Update on Baby # 2
Normally I wouldn't use my blog to post such personal things, but I feel like this might be the best way to keep everyone informed on what's going on with our latest addition. For those of you who are just finding out about what's going on, I will start from the beginning.
While Savannah and I were in Colorado I received a phone call from my OB stating that the results from our Quad Screen blood test came back with high numbers for a Neural Tube Defect. We moved up our anatomy scan from August 21st to August 12th so he could confirm or excuse the results. His office also made an appointment with a High Risk Doctor in Huntington for the 15th as well. On August 12th I went in for the ultra sound and my OB could not find the defect, but could tell there was pressure on the baby's brain and her ventricles were dilated. He was concerned the defect could be brain based, but wouldn't commit to that prognosis until after I went to the High Risk Doctor.
On the 15th I went with my Sister in Law to the High Risk Doctor. He did confirm that the baby has an opening in the base of her spine and it's leaking spinal fluid. The leak was causing what's called a Hindbrain Hernation or Chiari Malformation where the Cerebellum is pulled by the spinal chord down into the top of the neck, creating pressure on the brain and preventing spinal fluid from the ventricles to move down into the spine. The Doctor mentioned a fairly new procedure that could be done in utero to repair the hole and possibly the Hindbrain Hernation/Chiari Malformation. To be sure we would need to go to Children's Hospital in Cincinnati to have an Ultrasound, MRI, and Fetal EKG done to see if we were candidates.
On the 29th Jonathon and I were up in Cincinnati where I had all of the tests done. We also met with a Genetic Counselor, our assigned Caseworker and Nurse, as well as the Director of the Spina Bifida Clinic. We were given a lot of literature on Spina Bifida and what we could expect to be confronted with in the way of special care for our little baby. The next day we had a team meeting with several doctors to discuss the findings of the test and to find out if we were candidates for the surgery. Luckily we are candidates for the surgery. The MRI confirmed that the hole starts at her L3 vertebrae and continues all the way down her back. Each doctor spoke generally of what they thought the results meant, and what our options are. They also informed us of what we could expect in the way of delays and disabilities once our baby is born.
The next step towards the surgery requires Jonathon and I to go back to Cincinnati next Wednesday to meet with a new team of doctors who will give us a detailed list of all the risks associated with the surgery, both for myself and for the baby. If after hearing what they have to say we still want to proceed with the surgery, we will set up meetings with the actual medical team who will perform the surgery. I'm very confident that the surgery will be our baby's best chance at a having as close to a normal life as possible.
From here on out I will be using the blog to keep everyone updated with the latest news. Any prayers or positive thoughts are greatly appreciated.
While Savannah and I were in Colorado I received a phone call from my OB stating that the results from our Quad Screen blood test came back with high numbers for a Neural Tube Defect. We moved up our anatomy scan from August 21st to August 12th so he could confirm or excuse the results. His office also made an appointment with a High Risk Doctor in Huntington for the 15th as well. On August 12th I went in for the ultra sound and my OB could not find the defect, but could tell there was pressure on the baby's brain and her ventricles were dilated. He was concerned the defect could be brain based, but wouldn't commit to that prognosis until after I went to the High Risk Doctor.
On the 15th I went with my Sister in Law to the High Risk Doctor. He did confirm that the baby has an opening in the base of her spine and it's leaking spinal fluid. The leak was causing what's called a Hindbrain Hernation or Chiari Malformation where the Cerebellum is pulled by the spinal chord down into the top of the neck, creating pressure on the brain and preventing spinal fluid from the ventricles to move down into the spine. The Doctor mentioned a fairly new procedure that could be done in utero to repair the hole and possibly the Hindbrain Hernation/Chiari Malformation. To be sure we would need to go to Children's Hospital in Cincinnati to have an Ultrasound, MRI, and Fetal EKG done to see if we were candidates.
On the 29th Jonathon and I were up in Cincinnati where I had all of the tests done. We also met with a Genetic Counselor, our assigned Caseworker and Nurse, as well as the Director of the Spina Bifida Clinic. We were given a lot of literature on Spina Bifida and what we could expect to be confronted with in the way of special care for our little baby. The next day we had a team meeting with several doctors to discuss the findings of the test and to find out if we were candidates for the surgery. Luckily we are candidates for the surgery. The MRI confirmed that the hole starts at her L3 vertebrae and continues all the way down her back. Each doctor spoke generally of what they thought the results meant, and what our options are. They also informed us of what we could expect in the way of delays and disabilities once our baby is born.
The next step towards the surgery requires Jonathon and I to go back to Cincinnati next Wednesday to meet with a new team of doctors who will give us a detailed list of all the risks associated with the surgery, both for myself and for the baby. If after hearing what they have to say we still want to proceed with the surgery, we will set up meetings with the actual medical team who will perform the surgery. I'm very confident that the surgery will be our baby's best chance at a having as close to a normal life as possible.
From here on out I will be using the blog to keep everyone updated with the latest news. Any prayers or positive thoughts are greatly appreciated.
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