The update, or how I’ve spent months reeling

So remember how there was initially a questionable fourth sac? We found out in the absolute worst way that it had indeed been there.

Friday, March 13. The first day things started shutting down here for the pandemic. And the day of the anatomy scan for the triplets. I had been saying for weeks, ever since I realized that I had inadvertently scheduled it for a Friday the 13th, that I should reschedule because it was bound to be bad luck. I opted not to because I had been having health issues (low blood sugar, hyperemesis again, and my blood pressure was rising and I suddenly had proteinuria) and I wanted the thorough check on the babies.

Baby B was a girl. She had intrauterine growth restriction bordering on severe.

Baby A was a boy. He had a club foot, severe intrauterine growth restriction, and several markers for trisomies 13/18/21.

Baby C was a girl. She was the only one measuring on track for dates. She had a single artery umbilical cord that bifurcated — one end to her, one end to nothingness. She had severe hydrocephalus in every ventricle to the point that her head was basically empty. Her cerebellum was hypoplastic and full of cystic matter. She had either never developed midbrain structures or they had been obliterated. She had spots in her remaining brain tissue that looked to be remnants of hemorrhagic strokes that were further destroying her brain. And the reason she was so active was seizure activity in utero.

After genetic testing came back we found out baby A was genetically healthy and so was baby C. (Baby B’s results came back abnormal — mosaic diploid/tetraploid with extra copies of chromosome 18 — but we were told that was likely due to culture artifact error because she was not showing any clinical signs of the syndromes.) Since genetics came back normal for baby C, the likely cause we were given for her horrific brain defects was the disappearing baby D. They would have been identical twins, seeing as they were sharing that bifurcated umbilical cord, and when baby D reabsorbed it damaged baby C’s brain.

We wanted to carry all the babies, choose perinatal hospice for baby C, and donate her organs. But we were advised that between my health concerns and the increasingly severe IUGR for babies A and B if we tried to do that there was a very good chance none of the babies would survive, so at 22 weeks, on April 1 (the worst April Fools Day ever), I had a selective termination for baby C. I had to travel about 70 miles to a facility that had experience doing it (thank goodness I live in NY and not only had the option but had it in state). I couldn’t drive myself because sedation. And because of lockdown restrictions I had to go in alone and we couldn’t take John to anyone to have him watched while I did it, so he and my husband sat in the parking lot the entire time.

I spent the next 12 weeks carrying them all until I went into labor at 34 weeks on June 25. Baby A, Elliott Kenneth, spent 35 days in NICU. Baby B, Abigail Kay, was indeed healthy and only spent 13 days in NICU. Both of them were 3 lb 13 oz and 16 in long. Baby C, Hannelore Evelyn, was intact but quite flattened. She was 6.8 oz and 10.25 in long. She, in her urn, was the first to make it home.

Abigail and Elliott

Elliott, Abigail, and John

Hannelore

All the time I was struggling with family building I never imagined quitting. My thought on the matter was “damn my mental and physical health, I’m running full force at this wall until something stops me!” This? This stopped me. Knowing that in seven pregnancies with eleven babies, I’ve gotten only three. Knowing how damn lucky I am to have gotten those three while knowing that I can no longer count all my children on both my hands. Knowing that I had to choose it and watch while Hannelore died. And most especially knowing that if I had lived in a different state, or under a different set of laws that are constantly in flux, I wouldn’t have had that choice at all and I would very likely have lost all of them instead of just Hannelore and baby D. I can’t face the idea of ever being in that situation again. I got a tubal ligation during my C-section, and I’m in the process of being approved for a hysterectomy due to severe period pain, heavy blood loss, and anemia from being unable to absorb iron well anymore after having had my bariatric surgery. I’m done. The wall straight up shattered my skull this time.

Still alive. Still alive. Still alive.

Thanks to Jonathan Coulton for the above lyrics going through my head this morning.

 

I cannot believe this. Heart rates of 175, 180, and 185. Measuring 8.4, 8.4, and 9.0 today at 9.2. I’m beginning to think we might actually be having triplets.

Absolutely reeling

Since losing the twins in January I’ve spent months wondering if I should just give up. Especially when I had to have another D&C in August for scar tissue left from the first one.

 

I ordered a necklace for my mother in law for Christmas and was accidentally sent the wrong one. It’s a sunflower that opens up to a charm with a hidden message. The message I ordered was “In a world full of roses, be a sunflower”. The message I received was “Keep fucking going”. I took it as a sign. I obtained some Clomid since my only successful pregnancy so far was the Clomid one. I used it. Near the end of the Clomid cycle a woman in my neighborhood buy nothing group offered up her leftover injectibles and progesterone. I happily accepted them but didn’t end up needing them.

 

Pregnancy number seven is in the books. I was at the hospital today for monitoring after a subchorionic hemorrhage. We have three beautiful heartbeats. (And possibly a fourth sac near the SCH. I’m only 6 weeks so it’s hard to see for sure since it’s so small and so close to the bleed.) Fingers crossed, knock on wood, whatever it takes… I think maybe this one might work out. Keep fucking going, indeed.

I don’t even know what to say.

Loss number five? Turned out to be babies five and six. I didn’t have the ability to mention it until now.

It was a heterotopic pregnancy. The one in the uterus failed but refused to pass, which was how they discovered the ectopic. They never actually found where the ectopic was. I ended up having methotrexate to kill it and surgery to remove the uterine one after two rounds of medications failed and I was going septic.

For the first time, I’m not so sure if I want to keep going. I was 22 when my first loss happened. I’m 33 now. In that time I’ve lost six babies, both my grandparents, my cousin’s young son (who made me really want to be a mom in the first place), my brother in law, and my first spouse.

There is something wrong with me. Nothing they can diagnose other than the PCOS (which resolved with bariatric surgery) and the hypothyroidism (which is successfully medicated). I’ve always asked myself if I could handle just one more loss. The answer was always yes, so I kept trying. Now I’m not so sure if the answer is really yes or if I’m just doing what I’ve always done.

And I’m without any effective means of contraception. Yay.

That was also quick.

Betas too low and rising too slowly turned into loss number five.

 

Time to double down.

Because what is pregnancy without anxiety?

I ended up in the ER yesterday morning due to some disturbingly one-sided pelvic pain combined with spotting. It turns out I have a septated cyst on my left ovary that’s nearly the size of the ovary itself. Pain explained. I should have been 6 weeks along by LMP. My beta was only 1010. Ultrasound showed a gestational sac measuring 5w1d.

 

I’m trying to convince myself things could still be okay. After all, LMP dates are based on a 28 day cycle and mine is 30, so that would put me two days behind. And while implantation can happen at 6-12 dpo, the average is 9 so if it implanted at 12 that would be another three days behind.  If I barely had enough hCG to trigger that 25 miu test on December 30, the average 48 hour rise didn’t double but is within acceptable limits.

 

Haha. Optimism is funny. Repeat beta is Monday because the labs are closed Sunday. I have orders from the ER to get into the OB Friday for a repeat ultrasound, but if they can’t get me in I have a backup plan. Things are going to be okay… maybe.

Holy shit, that was quick.

I felt ovulation twice this cycle. Lefty went on CD 13 and Frank went on CD 15.

I had a faint positive on Christmas (CD 25). It was only confirmation of what I already knew from physical symptoms. I mean, I’m six pregnancies in now. A second test was negative the next day. So was a third test the day after that. My symptoms started disappearing. I had vicious cramps on the drive home from the in-laws that day. I thought it was over.

Except the symptoms came back and I was a few hours late. I had leftover tests. I figured seeing a stark white stick would be all it took to bring on my period. Apparently the second one took. I’m stunned.

Everything changes

Tatoe has been doing so well since getting the supports he needs in school. He’s 7 now, in second grade, and though he’s behind grade level because of the struggles of the past few years, he’s catching up rapidly. His speech is getting more intelligible. He’s learning to read. He’s not fully potty trained yet, but he can change himself as needed. He’s hilarious and though he’s a stubborn little cuss at times, I adore him.

 

It’s also so incredibly different, so wonderfully pleasant, to have a partner who enjoys parenthood and who puts in the work. A bit over a year ago I had to stop working. I had developed treatment-resistant pseudotumor cerebri. I was rapidly losing my vision and having absence seizures, and I was officially declared disabled. He stepped up and did everything I couldn’t. We married in July and will be pursuing a stepparent adoption for Tatoe.

 

I’m finally feeling better. I was given a choice between neurosurgery that would implant a shunt to drain the excess cerebrospinal fluid or bariatric surgery that had a good chance of helping the pseudotumor and several other health problems I had. Easy choice. I had a duodenal switch in March. I’ve lost 185 pounds (118 since the surgery, the rest before).

 

I was hoping the weight loss would eventually help resolve my PCOS so we could consider having another baby. Instead, it resolved immediately after surgery. There was a metabolic effect on insulin resistance that surgery corrected. For the first time in my life I have to care about contraception, because it’s important to be out of the rapid weight loss stage and have good nutritional reserves before TTC. It’s weird. Really weird. And my uterus is having NONE OF THIS BIRTH CONTROL BULLSHIT: “Don’t you remember the struggle? I am doing you a favor!” it said as it violently expelled multiple IUDs.

 

I can’t use IUDs now because of the diva behavior. I’m allergic to latex and spermicide. Non latex options don’t come in the right size. I can’t use anything with estrogen because of migraines with aura. I can’t use anything taken orally because I malabsorb due to the surgery. I can’t use the implant because it’s associated with pseudotumor cerebri. The doctor warned me against the shot because I’ve been sensitive to hormones in the past and it takes a long time to wear off. What I’m getting at is that we’re out of good options. Fortunately, I’m finally losing weight slowly now and have good vitamin levels.

 

I know enough to keep it quiet in case it’s a struggle again, but I want to shout it from the rooftops and that’s why I’m here. We’re trying! Squee!

Welcome to… wait, where are we?

There’s an essay on having a child with special needs called “Welcome to Holland” that probably everybody has seen at some time. What nobody ever seems to reference, however, is having a child with hidden disabilities.

I planned a trip to Italy. Everyone told me we’d landed in Italy. And at first I believed them. I happily gallivanted through what I thought was the Italian countryside.

Until one day I noticed some discrepancies and started asking questions.

“Hey, these fields of tulips, are they normal for Italy?”

“Those are olive trees, not tulips.”

“Okay, but what about the wooden clogs everyone is wearing?”

“Dummy. Those are Ferragamo pumps, not wooden clogs.”

“Um, okay, if you insist. But surely you can see the kid from the Dutch Boy paint cans holding his finger in the dike over there, right?”

“That is a normal Italian boy. His finger is not in the wall. He is merely pointing at the wall because he wants a ride on the gondola behind it. STOP ASKING QUESTIONS!”

I kept asking questions. Finally we found a group of travel agents willing to look at the evidence.

Those are tulips. And clogs. And Peter at the dike. This is Holland.

And Tatoe has autism.

Hello, neglected space of mine

(checks last posting date — November 2015)

Ahem. Lots of changes ’round these parts since then. Several of which happened in the couple of months before then, actually. Quick chronology:

1. Prawn’s mental health went to hell.
2. Our brother-in-law committed suicide.
3. Prawn fell for another woman and I made them break up.
4. My grandpa died.
5. Prawn and I renewed our vows.
6. Our rabbit died.
7. My mental health went to hell.
8. Prawn got sent to the mental hospital.
9. I got sent to the mental hospital — only to be cheated on again while I was committed.
10. Prawn demanded to open our relationship and that I be part of the affair she had started while I was in the hospital. Only to then suddenly decide that this person wasn’t okay after all and demand we break up with them.
11. Hey, open relationship, right? I found a boyfriend for a long distance relationship. Prawn tried to join the relationship out of jealousy. It went about as well as expected. BF was really quite nice to her, but she tried pulling the same shit to him that she did to me and uh, no. Not okay.
12. Seeing how Prawn treated her other partners made me realize that she was abusive to me too. Which should be obvious, but that shit sneaks up on you.
13. I told Prawn our marriage was over.
14. I had Prawn forcibly removed from the house at gunpoint. (Protip: Maaaaybe don’t threaten to charge the police with knives when a safety check is called in because you threatened suicide if your partner left.)
15. CPS came to the house when the police were called and found Prawn had a stash of drugs I didn’t know about. Tatoe got interviewed and told the lady “Mommy [Prawn] makes me stay in my bed with no food and no water all day.” What the fuck?! I got told that if I wanted to keep Tatoe, I’d need to file a restraining order. Done.
16. A whole series of shitstorms. Including the loss of my job, and Prawn saying she wouldn’t contest my having full custody in the divorce if and only if I dropped the restraining order. I did so because of the closing of the CPS file (which came with the strong suggestion that she not have unsupervised contact with Tatoe until her mental health was stable), but she quickly rescinded the offer she had made. And when they say that leaving is the most dangerous time for a person in an abusive relationship? Can now 100% confirm. I never, ever want to talk about some of the things that happened.
17. We declared bankruptcy. The next step was to file for divorce but…
18. Prawn committed suicide, the aftermath of which is a whole post in itself except that I’m trying to keep a low profile online about that because of threats made against me by her friends.
19. We inherited Prawn’s cat after her death. Only to have the cat develop severe health problems and have to be euthanized.

But things improve. The boyfriend has been amazing through all of this. He and Tatoe adore each other. We’re planning a move out to where he lives this summer. And today?

Let’s try this again. Hopefully with a better outcome this time. 🙂