Ports in Storms

 I mentioned how hard it is to get in to any clinics, which seems to be a universal experience. The best regarded clinic in the area is the Masonic Institute for the Developing Brain, affiliated with our major research institution. I called them last year about a neuropsych assessment and they weren’t taking new patients at that time. I called back again in June because my pediatrician referred us and I was hoping the referral would get me in the door. The scheduler was super kind but said they were not taking new patients for any of their clinics, even with referrals. Further, they don’t start medications until age 7.

In chatting with the kind scheduler, I mentioned how A’s behavior had shifted so drastically. When she heard that, she mentioned that they have a PANDAS clinic. The doctor there is taking PANDAS patients only. The scheduler booked an evaluation appointment with a LCWS for the PANDAS clinic, and maybe if A met those criteria, he’d be seen there. I didn’t know much about PANDAS, but A seems to lack some of the necessary criteria, like OCD or tics. I was insanely grateful that they’d offer an appointment, but I was worried it would be a waste of everyone’s time. Still, any port in a storm, right? So we went last week.

 The LCSW was amazing and kind and patient with us. She took a very detailed history, then asked about what we might be willing to do. Medication? Yes! New psychologist? Yes! She said she’d meet with the PANDAS dr, but that even if we didn’t fit in there, she’d find some place for us. I held my breath.

Well she did it. I just got the message that the psychiatry clinic is taking A. Their doctors have discussed his case and think they can help him. I should get a scheduling call sometime soon. I know this still might not work, but I’m so unbelievably grateful that we’re going to get seen somewhere that should routinely see kids with more severe needs. Hopefully this helps us down the path to some place better.  

No One Listens

 Circling back to the feeling of not being heard, and our challenges with helping A. It's a repeat of 2016-2018 all over again.

There are very few psych med providers for a 5 year old. I could find 3 in our metro, and one of those isn't taking new patients. The other was going to have a much longer waitlist.

So we're with the one who would take us after an 8 week wait.

In March, we did a neurospych eval. We got four diagnoses from that. Everyone agrees with diagnosis #1: ADHD. Diagnosis #2 seemed plausible, until we took A to the appropriate specialist, who within 20 minutes, demonstrated that A actually had all the skills that the neurospych said he was lacking. Diagnosis #3 was flat out wrong. Everyone - long term psychologist, teachers, OT, family, even our psych med prescriber who has met Aaron ~6 times via video - everyone thinks #3 is wrong. Long term psychologist is angry that the neuropsych administered the test so badly as to get this diagnosis. Finally, diagnosis #4 is plausible, but not a great fit. Neuropsych said the dx hinged on one single behavior. Psychologist suggests a potentially better fitting alternative diagnosis for #4, aligned to that behavior. School thinks #4 right, but acknowledges they don't know about the diagnosis psychologist suggests.

The psych med prescriber, after hearing diagnosis #4, is focused only on it. She says, repeatedly, that ADHD is unrelated to aggression. She says that A's aggression is due to his inability to articulate what's upsetting him, so he acts out instead. And this is where I'm back to being ignored by doctors. First, there's a huge body of research about ADHD and aggression. They are most definitely related. A lack of impulse control means that when a person gets angry, instead of finding a solution, they physically act out. A is the king of 'act first, evaluate consequences later.' He destroys even things he wants, because he has the impulse to take something apart/break it, and he acts before thinking if it can be fixed.

The second thing is that Aaron's years of OT and psychologist visits have actually made him REALLY good at identifying and sharing what's wrong and asking for what he needs. He'll tell us, "it's too loud in here" or "I'm hungry", or "I want to have more Daddy time." He'll tell us if his tummy or his clothing hurts. He's great at telling us, "I need more space." He'll tell his sisters to leave his room, or that he wants a toy they've got. Despite all that, everyone we're working with insists that the violence is because he can't communicate his needs. Finally, finally, last week at his psychologist's office, the lightbulb clicked with the psych that this isn't a communication issue. A had told the psych that he was 'getting red' (his words for getting angry) and needed a safe space. He then told the psych what he wanted - a corner by the desk and some toys. Psych got that for him, and all was well. He was happily talking with the psych about something that interested A, and then just like that, A started pelting the psych with crayons. And the psych turned to Mr.Lines and said, "Is THAT what happens at home?!?" and MrLines said, "YES!" That got them to the state of, "huh. I see what you mean." So now the psych gets it, but he's stumped. And the med prescriber doesn't get it and still thinks aggression is due to an inability to communicate. And I just don't think so. 

We've now tried two different atypical antipsychotics for A. The first seemed to be great until June 1 when all hell broke loose. The second appears to have no impact. All the research I see recommends the third for kids with ADHD. But all that research also says that treating the ADHD ought to happen first before treating the aggression. And yet with a medication provider who doesn't want to treat the ADHD, we haven't done that. Until A turns 7, I don't have many alternative providers. I'm on a few waitlists for places that might help sooner, but even those all say they don't prescribe for 5 year olds. How can we wait another year and a half, though? What happens to A, to T, to E if we wait? Why aren't there better options for kids and families facing this situation? Why do I once again feel like I"m screaming into the void, because the people who ought to help just aren't helping?

Failing My Girls

One of the hardest things about losing Alexis, Zoe, and Quinn was the feeling that I couldn't protect them. I tried, but it was out of my control and I completely failed to protect them.

The other hardest thing was that, at least with Quinn, I knew what to do to protect her, and the doctors ignored/didn't believe/wrote me off.

I am somehow back in the hell of being unable to protect my girls and unable to get medical professionals to take me seriously.

A has had issues with aggression since around age 3.25. We've been seeing a pscyhologist and OT since age 3.5. That gave him new skills, and reduced the aggressions some, but did not eliminate them. I worried that he'd get a reputation as, "that kid" at school when he started K. So we started medication shortly after he turned 5. The medication plus the skills made a huge difference. I could cook dinner for 20 minutes, or clean up after for 20, and let the kids play with each other on the same floor with no one getting hurt. Mornings were even better, with hours of collaborative play.

Then he woke up June 1 as if a light switch had flipped. Now I couldn't step away for 2 minutes, without him really hurting his sisters. He'd be happily sitting at the breakfast table making up Paw Patrol stories one second, then stabbing them with a fork the literal next second. I couldn't walk away to get a second helping if someone asked, or help E use the potty, or get a towel to clean a spill, or anything, without him hurting someone. He'd just transition from happy to violent in an instant. 

MrLines and I tried everything we could think of. More frequent therapy. Emergency medication change. Hours a day of dedicated A and Daddy 1:1 time, in case this was attention seeking behavior. The violence didn't waver at all. A shut T's arm in the door. He pushed E down the stairs. He bruised my ribs by kicking me there, and stabbed me in the hand so badly I couldn't use my thumb for a few days. He and T were still sharing a room, and for the first time ever, he'd wake up early (unsual for him), and before anything at all happened, he'd walk over to T's bed and hit her while she slept.

And just like that, I'm back in the hell where I can't protect my girls. My beautiful, living, breathing, thinking girls, who both now flinch when A runs toward them. It's the damdest thing, because 30% of the time when he comes over, it's to give a hug or a kiss, or to bring them a toy or play. Of course, when they flinch, or I block him because I assume he's going to hit, not hug, it reinforces with him this message that he's not safe, and it makes the behaviors worse. So not only can I not protect my girls, I'm damaging my little boy when I try to do so. He seems genuinely distraught by some of this. He can't figure out what's happening with him any more than we can. He is so sad, as is T, that we moved him into a different room. 

This is long enough I'll save the 'writing me off' part for another day, but I'm struggling. In some very real ways, this is worse than losing the older girls. That was a moment that was out of my control and then a lifetime of missing them. And I don't think they ever actually knew that I failed them. This is an ongoing failure on my part to help any of my kids. The girls are looking to me to protect them, and I can't make it work 100% of the time. Closing T's arm in the door? We were coming home from school and T and A got out of the car first, because they can undo their own buckles. In the time it took me to get E out of her seat, A had done that to T. It doesn't help that T and E won't always follow my instructions like, "stay in the kitchen with me until I put the food away." or "T, come to the bathroom with me while I help E with the potty." They want free range of the house, and in pushing past me to go where they want to go, they make themselves vulnerable to their brother. When they do that, I lose physical separation I'd bee maintaining, and someone gets hurt. So I'm failing, every single day, and I don't know what to do. 

This Sucks

Kids are getting bigger. E will be 3 soon, and she remains easy and delightful. She tells jokes, is silly, and when she gets upset, she's usually quite easy to redirect into happy giggles. She did preschool last year, and although she was the youngest in her class, her teachers said she was ahead of many peers by year end. She's a ton of fun and often the bright spot in my day.

T is 5, and will start K in September. She's got an incredible memory, does great on logic, and generally likes to be helpful. When you're 1:1 with her, she does amazing. She's the biggest delight when she's just with you and not her siblings. She likes dance and music/singing and still loves her stuffed frog. She loves art crafts, and does great with both writing and coloring. She plays, lots of pretend, with A. She's got basic math down, and she's reading a number of words without help. Her teachers say she's a model student, if quite quiet. She struggled making friends in school this year, although she really wanted to be friends with one other kid.

T doesn't like having to share attention with siblings. She'll throw tantrums and is completely resistant to any calming techniques. "That won't work, not anything will work!!" is something she typically yells when upset. The tantrums were down a great deal in frequency, but thanks to increased tension at home, there's been some ramping recently. She also has big reactions. If she's throwing a tantrum and I tell her I need to take her somewhere she can calm down, and would she like to walk or be carried, she'll tantrum more instead of responding. When I pick her up to carry her, she'll inevitably scream louder that, "you hurt me!!" The slightest tap, touch, or bump and she wails about being hurt if she's the least bit unhappy. She also complains on most outings that "my legs are too tired! I can't go any farther! I want to go home." It's not just complaining though, she'll fully collapse on the ground and refuse to move. Of course, if you mention something like, "we'll get icecream when we get to the car," her legs suddenly reinvigorate and she runs there. She constantly challenges me, but in a way that I feel mostly capable of stepping up to. 

A. A will also start K in September. He loves to learn about things. His jam is really exploring new situations where he can learn something. That especially true if it relates to any type of construction, making anything, building, engineering, or sloths. He still loves sloths. A constantly wants to be moving. Thanks to 18 months of therapy (psychologist and OT) and two years of IEP services at school, A's actually really good at naming his emotions, telling people what he needs, and even building relationships with others. He's grown tremendously in that space. He's also still the kid who will hug E if he hears her crying, and think about how to help her. 

But here's the hard part. After starting A on medication in March, and seeing a great improvement in his aggression, suddenly a light switch flipped and he's intensely violent. It was an overnight change. He was doing great, and then one Saturday morning he woke up and he can not be left alone with his sisters for even a second. They both have bad cuts and bruises from him. He almost broke my ribs yesterday by kicking me in the stomach when I was working with him to dry up water he'd spilled on the carpet. Many of the attacks are random. He'll be happily playing with his sisters, or even by himself, and then stop to hurt someone. I sat with him in the back row of our van for a long drive. Just watching his face as he was watching a movie on the drive was surreal. He's completely fine and happy one second, and then this wave of  rage sweeps across him, and he attacks whoever is closest/weakest. Once he feels the need to hurt someone, he will not stop until he's done so. I've had him repeatedly chase me around our kitchen island, as I backed away and tried to redirect him to his safe spot and his beloved stuffies. Touching him to restrain him makes it vastly worse. We've abandonded the break times we've done for years because there's no way for the adult to avoid injury.  Putting him in the safe spot in his room doesn't work either, because unless you lock the door, he'll keep popping out to throw hard or sharp objects at me. I've had to lock him in there twice, because he was so violent and would kick, claw, and bite when I tried to hold him. In those instances, he destroyed T's stuff. He's shut her arm in the door, stabbed both girls with a fork, and then with Magnatiles, and hit them over the head with a wooden toy box. Mr. Lines and I have rearranged our work schedules to make sure there are always two adults if all 3 kids are present. Even then, in the time it takes to help E wash her hands after the bathroom, he can sprint across the room and hurt T. 

This is so. fucking. hard. So hard. I can't keep the girls safe. Honestly, loosing our older girls was easier than this, because it happened and it was over. My body failed us once, and that was that. This is me being faced every single day with not being able to keep them safe. I can't help A, either. My awesome, sweet boy is trapped inside this rage. 

We're changing rooms this weekend, and putting A in E's room, and E in with T. We've already made one emergency medication change for A, with no impact, so we're discussing making another change today. Because of the huge snap in behavior, which does align to an illness, we're getting evaluated for PANDAS in early July. I don't even know how to survive that long. I am just barely holding it together now. 

Rolling Dice

 Life is a roll of the dice. As far as I can tell, there are very few guaranteed outcomes. You wake up each day (hopefully), and see where things take you. I've considered myself lucky that even when life has taken me to awful places I never wanted to go, I've had the practical, physical, mental, and emotional resources to deal with it.

Procreation is also a roll of the dice. Will it work? If it does, what will be the status of any offspring produced? Who will they be and what will they be capable of? A’s story is his to share, but as I’ve mentioned here, being his parent, and trying to be a good parent, has challenged me. I’m not sure I have the right resources to deal with the challenge. And I don’t know where to go next.

I’ve searched for and found professionals. The first play therapist we found was a bad fit. She decided that the root of A’s behavior issues was the sleep training that we did at age 1. She also told A that the play therapy room was a safe space and “you can do anything you want to do in here.” Then she got quite upset when A filled a play tea kettle with sand from the sand table and poured it into a bin of musical instruments. She got even more upset when he did it again after she told him not to. I’m not sure how someone with 30 years of play therapy experience was surprised by a 3 year old pouring sand into containers after first being told that he can do anything he wants to, and then being told that he can’t do THAT, but she was. We mutually agreed to stop seeing each other after a few months.

The second play therapist uses PCIT, and that seems a better fit. He’s a licensed psychologist with 25+ years in the school systems before moving to private practice. He spent the first ~5 months working on how DH and I interact with A, essentially making sure we weren’t the root of the issues. That’s good, because for all I knew, we were the root of the issues! Therapist seems to be satisfied now that our interactions should be facilitating desired behavior, and yet, no improvements are happening. 

A month or two ago, A got frustrated during a session and threw the game the therapist was trying to play with him across the room. A threw it after repeatedly telling the therapist that he didn’t want to play any more, so he was clearly verbalizing his wants. Throwing was a normal reaction for A when forced to do something he doesn’t want to do. I think the moment a dozen ‘fishing for feelings’ game pieces went flying across the room was the moment when the therapist really understood that the behaviors I’ve been describing are beyond normal 4 year old boy behaviors. 

I expressed my concern to the therapist that it’s been months of sessions and months of me implementing the ‘homework’ and yet no improvement in behavior. Therapist acknowledged my frustration. He also acknowledged that usually he doesn’t have such a hard time connecting with kids as he’s having with A. Great. My kid is extra broken. 

We’ve also done months of OT, but OT, while extremely helpful, has taken us as far as we can go. You can equip a child and their family with endless tools, but until the child and family use them, there’s not much more you can do. 

So I rolled the dice and this awesome kid came up, but he’s hard. He snuggles, and cuddles, and giggles, and he’s curious, and amazing, and funny. He loves his dad and his stuffed puppy and sloth. I think he loves me and his sisters most of the time. He’s creative and he’s got so much potential it’s unbelievable. But he’s hard and I don’t have the right resources yet to help him with that hard, and I’m not sure where else to go to find the right resources.

Reminder: Check Yourself

 The amazing Mel from Stirrup Queens gives a priceless reminder each week: don't forget to do your backups. In this digital age, that's true, and I'm always grateful for the nudge.

I'll add a different reminder for this week: don't forget to do your skin checks.

Eight or so years ago, my dad's super fancy, doesn't-take-insurance, concierge doctor was doing an exam and noticed a small spot behind his ear. It was a location he'd never have seen on a self check, because even with a mirror, you can't really see the top, back, outside of your ear. He was in his 60's at the time. She told him she didn't really think it was anything, but she was going to biopsy it just to be safe. The biopsy came back as melanoma. 

I had always been skeptical of the ideal of concierge medicine. That said, no provider operating under insurance guidelines that compensate for approximately 32.5 seconds per patient would have spent the time to catch and biopsy that spot. I strongly believe my dad is still here today, albeit with slightly less of his ear, because his doctor was so thorough. 

Anyhow, that diagnosis, combined with my own pale, mole and freckle covered skin, earned me annual derm visits to check my skin for any concerning areas. I went in for this year's visit, 6 months late because my original appointment was booked for the day I had norovirus, then my rescheduled appointment was the day I had COVID. I had a spot of minor concern to me on my forehead. Turned out to be pre-cancerous. I now have a very ugly freezer-burn mark on my forehead, but hopefully won't find myself with squamous cell carcinoma in a few years. 

If you are a category at risk, schedule your skin check, it's worth the time and cost. If you're not sure if you're a category at risk, ask your doctor.

4.5 and 2 - Long overdue updates

 It's been a long time and a challenging one, but it's interesting to see how the kids have grown. 

T is fiercely independent in some ways, but absolutely wants to have all the attention in others. She doesn't like to do things for herself, she wants you to do things for her. It seems to be her way of confirming that you care about her. She's the one who tires easily and doesn't want to walk/run/ride as far, so sometimes it's just a lack of energy meaning that she doesn't want to do something herself, but she still wants it to be done. We've been working for months with her on how to ask politely and be patient when asking. These things are still not her strong suites.

T is smart, she has an amazing memory. If something is lost, you can count on T being the one to find it for you. If T tells you a story about what happened or what she saw, there's a good chance it's true. At home, she displays very little empathy. She can be silly if prompted, but at age 4, she'll be the one to remind me that "No, mom, he's a stuffed frog" if I ask her if her stuffed frog Mr Jumpy did something silly like eat the last cookie. In other words, she's a bit more serious than I tend to be! That doesn't mean that she doesn't giggle and have fun, but that she trends serious, not silly.

T is creative and usually wants to be the leader when playing at home. At school, her teachers tell us that she's always looking out for her brother, making sure he's safe. She even tries to help keep him out of trouble there, which is funny because she's the very first to try to get him into trouble at home! She also doesn't talk up or engage with others at school, unlike at home. We are putting T and A into separate classrooms in September with the hope that she'll be able to make her own friends and come out of her shell if she doesn't feel she needs to be A's caregiver at school. We've noticed at summer camps that she'll be the one to remember the names of friends, and to point out friends who are in the same camps together. I hope she can make friends this school year.

T's misbehavior is usually clearly driven by a desire to get more attention, or because she's tired. She's pretty good about going to her room to take a nap when she needs it. She can be trusted to play alone and she's a great helper. One on one, she's absolutely delightful. I think the experience I would have had raising her if she'd been an only child would have been vastly different than the one I have had with her as a twin and now an older sister. She spent most of age 2.5-4.25 having really spectacular tantrums. The worst one was last summer and was a full 90 minutes of top of her lungs screaming. Despite what any of the books say, no amount of acknowledging feelings helped them. No calming techniques helped. Any intervention just enrages her more. We've found that she just needs time alone with her stuffed frog to calm down. 

T is also gorgeous. I genuinely think she's beautiful. Everyone in our family is average, at best, so I have no idea where she gets it from, but I'm happy for her. She has stunning hazel eyes and beautiful curly hair. I grew up basically being told I was ugly by my parents, so I hope she knows how pretty and how smart she is.

A is still pure energy and an ear-to-ear grin. He never stops talking, or singing, or yelling. He has a beloved stuffed puppy and stuffed sloth and the stories he will tell you about their adventures show his joy and all the things he's learned. He loves helping his dad in the garage or his grandma in the garden and yard.

A has boundless curiosity, and for the most part, it's because he really wants to know and understand. He loves to cuddle and hug and climb you like a tree. He can't sit still. The only time I've ever seen him still was the first day that he had COVID. We knew he was going to be sick before the fever started because he laid down on the sofa with his grandma and didn't move for about 20 minutes. That has never happened before. A wants to be outside, playing and digging in the dirt, tearing things apart, or running around the house. Even sitting on your lap, he's a tornado, constantly shifting position from top to bottom.

A can be so amazingly sweet to his sisters, especially to E. He'll help her get her stuffed animals, he'll push her around in boxes, which she loves. He'll offer to feed her food and give her big hugs and play wit her. Unfortunately, at his worst, he'll also physically lash out and hurt her, kicking, hitting, and scratching. Sometimes it's because she's going after a toy he wants. Sometimes it's just because she happens to walk close enough to his legs that he can reach her to kick. His worst behaviors seem to stem from being told 'no'. We've done a lot of PCIT work. It seems that attention isn't what he wants, and he's actually great at telling you what he's feeling. After six months of work, our therapist told us in not so many words that, as parents, we were doing all the things we needed to be doing, so the issues weren't caused solely by our parenting styles. On one hand, it was good to hear that we hadn't "broken" our kid. On the other hand, that leaves us without a "fix" that we can implement ourselves. At the room, A just can't modulate his frustration from being told 'no' into behavior other than aggression. That aggression might be physically hurting a person, an object that a person cares about, or it might be screaming loudly because he knows that no one likes it. 

A absolutely does not follow directions. We're 9 months into OT and PT and we've made progress on hurting other people, but no progress on following directions. If he doesn't want to do something, you mostly have to physically redirect him. And once you have to get into physical redirection, then you're running into behaviors that stem from being told 'no', as described above. A is off the charts high on sensory seeking, so he's always looking for loud noises, making loud noises, and looking for tactile stimulation.

A likes to break things. Every toilet paper roll holder has been broken off the wall, all of our window screens that he can reach have been destroyed. Basically any object in our house that he can reach, he's broken. The psychologist we've been seeing since Jan said back then that he doesn't diagnose kids with ADHD until age 6 or 7, but by June he commented that we should plan to have A evaluated soon because his behaviors are consistent.

A tests high normal on intelligence and receptive language, and just barely scrapes into low normal on expressive language, specifically articulation. His speech is garbled and most people struggle to understand him. I really, really hope that time and therapy, and maybe the right medications, can help him because he is such an amazing kid. I worry that some of the amazing is going to get lost under the problem behaviors.  

E is the too-good-to-be-true kid I didn't dare dream of. She's all cuddles and smiles. She potty trained herself at 20 months. Legit, she said: "pee, potty! Diaper off!" and a week later, she was 100% done with daytime diapers. She's been using 10+ word sentences at 23 months, and 5 word sentences since 21. She is the kid with the sense of humor, joking with us on a fairly regular basis, albeit in 22 month old fashion. She shows empathy, worrying about both siblings if she hears crying or sees them upset. She adores her big brother, asking for him and always wanting to play with him.

E has a tenacity that I'm envious of. When she decides to do something, she'll keep working at it until she succeeds, typically without whining or crying. The downside of this is that we've had to move her out of her high chair already, because she decided to figure out how to unbuckle herself (and she did), and we've had to get rid of the baby gate, because she decided to figure out how to unlock it (and she did). The upside is that so far she mostly listens to directions and can get herself safely to and from the places that she needs to go. This includes climbing on and off the potty herself. Although she looks like a drunken Olympian mounting the pommel horse when it comes to getting on the potty, she can indeed succeed when she says, "Me do it!"

E is a picky eater who would happily subsist on milk only, or milk, cheese and pizza. 

A Little Adjustment

 I haven't been in this space in a long time. It hasn't been because I didn't want to be. Or because I didn't need to be. Honestly, it's because I've been drowning. 

Last June/July our amazing nanny started having health issues. She was out for days, then weeks, then months. Without warning. Temporary replacements were either impossible to come by, or terrible. The husband and I juggled kids and work, and I did all of the legwork trying to find temps. Meanwhile, I was trying to do my full time job, while my company was laying off what turned out to be more than 10,000 people. 

Child care changes coincided with some negative behaviors in A. Then preschool started 3 days a week and those behaviors amplified. Drastically. To the extent that we were seeing a child pscyhologist by October, an occupational therapist by December, and he was on an IEP at the ripe old age of 3 by year end. He's an amazing, incredible, awesome kid. But his behavior challenges definitely don't bring out the best in me, and I continue to struggle with that. There are definitely days when I have to restrain my own behavior and remind myself that I have more control over myself than my toddler.

We said goodbye to our long term nanny in November, tried to hire a new long term nanny, and that was a catastrophic failure that should only be described over alcoholic beverages or icecream sundaes.

The shining light was E, who continues to develop far beyond her age. By year end 2022, it was clear that A was going to need 5 day a week preschool in 2023-2024 if he was to stand a chance of success in kindergarden. It was also clear that E would benefit from preschool if we could find one that would take her at 2. So we decided to find an au pair instead of a nanny. We matched. She arrived. On day 4 she informed us she'd lied about all of her experience and she left, stealing our towels, picture frames, and toiletries on her way out. We were once again sans childcare. 

A series of temp nannies ensued while we waited for a new au pair to arrive. While we had two absolute gems, we had others who produced booze/ice-cream worthy stories. In the midst of handling much of this childcare ourselves due to unreliability, I was taking A to weekly therapy appointments, trying to hold my work team together as dozens of people we knew, including people I'd hired, were laid off, and managing nearly 100% of household duties, as my spouse's reaction to his own stress level was to completely shut down and not help with anything.

Oh, and then there was the sickness. In early February, the entire family fell to the norovirus at the same time. I have never been as incapacitated as I was during the first 18 hours. I couldn't even stand up for more than 30 seconds. Two days after I was finally eating 3 solid meals again, the first of us got COVID. We all eventually got it, causing the cancellation of T and A's 4th birthday party. COVID transitioned into ear and sinus infections for the kids and me. We had 4 days of being done with antibiotics for that, when the nanny who had been here for two days left early because she wasn't feeling well, and then texted a day later to say she had Influenza A. E became symptomatic for that a day later. T and A both got strep before E was healthy again. Literally, from early February to June 2, there were 7 calendar days when every member of the family was healthy. With the exception of strep, I caught 100% of the things the kids had. 

Our new au pair arrived earlier this month and she's incredible. The kids all start school in September. It seems my job is safe. The husband is acknowledging his own mental health, which I hope will lead to action on it. I'm hoping all of these things will let me get my head above water, because it isn't there right now. I am surviving because my kids need me. I am managing the household because I think if I drop the rope on any of the things I'm doing life will get worse. I am staying engaged and involved and trying not to lose my sh*t with A's behaviors because I think that's the only shot he's got at long term improvement. I am not screaming at my husband to ask him how the hell he can sit by and watch me do everything, from getting up at 4 am to clean the toilets and mop the floors, to staying up till 9pm to complete the dozens of tasks he's been forgetting or ignoring, like cleaning his car and moving the car seat into it so I can help our au pair practice her driving in a car that isn't filthy while Tess and Aaron are at camp. I'm not screaming at him, because I don't think that would help make anything better there, either.  But damn, it's hard. It's all really, really hard right now.

This was the life I wanted. Overall, I'm still incredibly glad it's the life I've got. I don't want to trade it. But a little adjustment would be nice. 

Incoherent

 So that whole uterus thing? Yeah. It's gone. I'm not really in a coherent place when it comes to my feelings on the subject. I'm angry and sad and guilty.

The short of the medical facts: I kept bleeding after my c-section. Had an amazing recovery otherwise. I was driving by 13 days out. Walking 5 miles around the local lake at 3 weeks out. I felt awesome. But the bleeding didn't stop. And I kept getting positive pregnancy tests through 6 weeks post partum. So we did a scan, and no surprise, there was retained placenta. I was booked for a d&c at 7 weeks post partum. If you've ever had surgery, you know that when they have you sign the consents, they describe all the terrible things that could go wrong? With d&cs, they always mention the risk of uterine perforation. I've had at least half a dozen before and been ok. I wasn't ok this time. My OB ruptured my uterus, despite ultrasound guidance. That earned me an emergency hysterectomy. Do not pass go. Do not collect $200. Do not keep your uterus. 

They attempted to do the hyst laparoscopically, but there was too much scar tissue, so they reopened my c-section incision and did it that way. Thus I have both the abdominal and the belly button incisions. 

I'm angry because I didn't want to have a hyst, and my OB did nothing to avoid it. I feel as if this entire pregnancy, she's wanted to be sure I never attempted pregnancy again, so she was relieved by this outcome. That might not be true, but it's how I feel, with some reasons behind it. I'm also angry because even if I still had a uterus, I know I couldn't ever be pregnant again. If I had known how awful E's pregnancy would be, how she'd have NICU time, how I'd be away from the twins for so long, I never would have gotten pregnant with her. I'm SO glad I didn't know, and she's here, but since I do now, I would never transfer my remaining embryo. Thus I shouldn't be upset about the hyst, but I still am. I'm angry that it's not my choice. 

How do you grieve losing something you no longer needed, but still deeply wanted? How do you grieve the fact that you wanted to still need it, but you lost not only the need for it, but the thing itself? And how do you cope when you feel that you shouldn't be grieving at all, because even if you had the thing and the need, finances and space and age would prevent you from using it? We can't afford a fourth, we can't fit a fourth, and we never wanted a fourth, so being unable to transfer the last embryo should not make me sad. And yet, grappling with all of this, I feel sadness. 

As for the guilt, I feel guilt over that day 7 embryo. He deserved a chance and he'll never get it. More than that, though, I feel a larger guilt. When I was in the hospital trying to reach viability with Quinn, I started bargaining with the universe, or God, or the devil, or anything that might listen. I promised to be a nicer person if my daughter could live. I offered money. I offered my house. As the days passed and I got more desperate, what I was willing to offer grew. By the time she was born, I would happily have traded away years of my life or limbs off my body for her survival. If god, or the devil, had walked into my hospital room and offered to trade my uterus for Quinn's life, I'd have said yes with no hesitation at all. None. And now here we are. Baby E is alive and well and I don't have a uterus. It's a trade I'd have readily made. So I feel guilt that now I have her here, I'm angry over the loss, when I'd have happily accepted that loss to have her. I know that doesn't make sense, but as I said, I'm still not coherent. I'm just hurting. 

The Wrath of the Diaper Gods

 It's official. I have been smote by the diaper gods for my pridefullness. 

E is at the age where blowouts are pretty frequent. No matter how careful with diaper positioning and configuration (wings out, no accidental folds), she wiggles and poops a lot, hence, blowout city.

Yesterday morning I got her up, changed her, paying attention to properly securing her diaper, and fed her. Then, as she sat on my lap and I attempted to burp her, I felt it: the type of seismic rumbling that means baby will need a new diaper ASAP. Before I could even stand, my nose confirmed what my hand had suspected, that my dainty little girl had created the kind of poo that would likely require a bath, followed by a change of diaper (hers) and outfit (hers and mine)!

When we reached her changing table and I examined her clothing, I was stunned to find no yellow anywhere. The diaper had held. In my mind, I immediately started congratulating myself. "Oh yeah! You rock. You can diaper like a pro. That's a diaper of the week award there!" I told myself.

I carefully placed a clean diaper under the old one, then unfastened it. I have never before seen a diaper so full - front, back, side to side, completely filled. In my head, my cocky self-accolades grew louder. "Look at that. That's diaper of the month. Diaper of the year!"

I grabbed her feet and lifted her bottom, while pulling the old diaper out and away from her. After setting it carefully away from her kicking range, I began reaching for a wipe when she decided to pee. Niagra Falls has nothing on my sweetie. The torrent was unstoppable. It overflowed the clean diaper under her. It saturated her outfit, the changing pad, the changing table, and my sleeve. And although it was "just" pee, since I hadn't wiped her yet and she was covered in poo, all that residue washed away in the pee deluge, leaving yellow lakes everywhere it touched. The adorable outfit I'd been so happy to see clean moments earlier? Now a sodden yellow mess. 

Thus, let me say, "I hear you, Diaper Gods. I bow before you at the altar of the diaper pail. Never again will I be cocky, lest I need to do more time in the confessional of the laundry sink, speaking to the priests of Oxyclean."

Big Sisters

When I was admitted at 31w3d, everyone was planning delivery at 31w5d. I didn't want it, I didn't feel heard, but without a voice, I couldn't change it. My goal, my only goal, was to reach 32 weeks. It was the difference between Friday and Monday. It meant crossing the threshold into a gestational age where the long term outcomes are the same as those of term babies.

I'd been having contractions for so many weeks by that point, with many of them very painful, that I thought reaching my original 36 week date would be impossible. Still, I wanted 32. 

My past antepartum stays had been at the large university hospital. They have a dedicated antepartum wing, with specialized nursing, a surgical suite, and all the support you get when you're one of a dozen patients in a childrens' hospital. There were social workers, chaplains, a weekly support group, a lending library, crafts kits made by volunteers to keep the moms occupied, and other things to help time pass. There was also a level 4 NICU, which is why I'd stayed there before with Quinn and during my 27 and 29 week stays with T and A. That hospital isn't where my OB delivers, though, and it's farther from my home. Once I crossed the 30 week mark, I could deliver at my local hospital, which has a level 3 NICU. That's where I went at 31w3d, and so that's where I spent my 5 weeks of antepartum care. There was no support system there. I was just the lone woman in the L&D ward who was trying to stay pregnant, rather than deliver. I was an oddity. 

I saw my living kids four times. Picnics in the hospital parking lot, next to the freeway. It was the highlight of my stay. Here's the one photo DH got of us together.

The hospital I was at has many rooms, but only two that have two windows. One, on the right side of the hallway, is reserved for moms trying to deliver med free. The other, on the left side of the hallway is used for antepartum moms, or loss moms. That's where they put me this July. That's also where they put me in November 2016 when I came in to deliver Alexis and Zoe. That's the room my oldest girls were born in. The room they died in. 

I had mixed feelings about that room. Practically speaking, it was a great room. Spacious, renovated, a full sofa bed for DH to sleep on. Two windows, and as decent a view as any at the hospital. Emotionally speaking, it was a blend.  Over those 5 weeks, I laid in the bed and remembered being there years before, the morning the girls were born, watching the sunlight stream in the window across my belly and knowing it was my last day with them. I remembered the intense emotional pain. I remembered the physical pain. Those were not pleasant things to remember, especially when scared for the baby I was carrying. At the same time, I felt close to Alexis and Zoe. I felt like they were watching over the baby and I. It was the perfect example of a concept I struggle to remember: AND. Being in that room was heartbreaking AND comforting at the same time. It feels contradictory, but it wasn't. It was right, somehow.

As for the results, I think I have my oldest girls to thank for reaching 36 weeks. There were days when I had to stop working and lay flat to get the contractions to stop. Days that I had to skip showering, because standing up that long made them regular and painful. Days that the paper where I tracked my contractions filled up before noon, and I told DH to have our nanny stay late in case I'd need a c-section that night. Knowing what I now know about baby E's lungs, I don't know if she'd have made it had she come at 32 weeks. She probably would have had CLD, and she definitely would have been transferred to the other NICU without me. That almost happened with our 36 week birth, so they could place a chest tube. I also know now, from what my OB told me, that my uterus had thinned, close to the point of rupture. Had the contractions been any worse, or had I tried to wait another week, our ending would have been quite different. I choose to believe that my oldest girls watched over her, and me, and kept us safe. I am forever grateful to them for having been a part of my life and for continuing to be one, even if they aren't physically here. 

While it's not my happiest memory, here's a photo the day before my c-section. I was so relieved to have made it, even if I was wearing leopard print pants and trying to fit all my toiletries onto a pedestal sink! 

What I Have and What I Don't

Let's start with the end, the most important part. What I have and what I don't have. Today, I have a beautiful, amazing, 4 month old daughter. She is sweet, happy, constantly smiling, and she sleeps well. She's a unicorn of a baby that I never would have dreamed to ask for. I feel so much joy every time I'm with her. 

Today I also no longer have a uterus. Not by my choice, unless you feel that choosing between death and a hysterectomy is a 'choice.' 

I also will never have the experience of taking a baby home with me on my discharge. My beautiful, happy little girl spent her first days in the NICU, on a vent. That sucked. 

I think the complete story of the last ~9 months is too long to fit in one post, so perhaps I'll start at the beginning for today. Let's go back to where I left off before. I had a TAC. In total honesty, thanks to the anti-nausea meds during surgery, the best I ever felt in the first and second tris were the days immediately after the TAC. I was low nausea for a while and it was so wonderful that the pain of abdominal surgery when pregnant was just a nuisance. Then the nausea and the vomiting came back. I kept throwing up into the third tri, and the nausea was debilitating.

At 26 weeks I started having contractions, but they slowed with tocolytics and L&D sent me home.

At 28 weeks, I had a routine growth scan, and the OB thought they saw bleeding on the baby's brain. I was referred to MFM and spent the 48 hours between appointments terrified, learning what my options might be if baby had had a catastrophic brain bleed. MFM found no issues with the brain, but did find an umbilical varix, a dilation of the umbilical cord that raises stillbirth risk. I was advised to repeat scans every 2-4 weeks, and schedule delivery at 36 weeks if it did not resolve. Surgery was booked for 36w2d.

At 29 weeks I had bad, painful contractions and returned to L&D. They found a UTI, gave me antibiotics, tocolytics, and a course of betamethasone for lung development. I was basically placed on home bedrest at that point. 

At 31 weeks 3 days, the contractions were consistently 8-10 minutes apart, although not at all painful. I had promised my OB that I'd call in if the tocolytics didn't stop contractions within a day, so I called in. Was told to come to L&D. L&D confirmed frequency, and at that point I was told I was getting the second round of betamethasone, magnesium for neuroprotection, and a c-section 40 hours later, as they would not risk going any longer with these contractions. That put the intended c-section date at 31w5d. Same as the twins. I knew what a 31w5d delivery and NICU stay looked like. I did not want that.

I lost my shit. I pointed out that the contractions were NOT painful, and that I was not ok with a c-section until that changed. I said that loudly, and repeatedly to everyone who came to my room. No one listened to me. OB said I was at risk of uterine rupture. I asked for an MRI so we could see if there was thinning to actually determine risk. OB said it was MFM's call. MFM wouldn't agree and said it was OB's call. OBs changed three times due to shift change and none listened. By some miracle, contractions slowed to 4 an hour by about 36 hours out. Still, no OB would come talk to me. Thirty minutes prior to my c-section time, anesthesiology was in my room talking about the plan for surgery when my nurse finally got the call to cancel the section. The agreement, though, was that I remained in-patient until delivery, which we all expected would be by 32 weeks.

I did continuous  monitoring for days. I never had less than 2 contractions an hour. Sometimes they were painful, but not frequent. Other times they were really frequent, but not painful. At those times, I tried to keep the monitors from picking them up. 32 weeks passed, and I was still pregnant. Then 33. I hadn't seen my kids since 31w3 days at that point, since they weren't allowed in the hospital due to COVID. I got permission to take a wheelchair ride to the parking lot, where we had a picnic together. That became our weekly routine: parking lot picnics once a week. I kept working from my hospital bed, dropped monitoring to twice a day unless more contractions started, and held my breath. There were days when we came damn close to surgery, but always slowed things down enough. The varix resolved. Five weeks passed. I asked my OB if we should try to delay delivery by a week, since 37 weeks is better than 36 for baby, but honestly I was starting to have more painful and much more frequent contractions by then, so I was somewhat relieved when she said 'no.'

Surgery was at 1:30 pm at 36w2d. It wasn't until they were prepping me that I realized how scared I'd been the whole time. Scared of rupture, of a more premature baby. Scared of the middle of the night section, without my husband. Scared my twins would stop loving me because I'd been gone so long. Scared I wouldn't get to be with my baby because of prematurity. 

Everyone assured me that since I'd reached 36w2d, I'd get to hold the baby and have her in my room with me. Baby girl was a great 6.5 pounds. I got to touch her little feet through the plastic surgical drape and tell her I loved her for two minutes. Then the NICU took her for evaluation in the OR, with the intent of giving her back to DH and I to hold while surgery finished. But she couldn't get her oxygen levels up enough. So I was told she was going to the NICU for CPAP. And off she went with DH. And I sobbed on the table while a very nice nurse held my hand. Honestly, I'm sobbing again as I write this.

In recovery, I kept asking to pump, since feeding within the first 2 hours is critical to establishing milk supply. They kept telling me no, because the baby would be back to me at any moment and we could try breastfeeding. But she never came back. After two hours, they wheeled my bed to her NICU bay, and I got one absolutely glorious hour of skin to skin with her, before I was taken up to my hospital room on another floor. At some point that night, after I said goodbye to her, her lung collapsed and she went on the vent. It would be days before I could hold her again. 

So  that's part one. Baby girl is glorious and worth everything I've been through. I certainly didn't get the pregnancy or post partum experience I'd hoped for, but I have no regrets about having another living child. Maybe the picture below can help you understand why.  This picture reflects her personality, always smiling and happy.

Not As Uneventful As Desired

 Yesterday was my tough day, reaching the same milestone in this pregnancy that marked the change of my life in Alexis and Zoe's pregnancy. I wanted a boring day. I didn't quite get it.

The day overall went well. I studiously avoided going into the bathroom where my water broke in 2016, and also made the conscious decision to not wear the pants I'd laid out for myself, which coincidentally happened to be the exact ones I was wearing that past morning. (Side note: Adidas warm ups, you are now at least 12 years old, get tons of use, and are showing no wear at all. I'm damned impressed.) Those behaviors might not be the most well adjusted, but I can live with that. 

I passed breakfast and lunch uneventfully. DH usually takes the kids starting at dinner time, since food smells are tough for me. He takes them on a walk after dinner now that the weather is improving. They left as usual. 

I got a bit worried when bath time arrived and they weren't home from their walk yet, however there were no text messages to me. I got vastly more worried when I heard DH's voice asking as he came down the stairs "Is Mommy still up?"

Turns out they decided to go to the playground. I'm too risk averse to do that by myself with both kids at this run-in-opposite-directions stage, but DH has a different risk tolerance than I. So, playground. One part of the playground has a platform from which you can slide down a fireman's pole. DH did this to reach T more quickly when she needed help. Apparently A was watching. DH was helping T when Aaron climbed up to the platform and took a flying leap off the edge, without grabbing the pole at all. 

Good news: the playground had a new, thick layer of tanbark down, and A was wearing his full snow suit, which provided good cushioning. The bad news: his face hit the tanbark and he got cut up. Pupils were fine, he could correctly answer questions about what he ate for dinner, and after a relatively small amount of crying, he seemed fine if clingy. He played and behaved fine through bath time, and when asked what hurt, just pointed to his cuts. He seems fine this morning.

All's well that ends well, and this seems to have re-set DH's risk tolerance a bit. Still, a lot of ugly 'what-if' scenarios ran through my head. DH is/was prone to nightmares, during which he'd start screaming loudly. I usually have to wake and calm him. Since doing EMDR, they've dramatically decreased in frequency. Last night, though, at 2 am, he had another.  

Ok, Universe. We've gotten the 'eventful' part out of the way. Let's still with 'boring' from here on out, eh?

Not An Easy Day

 Tomorrow is going to be a hard day. Tomorrow is Sunday. Sunday is the day I hit a new week of the pregnancy. Tomorrow, Sunday, I'll reach 17 weeks. 

The last time I turned 17 weeks on a Sunday was October 2016. Zoe's water broke right around 7 that morning. That was the start of a lot of changes in my life, my outlook, my values. While I'm thrilled to be the person I am today, with the life I have today, I'd give anything to go back and have an uneventful 17 weeks the last time it happened on Sunday. 

I am hoping with every fiber of my being that the most eventful part of tomorrow's 17 weeks will be me giving shade to whoever it was that ate the last gluten-free chocolate chip cookie in the house. I am also sad and scared. I miss you, my girls. Please keep watch over your newest sibling, no matter what happens.

It's Clearly Not About Me

 ​​​​​In previous pregnancies, we’ve always shared fetal sex as soon as we knew it. We’re not doing that this time. “Why,” you ask? Two words: my mother.

After we lost Alexis and Zoe, at some point during a conversation with my mom, she shared that “everything would turn out all right, because I had a dream of you holding a baby boy, so I know you’ll have a living baby.”

Let’s unpack that for a second. One, when you’ve lost two children, nothing ever in the world will make it “all right.” Nothing. Remove those words from your vocabulary when talking to a loss parent. Seriously. Dick move #1. Two, I had wanted girls. Badly. My mom knew this. My mom has always shared that when SHE was pregnant, she wanted a girl. This would suggest she might have some empathy about sadness over losing girls and having boys. Nope. Dick move #2. 

I sat with that for a while, and then told her that while I appreciated that her words came from a place of love, the reality was that in order for her dream to “come true”, we had to lose our girls. We never wanted three kids (ha!), and if we’d had two girls, we never would have had a boy. In this context, I asked her not to bring it up again.

Then I got pregnant with Quinn. Until the NIPT, I was convinced I was carrying a boy. I foolishly mentioned this to my mom. She burst out with her dream again. I reminded her of how hurtful that was and asked her not to bring it up again. Alas, we all know how Quinn’s pregnancy ended.

I don’t remember her mentioning it during A and T’s pregnancy, but after they were born, there was an “I told you so” type moment where she raised it as I was cuddling A. Gloating that your daughter lost enough babies for your prophetic dream to come true? Ultimate dick move. 

During our IVF rounds, she told me she’d had a new dream of me holding a baby boy, so she thought it would work out.  Thus, we are not sharing sex. I want neither gloating that she’s right if it’s a boy, or being reminded of her dream repeatedly as her way of “warning” me, if it’s a girl. I will deal with any comments after the fact if/when baby is here safely.

All this pisses me off. I want to be able to talk about baby with appropriate pronouns. I want to share this information. I don’t want to worry about accidentally spilling the beans. I get so little joy in pregnancy that it really makes me angry to have this taken away. I’ve advocated, bluntly, for myself to no avail. I love my mom, I’m grateful for the million other ways she’s amazing. More importantly, my kids love her, so I have no intention of cutting her out until birth. It’s just a lousy, no-win situation. It’s not about her, but she’s determined to have the last say, so suddenly it is about her. 

Abdominal Cerclage, Round 2

 My first abdominal cerclage was an awful experience. The hospital wasn't great, I was in the 8s and 9s on the pain scale, my digestive system broke down on me, and I wasn't ready to return to work four weeks out, although I did.

I was scared stiff about how this one would go, given that I already felt like hot trash from the HG. It was a breeze. I would do it again, no hesitation, if only because whatever the anesthesiologist gave me afforded me three, gloriously nausea-free days! So, here's the recap. This was with Dr. Sumners, and Ascenion St. Vincent Hospital in Indianapolis.

Tuesday: Flew to Indy.

Wednesday: Pre-op appointment. I had a detailed scan, looking at baby and cervix. After that I met with Dr. Sumners, several of his nurses, and another doctor who was shadowing him. He told me at this point that he was planning to place both a single TAC band, and a TVC. He never said anything, but I could see when watching the ultrasound that the lower portion of my cervix was already dilating. We discussed my pain from last time, my allergies, and timing for disability leave. He was thoughtful about my concerns and had sound responses. He told me he wanted me on anti-contraction meds for 48 hours post surgery.

After he left, his nurse walked through things with me like the pharmacy I'd use to fill my prescriptions (pain meds and anti-contraction meds). I had sent Dr. Haney a 3 page summary of past surgeries and pregnancies. The nurse expressed her appreciation that I had that together and she didn't have to pull it from my hundreds of pages of charts! She was also really sensitive and didn't make me rehash all past pregnancies, but said she'd fill those in from the summary I gave her. That was a thread with nearly everyone I worked with: real sensitivity to my past losses. I appreciated that a lot, as I find I rarely experience that compassion. 

Thursday: Surgery day. I had to check in at 6:45 am for an 8:45 surgery time. The hospital was relatively empty, with just my mom and I and two pregnant ladies who were clearly checking in for c-sections. I was taken back alone for pre-op. Changed out of all of my clothes (but held onto the piece of Quinn's blanket that I had brought with me until the last moment). Was told I have great veins and had an IV placed. The nurse spent nearly an hour going through my full medical history. She was extremely thorough, which was nice. Everyone agreed to put 'Zofran' as an allergy on my chart, to ensure that I'd be given something else instead. We discussed the best tapes to use for that allergy. There was a TV in the pre-op room, so when she left I turned on something mindless.

Dr. Sumners and the Dr who had accompanied him the previous day came in. He assured me that he'd been practicing on the patient before me! I was asked to confirm what surgery I was there for. 

The anesthesiologist came in next. We discussed my issues with Zofran and preference for Reglan. I brought up some of the pain control options, and the fact that morphine makes me puke when I take it orally/IV post op. He listened to me, but kept trying to steer me back to what he wanted, which was standard spinal and post op PCA. In the end we agreed on a nerve blocking medication, decadron for nausea, a standard spinal with morphine, and Norco for post op pain medication. That was an awesome combination. The worst my pain ever got was a 5, and most of the time if I laid still, I didn't feel any pain at all. Best of all, the nausea went away. I can not convey how awesome that was. I could lay still and feel good and human again, even right after surgery. Such a difference from last time!

I was moved to antepartum a few hours post op, and they did a doppler check so I could hear baby's heartbeat All sounded good. They insisted on clear liquids only, to give my digestive system time to recover. I made sure to get a full dose of Miralax in, along with as much apple juice as they'd give me! 

During the day, I drowsed in and out, thanks to the meds. I didn't get much overnight sleep, because I was having my blood pressure measured every 10 minutes. It kept being very low (80s over 50s), so the alarm would go until I pressed the call button for the nurse to come in and silence it. A few ties the alarm went off because my heart rate was high - basically any time I rolled over I'd get THAT alarm, too. Frustrating. 

Friday: Around 5 am Friday morning, after not sleeping due to alarms, I realized I was having contractions. I also realized that I hadn't been given the anti-contraction medication since right before they wheeled me back for surgery, almost 24 hours ago. It's supposed to be taken every 6 hours. I asked the nurse and she said there weren't orders. I told her there should be and asked her to contact the Dr since I was contracting. She asked me to wait for rounds around 9 am and I told her I wasn't comfortable with that. It took about 2 hours, but she asked the resident, found out I was supposed to be taking it, and gave it to me.

Around 9 on Friday morning the nurse removed the catheter and I got up to pee. Side note: last time I had a TAC, peeing burned like the worst charley horse you could imagine. This time, almost no pain at all, despite the fact that they'd removed a lot of scar tissue from my bladder. So, so grateful.

When getting up, I made it to the toilet just fine, sat down just fine, even peed a bit, but realized I was going to pass out. I needed help to get back to bed. I tried to get up and walk an hour later and it was the same story - almost passed out. Since my blood pressure was still 80/55 this wasn't surprising. I asked them to let me have solid food, since being NPO, then clear liquids only for 36 hours was a lot. After I ate something around lunch time, I tried walking again and was able to toodle around my hospital room without issue. That, plus the fact that I'd passed gas and urinated, meant I had met discharge criteria. 

Normally, Dr. Sumners has you come to his office for an ultrasound post-discharge. Unfortunately the u/s room was in use, so after a few hours, a technician came and wheeled me to the ultrasound in antepartum. We checked that baby was still alive- yes, and that my cervix looked good. She said she was getting some swelling in the way, but it looked good. Overall the most pain I've felt the entire time was when I had to lay down on the ultrasound table, which didn't have any rails, and then get my legs into stirrups. The tech tried to help, but I wasn't clear what I needed and so it hurt. After that I confirmed meds quickly and my mom drove me back to our extended stay hotel. The hotel hadn't gotten the promised wheel chair, but I was able to walk in, up the elevator, and up to our room by myself. 

Saturday: I kept up with Norco and nausea medication every 6 hours. As mentioned, as long as I was still, I felt really good with minimal pain. Slept well, too, thanks to the meds. Got a shower and it was so much less traumatic than either my first TAC or my c-section. I was able to put my own socks on! I had to sit down on the toilet to do it, but I did! Even dried my hair a bit. Did laps up and down the hotel hallway every few hours. 

Sunday:  Got up, got a shower, had cereal for breakfast, then headed to the airport. My mom had arranged to have a wheel chair waiting for us at the rental car return, and I was grateful. I could have walked a decent amount, but not all the way to our gate. They got us there, with only a small snafu when my mom went in the pre-check line while I got the regular peon line despite still having her luggage. The screener pulled her bag, because it had cashews in it! Go figure. She had gotten us bulkhead seats, so I didn't have to shimmy into a tight window seat, which made the flight home easy. I have never been so appreciative of grab bars in airplane bathrooms!

There was a waiting wheelchair when we landed, and that took us to the curb where my husband was waiting. I took one last norco when we got home, and that was the last narcotic I needed. 

Monday - Thursday: I slept in our guest bed and kept up with tylenol and my nausea meds every 6 hours. Getting into and out of bed, and rolling over in bed were hard, but kept getting easier. By two weeks out, I have mostly normal use of my body, although my uterus still hurts. 

So, in TLDR terms; What went wrong: Already dilated, needed TAC and TVC, lots of scar tissue, nicked a vein, didn't get my anti-contraction meds, had super low blood pressure, was missing a wheel chair. 

What went right: TAC in place. TVC in place. Baby and mama both have heartbeats still. Much easier recovery than last time, despite being pregnant. 

I would absolutely recommend anyone with cervical issues/cervical insufficiency/incompetent cervix reach out to Dr. Sumners.

Gift Horses and Role Models

 ​​​​​At Christmas, the husband and I had the start of an interesting conversation that I feel the need to unpack and think through. It’s also one that I’d love to hear others’ perspectives on.

As background, if “love languages” exist, mine is NOT gifts. Husband’s is NOT either. When we were younger, I’d put a lot of thought and money into gifts for him, and in our earlier dating years, he often didn’t reciprocate. In marriage, I found myself constantly being the one to have to come up with gifts for all the parents, or watch him scramble and spend double or triple on X-mas eve to get something for his mom and brother. X-mas eve, when I usually needed his help getting the house ready for guests, and since he was out, I didn't get that help. I decided enough was enough and suggested to all family that we stop exchanging gifts. Everyone except for his mom (whose love language might be gifts) was really happy about this.

Now we have kids. I look forward to giving them presents because of the obvious enjoyment. This Christmas the husband suggested that we needed to start giving each other gifts again to ‘role model’ appropriate gift giving to the kids. I had an almost visceral reaction against it, and I needed to process why in writing.

First, I think it’s more important to role model that consumer spending is not necessary, beneficial, or necessarily good. Giving X-mas gifts just to give gifts is probably the biggest example of conspicuous consumption or consumer behavior I can think of us engaging in. It doesn’t add value, it doesn’t bring joy, there is really no benefit at all that I perceive in giving a gift just to give a gift. Or in receiving a gift just to receive one. I don’t want my kids to learn consumer behavior, I want them to learn to identify when spending brings them or their loved ones value, and focus on that spending. 

Second, I wonder what lesson I'd be teaching. The lesson of waiting to the last minute and spending far more than necessary for an item that could have been purchased elsewhere or earlier for less? The lesson of bailing out on helping with joint responsibilities because you put off your own too long? The most charitable interpretation I can give for this last minute approach is that DH is aligning his values (of the convenience and lowered stress of not having to think of anything until the last minute) with his spending. I don't think procrastination is usually a beneficial life skill, so I'm not enthusiastic about modeling that. I am equally unenthusiastic about modeling a situation where one partner, the female one, takes on all the mental and practical load of gift giving. 

I think I'm also bothered by this idea of modeling love as shown through gifts. I have quite a few friends whose families showed love via gifts and not much else. I don't want that. I'm not really worried about that, as I'm pretty confident these kids will know they're loved and that their parents love each other, but it's a trap that I've witnessed too often to feel great about repeating.

There's something else that bugs me about this, and I can't even put my finger on what. Maybe someone else has an idea. Having said that, the great news about being married to a die-hard procrastinator is that I can be confident that unless I decide to do what he's asked and start giving him gifts, he won't actually do it himself, so this is all a moot point! 

As I've let this draft sit, I think I've figured out what the 'something else' is. I think the last, perhaps biggest, thing that bugs me is that we'd be doing this because it's a societal norm. I *really* don't like doing things just because they're norms. I want my kids to learn to evaluate their options and decide based on their own values and preferences what they'll do or not do. I don't want them feeling as if they have to conform just to conform. Not to say that non-conformity is the path to happiness, but I think my life has been vastly easier ever since the point that I stopped giving a damn what other people think about my actions/appearance/beliefs, and focused on what was intrinsically important to me. I desperately hope I can give them the self confidence to find the beat of their own drum and take joy from following it.

An Update on 13

 I've been silent for a while. That's compliments of yet another HG pregnancy. I had forgotten just how bad HG is until around 7 weeks, when I had that moment of stark, animal terror as I was throwing up continuously and realized I needed to take a breath but my throat was still full of vomit and there was a real possibility I'd suffocate if I tried to breathe. I had forgotten that terror from last time(s). HG is really, truly horrendous.

Despite the HG, things have gone relatively well. We did a CVS at 10w4d, with the hope of getting full results back before my scheduled abdominal cerclage at 12w4d. It was difficult that early, especially because apparently I do have a lot of bowel that was in the way (further proof that I really am full of shit!), making it very hard to find a safe spot to draw the CVS sample. Both FISH and microarray were normal, so off to Indy I went for a TAC.

The TAC wound up being more complex than expected. At pre-op, I was already dilating in the lower cervical segment. As a result, the surgeon placed both a TAC and TVC. Double whammy. They also found my bladder was adhered to both my uterus and abdominal wall with scar tissue, which had to be cleared. During the clearing, the nicked a vein. Despite all that, and despite being pregnant and puking and having to fly home, my recovery has been light years easier than my last TAC. Go figure. Maybe I really did get gluten contact before that one as I've long suspected. I'll try to do a full write up later, in case it ever helps someone else.

I'm 14 weeks now. Sore but not in agony. Scared but not terrified. Finally also nauseous, but not constantly vomiting. So, progress. I continue to hold my breath and beg the universe to keep this little one safe until a planned delivery in late August. I am still concerned about an accreta diagnosis, especially after hearing of the amount of scar tissue found during the cerclage, but that will not come until my anatomy scan in another month, so I try not to borrow worry. 

Here was the day of our CVS, working on thumb sucking. 

Up to 13

Our first ultrasound was moved up to today. I started spotting brown again this morning, but I'm also throwing up. As far as prognostic indicators go, that seemed to cover all possible bases. 

I haven't believed in intuition since I totally miss-guessed Quinn's gender. At the same time, my last two twin pregnancies, intuition said it was twins. This time, same thing. Intuition said twins, even though it was an unmedicated pregnancy and they're so unlikely in that situation.

Intuition wasn't completely off. One gestational sac with a FHR of 120 and a CRL equivalent to 6w1d. One completely empty sac. A vanished twin.

I really, really, really didn't want twins again. I didn't want the extra sickness. I didn't want the hospitalizations and prematurity. I didn't want an in-pregnancy cerclage on a uterus pregnant with twins. I didn't want the financial implications of another set of twins.

I didn't want twins. Why, then, do I feel so devastated about this? 

The doctor said everything was perfect. I'm more than a bit concerned about the CRL, but I know that's subject to measurement error. I also know that a heart rate of 120 bodes well. I'll remain nervous until the next ultrasound in two weeks. Hell, I'll remain nervous until delivery. I'll also remain sad about our little Baby A, the one who didn't make it. These were babies 12 and 13, if I'm counting. That's just too many babies to lose and not be sad, no matter what you think of twins. For now, I'm hoping that come August I'll be able to tell myself '13 babies, 3 healthy, living children.'

Reflections and Cynicism

 The events in my home country have really shaken and saddened me. In my cynicism, I've often said that other humans never fail to disappoint me, but this goes far beyond that. 

The questions I keep turning over in my mind is: how could a reasonable person believe that the election results were fraudulent? How could a reasonable person attempt to subvert democracy while simultaneously claiming to do so because others have subverted democracy? I certainly understand how a reasonable person could be upset and angry with an election outcome that countered their preference. I understand how they might want to look for a way to achieve a result they liked better. I don't understand how masses of people could wholesale believe in such a massive hoax and turn to insurrection to 'resolve' the matter. There's the true fraud perpetrated this election: the fraud of the incumbent claiming a victory that was definitely not earned.

I wonder if the culture of avoiding things that upset us is somewhat responsible. I'm part of an IF group. That group maintains a separate place for members to discuss 'success.' However even in that separate place, some people were getting upset over the details of others' success. What options did they have? They could have avoided the success discussion all together. They could have acknowledged that other people get the things they want, and that's not a reason for anger. Instead the group decided that those reporting on success could no longer provide any details. Rather than saying "Hey, I want to have a success like that, and it kills me that I don't, but I'm happy for you." they said "Find someplace else to celebrate so I don't have to feel pain because of you."

Now we have part of our country who can't stand being faced with the pain of not having their candidates win. They can't stand it to an extent that they're rioting and attempting to violate the very democratic foundations of our country. Maybe the time has come for each of us to say "Hey, there are some things in life that I don't like. But rather than deny or avoid or get angry at those who have what I want, I'll focus on doing what I can to improve myself and my environment through reasonable and legally appropriate means." Alas, I'm too cynical to think that most people are willing to take on that level of emotional work.