After all of the appointments, I think the main take away is still "Wait and see", although we do have some more information. I had a fetal MRI first thing on Monday, followed by another ultrasound with the Fetal Therapy Team at Hopkins. They were able to read both together and are more confident in acqueductal stenosis as a cause for the fluid. The doctor also told us that the imaging answered some important questions about her brain development that the team had been wanting to see. The good news (or what we're taking as good news) is that other than the fluid (which is really bad and growing), her brain seems to be doing what it's supposed to. It's forming the folds that are supposed to be forming and the nerves seem to be migrating to where they are supposed to be going. Her cerebellum and brain stem also appear unaffected. Her other organs also appear to be functioning just as they should. Seth and I are taking one additional step to hopefully rule out anything genetic being the cause and give us more confidence that this is purely mechanical. The amniocentes that we did when we got the news ruled out most things genetic. She has one portion of a chromosome that is duplicated, but they call it an unknown variant, because they don't know if it's significant or not. The hope is, if Seth or I also have this duplication, then we can just say it's nothing. If we don't have it, then it's more decisions about how much additional testing is appropriate.
And decisions are not my favorite thing right now. It's strange how the stress of all of this lies really just below the surface and most of the time I feel pretty great just going about normal life. Then the smallest thing will set me off - not having apples when I need one, something going bad (yes, mostly food related - I AM pregnant :-)) and the tiniest decisions. This morning Seth asked me if Colton should wear long sleeves to school and I was almost in tears. So if you experience me being even more indecisive than usual, just know that it's because we are contemplating some really huge decisions we might have to make in the coming months and not because any other decisions are unimportant.
But back to the doctors. We felt pretty encouraged after meeting with Dr. Miller, the Fetal Therapy doctor who did the ultrasound. Another aside, but please please please be kind to the medical professionals you know. Throughout this entire COVID crisis, they haven't missed a step and continue to fight to give their patients the best care they can. Dr. Miller went above and beyond for us. As our appointment with her was ending it was getting close to lunch time and I still had to meet with the new OB and come back and meet with the neurosurgeon. Not only did she offer snacks, she also worked with the other providers to help us get seen as quickly as possible so that we could get out of there and eat. She walked us to our next appointment and her whole staff made sure our coordination of care was seemless. That's not her job, but it made a world of difference to 2 overloaded parents on that day.
The neurosurgery consult rocked me a little bit. I think it's part of her job, but she seemed a lot less optimistic than the other doctors we had talked to. And that's ok, we need to hear it all. In short, shunts in newborns only have about a 50% success rate, due to infections, blockages and just not working. And even when the surgery is successful, there's no telling what brain damage the fluid build up and pressure will have already caused. So then we're faced with the decision, do we even risk the surgery? It's awful to contemplate. I honestly felt really stuck after that appointment. On the drive home though, we stopped ourselves in our tracks and prayed and remembered that we have a Great God walking with us and guiding our steps. I am a firm believer that if you are seeking God in your decisions, He is faithful and won't let you take the wrong path. There's rest in that knowledge. There's peace in that remembrance.
The appointment on Tuesday with the Pediatric Neurologist just confirmed that way of thinking. She went over the MRI with us in detail and had the opinion that at this point, with the things we know right now, there's no reason not to think that the shunt surgery could be successful and lead to our daughter having a pretty great qualitiy of life. I specifically asked about outcomes she's seen with this amount of fluid already and she confirmed that she's still seen good outcomes.
Of course, medical evidence or not, we know we always have a reason to hope, because our God is able to do exceedingly, abundantly more than we could ever ask or imagine. If you know Jesus, but still struggle to have that hope, please let me know how I can encourage you. Remember, our hope is not in the miracle we are waiting for, but in Jesus Himself and His goodness. If you don't know Jesus and aren't even interested, please keep reading. Your support is meaningful to me and my family. And feel free to ask me questions about how we can have this crazy hope! It won't offend me, I promise.
If you are praying with us, please continue to pray for a miracle healing for our girl. I'll be seeing both my new OB for normal pregnancy stuff and the Fetal Therapy team for ultrasound monitoring every other Monday. Please pray for continued good brain growth and limited fluid increases. We are hoping to be able to hold off on scheduling a c-section until around 38 weeks, so there's still a ways to go. Pray that Seth and I would be able to fully cast our cares on God as we are in this time of waiting. Pray for peaceful sleep.
Thanks for reading and praying. Writing all of this out helps me immenesley and keeps me in the right mindset (and sometimes brings me back to the right mindset when I've wandered). Love you.
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