About a week later, our genetic counselor called to give us the good news that the full amnio results were back and everything was "normal." Another sigh. We were scheduled for an ultrasound to check out our little guy on February 17, 2011.
As this date approached, I was excited and so very nervous. One of my new worries was hydrocephalus setting in. It seems that the longer fluid is pressing on the brain, the more brain damage occurs. I felt him moving and we were both growing. I just wondered what was happening in that tiny brain of his.
Each day brought worries, but I was enjoying my pregnancy again. It is all so amazing. I was seeing signs everywhere. Passing a church one day, I read what they had posted on their sign: "Worry does not take away tomorrow's sorrows. It only takes away today's strength." My new motto (well, most of the time!)
I continued to reach out to people: family, friends, strangers, people of faith, etc. I found comfort from each of them.
I have decided to enter the blogging world to keep family and friends updated on our journey. I have found strength in others' blogs about their Dandy-Walker experience, and I hope to help others.
Monday, January 31, 2011
Thursday, January 27, 2011
Fetal Brain MRI
Joe and I worked Tuesday, Wednesday, and a half day on Thursday of that week. It felt pretty good to be doing something "normal." It was also so very hard to try to pretend that things were okay. Just proves that no matter what you are going through, life goes on.
I was told not to eat or drink anything for 4 hours before the MRI. They needed baby boy to be as still and cooperative as possible. I was really worried about this. He had been a very active baby. Technicians would comment on how much he would move, flip, etc. I prayed that the radiologist would be able to capture clear images. I was a little panicked about the test. I was initially told it would take 2 hours to complete the test. I couldn't imagine being in that MRI machine for 2 hours! But, I knew I had to do it for my little guy.
He performed beautifully! The test only took 30 minutes. While laying there and breathing just as they were instructing me to breathe, I prayed that he showed us what he wanted us to know.
While I was putting my shoes on, the tech opened the door and I saw Dr. P. standing in the hallway. He was all smiles and waved. I didn't realize he was going to be present for the test. I just expected him to read the results. Have I mentioned how much I like this doctor? I practically ran to him. He told me that it was a beautiful study and that great images were captured! I informed him that I have been researching and contacting parents across the country to learn more about DW. He had no doubt.
I'll mention that here. I spent the days between meeting Dr. P. and the MRI researching DW and using blogs and facebook to learn information from parents of children with DW. Joe used the time to learn (well freshen up on) all he could about the brain and how it functions. I reached out to complete strangers, and many of them reached right back. It was amazing. One parent actually asked if I could call to talk about it. I did! He told me all about his amazing daughter and how well she was doing. We spoke for a long time and he said he was going to have his wife call me after work. She did! We spoke for a long long time. I asked her everything. We spoke about the technical things and the emotional things. It was so nice to talk with someone who knew what I was going through. I thank God for them.
So, back to the MRI. Dr. P. said the rest of our little guy's brain looks really good. The brain stem was fully formed and looked "normal." He thinks he has about 60% of cerebellar tissue (cerebellum), the cyst is about a size 2 or 3 with 10 being the largest, his corpus collosum is present, he didn't see the vermis, but I have learned since then that perhaps a sliver of vermis was spotted. He believes that based on the condition of the brain and that so far no other abnormalities have come about, our child would be on the end of the spectrum that is highly functioning rather than nonfunctioning. I smiled for the first time in a week. And, I wanted to eat. Joe ran to the hospital gift shop and got me pretzels! Joe asked Dr. P. if we could see the images. I had no clue what we were looking at, but the guys sure knew. More was discussed. We also had to realize that our boy was only 23 weeks along in life and that many things could change/develop before and after birth. We understood this, but we were going to ride this high wave for a little while! Dr. P. said I would continue to see my OB as I would for any other pregnancy and that I would be followed by the genetics department and the doctors of fetal maternal medicine. He plans to see our baby after birth, but he said we can contact him with any questions.
So much about this syndrome is unknown. Every scenario seems to be different. No one is able to predict exactly how babies, children, and adults with this condition will do. I have always been scared of the unknown. I have to fix things right away. I am a control freak. ALL of this was/is out of my control.
I was told not to eat or drink anything for 4 hours before the MRI. They needed baby boy to be as still and cooperative as possible. I was really worried about this. He had been a very active baby. Technicians would comment on how much he would move, flip, etc. I prayed that the radiologist would be able to capture clear images. I was a little panicked about the test. I was initially told it would take 2 hours to complete the test. I couldn't imagine being in that MRI machine for 2 hours! But, I knew I had to do it for my little guy.
He performed beautifully! The test only took 30 minutes. While laying there and breathing just as they were instructing me to breathe, I prayed that he showed us what he wanted us to know.
While I was putting my shoes on, the tech opened the door and I saw Dr. P. standing in the hallway. He was all smiles and waved. I didn't realize he was going to be present for the test. I just expected him to read the results. Have I mentioned how much I like this doctor? I practically ran to him. He told me that it was a beautiful study and that great images were captured! I informed him that I have been researching and contacting parents across the country to learn more about DW. He had no doubt.
I'll mention that here. I spent the days between meeting Dr. P. and the MRI researching DW and using blogs and facebook to learn information from parents of children with DW. Joe used the time to learn (well freshen up on) all he could about the brain and how it functions. I reached out to complete strangers, and many of them reached right back. It was amazing. One parent actually asked if I could call to talk about it. I did! He told me all about his amazing daughter and how well she was doing. We spoke for a long time and he said he was going to have his wife call me after work. She did! We spoke for a long long time. I asked her everything. We spoke about the technical things and the emotional things. It was so nice to talk with someone who knew what I was going through. I thank God for them.
So, back to the MRI. Dr. P. said the rest of our little guy's brain looks really good. The brain stem was fully formed and looked "normal." He thinks he has about 60% of cerebellar tissue (cerebellum), the cyst is about a size 2 or 3 with 10 being the largest, his corpus collosum is present, he didn't see the vermis, but I have learned since then that perhaps a sliver of vermis was spotted. He believes that based on the condition of the brain and that so far no other abnormalities have come about, our child would be on the end of the spectrum that is highly functioning rather than nonfunctioning. I smiled for the first time in a week. And, I wanted to eat. Joe ran to the hospital gift shop and got me pretzels! Joe asked Dr. P. if we could see the images. I had no clue what we were looking at, but the guys sure knew. More was discussed. We also had to realize that our boy was only 23 weeks along in life and that many things could change/develop before and after birth. We understood this, but we were going to ride this high wave for a little while! Dr. P. said I would continue to see my OB as I would for any other pregnancy and that I would be followed by the genetics department and the doctors of fetal maternal medicine. He plans to see our baby after birth, but he said we can contact him with any questions.
So much about this syndrome is unknown. Every scenario seems to be different. No one is able to predict exactly how babies, children, and adults with this condition will do. I have always been scared of the unknown. I have to fix things right away. I am a control freak. ALL of this was/is out of my control.
Monday, January 24, 2011
Appointment with Pediatric Neurologist
On Monday, January 24, 2011, we met with Dr. P., the pediatric neurologist. He confirmed that he saw a Dandy-Walker Malformation from the ultrasound. He asked us what we knew/what we had been told. I told him the scenario we had been presented with. He listened, really listened. We were educated about the brain and its functions especially pertaining to the cerebellum. (I forgot to mention that in my research over the weekend, I had learned of the importance of having a fetal brain MRI performed. I asked our genetic counselor about the possibility of this, and she said she'd see what could be done.) So, Dr. P explained the limitations of ultrasound and that he couldn't really tell us where our baby's condition stood without an MRI. I asked if we could have one performed. He said, "We're in the process of setting one up for you." I knew I liked him from the moment he walked in the room. He went on to tell us that there are people who live until they are 60 years old before they know they have DW. He explained that there is a huge spectrum of possible outcomes for children with this syndrome from being in a vegetative state (as we were told) to being highly functioning. He needed to see the condition of our baby's brain stem along with the condition of the rest of his brain to determine more. Our MRI was scheduled for Thursday, January 27, 2011.
The FISH results of our amnio were in. They were "normal." So, his survival was less questionable due to the fact that his condition wasn't coupled with Trisomy 13, 18, or 21. Good news.
The FISH results of our amnio were in. They were "normal." So, his survival was less questionable due to the fact that his condition wasn't coupled with Trisomy 13, 18, or 21. Good news.
Friday, January 21, 2011
Questioning Everything
I wish I could say I was strong from day one, that I put everything in God's hands and never questioned, but I questioned a lot. I went through the, "Why me, why us, why MY baby?" I wondered what I was being punished for...why was I being dealt these cards?
Thursday, January 20, 2011
Dandy-Walker Malformation
On January 20, 2011, we learned that our boy has Dandy-Walker Malformation. Dr. C. explained to us that the cerebellum is shaped like a figure 8. A part of the brain called the vermis connects the left and right sides of the cerebellum. It is responsible for stability (sitting, standing, walking) and movement. Our son's is missing. Also characteristic of DW is a cyst in the 4th ventricle of the brain. He has a cyst that is in communication with the brain (the brain believes the cyst to be part of the brain now..it's not removable). He promised us that our baby would be very sick. He said we will never walk, talk, feed himself, play on the playground, etc. He said these children have no sense of space and can't control their movements. I asked about cognition. He said he would most likely be like a 1 to 2 year old his entire life. Dr. C. touched my hand and said, "There is nothing you did to cause this. It just happens, and often we never know why."
Do I even need to mention the devastation that Joe and I were feeling?
Many parents in this situation, I have learned, are encouraged to terminate. And, many do. Options were presented to us; I was numb.
I was encouraged to have an amniocentesis performed to determine if there were any chromosomal abnormalities present as well. His survival was questionable, and the doctors felt having this information would give us a better idea of the overall picture. I NEVER thought I would have an amnio performed. Joe held my hand the entire time. I couldn't bear to watch. It was fine; uncomfortable, but fine. Like I said before, I was numb anyway (emotionally). We were told the FISH results would be back in 24-48 hours. The full battery of testing and the DNA micro-array would take a week to 10 days.
We spoke with our genetic counselor for hours that day. At some point she mentioned the possibility of us consulting with a pediatric neurologist since he/she is the doctor that works with DW children. Those of you who know me know that I often don't speak up. Well, I have learned to do so. I asked if that could be arranged. She went to make a phone call. When she returned, she told us we would be meeting with Dr. Painter on Monday. I didn't know this then, but I know it now; he is an angel. God sent him to us.
We finally got home from the hospital around 7:00 that evening. Thankfully my amazing sister was able to step in and care for Ally. It felt so good to hold my little girl that night. My whole world had been crushed. I never felt so desperate and helpless. But, holding Ally gave me strength.
Again, I probably don't need to mention what the next three days were like. I didn't know what sleep was, I couldn't eat, I thought I was going to lose my mind. I spent hours on the computer researching Dandy Walker Malformation, Variant, Syndrome, Complex, etc. I couldn't believe this was now my world.
Do I even need to mention the devastation that Joe and I were feeling?
Many parents in this situation, I have learned, are encouraged to terminate. And, many do. Options were presented to us; I was numb.
I was encouraged to have an amniocentesis performed to determine if there were any chromosomal abnormalities present as well. His survival was questionable, and the doctors felt having this information would give us a better idea of the overall picture. I NEVER thought I would have an amnio performed. Joe held my hand the entire time. I couldn't bear to watch. It was fine; uncomfortable, but fine. Like I said before, I was numb anyway (emotionally). We were told the FISH results would be back in 24-48 hours. The full battery of testing and the DNA micro-array would take a week to 10 days.
We spoke with our genetic counselor for hours that day. At some point she mentioned the possibility of us consulting with a pediatric neurologist since he/she is the doctor that works with DW children. Those of you who know me know that I often don't speak up. Well, I have learned to do so. I asked if that could be arranged. She went to make a phone call. When she returned, she told us we would be meeting with Dr. Painter on Monday. I didn't know this then, but I know it now; he is an angel. God sent him to us.
We finally got home from the hospital around 7:00 that evening. Thankfully my amazing sister was able to step in and care for Ally. It felt so good to hold my little girl that night. My whole world had been crushed. I never felt so desperate and helpless. But, holding Ally gave me strength.
Again, I probably don't need to mention what the next three days were like. I didn't know what sleep was, I couldn't eat, I thought I was going to lose my mind. I spent hours on the computer researching Dandy Walker Malformation, Variant, Syndrome, Complex, etc. I couldn't believe this was now my world.
Friday, January 14, 2011
The beginning
I started this blog in March 2011. Our journey began in January 2011. I post-dated the entries to keep them in time order. Sorry if things come across as confusing.
On January 14, 2011, Joe and I went for our 21 week ultrasound with the hopes of finding out if Ally would be getting a baby brother or sister. We found out she would be getting a baby brother! I couldn't believe I was going to be the mother of a little boy. My motherly instinct took over; I knew that the tech was concerned about something. When I asked if she was concerned with his heart, she said couldn't get a clear picture of the heart, but she was concerned with something about his brain. Not again. It was so stressful when we learned that Ally had choroid plexus cysts. Oh, how I wish he only had those. We were set up to get an ultrasound through genetics and meet with a genetic counselor the next week. While I was scared and worried, by the following Thursday I had myself convinced it was nothing. I was wrong.
On January 14, 2011, Joe and I went for our 21 week ultrasound with the hopes of finding out if Ally would be getting a baby brother or sister. We found out she would be getting a baby brother! I couldn't believe I was going to be the mother of a little boy. My motherly instinct took over; I knew that the tech was concerned about something. When I asked if she was concerned with his heart, she said couldn't get a clear picture of the heart, but she was concerned with something about his brain. Not again. It was so stressful when we learned that Ally had choroid plexus cysts. Oh, how I wish he only had those. We were set up to get an ultrasound through genetics and meet with a genetic counselor the next week. While I was scared and worried, by the following Thursday I had myself convinced it was nothing. I was wrong.