Where do I begin? I am not really a blogger, so please forgive me if this is a little raw; however I really wanted to have a way to share our information with everyone because we know we have a lot of supportive people surrounding us and it is a little difficult to keep everyone in the loop right now.
Wednesday Austin and I were scheduled for our routine ultrasound at the OB's office for our 20 week appointment. We are excited to announce that we very quickly learned that we are having another BOY!! This news, however, was quickly followed by some disappointing news. Our baby has Spina Bifida as well as fluid on his brain (which is very common for kids with s.b.). Basically what this means is that part of his spine did not close during development and part of his spinal cord/nerves are protruding out through his back. It is kind of like a zipper that has not fully closed. The level of his lesion is at the L5/sacral area which is usually a pretty good prognosis. Most kids/people with lesions at this level can walk with the assistance of leg/ankle braces and sometimes with the help of a walker or crutches. However, every case is different. His fluid is at a mild point as of now, but this can constantly change. He may need a shunt after he is born to manage this fluid.
So needless to say this week has been a very busy week. We were sent to a maternal fetal specialist last Friday where we had another Ultrasound and we will continue to be followed by them for the remainder of our pregnancy as well as by our OB who we love, Dr. LaGrand. We also have three appointments tomorrow. I have an appointment at the Maternal Specialist office to have an amniocentisis done in order to rule out any other genetic disorders or anomalies (this is also a requirement for the clinical trial we are trying to be connected with). We also have one with a pediatric neurosurgeon who hopefully will be able to tell us more information as to what to expect in the future and with prognosis (although, again a lot is unknown). Lastly we have an appointment with the head physician at West Michigan's Spina Bifida clinic at Mary Free Bed hospital and Rehab center to discuss what treatment typically looks like and to hear a little more about what life might be like for people with this diagnosis. So tomorrow will be busy, but as you may imagine Austin and I are knowledge seekers and we feel knowledge is power and will help drive the decisions that we make throughout this process. We have also been doing a lot of our own research via the internet and we are looking into being part of a clinical trial that has been performing intrauterine surgeries on babies with Spina Bifida. They are finding that in some cases the earlier the surgery is performed (in this case while in utero) the less chance that the baby will require a shunt for the hydrocephalus. We are hoping that we will be able to make an informed decision within the next few weeks because the surgery would need to be done before the 25th week of pregnancy. This would mean traveling to one of the three hospitals that are performing the surgery in the nation, which are Vanderbilt (Nashville, TN) University of California San Fran. and Children's Hospital of Philadelphia. This is a randomized study however, so we would not be able to choose where we go and also because it is a study if we decide to participate we would only have a 50/50 chance of getting the intrauterine surgery as they are comparing prenatal versus postnatal closures.
Words cannot describe what we are feeling/going through right now. All of the what ifs, and I wonders. Emotionally it has been draining. This is not what we expected nor planned and it is breaking our hearts. We are trying to stay positive, but regardless there are so many thoughts that run through your mind.
We would like to let everyone know that we appreciate your thoughts and are so very thankful that we have such awesome family and friends. We will try to keep everyone updated, but hopefully you will understand that it is very difficult. As you would imagine Zander is one of our biggest priorities at this point and we are still very busy living life with him and trying to enjoy every second with him and not to disrupt our time with him either. We are preparing for the worst, but also hoping for the best at this point.
Kelly
Happy 6th Birthday Jovie!
5 years ago
