Biologically Impaired

This is to detail my personal experiences with the intersectionality of autoimmune diseases, wellness, and family planning. Please be warned that subject matter contains sensitive subjects, such as fertility issues and miscarriages, and the attitude far more cavalier regarding these issues than some would probably like.

[biologicallyimpaired]

December 22, 2019

Random Fun Fact: It turns out my husband started teething at 2mo. Definitely Unrelated Additional Fun Fact: Most teething aids are just a hair too big for a 7wo's mouth.

[biologicallyimpaired]

December 11, 2019

Simple Rule: If I didn't ask your advice, don't give it. If you think I should know something, ask if I'd like your thoughts on that particular topic -- and if I say no, then kindly respect that.

I have gotten so much advice for my health, my family, my kids... Busybodies need to go away. For real.

Today's rant is brought to you by another person trying to tell me how to lose weight. I have an ARMY of doctors. I have multiple autoimmune disorders. I have mobility issues. I have digestive issues. I promise that whatever you are suggesting has been suggested, and either implemented and failed or has been eliminated as dangerous to my cocktail of conditions.

Today's suggestion was (again) going vegan or vegetarian. I think bc I'm fat folks assume I don't like veggies. I love veggies. We eat a ton of veggies. The 2 biggest problems are 1) Soy and I don't get along (huge barrier for a lot of the veg/vegan alternatives out there), and 2) My cocktail of conditions means I have a REALLY hard time digesting plant proteins, so at the very least I need eggs, chicken, or fish (which are the most common animal proteins in my diet). No, I don't feel like getting into the biochemistry of it with you; I don't owe you my medical history.

Thank you for dealing with another rant brought on by another busybody.

[biologicallyimpaired]

November 27, 2019

Geez we’re almost through November already?? Goodness. Sorry it took so long to post. Life has been crazy, to say the least.

The surrogate pulled through like a champ and is healing well. We are adjusting to an infant at home. I’ve already had a flare up where I couldn’t do the Mom Thing and gotten sick and couldn’t do the Mom Thing, and tried to deal with all that emotional stuff -- tho luckily I have a great support system. I expect this stuff will show up more in future posts, so I won’t dwell on it here.

For the birth itself… that was something. There are a LOT more nitty gritty details but honestly I’m just too tired to go through them all over again. So here are the highlights:

*He was born Nov 2nd at 8.5lb and 19.5”. He came out with the cord around his neck and blue. They got him breathing (god waiting for that cry felt like an eternity) and bundled him up on me for skin to skin. It was supposed to last an hour and I got like 2 min. He wasn’t pinking up. In the moment I was terrified and angry they ripped my baby away from me right when I FINALLY got to make contact with him for the first time, but luckily they know how to explain stuff to an overly-emotional mom by now.

*They got him warmed up and he pinked up really well. They gave him back to me for more skin to skin. At some point the surrogate managed to pump some colostrum? I really don’t remember how that happened. I just remember getting a syringe with the colostrum in it to feed him. He took to feeding REALLY well. However, I noticed pretty quickly he wasn’t breathing right. I brought him over to the pediatrician to re-evaluate him. After a few minutes under the lamp and being monitored, he just wasn’t breathing any better. They took him to NICU.

*He was on oxygen for ~16-18 hrs (not really sure, it was all a blur; I honestly thought it was longer but timeline tells me otherwise). Then they were on regular air being pushed through his nasal tubes. He was also on a sugar drip & ABs and had to have a BATTERY of blood tests which made him VERY not happy. ~20 hrs after he was born, my husband got to hold him for the first time and we slowly learned how to handle a baby covered in wires.

*At some point during all this, my husband, who had stayed with the surrogate to make sure she was ok, came and got me from NICU to come back to the room. It was a 10min walk away from the NICU. Which is just beyond dumb. We didn’t get a closer room until literally our last night there. I walk into the room, after crying for HOURS at my baby’s bedside, finally a little more stable, and what greets us is an empty crib. I broke down again because that is where my baby was supposed to be. My family was amazing during all of this.

*On 11/3, after pleading with a few folks to give us formula to give him since he was clearly STARVING (he was a chonkster and the colostrum was slowing down), we talked to an amazing night nurse who helped us get it done. Apparently, some asshole nurse with an agenda made a note on his chart for family requested "Breastmilk ONLY" even tho we NEVER said that. The night nurse listened to us, deleted the note, and in 5 min had a script from the NP for baby-led feeding with formula supplementation. He took 9.5mL colostrum and 19mL formula. He stopped crying and slept like a champ. We're livid about the initial note but glad that it was fixed -- and that the other nurses are just as mad about it. [Also, this explains some of the dirty looks I’d been getting and the snark one nurse threw at me scolding me for not “letting” the surrogate breastfeed directly instead of pumping (like, she had a fever and cough so she couldn’t even go there, also that was a mutual decision).]

*On 11/4, the surrogate is sent home and thus we no longer have a room. We are told that the baby will have to stay in the hospital another 48 hrs to wait for another blood culture since the last one came up positive for Staph. We shuttle back and forth that night a couple times to deliver colostrum/milk but we really couldn’t manage more trips since we live an hour away from the hospital. God I felt so bad having to sleep away from my baby. Even worse, I felt super guilty that I actually got a good night’s sleep -- the first good sleep I’d had in a week tbh since I hadn’t slept well leading up to the birth and between the morning of 10/31 and 11/3, I couldn’t even manage a nap.

*On 11/5, my husband was on his way for his trip to take colostrum/milk when we got the call that the cultures were so clear there likely wouldn’t be anything on them (meaning a false positive for Staph on the last culture), and that he was breathing well enough & blood sugar was stable enough that they felt comfortable sending him home. He turned around, grabbed us, and we headed there. They had the IV sugar/antibiotic out before we got there and they let us take off his nasal tube.

I really don’t know how my parents handled it when I was stuck in the hospital for eternity. Because those few days, while nothing compared to how long I was in the hospital, seemed to stretch FOREVER. It was legit the worst feeling I’ve ever had to experience. But all this chaos doesn’t matter. Because on 11/5 our baby came home and our family is whole.

[biologicallyimpaired]

October 31, 2019

He is over 9.5lbs estimated now, and her fluid is at 39 and this is now a high risk delivery. We’re inducing tonight. It’s going to be late because they want to make sure a pediatrician & NICU are in the room and not just on call. Which terrifies me. I hope everyone comes through this all okay. My mind keeps wandering to all the worst case scenarios. I just want the surrogate and the baby to come through this okay. Birth is hard enough as it is without additional complications.

[biologicallyimpaired]

October 30, 2019

Her fluid is at 39 and no one has ANY idea why. All the usual culprits don’t seem to be it. We have an apt with the OB tomorrow and will be discussing the possibility of inducing.

[biologicallyimpaired]

October 29, 2019

Baby’s room isn’t decorated, but it’s “done”. Baby’s area in our room is set up and bassinet is ready. Clothes are all washed and put away. Things are getting real. The anticipation is absolutely killing me and not being able to feel the Braxton Hicks contractions and little kicks… sigh. I feel like it makes the anticipation worse somehow? Like, it’s not just the birth I’m anticipating, but actually being able to have a connection with him? I don’t know. And I feel like I have no right to complain bc this is probably what Dads go through like ALL THE TIME. But geez this is rough.

[biologicallyimpaired]

September 27, 2019

34 Weeks: "Babies born now generally do fine after a stay in the NICU." Y'all, this is a huge milestone. And I am so relieved.

[biologicallyimpaired]

August 15, 2019

I've been wanting to write this out for a while, but feel like I don't know where to start. So I guess I'll just start typing, and hash things out over multiple posts. I am terrified of my abilities as a mom. Not because of my affection, ability to provide, or anything like that. But because of my Lupus. There are days when I can't move at all. I am very fortunate that work affords me the luxury to take a few days off here and there without it demolishing my paycheck. But sometimes it's not just a few days. Sometimes, while I take a couple days off bc I'm bedridden due to arthritis, intestinal issues, stomach bleeds, kidney issues, whatever... I go back to work relatively quickly. But that doesn't mean I'm "okay" once I'm back at work. I barely have the energy to do anything once I get back home. For those first few days, my stepson is incredibly patient with me. It's the sweetest thing on earth. But an infant can't just get by without me for a few days. And what about after those first few days, once I'm out of bed and back at work, yet too exhausted to do anything once I'm home? Yes, there are other caretakers in the house. But that doesn't help the feeling of not being 'enough'. And I know I shouldn't feel this way, but I can't help it. I want to be the all-powerful, entirely fictional, Super Mom. I don't want to tell my kids that I'm too tired or in too much pain to play with them. I want to be able to play with them every time they seek that affection from me.

I’m not trying to throw a pity party or anything -- though I don’t deny the use that crowdsourcing your emotional issues has in working through stuff. I know I shouldn’t feel this way bc life is what it is. I just don't want my kids to think that I love them any less just because sometimes my body doesn't work the way we want it to.

[biologicallyimpaired]

May 6, 2019

App: Here are some milestones in the fetus! Like forming fingerprints!

Me: Hey, did you know that the baby is now swallowing and peeing amniotic fluid?

[biologicallyimpaired]

April 24, 2019

Short Story: They didn’t tell us if it was 10 days or 10 business days and I’m dying. *headdeskheaddeskheaddesk*

Medium Story: We’re waiting on one last set of test results so we can announce. These test are pretty much the last of what we can get in the first trimester and will tell us a lot of genetic stuff and risk factors -- thus what we need to know before we announce..  Longer Story: EVERYBODY IS GUESSING IT. We really can’t hold off on announcing, especially since we’re having a large handful of friends over Saturday. The results are coming back either today (10 days for results) or Friday (10 business days for results... IF they come in on time...). But until we get these test results back, we don’t want to announce. If there are abnormalities, risk factors, or if the fetus is non-viable, we don’t want to be like “yay baby!” and then like 2 days later “well, nevermind”. These tests will also let me start thinking of Parasite as Little Bean and not as Bundle Of Cells. But we really need these results to help the chaos that is all the “what ifs” in our minds right now. Also we can’t hide it Saturday, we really can’t. The surrogate is showing. We normally are very vocal about our process and are suddenly on radio silence. PEOPLE KNOW.

Short Story Again: I’m a nervous wreck and also I’m dying.

[biologicallyimpaired]

April 15, 2019

So last week we all went to the first ultrasound. We got a video of the ultrasound as we watched it, the surrogate got a video of us watching the ultrasound, it was all very cute and almost... normal. Which was a refreshing change of pace. The baby moved; the heartbeat looked good (we could physically see the heart doing its little heart thing); brain and stuff looked like they were developing properly; growth was so spot-on normal that the gestational age was the exact same prediction based on size as cycle (9w3d). Our little parasite looks like it’s supposed to. And that’s great. But it yet again made it hard to keep science brain on -- which I’m still trying desperately to do because we don’t have the bloodwork back yet. She went in for that today (it was a little early last week), and we’ll get some results in a few days and the rest in 10 days -- just barely in time for our announce date bc we REALLY can’t hide it anymore; a lot of folks are figuring out she’s pregnant already but seem to be respecting our desire for discretion... but we’re pushing it. But it’s hard to keep detached, especially when this is something I’ve wanted for so long. Especially when it’s not just a rendered image anymore. Especially when the OB legit has like zero concerns about Little Bean’s development. We have a perfectly healthy parasite. This is exciting. And while I got lost in the normalcy of it for a little while when we were at the office, we were right back at the ‘reeling it in’ phase as soon as we stepped out. I think I’ll feel a lot better about things once some of the prenatal bloodwork has come in.

[biologicallyimpaired]

Responses of neonates to parents and others voices.pdf

Fetuses start to process sound ~18wks earliest, though they don't start to respond to it until a little later. My husband and I both are making recordings of our voices to be played using this cool against-the-tummy set of headphones. We're singing some lullabies as well as reading several chapters from a couple books. While the data sometimes varies on whether auditory recognition is a prenatal or a postnatal development, there is a fair amount of data that supports that prenatal exposure in general influences what a baby prefers overall in voices (be it cadence, language, etc.). We figured it couldn't hurt for the baby to hear our voices either way. We're also planning on leaning against our surrogate's stomach and reading from those books as well, which also gives bonding time with my step son since we can look at him and read these stories to him as well.

This is an interesting book that's (mostly) available on Google Books, Comprehensive Handbook of Pediatric Audiology, 2nd ed. (Tharpe/Seewald), and the link should take you to Ch 3 which has a LOT of info about early life audiology. Ch 2 is about ear embryology which is really fascinating too btw.

The main article linked to this post is some cool research by Ockleford et al (1988, yeah I know w/e), "Responses of neonates to parents' and others' voices" that I really liked. ["Results support the suggestion that sounds which are repeatedly experienced before birth (especially the mother's voice) become familiar to the fetus so that the neonate responds selectively by orienting to them during the first few hours after birth." <-- cool, huh?!]

And there was also an interesting study about male voices and prenatal voice recognition (and lack thereof), but I’m still trying to get access to it. Their concluding line in their abstract makes me want to read more: "The data were interpreted as supporting an hypothesis that prenatal experience significantly influences human newborns' earliest voice preferences." Especially since this is... not what the rest of the abstract seemed to suggest. So I'd like to see their data. It's by DeCasper & Prescott (1984), "Human newborns' perception of male voices: preference, discrimination, and reinforcing value"

[biologicallyimpaired]

Ides of March, 2019

SO: *shows me rendering of what our 6wo embryo looks like* Me: *cooing in babytalk* Aww! Hello, little baby alien parasite! You’re adorable! Look at your little gills! SO: *sigh*

(PS: No, embryos/fetuses don't actually have gills, but if you're looking for some interesting reading on human development, pharyngeal arches are fascinating! This is a fun little primer, but there is a lot of info out there: https://teachmeanatomy.info/the-basics/embryology/head-neck/pharyngeal-arches/)

In all seriousness though, we're really liking BabyCenter's Pregnancy Tracker (here are the links to GooglePlay & Apple). It addresses developmental stuff, what's happening to our surrogate (both good & bad), as well as certain dangers & risks (which we really appreciate, since a lot of trackers seem to be all fluffy happy rainbows... and actually getting pregnant doesn't mean you get a healthy baby at the end of the process :/ ).

As we get further and further, I'm having a harder time not getting attached, especially as the renderings start getting less 'lump-of-cells' and more 'oh, look, that's where your eyes will be'. But it helps I can turn science brain on. We just take one milestone at a time and take things as they come. I think I'll be able to breath better once we have the first OB appointment & do the genetic screen, though unfortunately the first appointment we could get isn't for another 3.5 weeks. But honestly, they probably couldn't do much more before then other than be 'yep, that's a proto-human alright', so it's probably for the better.

[biologicallyimpaired]

How do you feel about comments like "It's part of God's plan" and things like that? I'm religious, but I'm deeply conflicted about those sentiments because I know not everyone is and they can have different reactions about those kinds of things.

I'll start this off by saying that I am not religious nor do I believe in a non-religious approach to "fate", though I have plenty of friends who do hold those beliefs.

It honestly depends on how the sentiment is delivered, to be perfectly honest. Whether it's in reference to our difficulties with reproduction or my health issues, I generally try to approach those comments from the perspective of the person saying it meaning well, because, well, they generally do mean well. For them, it is meant as a comforting thing -- even though, for me, it isn't comforting at all. For me, it being "part of God's plan" or "fate" is almost like telling me to stop trying to do everything I can do to overcome the hardship because, *shrug*, it's part of some grander plan. However, I know that 99% of the time they don't mean it that way, so I just smile, take the sentiment for how it's actually meant, say thank you, and move on. If it becomes a consistent problem with a specific individual, I will pull them aside and explain that while I know they mean well, they come across to me as telling me to give up. Luckily I've only had to do once, and it led to a deep and meaningful conversation about how we grow with our journeys through various struggles, both in and out of the context of religion.

That being said, however, there are ways that it should absolutely NOT be phrased. The worst way it's been said to me thus far has been "maybe you not being able to conceive is God's way of telling you that you shouldn't be a mother." I honestly had to just walk away from them and I legitimately couldn't talk to them for a week, it made me that angry. I KNOW they were trying to be comforting. But the thing is, phrasing it that way negates ALL THE OTHER WAYS someone can become a mom -- medical intervention, surrogacy, adoption, step-parenthood... It was like they were telling me that pursuing other options was pointless, and that other moms out there that became moms that way were somehow less legitimate. (Hell, I’m a step-mom myself. Was she negating that existing identity as a mother?) It made me feel that she would see me as a lesser mother if I wasn't the one to carry the child through a conventional conception. And that HURT. I still need to talk to her about it tbh, but even typing this is making me angry-sad all over again, so I may not be able to calmly talk to her about it yet.

So long answer short, even though I don't find those comments personally comforting, I take them as the comforting sentiment they're meant as -- but be careful in how they're phrased. There's a lot of subtext you could be accidentally be putting out there without realizing it.

[biologicallyimpaired]

March 3, 2019

I say this knowing that some of my real life friends follow this blog, but please note that this information is still not for general public consumption for my friends and family. Mostly because of potentially devastating ramifications. But in the interest of cataloging our journey, I am including it in the blog. This morning, our surrogate greeted me with balloons decorated with “Congrats” and drawings of positive pregnancy tests! I’m tempering hope because I know this is only step 1 of 1000, but this is the furthest we’ve gotten and I can’t help but let myself be super excited by the news.

Only 999 more steps to go...

[biologicallyimpaired]

December 13, 2018

I know it’s been a while. Sorry about that. Lost track with all the legal stuff then planning out with the surrogate. Etc, etc. Can’t recommend enough to get a lawyer. Seriously. Our lawyer is the bomb dot com and has been a font of knowledge and an amazing asset in this journey -- worth every penny because she’s saving us a ton in other legal fees we’re navigating around too.

In other news, we’re on our second round of insemination with the surrogate, who if you recall from previous posts is a very close friend who is letting us use her eggs and uterus for free so all of our fees are just for legal stuff. Because she’s amazing. The first implanted, but she miscarried almost immediately, but we’ve been through this enough that it surprisingly wasn’t as devastating as I thought it would be. Probably because we knew not to get our hopes up; and because we honestly didn’t think the first attempt would take tbh.

[biologicallyimpaired]

I don’t think people realize how damaging fake pregnancy announcements can be </3