Finch update and other fascinating tidbits

We had our 28 week ultrasound for Finch this week. He looked great! We even saw him taking some practice breaths. He’s measuring in the 97 percentile (no surprise), and, it appears that, to date, he has no cord entanglements, which is such a relief.

But while it’s a relief, it’s also weird and heartbreaking, because, although no one will ever know for certain, it’s very likely that some of Matthew’s cord entanglements had already formed by this gestation. It makes me so sad – to think that Matthew might have been this ticking time bomb with no one coming to his rescue. Life, including whether one lives or dies, just seems to be entirely based on dumb luck, and I really hope that luck can stay on our side this time.

With this pregnancy my placenta isn’t anterior, rather, it’s kind of off to the side, which is just the type of strange thing that definitely would happen to me, but I’m thankful nonetheless because it’s been much easier to feel movement. I’m hoping this means that the last 8.5ish weeks of this pregnancy will be “easier,” or at least marginally less traumatic with fewer than 17 hospital trips or whatever it was last time.

Because Finch is measuring in the 97 percentile, my doctors seem slightly alarmed. I guess sometimes when they see a big baby it can mean some type of fatal fluid issue or gestational diabetes, or, I don’t know, perhaps it could mean that both parents measure in the 99 percentile of height as adults and just have big kids (see chart re: previous two other babies)… But, alas, doctors here are obsessed with gestational diabetes, and, even though I’ve already tested negative for it, they want me to repeat the test to ensure I don’t have late onset, which is like déjà vu all over again, as this is exactly what happened with Joel, who proved to be your typical big-baby-with-big-parents.

Don’t get me wrong, I appreciate their caution, but, at the same time, I’m fairly certain that umbilical cord accidents actually claim the lives of far more children compared to gestational diabetes, so it’s a little frustrating when medical professionals remain relatively unconcerned about the umbilical cord, especially with me, given my history.

There’s been some turnover in my maternal fetal medicine (MFM) practice, and, although my MFM doctor and one of our sonographers are generally supportive of our requests and shenanigans, there are some other staff with whom I’m unfamiliar. While I’m usually able to build a good rapport with each one with whom I’m acquainted, there are some with whom this isn’t so much the case…

This week at my 28 week scan, although I’m confident there were no significant cord issues, and I’m comfortable waiting until 30 weeks until my next scan (at which point I’ll also start 2x weekly non-stress tests (NSTs) and full biophysical profiles (BPPs) with specific emphasis on cord imaging, adding another one NST per week starting at 32 weeks), I was not entirely happy with the amount of time devoted to looking at the cord.

Additionally, during this appointment, some remarks were made that frustrated (read: infuriated) me, and, if I hear any single one of them again, I’m thinking I might sort of explode… Some of these remarks include:

“Looking at the cord isn’t standard of care!”

Believe me, I am well aware, as this is the part of the reason that my first child is dead. I give zero shits about standard of care. I’m, so very unfortunately, no longer your standard patient.

“We’ll take a quick peek at the cord, but it’s just to indulge your anxieties! If we see an issue, there’s nothing we can do about it!”

Bullshit. All of this. First, if you don’t take more than “a peek,” I will find someone who will. Second, only part of this is to “indulge my anxieties.” I had a very real child DIE from a very real cord accident, and I’m not super interested in having this happen again. Third, if we find an issue, there ARE things we can do – we can monitor the snot out of this pregnancy (even more than initially planned). I can go on continuous monitoring (which my doctor has already agreed to if necessary), and we can take the baby out early.

“Your second child made it here without issue – perhaps you aren’t even high risk anymore!”

50 percent of my previous pregnancies have ended in death. This seems high risk as fuck, if you ask me.

I was proud of my ability to calmly articulate some of my thoughts to a new doctor. And, said doctor must not have hated me, because, on our way out, she chased us down and informed us that she has done stillbirth research, though focused on intrauterine growth restriction (IUGR). She then asked us a bit about Dr. Collins, so we filled her in.

“Has he ever seen a repeat stillbirth?” she asked.

“Yes. Yes he has,” I answered. “More than once over the years, actually. He’s seen repeat cord accidents resulting in repeat fatalities and also some repeat cord accidents resulting in near misses.”

I could tell by her reaction that my answer was sobering. Doctors like to tell patients that this sort of thing can’t happen again, but, although it would be extremely rare, the truth is, it can. I don’t understand anyone who declares anything “can’t happen again.” It honestly seems stupid. Like, if someone were in a car accident would anyone be like, “Oh don’t worry – now it can never happen to you again!” Like this shit makes zero sense and isn’t based in things like fact or reality.

Of course I, and everyone in my position, should take comfort in knowing a repeat tragedy is highly unlikely, but I think it’s incorrect to conclude it “can’t happen again” and then feel completely reassured by such thoughts.

This doctor did explain, “Fetal movement is, hands down, the best indicator of fetal well-being, so I always tell my patients that if there are any concerns in this area to not waste any time eating sugary foods or calling – just go straight to the hospital.”

“Good,” I answered, “You are totally right.”

Although I couldn’t help but think about the deaths this (monitoring fetal movement) doesn’t prevent – the cases in which the baby is moving perfectly until the moment he/she isn’t (i.e. Matthew). I think this is why we could benefit from improved imaging practices – perhaps they could identify babies who are potentially facing death via an acute event.

*****

In other news, my stay at home mom (SAHM) gig wasn’t working as planned after only a hot second. My anxiety was soaring through the roof to the point that life felt unlivable, so, Mark’s mom came to the rescue (again), which has helped immensely. When she’s here, I’m also here with her, so Joel’s getting loads of attention, and I’m way less stressed, so she’s basically saving my life. (And when Mark’s mom isn’t here, my dad comes by periodically to save my life). I’m still trying to work when I can too – I work mostly during naps and evenings, but, if I have meetings, I’ll work a bit more during the day and rely on Mark’s mom (or my dad) to help.

None of this is a long-term solution, so I need to figure things out, but both staying at home and working from home would be difficult under normal circumstances, so I’m realizing that, given the cards stacked against me (i.e. crippling anxiety), potentially I was expecting the impossible from myself… I’m hoping, with the help of my therapist, I’ll be able to try it again in a few months with more success. In the meantime, I continue to be thankful for my support.

My therapist said something interesting the other day… He explained that in most situations involving ambiguity, people choose to dwell on the possibility of the negative outcome occurring.

“This can’t be true,” I explained, “Because I don’t know any pregnant women who seem even remotely concerned that their baby could just die. Or if they’re concerned, they’re absolutely not dwelling on this possibility.”

“It’s because most pregnant women don’t consider their situation ambiguous,” he replied.

So this is just AWESOME and gives me so much hope that I’ll someday be able to relate to the world again (and that progress will be made in regards to stillbirth prevention)… Like here I am like, “Not only am I in an ambiguous situation, I’m hyper-focused on the potential that my baby could die, because one of them did once.”

Meanwhile everyone else is like, “YAYYYYY!! Not an ambiguous situation!!”

Geez, like how does one ever cross such a sizable gulf?

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12 thoughts on “Finch update and other fascinating tidbits

  1. I’m back after a five month absence. I miss reading your stories but needed the break. I certainly hope your pregnancy goes well for you and can manage the help you need.

    Liked by 1 person

  2. I think you’re pretty awesome for carrying Joel and Finch after losing Matthew. I don’t know if I’ll ever try again after Albert.. the fear paralyses me. I look around and see all these “YAY.. I’m not in an ambiguous situation-mums” and feel jealous and angry and alone. One of my very first blog posts was about how I wished they could be forced to live the horror film reel of memories that plays in my head. If they could know just a fraction of what it’s like then the smug ignorance would soon be wiped from their faces.. sounds harsh but it’s how I feel when I have to deal with ppl like that. I’m not sure I’ll ever cross that sizeable gulf and get back to that place we were before our sons died…

    Liked by 2 people

    1. Yeah, I’ll never cross it either… I’m jealous and angry, etc… I’d love to force everyone to watch my memories too, or to live this life for a full 24 hours, preferably one of the “early days.” Pretty sure I’d get no judgment from anyone, ever again. I get what you’re saying about another. It’s a lot – super terrifying again, etc. The good part is, you don’t have to know the answer right now. Albert’s still so little – one day at a time… You might always feel this way, or you might someday feel differently, and either way isn’t wrong… I just wish we could have all of our babies here with us, no matter what that number may be. I’ve been thinking of you and Freddie lots today and will continue to do so over the next week. xoxo

      Liked by 1 person

  3. I read this earlier but was too upset to comment. I’m still upset so you most certainly can delete my comment if it is too negative. First, I am so glad that things are looking good for Finch. However, I am peeved at the responses you received regarding looking at the cord. First, why isn’t it standard of care to look at the cord? If the technology is available, and cord accidents account for about 10% of stillbirths (~2400 annually in the United States), then WHY AREN’T DOCTORS LOOKING AT CORDS???? Shouldn’t the goal be to reduce the stillbirth rate? Ok, rant over, sorry. And I can relate to that ambiguous situation thing. I never considered stillbirth to be a possibility during either of my pregnancies (although I had some weird off-vibes during my second pregnancy which did end in stillbirth). If I ever get pregnant again I will be terrified.

    Liked by 2 people

    1. Your comment isn’t too negative. Not at all. I’m equally angry, and I think this comes across frequently in my posts. Standard of care isn’t all that great in this country for a myriad of reasons… I don’t know that the medical profession does have a goal of reducing the stillbirth rate… I don’t see much evidence to suggest that they do. It’s so heartbreaking and unfair to these poor babies and their families, including us, as I’m thinking some percentage (not sure what percentage) of the 24,000 babies who die annually would have had a chance under different circumstances.

      Specifically with the cord, they don’t look at it for liability reasons. They’d rather take their chances and gamble with babies’ lives, and the fact that it’s rare is good enough for them, presumably because they’re overloaded with patients, and when a baby dies, it most often times is someone else’s baby – they’re sad about it but can chalk it up to this unpreventable inevitability – something that “just happens sometimes.” I think this, to them, is preferable to opening themselves up to more legal liability… There can be no medical malpractice suit for an obvious, easy-to-see cord accident, if standard of care doesn’t require them to look at the cord in the first place. I think this is what they’re so afraid of – more legal liability than what they already have, therefore nothing changes… Babies continue to die. The cord stuff is unbelievable to me – the only reason my doctors even look at it now (after having lost Matthew to an obvious cord accident) is because I force them to. I mean, shouldn’t it be common sense that they’d at least want to look at it in a pregnancy after loss? Nope. It’s important to be your own advocate. In this situation and in life.

      Sorry – this was long. I’m just as fired up about it as you are. It’s unbelievable.

      And yeah, PAL is terrifying… It’s really just white-knuckling it each day until the end, hoping for the best. At least this is how it feels for me. xoxo

      Like

  4. I’m sorry that healthcare professionals are making such comments. It’s infuriating. Our job is to listen, to help, and to ease as much as it is to image, to take a blood pressure, or to advise on potential courses of action. It pisses me off to no end when I hear coworkers say things like “I’m sure it will be ok” or dismiss a patient’s legitimate fears and meltdowns with “oh, don’t talk like that.” It’s not helpful or honest.

    Liked by 1 person

    1. You seem wonderfully gifted at your job. And you’re absolutely right in striving to strike the difficult balance of providing comfort without dismissing fears or providing false assurances. I hate it when people tell me things will be okay. It’s like, “Really? Because you don’t actually know that.” xoxo

      Liked by 1 person

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