On Thursday we headed back to the Women's Pavillion at Texas Children's hospital for a day full of appointments. We were so glad to have my parents and Jason's mom with us to endure this long and exhausting day.
Our first appointment was with another pediatric neurosurgeon. He, as all of the others, had a lot of really good information. A lot of overwhelming information. I guess the main two things I got out of this appointment were: 1) there is no right or wrong answer- but once we make a decision we have to move forward and not look back and 2) if this were his (the neurosurgeon's) wife and child he said he would not choose the in-utero surgery. Talk about being knocked down! At first he didn't want to answer the question. He skirted all around it. I kept asking until finally he answered. He said that he doesn't think the percentages of improvement are great enough to take the risk of a surgery of this magnitude. I appreciate his honesty more than he will ever know. My dad commented later that he appreciated his honesty as well, and couldn't believe that he actually told us that. The next thing my dad said though was eye opening for me. This man is probably brilliant. He is at the top of his field practicing pediatric neurosurgery at one of the best institutions in the country. He can tell us what he THINKS he would do- but he is not in the situation. This isn't HIS child's future so sure- the benefit might not seem worth the risk. Now we just have to decide if it is worth it for us.
Next we had genetic counseling. When I saw that we had this appointment I expected to get the information regarding the amniocentesis we had scheduled, and maybe for them to take a family history of any disabilities, etc. What I did not expect was for a perky intern to come in, sit right in front of me, and then say in the perkiest of perky voices "So, how is everyone today?" with a huge smile on her face. I think that my expression said exactly what I was thinking and I could feel Jason tensing up immediately. She proceeded to try to have an actual counseling session with us and I finally just told her that we were not doing well, we didn't have a plan, we didn't have to have a plan, and that we needed to basically move on. I was not in the mood for a true counseling session, especially with a 20-something year old who probably didn't have children and was not wearing a wedding ring. I was polite- but very blunt. It was obvious that she didn't really get the gravity of our situation. Luckily there was an actual genetic counselor there who filled in the gaps and helped explain the different things they would be looking for on the amnio and the possibilities of each one showing up. After talking with them we decided to go ahead and proceed with the amniocentesis. We did choose to have the test results sooner (2 days rather than 10) so that we can make the decision sooner on how to proceed from here.
The amniocentesis was not horrible. They don't even numb your skin before sticking the needle in- but overall it wasn't that bad.
Then we met with Dr. Cass the fetal surgeon. After talking with the neurosurgeon earlier that morning Jason said that he wished our parents could meet Dr. Cass. He had been in Barcelona studying this exact procedure so we knew that he was out of the office. When we were leaving that appointment though, we passed him in the hallway. He was just getting back into town and agreed to meet with us that afternoon. Definitely one of the blessings in this situation.
We really like Dr. Cass. He is genuine and kind, and took my Dad's questions like a champ! (haha!) He again explained the procedure, risks and benefits of all of our options, and answered countless questions. I think everyone was a little more encouraged when we left his office.
And finally we met with the maternal fetal medicine specialists. These two ladies play the obstetrician's role in taking care of me throughout this whole ordeal. One of them actually knows Dr. Bertsch (my OB/GYN in College Station) and said that if I have the in-utero surgery and am doing well after 2-3 weeks I could be released back to CS and follow-up with Dr. Bertsch and a perinatologist until delivery. That was very encouraging to me as I am trying not to think about the possibility of spending 10 weeks in Houston.
Whew! That was exhausting just to type all of that! We left at almost 5pm and, due to Houston traffic, didn't make it to Erin's until almost 8pm.
I just have to again say what a blessing Erin has been. At 8pm my child was fed and singing and dancing in the playroom with Mykah, Karsyn, and Mimi. He was happy and comfortable. That did this Momma's heart good!
We also had dinner waiting for us at Erin's thanks to Crystal Patranella. It was delicious and gave us one less thing to worry about.
Today I was talking to Jenny and Kristin at two separate times, and both of them mentioned how neat it has been to see how everyone around us seems to have a specific role in this situation. What an amazing God we serve who knows our needs (even when we do not) and answers the prayers that we cannot even put into words.
I will make another trip to Houston on Monday for a fetal echo cardiogram. If that goes well and the amniocentesis comes back normal (which they have no reason to think that it will not), then we will be candidates for the in-utero surgery. They will want to perform this surgery at 23-25 weeks gestation. I am almost 21 weeks now.
I realized the time crunch of all of this this weekend and we have painted the baby's nursery and are planning on putting up our Christmas tree (since there is a possibility that I will be in Houston for Christmas). There is so much to do!
We want to say thank-you from the bottom of our hearts for all of the phone calls, text messages, emails, meals, help painting, extended dog-sitting, sonic trips, sewing, sweet early birthday presents, and support. We have been overwhelmed and will never be able to express how much it all has meant.
Please keep up the prayers!
Our first appointment was with another pediatric neurosurgeon. He, as all of the others, had a lot of really good information. A lot of overwhelming information. I guess the main two things I got out of this appointment were: 1) there is no right or wrong answer- but once we make a decision we have to move forward and not look back and 2) if this were his (the neurosurgeon's) wife and child he said he would not choose the in-utero surgery. Talk about being knocked down! At first he didn't want to answer the question. He skirted all around it. I kept asking until finally he answered. He said that he doesn't think the percentages of improvement are great enough to take the risk of a surgery of this magnitude. I appreciate his honesty more than he will ever know. My dad commented later that he appreciated his honesty as well, and couldn't believe that he actually told us that. The next thing my dad said though was eye opening for me. This man is probably brilliant. He is at the top of his field practicing pediatric neurosurgery at one of the best institutions in the country. He can tell us what he THINKS he would do- but he is not in the situation. This isn't HIS child's future so sure- the benefit might not seem worth the risk. Now we just have to decide if it is worth it for us.
Next we had genetic counseling. When I saw that we had this appointment I expected to get the information regarding the amniocentesis we had scheduled, and maybe for them to take a family history of any disabilities, etc. What I did not expect was for a perky intern to come in, sit right in front of me, and then say in the perkiest of perky voices "So, how is everyone today?" with a huge smile on her face. I think that my expression said exactly what I was thinking and I could feel Jason tensing up immediately. She proceeded to try to have an actual counseling session with us and I finally just told her that we were not doing well, we didn't have a plan, we didn't have to have a plan, and that we needed to basically move on. I was not in the mood for a true counseling session, especially with a 20-something year old who probably didn't have children and was not wearing a wedding ring. I was polite- but very blunt. It was obvious that she didn't really get the gravity of our situation. Luckily there was an actual genetic counselor there who filled in the gaps and helped explain the different things they would be looking for on the amnio and the possibilities of each one showing up. After talking with them we decided to go ahead and proceed with the amniocentesis. We did choose to have the test results sooner (2 days rather than 10) so that we can make the decision sooner on how to proceed from here.
The amniocentesis was not horrible. They don't even numb your skin before sticking the needle in- but overall it wasn't that bad.
Then we met with Dr. Cass the fetal surgeon. After talking with the neurosurgeon earlier that morning Jason said that he wished our parents could meet Dr. Cass. He had been in Barcelona studying this exact procedure so we knew that he was out of the office. When we were leaving that appointment though, we passed him in the hallway. He was just getting back into town and agreed to meet with us that afternoon. Definitely one of the blessings in this situation.
We really like Dr. Cass. He is genuine and kind, and took my Dad's questions like a champ! (haha!) He again explained the procedure, risks and benefits of all of our options, and answered countless questions. I think everyone was a little more encouraged when we left his office.
And finally we met with the maternal fetal medicine specialists. These two ladies play the obstetrician's role in taking care of me throughout this whole ordeal. One of them actually knows Dr. Bertsch (my OB/GYN in College Station) and said that if I have the in-utero surgery and am doing well after 2-3 weeks I could be released back to CS and follow-up with Dr. Bertsch and a perinatologist until delivery. That was very encouraging to me as I am trying not to think about the possibility of spending 10 weeks in Houston.
Whew! That was exhausting just to type all of that! We left at almost 5pm and, due to Houston traffic, didn't make it to Erin's until almost 8pm.
I just have to again say what a blessing Erin has been. At 8pm my child was fed and singing and dancing in the playroom with Mykah, Karsyn, and Mimi. He was happy and comfortable. That did this Momma's heart good!
We also had dinner waiting for us at Erin's thanks to Crystal Patranella. It was delicious and gave us one less thing to worry about.
Today I was talking to Jenny and Kristin at two separate times, and both of them mentioned how neat it has been to see how everyone around us seems to have a specific role in this situation. What an amazing God we serve who knows our needs (even when we do not) and answers the prayers that we cannot even put into words.
I will make another trip to Houston on Monday for a fetal echo cardiogram. If that goes well and the amniocentesis comes back normal (which they have no reason to think that it will not), then we will be candidates for the in-utero surgery. They will want to perform this surgery at 23-25 weeks gestation. I am almost 21 weeks now.
I realized the time crunch of all of this this weekend and we have painted the baby's nursery and are planning on putting up our Christmas tree (since there is a possibility that I will be in Houston for Christmas). There is so much to do!
We want to say thank-you from the bottom of our hearts for all of the phone calls, text messages, emails, meals, help painting, extended dog-sitting, sonic trips, sewing, sweet early birthday presents, and support. We have been overwhelmed and will never be able to express how much it all has meant.
Please keep up the prayers!
Courtney, thank you for keeping us posted through your blog. You are a gifted writer, and you have a knack for explaining things very clearly, yet simply. I love the name you have chosen for the baby. You are all in my prayers, all day, every day. We love you. If there is anything we can do to help you, please let us know. It sounds like you have been blessed with a wonderful circle of close friends who are taking care of you and sharing this time with you and Jason. I hope we will get to see you at Thanksgiving.
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