So as you know we headed to San Francisco Monday for evaluations. We met with Rachel who is basically the do it all awesome nurse/coordinator for fetal surgery early Tuesday morning and went over the welcome speech. With that came a very real smack of possible complications and possible positive outcomes. It is not easy stuff. You can have open heart surgery with a 30 minute discussion, but fetal surgery you discuss and evaluate for 3 days just to give an idea of how heavy it can all be. Rachel was super impressed with me though and said through our phone conversations she would have never guessed a bubbly 20 year old would walk in and that she thought I was a super star at research and mature beyond my years. It never gets old hearing that I'm doing a good job at tackling all of this, at the end of the day I just want to know that I'm doing everything I can and that one day my knowledge and efforts will pay off and that Chase will know how much I love him from the very beginning.
So we headed upstairs to our ultrasound. We met with the lab tech whom would be performing the first half of our ultrasound. He explained to us that he is not the doctor and cannot/ will not answer questions but that we could be assured the doctor would answer any and all questions if we had any. However he was super nice and indulged us very much when we were trying to figure out if any measurements had changed. One of the hardest things is that when Chase comes on the screen, I go to another world and forget Chases spina bifida. I look at him and only him kicking back at the pressure of the scanner, and hiding his eyes behind his arm. He is just so perfect in that moment to me I feel so calm and unprepared. So it always shakes me ten times harder when reality comes crashing in and something else is being thrown at us.
At this point he looked in great shape and the lab tech left, I truly thought we just have to get through this and were in, we were so prepared for this surgery I only thought about how things were going to be with this surgery happening. When the doctor walked in his voice was so low and quiet and calming I immediately felt calm. He asked if we had questions and we said no and then he said "well..." Chases lesion was higher than what we originally thought. We were initially told and thought he was at L-5,S-1 which is low and of course the lower the better. They believe his lesion is at L4 and werent sure if closer to L3 or L5, it all doesnt sound like a lot but it can be the difference between him walking, walking with support braces or being in a wheel chair. More doctors were going to be meeting later in the afternoon and theyre going to let me know what they all thought but we did hear before we left it looked closer to L-4,L-5 but they have to give us the worst possible scenario just in case. So as much as it sucked to hear his lesion was higher....
This wasn't the bad news.
The bad news is that as a result of the amnio, I am having amnion chorion seperation. Basically the amniotic sac that baby Chase sits in fuses early in the pregnancy with the choronic membrane, most of you who have have children will have never even seen this as its not something you really see on screen when its fused. It is common in that 1 in 800 statistic have affects for a small area to become separated after an amnio and is a risk you sign for when getting the amnio. It isnt quite as common for the entire thing to separate all the way around. The ultrasound showed that fluid is leaking out and that of course because of this he said it could affect their decision to operate and that they would tell us downstairs what they decided.
It was easy to be angry on the way back down to the Fetal treatment center. A million thoughts, why wasnt this seen earlier when my amnio was a month ago, why did this happen in the first place, did I put my baby in harm by trying to help him. Walking into the room I was completely neutral I was straight faced and forced every thought out of my mind, I needed to have clear thoughts only to take in every word. We met with the Parinatoligist. A nurse and a student came in to observe. He drew out exactly what was going on and any potential risks from the separation. Basically premature labor so I am going to have to take it extremely easy and be watched very carefully to make sure I and the baby are both safe and hope that a miracle happens and it all fuses back together or at least partially!
"Unfortunately as I'm sure you can see as a result, we could not offer this surgery to you." There was more, but you couldnt pay me all the money in the world to remember the next minute. I remember feeling far away, truly separated from the situation. I could see the student give me a tissue to wipe just two small tears that came down my face. I could see me nodding, Bryan glossy eyed and red, my mother looked ghost white.
I couldnt be mad, not at them they had done and continued to do nothing but help me that day. I couldnt be sad, not really. Technically this wasn't Chase's only option. Of course it was the option I wanted but who knows maybe it was a sign. I kept thinking "I thought you were watching him, me, us" But maybe she is watching maybe this was a sign that the surgery could've been the wrong option for us. I was so determined to have the surgery, to indulge the chance to help him develop for a few weeks with his defect repaired. The next 20-30 min I took in and absorbed as much information as I could. And we all continued to that day talking with rachel again and the head of their spina bifida clinic to learn about whats next for us. We asked questions on being prepared for when hes here and having his lesion closed after birth. I wish you all know that there are so so many amazing women who are raising a child with spina bifida and I have been so lucky to speak with them, I am strong for a lot of reasons and they are definitely one of them! The student later came up to me and told me she just couldnt believe my manner in the room and they had told her I was positive and was impressed. She said she felt like I was an inspiration. Jesus, I think I wanted to cry hearing that more than in the room. And again when the neurosurgeon who we were supposed to see later that day but he had an emergency surgery we found out first thing in the morning made time to come down and apologize and say how disappointed he was after hearing such positive things about us that they couldnt operate like I wanted. They are wonderful people at UCSF and if anyone should ever read this wondering if they should go up for an evaluation my answer will always be absolutely!
So its a long post and trust me throw in a 10 hr drive before and after this day and I am just drained.
Thank you all for reading and continued support, and thank you sooo much to my Mom, Dad and Bryan <3
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