Yesterday was the next round of measurements. The first official follow up to the original meet with Maternal Fetal Medicine and Perinatologists. Seems strange considering how many appointments I've had in the past month!
The important stuff:
The raw numbers are bigger, Samuel's vents have increased in size. They are now measuring at 19.7mm and 22.3mm. His head is now measuring 25 weeks, so three weeks ahead as opposed to the 2 weeks ahead he was measuring last time.
Over all, the basic ratio of amount of fluid to head size really hasn't changed too much. This is good.
Optimally, the vents would have remained the same size as last time making the ratio of fluid to head size less and decreasing the pressure that is still compressing his brain against the side and top of his skull. But truthfully, we didn't expect that, so while yesterday wasn't exceptionally great news, it wasn't terrible news either.
Just more of the same, we'll keep watching and see what happens.
The dr we saw yesterday.....well, that's a different story.
The other appointments at MFM have consisted of having the u/s and the measurements done by the sonographer, and then having a Perinatologist and the genetic counselor join us for some additional looking around and reviewing of baby via u/s, then the sonographer leaves while we discuss, ask questions, make plans for the next visit.
So yesterday we had the u/s (with a wonderful sonographer!), and then she hopped up after going over measurements with us and said "I'll go get the dr." Just what we'd experienced before, and what we were expecting.
About 10 minutes passed (a loooong time!) and a dr that we've not seen or met before came in. She introduced herself, sat down and proceeded to explain that she was very familiar with our case as she was working as the head of the genetics department and they don't see hydrocephalus very often. Ok, fine. Good, you're familiar with our pics and measurements. That's great!
She then said, "so....how are you guys doing?"
Uh, ok. Didn't seem like a genuine "how are you dealing with all of this? are you coping ok?" kind of thing, more like a 'let's throw something out there before we get a lull in conversation' kind of "how are ya?"
Awkward.
So I cut the crap and Aaron and I asked the two or three small questions we had.
Almost everything that came out of her mouth contradicted everything we have discussed with other drs over the past 7 weeks. Not to mention all the research we've done on our own.
She told us yesterday that this isn't necessarily "bad", we'd have to wait and see. Hello? have you seen the pictures? His brain is compressed into a thin layer. The fluid is building. This certainly isn't "good".
She told us that an MRI before birth was just a pointless expensive test and shouldn't be considered until after baby was born. Directly opposite of what the perinatologists had told us. Not to mention completely opposite of everything that leading national researchers have found over the past 10 years. Hmmm....neurosurgeon specializing in hydro research vs your opinion....which one do you think I'm going to trust? Exactly.
She then launched into telling us that there is no point in transferring my care to the peris here, that I should just keep seeing my midwife. But that at 30wks they want me doing a non stress test weekly and they will monitor my bp and weight and urine also to make sure it's done accurately. Uh, double work? double payments? I'm sure the insurance will go for that thanks.
Oh, also she said we needed to be consulting with a pediatric cardiologist, and having fetal echos done to monitor baby's heart. His heart is FINE. That is one thing they stressed repeatedly every time we've seen him. We have seen every single millimeter of his heart and it is perfect. We pointed this out and she replied "oh, well, there could be genetics issues that will cause heart problems." When Aaron questioned what the point of doing amnio was to rule those out if they aren't even taking into consideration that the amnio came back perfect she said "Well, there are a huge number of things not detected in amniocentesis. Just because it came back fine doesn't mean things aren't wrong." Silly us.
When Aaron asked about increasing head size necessitating early induction she jumped ALL over us. He said-and I remember it distinctly-"If we get through 7, 7 1/2 months and we start approaching 8-8 1/2 months and the baby's head is getting too big for a vaginal delivery, will we be able to induce at that point to avoid a c-section?"
Her reply is what cemented in my mind that it was pointless to even try discussing anything with her. That I'd just sit and let her go on and discuss it at our next appt with a different dr.
She said "ABSOLUTELY NOT! We do NOT induce early. We DO NOT induce before 39 weeks, it doesn't happen. I mean, if baby's life is in danger and things are getting bad, we could talk about MAYBE 38 or very rarely 37 weeks, but that would only be after you've had steroids for baby and an amnio to check for lung maturity. Otherwise, you may as well just terminate your baby. Inducing early is essentially terminating your baby. This isn't about YOU. This isn't about not having a surgery just because you don't want one. This is about the baby's outcome. We will not take the baby out early to avoid surgery. No one will. You will not find a dr or hospital who will induce you before 39 weeks. No one will do it. This is about the best possible outcome for baby, not about you. And you should be delivering at the U of U. Then you are right next to the Childrens Hospital. You don't want to be stuck here recovering from surgery while they take your baby up there away from you and you don't even get to see him. Besides, it's not a big deal. It's not like having a cesarean now will make it so you can't have more kids."
I wanted to smack her. This isn't about me? Are you freaking kidding me? You don't think this also affects my well being and health? Better to have me put my own health and life at more risk for a few more days of baby in utero and just deal with the repercussions for my other 7 children? WHO ARE YOU?! Have you not read a single medical journal in your entire life that plainly spells out the added risks of a major surgery instead of a vaginal birth for both mom and baby? Are you not aware that the vast majority of Obstetricians will not take efforts to halt labor after 35 or 36 weeks? Are you not aware that "full term" babies are 37 weeks? I desperately wanted to point out that I have had an elective induction at 38 weeks! I have given birth to half of my children at 38 weeks! That does not equal non-viable babies! Should I be arrested for attempted termination for my 38wk induction? Oh. my. word. You have got to be kidding me. And I may be way out in left field here, but in my opinion, inducing for a vaginal birth at 37 weeks to avoid major surgery sure seems like a medical justification vs a personal "elective" choice.
Oh, but wait. Now let's pull the standards on hydrocephalus babies into it. The average delivery is 36 weeks-a pretty much full term baby. In utero long enough to develop well, but out soon enough to get a shunt in to relieve some of that pressure. Hmm. Some dr's will even deliver at 34 to give baby's brain more of a chance for development on a normal level without that excess pressure from fluid. And that's just scratching the surface.
I am still reeling from the fact that she told me that inducing my baby early is "essentially terminating your baby. You can't do that. You have no say in that."
I find myself needing to take deep breaths. And I am a fairly calm and level-headed person.
Having heard more than enough of her opinion on delivery, I asked if there were any modifications I needed to make to my life and activity level for baby's sake. Can I keep running? Should I be toning things down? "I don't see why you should change things. You should be fine. You won't be able to do anything in a few months, you should live it up now."
Wow. Killer wording! again!
At that point I was really sitting at the very edge of my patience. I attempt to be as respectful as possible to those around me. Especially to those involved in my medical care-I feel that most of them have earned that. But I had had enough of her opinions.
And then before she left, she talked about how sometimes babies with fluid issues produce too much amniotic fluid. I point out that I've been measuring quite a bit ahead since 16 wks. She told me that some women have extra fluid, so at the end we'll start measuring amniotic fluid in these ultrasounds as well. Some women get big with the fluid. I again point out that I have been measuring 4 to 6 weeks ahead since 16 weeks. "Is this a problem now?" I asked her. "No. Some women get big because of too much fluid and that's a problem." She then motioned toward my belly and said "pff-you're not BIG. It's not a problem." "But I am still consistently measuring large," I say. Yet again. "Yes, but you don't look big," she replies. *sigh* just because my uterus sits further back that average and doesn't try to jump out the front of my body the second I pee on a stick doesn't mean squat. The fact that my uterus is measuring ahead is a much more reliable indicator of what is going on than the fact that I don't "look big" to her.
Honestly-I cannot recall a time when I was more frustrated by a medical professional than yesterday.
Actually, I take that back. There was a nurse when I was in labor with my 4th child. After she sat in the room with me while my dr hooked me up to antibiotics due to my being group b strep positive, and hearing him say to me "you're not going anywhere-you're having this baby!", she tried to convince me to go home. why? Because I was 38 weeks pregnant. She gave birth at 42wks and her baby ended up in NICU so she was convinced that I should just go home and not have this baby. She lectured us for probably 20 minutes on this. Uh, what? My dr caught wind of it, and she was through with her shift. right then. (and then faced disciplinary action because of her actions)
But that's the only other time I can think of someone being so inappropriate to the situation.
Funny thing though-I thought to myself the entire hour long drive home "there is no way she could be a perinatologist with everything she just said. I wonder if she is even an OB?"
So when I got home I looked her up online.
Any guesses as to her position?
She is indeed head of the genetics department there. As well as at another facility. And rightly so, as she is a CLINICAL GENETICIST.
While it was slightly infuriating that someone who is a geneticist, not an OB felt the need to dictate just what would and would not happen with my care and delivery, it was also morbidly hilarious. Sure, she works with high risk OBs. I have no doubt that she picks up a lot. She's probably a brilliant scientist. But she needs to stick with the reports and numbers and clinical reports, and not with assuming the role of an obstetric care provider. Some people just don't come with bedside manner. She was not an awful person, in fact I'm sure she's a very nice person. She just has no right to be dictating my care. Or my baby's.
I made my next appointment on a day when I know for sure that the perinatologist that I would like to speak with again will be there. As well as the genetic counselor we've been working with.
I am the type of person who goes in with just a couple of questions, if that, when I have appointments. I'll then ask anything that comes to mind as we discuss things.
So for me to actually jot down a question or two or more is a huge thing.
Within minutes of my appointment yesterday I had a page and a half of questions and concerns.
I spent a good hour talking with Aaron last night trying to explain all the fallacies of what was handed us yesterday, citing research that I've read, and even basic obstetrical facts to help explain why so much of what she said yesterday was just not worth losing sleep over right now.
I am anxious to meet with an actual perinatologist again in a few weeks. I am more anxious to discuss with her my concerns with everything that was thrown at us yesterday. I am slightly wary of what will happen, and hoping that I don't end up searching for a new facility and specialists to take over my care. But in my gut, I feel like the Dr that we met with at our first visit to MFM will be consistent with the things we discussed weeks ago when we first met. It was a relief in the beginning to feel comfortable with a specialist and not feel like she was looking down on the lowly patient who knows nothing, and I anticipate that this will continue with that first dr that we met with.
At least I very very much hope so.
