Things we know and more we don't know...

Racked with anxiety about getting an amniocentesis, I made a quick last minute decision to just get it done before our appointment at with the neurosurgeon at Primary Children's Hospital. I really just wanted to get it over with. Despite years of monthly blood draws and all kinds of shots for infertility, I'm still not that keen on needles. Plus, the idea of one long enough to reach my uterus made my head spin. So, two Thursdays ago, Tyler and I went back to see Dr. Andres and get the amnio over with. I am SO glad Tyler was there. It was the longest 50 seconds of my life that that needle was in my belly. At first you think, Oh this needle is so skinny it really isn't so bad, but once it enters the uterus and the contractions start and then they wiggle the needle around and fish into place to find the perfect pocket of fluid... So, yeah it was nothing like "getting blood drawn," like they compared it... Anyway, the needle is so skinny that the fluid comes out suuuuuuper slow. I kept my eyes closed the whole time and just tried to breathe through the contractions. Tyler watched it all on the ultrasound screen. He said Max kept reaching out with his good foot to kick at the needle like, Hey get out of here! That silly boy. Now we just had to wait 10-14 days for the results.

A few days later, Monday the 21st had FINALLY come! At last we were going to go meet with the neurosurgeon at Primary's and get a detailed review of our MRI, and find out what options might be available for Max.

Sunday night, before bed, I was just excited to go and get some answers.
But then, the lights were out and Tyler was snoring, and I was left alone with my thoughts. That is the absolute worst thing for me! Because I am a worrier, I spent the whole night tossing and turning, then I spent the morning having a panic attack. I couldn't stop thinking about all the ways this appointment could go wrong...

We could be late. SO late that they make us reschedule.
He could be called off to surgery and they could make us reschedule.
I could forget all my questions and come away with no answers.
He could tell us he's never seen or operated on a case like this before.
He could say there's nothing they can do to help Max.

Well, we weren't late. My fear of being late put us there 45 minutes early, and then he ran 30 minutes late. I'll tell you right now that the waiting room in neurosurgery at Primary Children's is a pretty depressing place. Disheveled parents and family members sprawled out on waiting room chairs look like they haven't slept in days. Some watch movies on their phones or hurriedly type on laptops. Some have whispered phone conversations. Some just sit, looking exhausted and glazed. Occasionally, a surgeon in scrubs comes out and takes them somewhere private to talk. So, since we were early, we sat and took all this scenery in for about 30 minutes. Finally, the nurse came to get us and said it would still be awhile, but we could wait in an exam room if we wanted. We jumped at the chance, in desperation to get out of that waiting room.

So, we waited in the exam room for awhile. Then they moved us to conference room with a big screen where Dr. Bollo could show us my MRI images. The longer we waited the more I started to panic. Tyler made every joke and face he could think of to try to make me laugh and calm down. Have I told you all lately how much I love that guy? Well, I really love him.

At last, Dr. Bollo came in to talk to us. It was a lot of information at once and I did my best to keep up, trying to jot notes as quick as I could. First, he discussed the ventriculomegaly (the enlarged ventricles of fluid on Max's brain). The biggest concern, of course, is the development of hydrocephalus after birth. He explained to us what that would mean and what could be done if that were the case.

Second, we discussed the meningocele (the opening and sac off the back of his neck). So, because it is off the very top of his spine it is technically under the broad, encompassing Spina Bifida category. However, it does not share the normal symptoms of Spina Bifida when it occurs in the lower spine. So, yes and no to that. Dr. Bollo was optimistic though about operating within the first 6 weeks of life to remove the meningocele and close that gap. He explained that it is likely Max may never walk or talk, and his motor skills may be limited. Since the ventricles are blocking view of brain development, it's hard to know what Max will be like. He said that, though it is rare for a meningocele to be that high, he has operated on these before. He sees maybe 1-3 cases like it a year. However, Max is a much different case with his many birth defects.

He showed us the images of my MRI, and pointed out where my bladder was squished off to the side. No wonder I pee all the time! We asked about Max's little eye. Dr. Bollo isn't sure, but he thinks there is an eye there and its just very small and underdeveloped. Tyler says if Max is blind in that eye we'll get him a sweet eye patch to wear. We are just gonna LOVE this little boy SO much!!

Next, our specialist office will help us find a pediatric cardiologist to talk to about the position of Max's heart and how that might affect its functionality.

Finally, the time had passed and my genetic counselor called with the results of the amniocentesis. Of course, as is typical with Max, they didn't really get much from the initial tests. They found that a piece of Max's #5 chromosome and a piece of #18 have switched places. Right now we don't know what that means, how that will affect his viability, or why this occurred. So, they are sending it off for a more detailed, closer look. Yes, something that can look at DNA closer than a microscope! It is called a Microarray test. So, in another week, we will get the results of that and know more about Max's genetic makeup. Sheesh! Right? This kid just likes to be complicated. Always! But we love him so much its hard to really get too upset about it.

Once we get those final results, hopefully, we can make a decision about where and when I'll deliver. If they feel the chromosome swap won't affect his ability to live, then we will deliver at the University of Utah so they can send Max right over to Primary's to start taking proper care of him. If not, then we will just deliver at McKay and love that boy for all the time the Lord blesses us to have him.

So, that's where we are right now. Thanks for being patient. Sometimes I have time to update and keep up with this blog. Other times, all of the doctor appointments, work and duties keep me so busy I cannot even think about getting a blog done.

Love to you all! Thank you for your continued prayers.