So, yesterday was our big follow up with the Maternal-Fetal Medicine office. And it was one hell of an emotional roller coaster. Warning, this is going to be long, so be prepared. We saw 5 doctors, two ultrasound techs, and got a LOT of information. Also, I’m not recapping everything here, to save space, so you may want to start with the post explaining the results we had 2 weeks ago. You can find that here.
I didn’t sleep hardly at all the night before. I managed to keep the worrying and freaking out to a minimum during the 2 weeks of waiting, but knowing that it might be my last night of still having hope that we were going to have this baby had me stressed completely out. We both stayed up till midnight watching Agents of SHIELD, and then when he went to bed I stayed up playing Star Wars until 3:45 or so, when I thought I was finally tired enough to just fall asleep and not lay there wide awake.
Anyway, our first appointment was at 10, with the Genetics Counselor. (Also, side note- the office was in a former mall, the mall where I had my first date almost 15 years ago, so that was super weird.) She walked us through various genetic problems that could be causing the issues that showed up on our first ultrasound. She had the results from the blood screening they did, and it showed essentially negative for any trisomies. (I say essentially because it can only give odds, but it was 1/20,000 for Downs, and even lower for the other two.) That was good news, since the other two are fatal. She also explained some other possibilities that it could be. That’s probably the one part of the day when taking notes would have been helpful, since I don’t remember it as well. But it also is really the least important part, since our main concern is what’s going on with baby, not why. We also discussed having an amniocentesis, since that would give us a better idea what was going on. She was super, super positive about everything. Screening negative for the trisomies was apparently just great news, and the others were super unlikely, and she was pretty much just expecting the ultrasound to show that the first one was wrong and everything was fine. Honestly, I’m pretty unhappy about that. I’m all for being positive, but her attitude was just unrealistically hopeful for our situation. I think she should have gotten a clearer picture from our doctor first, and tempered her optimism a bit. Still, it was better than the next doctor.
After talking to her, we moved over to an ultrasound room. The tech was very nice, and we were able to find out the baby’s sex! (No, not telling yet!) Unfortunately, baby was apparently snoozing, so she did have a little trouble getting all the shots she needed (which wound up being very significant later). She poked baby and had me cough and stuff, but s/he was having nothing to do with it. (And in case you’re worried, I felt plenty of movement later when s/he woke up, so that wasn’t a cause for concern.) Unrelated to everything, I did confirm that I have an anterior placenta, which normally means feeling little to no movement until much later than average, so I’m really curious now why I’ve been feeling so much. Definitely since no later than 16 weeks, and it’s been consistently frequent for at least a month (22 weeks today). The tech was really surprised when I told her that. When she was finished she gave us some pictures (finally got some shots that actually looked like a baby!), couple cute, “potty shot” confirming sex, and one super creepy skull shot cause why not. 🙂
After that (and waiting around for a while), we met with a high risk OB. She, I am actually pretty angry at, and will probably be contacting their office to complain about. She was unbelievably negative. We basically walked out of there debating when to schedule a termination and considering whether we should start looking into IVF or adoption, and whether I should start thinking about going back to school and getting a career, if kids were starting to look unlikely. Seriously. To give her some credit, the shots they got on that ultrasound didn’t show all the parts of the baby’s brain developing correctly, or even being present. Her interpretation of what she saw basically amounted to- the lower parts of the brain, which regulate breathing, heart rate, etc. were there. Baby would live. But nothing else was right. Baby would have no higher cognitive function whatsoever. S/he would have a lower quality of life than our dogs (no, she didn’t actually say that verbatim). When we asked her about the amnio that we’d discussed with the genetics counselor, she basically said don’t bother. The clear implication was why do an amnio today when we can do an autopsy next week. Now, to be fair, I wouldn’t have wanted her to give us false hope if that were truly the case. But remember what I said about baby snoozing, and the tech not getting all the best shots? Yeah, how about next time you remember that, lady? She should have kept that in mind, and reminded us of it, when she was discussing results.
At this point they called over to the Fetal Center at the Children’s Hospital to see if we could meet with some people there. They said they could probably work us in, so we headed that way with a stop off for some lunch. It was 12:30 at that point, though to be honest after that bad news we weren’t really hungry. That time after meeting with that doctor, and before meeting with anyone else, was the worst part of the day. We were honestly confused as to why we were even bothering going to meet with a pediatric neurosurgeon if there was no hope. Poor Christopher. I didn’t want to break down until we got home, and my way of avoiding that mostly involved yelling a lot (even it if was just what I wanted from Taco Bell). I also in the span of 10 seconds told him not to talk to me (he was trying to discuss serious stuff that was upsetting), and then immediately told him to keep talking only he needed to make a joke (like he wasn’t upset too, not like joking was high on his fun list right then). I kept thinking of things like how much Christmas would suck knowing it should have been baby’s first Christmas, and then forcing myself to think of something else. I was really dreading the thought of tomorrow, May 4th, the one year anniversary of my first positive pregnancy test, when there was apparently still no baby on the horizon. I did make Christopher spend some time discussing Agents of SHIELD with me, and read a baking blog.
Anyway, the first thing they did at the fetal center was another ultrasound. At this point baby was more cooperative (probably the caffeine from the Dr. Pepper), and they got way more shots of the head/brain. It was difficult though. I didn’t like seeing the baby on the screen, thinking that s/he wasn’t going to make it. The tech also wasn’t aware of what was going on, so she was all cheerful and asking if we wanted pictures and stuff. Um no, thanks. Actually, I kind of wish we’d taken them now, but not like I won’t have more opportunities soon.
Once the ultrasound was finished, and we waited for a while, we met with a pediatric neurosurgeon. Actually, he was THE guy in the country that everyone turns to for questions on treating hydrocephalus in infants. So that was nice, to feel like we were definitely talking to someone who knew what he was talking about. He explained what would be done after birth. Basically, with how things are looking now, I’d probably carry to term, around 37 to 39 weeks, at which point baby would come on out and they’d either place a shunt (a tube that would run from the overfilled ventricles in the brain all the way to baby’s abdomen, where it would drain the fluid), or do an ETV, which would basically have the same result but without the permanent plastic tube in his/her body. He also explained that the brain is like a sponge, it can be compressed quite a bit, and when the pressure is removed, basically spring back into position. Which is not to say that all the compression going on wouldn’t do any damage, but that there would still be a lot of opportunity for growth to rebound after birth and to at least give baby a good chance. He couldn’t say what the long-term prognosis would really look like, just because there’s so much variation in individual responses to these things. He did confirm that there would be some issues with development, no matter what. When dealing with “high moderate” hydrocephalus, which we are, there’s always some delays. They could be relatively mild, they could be somewhat severe, but likely they’d be moderate. Probably more than just hitting milestones late and needing a little tutoring in school, but s/he probably would go to school and be pretty darn functional.
Keeping in mind, of course, that all of this is based on things staying about where they are and not worsening. If the ventricles do keep growing, hitting around 30-40mm (currently around 20), they would recommend a c-section around 34 weeks. That’s when the risks of prematurity would cease to outweigh the benefits of early intervention. The treatment would be the same, ETV or shunt, and baby would probably be in the NICU till around the original due date, so a month or two. In that case, we don’t really know what the damage might look like. It could be more severe, but since they’d be able to intervene sooner, baby would have those extra two months of development without the hydrocephalus. And if things get drastically worse, with the ventricles growing up into the 50, 60 or more range, then we’re probably looking at no hope at all. Baby would either simply wouldn’t survive, or we’d consider going to a state that allowed later termination, because at that point we really would be looking at the prognosis described by the first OB. There would be no quality of life possible.
But! It’s really not looking bad right now. After the neurosurgeon, we met with another high risk OB. She actually walked us through the various ultrasound images and showed us where the ventricles were compressing what parts of the brain, and confirmed that all the parts are there. She also checked to confirm, and the ventricles are actually somewhere around 17mm and 19mm, not quite at 20. That’s not hugely significant, because anything over 15 is still “moderate,” so it didn’t change our risk category. But it does mean they’re just a little better, and more importantly, unless there’s a really huge margin for error on the first ultrasound, there’s no way they got worse in the intervening two weeks. And that’s really important, because of all the things in the last paragraph. She also looked over the results for everything else on the two new ultrasounds, and said that all the developmental concerns from the first were just wrong. Baby’s head is somewhere in the 35th percentile, not 95th. Everything is developing at a consistent rate, rather than the drastic differences between head, body, and limbs that we saw at first. And the kidneys are not distended outside of a normal range. She discussed birth options a little more (likely c-section, but it is possible that if baby’s head is normal sized at full term that we could attempt a vaginal birth), and that sort of thing. She also suggested we meet with the head of the NICU, who thankfully was willing to come down to meet us when he finished with what he was currently working on.
So we went back to waiting for a little while, and had some time to discuss things. Both of our heads were whirling from the complete 180 on the prognosis. Christopher was still feeling pretty down, and didn’t feel like what we’d heard was enough to think it would be safe to carry to term. Like I said, that first doctor was REALLY negative. And he was right to say that the neurosurgeon would have had a bias, since his whole job is to save babies. He simply wouldn’t be thinking in terms of whether a baby was worth saving. But I was feeling pretty much 100% better. I knew (know) I could handle a baby that was simply special needs, and not basically a vegetable. But holy wow it was so confusing, trying to completely change what I was thinking in such a short time.
The head of the NICU was our favorite doctor of the day. He had the best “bedside manner” and was just really encouraging, without being, I think, unrealistically optimistic. He was able to give us an idea of what all of it really means. He explained that they would do the shunt probably the day after birth (birth is traumatic enough for one day), and that baby would be able to come home as soon as s/he was eating, breathing, and staying warm on his/her own, so probably fairly quickly (assuming we carried to term). S/he would be pretty much just like a normal baby early on. The TN early intervention people, who would help with physical therapy and that sort of thing, would probably want to start doing physical assessments around 3 months. Assessments for intellectual and social development would probably come a little later, and we probably wouldn’t get a good picture of what kind of cognitive delays there were until closer to a year or later (since early on they’re not doing a lot of intellectual stuff). Some of his neuro doctors would probably handle that, in conjunction with our pediatrician. They would make sure we knew what to look for and keep track of, and help us with what to work on. He also mentioned that since hydrocephalus in babies is most commonly found in conjunction with spina bifida, it’s very encouraging that baby’s spine is totally normal. He also brought up the fact that they would strongly encourage/support breastfeeding, which is a little thing but it’s something I want SO badly, which the NICU can interfere with, so it just really made me happy to hear. I’m so grateful we are working with doctors that are 100% supportive of things like breastfeeding and natural birth if possible and just aren’t anything like those negative stereotypes of doctors who try to discourage those things and jump right into elective c-sections and formula supplementation, etc.
Anyway, that was our last doctor of the day, finishing up around 5-5:30. So, long day. Thankfully, Christopher was incredibly reassured by him, and was at that point fully with me on the “we can do this, it’s not hopeless” attitude. We both felt (and still feel) so, SO relieved. It’s not over yet. The ventricles could keep growing and it could end very badly. But we actually can feel hopeful now, and the lack of growth over the last two weeks really makes me feel that, even if they do get bigger, it won’t be fast enough that we can’t just go the delivery at 34 weeks route. I do think this will have a happy ending, even if it’s a far from perfect one. I woke up this morning and thought, “holy crap, I’m having a baby!” It was the same sort of shocked excitement I had with that first positive pregnancy test. After all the stress of the last two weeks, and a morning spent thinking that I only had a few more days of pregnancy left, with no baby at the end of it, just knowing that there’s still plenty of hope is the best feeling. They’ll probably continue some testing to try to see if a cause for all of it can be established, but it may just wind up being something we’ll never know. And I’ll continue to have ultrasounds every 2-4 weeks, to monitor things.
Like I mentioned above, we did find out the baby’s sex. (And no, still not telling yet.) I know that it’s a little weird to have JUST written about why we’re not finding out, and then turning around and finding out, but we had our reasons. Basically, if the news was all bad, and baby wasn’t going to make it, we did not want that surprise when s/he was essentially stillborn. And if the news was good, I wanted to know to help me bond with baby better, to help counter all the scary unknowns. Plus, the birth isn’t likely to be what I was picturing. Baby will probably get swept away to the NICU pretty quickly, so better that I can focus on him/her immediately and not be trying to process the news of the gender as well. We’re having a small gender reveal party tomorrow night with family, with a cake (white on outside, pink or blue inside), and we’ll be doing some little fun things like taking votes on what s/he is before the reveal. I’m excited. I was a bit sad that being team green meant no gender reveal, so this is my tradeoff for losing the little fun things I was looking forward to. And after that, then I’ll post on here what s/he is!
This has been my reminder to stay hopeful during the last two weeks of stressing and not knowing, and it looks like maybe my songs of joy are here, or at least coming soon! (And yes, it’s a bible verse, and yes, I’m not religious. It’s still pretty and comforting and applicable, just like any quote from any book can be.)