10:45am- Appointment with Neurology/ Neurosurgeon at Children's Hospital
The hospital is amazing with so many colors, hardwood floors, decorations hanging from ceilings, video games everywhere (which were shut down for flu season), flat screen tvs with cartoons on, brightly colored world maps on the walls, and of course the taste of Cincinnati down in the food court (Gold Star Chili, Greaters Ice Cream, Larosa’s Pizza....and Starbucks.)
However, walking through the halls caused a flood of emotion. There were kids with masks on and with their hair gone from Chemo Therapy. It broke my heart. It really put things in to perspective and made me greatful for our situation. On the other hand, there were little 4 year olds walking around with walkers instead of riding in wheelchairs. Though I don’t know, I assumed these children had Spinal Bifida, and the walker is one of our hopes!
We met with the Neurosurgeon after talking with the nurse and then the physicians assistant. The neurologist had our MRI which we looked at on a screen and discussed. I asked, what felt like, a million questions. She was excellent at explaining everything. (Side note: All of the Drs that we have met with so far have explained things in a way that we understand without talking down to us. They always ask what we know first so that they do not repeat something that we already know. They have been WONDERFUL!) One of the first things she informed us of was that the baby does in fact have the more severe form (and most common) of Spina Bifida, Mylomenigicele and not the more minor form of called Menigincele. This means that there IS part of the spinal cord in the lesion, thought it is only a small part. We knew this from the ultrasound a couple of weeks ago, however, they were unable to see the Cerebellum in the ultrasound. So, another trait of Mylomenigicele is Arnold Chiari Type II. Arnold Chiari Type II is when the Cerebellum ( the nut shaped part in the back of the brain) is pushed down into the spinal column. Our baby is missing the membrane and fluid surrounding the cerebellum, which then allows for it to be pulled into the spinal column. There are a wide range of side effects to this defect. Some babies have the their cerebellum flattened and pulled half way down their spine, and they have no side effects. At the same time, there are babies who have the cerebellum just sitting on top of the spine who have trouble with apnea, swallowing, and tightened vocal cords. There is a small percentage of babies that do not survive. SO, the doctors can’t tell us exactly what this means for us, we will have to wait and see. Right now baby girl doesn’t have hydrocephalus (fluid on the brain), and the ventricles look normal, but this can change at anytime and can happen up to a year after she is born. Hydrocephalus often occurs after the lesion is closed because the spinal fluid no longer has a place to go. They fix this with a shunt placed directly under the skin on the top or back of the head. This then runs from the ventricles in the brain all they way down to the bladder where the fluid is released. Shuts often get infected and clogged, and have to be replaced numerous times throughout life with surgery. SO, we are praying that we won’t have to get a shunt.
We spent an hour and a half with the neurosurgeon which made us late for our next appointment at 11:45am with the Developmental and Behavioral Pediatrics doctor, Dr. Sonya Oppenheimer. (Amy, she wrote the book that you lent me!) After an hour long goose chase of trying to find the Dr. we met with a different Dr at the same office. She met with us, since we will be visiting there A LOT once the baby is born.
1pm: (late) Social Services
Discussed bills, support groups, and benefits for children with disabilities.
1:30pm (late) consultation with nurse
Have a 4% chance that we will have another baby with spina bifida so we will get a prescription for Folic Acid when we think we are going to have another baby. Also, it increases the chances that other family members will have babies with the same defect. (We ate Gold Star, Greaters and Starbucks while in the meeting because we have NO other time to eat! Kuddos to Paul!)
3pm Team Meeting with Dr. Polzin, and 10 other people involved in process, including 4 other Drs.
We again went over the MRI but had no gotten the official report from the radiologists. With our last ultrasound, they had thought that the lesion was covered with skin. After the MRI they realized that the lesion just has a think lining and is only partly covered by the skin. The thickness is good, because it keeps the lesion from leaking. Our ultrasound will be scheduled for 39weeks (I turn 39 weeks on Thanksgiving Day). I won’t be able to hold the baby until after her surgery. They will transport her from Good Samaritan Hospital to Children’s Hospital within a couple of hours of birth once she is stable. The surgery to close her lesion will be between 24 and 48 hrs after birth, as long as there are no emergencies. (They would operate earlier if the cyst is leaking spinal fluid.)
With the MRI they were able to pin point the lesion. It is at the L4 part of the spine. (Lower lumbar region) This affects the muscles from the knees down, but again does not rule out the muscles above that. Even though the lesion is this low, the bladder and bowels are usually affected. Babies/ children are usually put on a “bladder program” which often includes drugs, catheters and maybe even a tube that goes from the bladder through the abdomen to the outside.
When the baby is born they will do LOTS of tests. The goal is to retain all movements, muscle mass, etc. for her entire life.
If everything goes well, baby will be out of the hospital within one to two weeks. I will be in the hospital btwn 2-4 days. They hopefully will give me a pass to visit baby at the other hospital. No one under the age of 14 is allowed in either of the hospitals because of the flu, so I am REALLY going to miss my little Eva!
This is a LOT of information! I thought I would keep this as a journal at the same time as keeping you updated, hence all of the details. Thanks for reading!
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