Monday, December 20, 2021

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. 

Wednesday, December 15, 2021

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."

Tuesday, December 14, 2021

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! 



Monday, December 13, 2021

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.