Olivia - A Mini History :)
I realized I did not really talk a lot about what Olivia was born with and what she has been going through so here you go.
As I have already shared Olivia was born late July. Not only was she born with 10 adorable fingers & 10 cute toes but also with Spina Bifida, Hydrocephalus and Clubbed feet as well.
We have a facebook page to keep anyone interested updated on Olivia's progress: "Team Livie Lu". It is currently by request only but is searchable so feel free to ask to join if you would like to know more about Livie Lu's progress through Spina Bifida. At some point we will probably make it public but are not ready to make that leap yet.
Our story:
At 16 weeks of pregnancy my SO & I were in our 4 month visit and our sonographer shared with us some news neither of us will forget, we were having a baby girl! We could not be happier and were so ecstatic! Within 2 minutes after saying we were having a baby girl she had also shared something else that will also resonate in our heads forever - your baby girl looks like she will be born with Spina Bifida. It was definitely a difficult time for both of us but one that would alter our perception of the world as we know it - as most children do
We are in absolute love with this little girl and are in constant awe of her strength, attitude, determination and "rockstar" capabilities. She is pushing the boundaries of SB already!
Info on Olivia and her Spina Bifida:
Spina Bifida means that a portion of her spinal cord actually grew outside of her back during her gestation. Olivia was born with the type of SB that also grows a cyst that formed over her exposed spinal cord as sort of a protective barrier. It was located at the L4/L5 vertebrae but we are not using that as a label so you will not see me use it very often. This causes many concerns for permanent nerve damage, lower extremidy usage (including walking) and bowel/ bladder function.
Hydrocephalus is when the body does not drain spinal fluid from the brain on it's own. This can cause pressure on the brain and possible learning impairment or loss of brain function.
Club foot is where one or both feet (both in our case) are rotated inwards and affects the child's ability to walk with both feet flat to the ground.
Olivia's Surgeries and Procedures:
When she was born she was immediately taken from the birth hospital to a neighboring children's hospital (right across the street).
Less than 24 hours after Olivia was born surgery was performed on her spinal cord to basically tuck in her spinal cord and close the hole in her back. This contributed to a 4" long incision that is still healing 8 weeks later.
4 days after she was born a shunt was inserted from her skull to her lower intestine to drain the spinal fluid from her brain that was causing pressure based on the hydrocephalus. This incision has healed beautifully and the hair is growing back where they had to shave it off
She was in the Children's Hospital NICU for 10 days where she made a strong enough recovery to come home! Yay!
At 6 weeks Olivia was seen by an Orthopedic Surgeon and was given casts on her little legs to correct the club foot she was born with.
At the 3 month mark Olivia will start going to the Children's Hospital Spinal Defects Clinic where one of the best Spinal teams in the country will help fully diagnose the affects of the SB and Hydrocephalus and next steps for therapy. This will include a diagnosis on hip/leg movement, ability to walk and bowel/ bladder function as well as asses her learning abilities which can be affected by the Hydrocephalus.
Well that is it! The whole kitten caboodle So if you read all of that craziness thank you and we thank you for being a part of our lives!
We have a facebook page to keep anyone interested updated on Olivia's progress: "Team Livie Lu". It is currently by request only but is searchable so feel free to ask to join if you would like to know more about Livie Lu's progress through Spina Bifida. At some point we will probably make it public but are not ready to make that leap yet.
Our story:
At 16 weeks of pregnancy my SO & I were in our 4 month visit and our sonographer shared with us some news neither of us will forget, we were having a baby girl! We could not be happier and were so ecstatic! Within 2 minutes after saying we were having a baby girl she had also shared something else that will also resonate in our heads forever - your baby girl looks like she will be born with Spina Bifida. It was definitely a difficult time for both of us but one that would alter our perception of the world as we know it - as most children do
We are in absolute love with this little girl and are in constant awe of her strength, attitude, determination and "rockstar" capabilities. She is pushing the boundaries of SB already!
Info on Olivia and her Spina Bifida:
Spina Bifida means that a portion of her spinal cord actually grew outside of her back during her gestation. Olivia was born with the type of SB that also grows a cyst that formed over her exposed spinal cord as sort of a protective barrier. It was located at the L4/L5 vertebrae but we are not using that as a label so you will not see me use it very often. This causes many concerns for permanent nerve damage, lower extremidy usage (including walking) and bowel/ bladder function.
Hydrocephalus is when the body does not drain spinal fluid from the brain on it's own. This can cause pressure on the brain and possible learning impairment or loss of brain function.
Club foot is where one or both feet (both in our case) are rotated inwards and affects the child's ability to walk with both feet flat to the ground.
Olivia's Surgeries and Procedures:
When she was born she was immediately taken from the birth hospital to a neighboring children's hospital (right across the street).
Less than 24 hours after Olivia was born surgery was performed on her spinal cord to basically tuck in her spinal cord and close the hole in her back. This contributed to a 4" long incision that is still healing 8 weeks later.
4 days after she was born a shunt was inserted from her skull to her lower intestine to drain the spinal fluid from her brain that was causing pressure based on the hydrocephalus. This incision has healed beautifully and the hair is growing back where they had to shave it off
She was in the Children's Hospital NICU for 10 days where she made a strong enough recovery to come home! Yay!
At 6 weeks Olivia was seen by an Orthopedic Surgeon and was given casts on her little legs to correct the club foot she was born with.
At the 3 month mark Olivia will start going to the Children's Hospital Spinal Defects Clinic where one of the best Spinal teams in the country will help fully diagnose the affects of the SB and Hydrocephalus and next steps for therapy. This will include a diagnosis on hip/leg movement, ability to walk and bowel/ bladder function as well as asses her learning abilities which can be affected by the Hydrocephalus.
Well that is it! The whole kitten caboodle So if you read all of that craziness thank you and we thank you for being a part of our lives!
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