often resulting in an abnormal head shape and facial features. This is why her right eye appears to be bulging.
The only way to fix this is by doing a craniotomy. This will likely need to be done when she is around 6 months of age for optimal results. Her head will be cut open from ear to ear with a zigzag incision over the top of her head. Then they will peel back her scalp, separate the skull into several pieces, reshape the skull, and put it back together with dissolving plates and screws. Her eyes will be swollen shut for 3 days, and her head will also have major swelling & bruising. She will remain in the hospital during this time.
We are not looking forward to this time in our life, but looking forward to resolving one of her medical issues. The surgery has been done by our team of surgeons many times, and 85% of the time has optimal results.
She was born on October 14, 2009 (7lbs 9oz) with no signs of SVT. She was in the NICU for her first day of life to be monitored. At 1 week old she had a Echocardiograph and EKG and was officially cleared of her heart condition.
At 2 days old, she was diagnosed with Unilateral Proptosis (bulging right eye). She had ultrasounds done on her eye and brain. No cause was determined and we were referred to specialists.