On Tuesday we had the long-anticipated consultation with the neurosurgeon. Russell had requested off that day so he would be able to attend as well. We got up slightly later than usual, got everyone up and ready, and Russell drove the boys to school/daycare. I would have gone with him but since I had to go to work directly after the appointment we needed both cars, so we decided to meet there instead.
Our appointment was at 8:30, so I got there around 8:10. I got checked in and sat down to wait, and no sooner had I got out my knitting than they called me back. I texted Russell to let him know to ask for me when he got there, since he wasn't there yet.
I went into the room with the nurse. She asked me some verification questions about myself and my health history. She then asked if I had any imaging from outside the system to show the doctor. I told her no, all our imaging had been done in house, and that I was scheduled for a fetal MRI next week and all of my sonograms should hopefully be in the system with my records for them to look at.
She looked at me a bit strangely. "Are you sure you're supposed to be here? In neurosurgery?" I answered yes, that the unborn child I was carrying had Dandy-Walker and hydrocephalus and we were there for a consultation about the surgery to place a shunt.
I guess that was acceptable to her, so she finished up and as she left, said, "Good luck honey." I know she meant well, but it just really got to me. It made me really aware that this was a hard, sad situation and not normal at all. After she shut the door, I just burst into tears. As much as I'd been 'looking forward' to this appointment in hopes of getting some answers to many of the questions I had, the fact that we were here, in the neurosurgery office, made it all too real. This was really happening. Ally really had hydrocephalus and would very likely require many surgeries in her life, especially as a child, and all I wanted was it to not be real or at the very least, for me to be able to take her place.
I was able to calm down a few minutes after my breakdown, before Russell got there. And then we waited. I knitted, Russell played with his iphone, and we waited. We talked about various odds and ends, wondered what was taking so long, and waited.
Finally the doctor came in. He is a resident, which is why I couldn't find him on the website. He basically told us what little he could, which was mostly that there wasn't much he could tell us for sure. A lot would depend on Ally's condition and imaging after she was born, though some things may be clearer after the MRI next week, but even that would probably not give definite answers unless there was some blantantly obvious issue.
We asked all the questions we had about hydrocephalus, the surgery itself, and maintenance and life afterward. There wasn't a lot of new information because we had read up a lot on the topics, although he did put some of our fears at ease (the internet can give a wide variety of information, you know!). The biggest thing to me was we found out that the surgery is usually between 45 minutes and 90 minutes long, recovery time is pretty minimal (patients often leave the next day unless they have other medical complications) and resulting pain is minimal. Also, revisions of a shunt are usually due to the shunt failing and not so much the fact that they have 'outgrown' it seeing as they put in extra tubing so the shunt can grow with them (to an extent, anyway).
We had read a lot of 'scary' effects of hydrocephalus and shunting, but he put our minds a bit more at ease about it all. There are many different ways hydrocephalus can affect a person, but just as we are encountering with everything else, these effects are varying and we won't know what Ally develops as a result until it happens. However, she probably won't develop EVERY symptom, which can sometimes be hard to realize when you are trying to research and prepare yourself for what is to come.
We are going back in 4 weeks to look over the results of the MRI and see if they tell us anything else. Right now it is up in the air as to whether or not Ally will actually need a shunt; it will depend on the severity of the hydrocephalus when she is born and what her sonograms/MRI/CT scans show. If she does end up needing it, when it will be done is also up in the air; again, it depends on the severity.
I left feeling somewhat discouraged. I was hoping to get answers and have an idea of what to expect. While I definitely understand some things much better, I have finally come to the realization that we will know almost nothing for certain until Ally comes (and even the timing of that is up in the air!) and she is examined and tested further. At this point, we feel that not many decisions are going to get made until the end of March/beginning of April, and then we are going to be overloaded and overwhelmed. We are trying to come up with plans, but being the type A person that I am it is extremely frustrating and unsettling to not know what the future holds.
Most days I pass a church sign that says "Trust your unknown future to a known God." It has been on the sign for some time. Obviously God is trying to remind me that I need to put my trust in Him, and that everything will work out in His timing. I am pretty stubborn and have a hard time learning this lesson (obviously).
The next day I had an appointment with Terry at the OB's office. That went fine, there was not much to tell. We discussed the possibility of a c-section yet again but I told her that my doctor at MFM knew how much I wanted to have a regular delivery, and how the delivery would be scheduled sometime between 37 and 39 weeks. I also had them fill out my maternity leave paper work for school. I have come to the unfortunate realization that regardless of when I deliver, I will not have enough leave to last through the end of the school year, so unless I want to take time off without pay (not good), I will have to go back for at least 3 weeks until the school year ends.
After my appointment I took Ben for his checkup. That went fine, and it gave me a chance to talk with the nurse practicioner about Ally's condition (we were not able to schedule with our regular pediatrician). She also made me feel at ease, saying that they took care of several children with shunts and our pediatrician would work with us to keep an eye on her development. It made me feel better to know that Ally's pediatrician would be able to work well with us and the neurosurgery team (not that I doubted her abilities, just knowing there were other children in similar situations in the practice that they cared for made me feel a little more at ease). She also told me about some various programs that are available for young children to help them with their various developmental issues. I have already started researching this as well but it is good to know that they will be able to help and guide us along as we need it.
Thank you all for your love and support! Please continue to pray as the weeks pass by. I can tell at this point that the wait is going to be hard, since we probably won't know much (even when delivery will be!) until the delivery, and then it will all be upon us at once. It is somewhat overwhelming at times, but as I said we are trying to do our best to prepare and make plans and educate ourselves so we can make the best decisions possible when the time comes- for Ally and our family as a whole.
No comments:
Post a Comment