Flip-turned Upside Down

Well... I have been meaning to come out of hiding for some time, but I just haven't had the time or emotional stamina to explain why I went in the first place. Let me start by just saying... Whoa. December was a freaking tough month. I have never been so excited to see a month (or year) end. I started crying when the clock struck midnight on new years eve- almost uncontrollably. I am super glad we just stayed home this year by ourselves, because I was a first class mess.

I think it looks like he's smiling :)

So, remember way back in early December when we had our "20" week ultrasound done? (I was actually 22 weeks) Well, later that night I got phone calls from both my midwife and OB. Not a good sign. The midwife asked if I noticed if they had spent more time watching/measuring one area of the baby than another. When I responded no, she explained that they had found "a mass with associated ventricular swelling in the choroid plexus". Don't worry, I had to look it up too. Turns out the choroid plexus is a region of the brain tissue that makes and distributes cerebral spinal fluid (CSF).

I was freaked out, but being the practical, research minded person that I am, I didn't want to get worked up until I knew what I was dealing with. So after I thanked her for calling, I started to look up "choroid plexus mass" and found a great deal of articles and stories about something called a "choroid plexus cyst" or CPC. These are apparently pretty common... between 1-2% of babies have them at the 20 week ultrasound; and miraculously 80-90% of those disappear by 30 weeks. They are considered to be a "soft marker" for Trisomy 18 (also know as Williamson's Syndrome) but only if accompanied by by deformities of the hands and feet. And well, as you can see in the photo above, his little toes look pretty perfect.

But... there were a few mentions of other types of brain tumors and cysts, and I wasn't really sure what the swelling was about. Plus, I was in a pretty serious case of shock when she gave me the prognosis, so I had started to have doubts about some of the specifics and I had some questions. We had been meaning to go in to see my OB for a while* so we made an appointment with him for the following week. That day changed everything. Up until that point, I thought maybe we would have another ultrasound around 32 weeks to make sure everything had cleared up and that there wasn't any swelling or enlarged head size so that I would still be a candidate for a home birth. Dr. Serious (name withheld) had news for me.
*(We are doing a "co-managed care" program where I see the home birth midwife every month, and the OB every 2-3 months  so that in the rare event that we end up in the hospital, we will have an OB on record.)

Turns out... the radiologist didn't think it was a CPC (cyst). They thought it was something significantly more serious- a choroid plexus papilloma, a choroid plexus carcinoma, or xanthofibroma. Dr. Serious attempted to prepare us for what may be to come... at least one (with the possibility of lots of) specialist appointment(s). There was talk of finding a neonatal neurologist. Talk of surgery following birth. Talk of needing to deliver not just in a hospital, but one equipped to handle such things... basically choosing between Stanford or UCLA. There were concerns that the tumor and swelling could enlarge the head preventing the possibility of a vaginal birth.

In the span of about 30 minutes, my birth plan went from a private home birth in an inflatable tub in my dining room to medical circus 3 hours from home.

I haven't cried that much since March- when we had the miscarriage. This surprise baby could not have been more loved or wanted, but it took me forever to accept that I was actually pregnant. That there would actually be a baby. That everything was going to be alright. And then... this.

I have had such a huge amount of guilt about how disconnected I have been from this pregnancy. It is so different from the first two. With #1, I had no idea what I was in for. I have often said that it took me at least 3 months after Tank was born to understand the kind of love a parent has for their child. The whole "moment you lay eyes on them" bit just didn't ring true for me. Sure, when he was born, I thought he was pretty great. And I loved having him around. But I didn't start to really get it for another 3 months. Unconditional love was something that I had to learn- it didn't come naturally to me.

When I got pregnant the second time (after months of trying) one thing I was really excited about was getting to experience that moment... getting to have that moment when I first saw my child, to know that I loved them unconditionally. I felt it start the instant the second pink line showed up. Then losing that baby was like tearing my heart out. It scared me more than I ever could have imagined.

I carried that fear into this pregnancy. For the first 10 weeks, I kept saying "Well, if I am pregnant..." not wanting myself to get attached. We didn't even tell our parents until after we had an ultrasound at 8 weeks. We waited until I was 12 weeks along to tell our friends, and 14 weeks to announce it on Facebook. I kept holding out, feeling like it was just a matter of time until the rug got pulled out from under me again.

I had really just started to settle into the idea that I was actually pregnant around Halloween (16 weeks) and I started to get excited. But with 4 major holidays and Tanks birthday between then and January, preparing for the baby didn't seem urgent.

Since we didn't find out the gender the first time around, I promised Reb we could find out this time, even though I still would have preferred to wait. I actually would have preferred to forgo the 20 week ultrasound all together. But, we planned the appointment for the week after Thanksgiving, and asked the tech to write the gender down on a piece of paper for us and seal it in an envelope so we could open it Christmas morning. I have to admit... getting to see the baby was pretty cool. Tank LOVED the "special baby camera" and talked about it for weeks. It was a special day, that ended pretty horribly.

So, after our appointment with Dr. Serious (which was the week following the original ultrasound), we talked it over and realized that we shouldn't wait to schedule a follow up appointment with the perinatologist. We would need time to make a plan, choose a hospital, and find new doctors. So we asked him to refer us to the specialist.

It took 3 days for the specialist to review our chart and call us back to schedule the appointment. And the soonest appointment they had was January 5th. Four weeks from then. After Christmas. We had to carry the uncertainty with us through the holidays. The worst part was not knowing anything. I was driving myself crazy with questions I couldn't answer. We decided not tell anyone what was going on until we got some answers, because I knew I couldn't face the questions that would inevitably follow whenever we told someone that the baby had a brain tumor. So we told no one.

It was the least Christmas-y Christmas of my life. I couldn't get into the spirit of it. Neither of us could, though we tried to fake it for Tank's sake. I wanted to take the decorations down as soon as possible... the day after even. (This is big for me... Our first Christmas after we were married, we kept the tree up until March. We bought a fake tree last year because my tendency for over celebrating the season was turning in to a major fire hazard.) Reb made me keep them up until New Years Day.

A few days before our appointment with the specialist/perinatologist, I had a meltdown at my in-laws house. They were wanting to discuss plans for the future of our house (that they own, that we are working towards taking over), and I couldn't handle it. At that moment, I had no idea what the future held. I had no idea if we would still be living in this city- let alone county- come spring. And I didn't really care. If we had to sell everything and live in a studio apartment in Palo Alto to do what we needed to do to care for this baby, we would. I didn't feel like I could commit to a new television series, let alone a mortgage. Of course, since we hadn't told anyone what was going on, I must have just appeared to be a total basket case for no reason at all.

Finally the day came. Our midwife, God bless her, had arranged to come to the appointment with us. I don't remember much about the appointment itself... just the waiting. Finally, once the MD came in and got to business, we were able to see the baby. The one point of reassurance during this whole time was that the baby seemed to be growing on schedule, and he was constantly moving. So, regardless of what may or may not need to happen at/after birth, he was developing normally for the time being. As soon as we saw his sweet little face on the screen my heart melted. I have never been so nervous in my life.

He checked all the normal stuff first. He finally got to the head and he spent a great deal of time looking at it, snapping photos, and measuring. Finally, he said that while there is a large mass in the choroid plexus, he believed that it was just a cyst. While most are >1 cm, ours was right around 2 cm. Now... remember earlier when I mentioned that they are normally found at 20 weeks and gone by 30 weeks?At this point, I was almost 26 weeks pregnant. And the mass was still nearly 2.5 times the size of normal. But, there was no longer any ventricular swelling, and there didn't seem to be any fluid blockages, and the head wasn't enlarged at all, so as far as he was concerned, we could proceed as if everything were normal.

Holy crap was that good news. Now, we weren't/aren't out of the woods just yet. Due to the increased size of the mass, we still need to do a follow up on it at or around 32 weeks. Our appointment is on February 23rd. Our main concern is that he mass hasn't grown in the mean time. If it has, then it won't classify as a cyst, but either as a papilloma or carcinoma, putting us back into the scenario that Dr. Serious had laid out. But, if it is either the same size or smaller, we should be fine. The only concern then would be surrounding the CSF (cerebral spinal fluid) and making sure that there aren't any blockages. If there are, we would be at risk for hydrocephalus; or fluid buildup on the brain that leads to swelling and possibly brain damage. Treatment could include surgery (similar to the first scenario) or the surgical insertion of a shunt to reroute the CSF around the blockage. The third possibility is that the mass is smaller than it was; meaning that sometime soon after the baby is born (first 3 months or so) we will need to get an MRI done. There is kind of a fourth possibility that the mass will be gone; but while I am hoping that it is smaller, I have very little hope that it will actually be gone.

Peace sign... and extended, well formed fingers. 

So... despite the remaining uncertainty, we are slowly returning to a state of hesitant peace and building excitement about his arrival. Tank and I made a calendar to cross out the days until "Baby Dino" gets here (since I got tired of trying to explain when April was). My sister is planning a baby shower. I have been doing some registry building, and planning how to rearrange Tank's room to best fit a crib. We still haven't actually done or bought anything in preparation for the little man's arrival, but we are coming around to it.

We love this little man so much already. I just pray that the rest of his journey is filled with peace, for both of us... Make that all four of us.