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!