Trying to hold ourselves together and find our new normal after loosing our precious twin babies at 20 weeks to HELLP Syndrome.
Baby Boy A and Baby Girl B, conceived after 20 months and IUI plus injectibles; born still on November 12, 2008.

A blog about pregnancy loss and infertility. And whatever comes next. A blog about hanging on together and holding each other up.

Tuesday, February 10, 2009

November 10, 2008

There are two dates every month that make me catch my breath: the 10th and the 12th. November 12th was the day our babies were born still. But November 10th was the day it all started falling apart. The 10th is the day that I clearly remember, that I replay in my head over and over. . . after that, it’s all a bit of a blur. Today marks three months from the 10th.

I know this post will be lengthy. Feel free to skip it (but come back tomorrow!) But the memories are so clear in my head, I have to write them out. . .

November 10 was a Monday. We had spent all weekend cleaning out the office-to-be-nursery. B put the cribs together. We stood back and looked at the room and the two cribs together and just said: “Wow! We’re having twins!”

Monday morning I went to court to argue a motion. I was wearing my favorite black pantssuit and red heels. And I won. That afternoon we went for our “big” ultrasound at our MFM’s office. They looked at and measured every perfect inch of our tiny babies. For over an hour B and I watched them and talked to them, and fell more in love with them.

Baby A looked perfect. But while looking at Baby B, the tech said she couldn’t get a good picture of her heart. She called in one of the MFM doctors, who agreed that she couldn’t get a good picture, but seemed to think there might be a problem with the left side of her heart. She scheduled us to come back in one week and retest; hopefully it would be easier to get information at that point. Baby B was smaller; maybe it was just too early to see well.

The doctor also asked for permission to rerun our amnio test for Baby B. She thought that Baby B’s heart problem (if there was one) could be a sign of the generic condition DiGeorge’s Syndrome – a condition illustrated by heart defects and small stature. While she still hoped that everything was fine with Baby B, we discussed that, if the next ultrasound did not show anything different, we would have to meet with a pediatric cardiologist. Baby B would likely need surgery immediately after delivery.

We went from the ultrasound to my OB’s office, where we continued to discuss the ultrasound. After about 30 minutes, my OB switched topics and said that I was spilling protein in my urine. "Do you have an infection?" she asked? "Anything going on?" "No, no" I said, "Nothing that I haven't already told you." She wanted to do bloodwork "stat." We said okay and didn’t think much of it. B and I didn’t know anything about protein, except that I was supposed to eat it! As we were leaving I did stop to ask her – was any of this related? “Humm, good question,” she said, almost thoughtfully. “I don’t think so.”

It was near 5:00 by the time we left my OB’s office. I remember calling my mom as I pulled out of the parking lot: “Mamma. Try to not freak out. And I don’t have any answers. But they think something’s wrong with my little girl.” And as I was saying those words, I saw the lab car pulling in the parking lot to pick up my blood samples.

I went home and changed. Black yoga pants and a yellow hoodie now. And we started making supper – steak fajaitas. Around 7:00, we were about to fill our plates when my OB called.

She said that my liver enzyme levels were up and my platelet count was down. She wanted me to go to the hospital that night so they could rerun the tests and monitor me for “a few days” – or at least long enough to do a 24 hour urine test. This was all gibberish to me – I’d never heard of enzymes or platelets before – but I knew she was looking out for me and my babies so I went along with it. She said to just go triage and they would decide where to put me. She had a c-section at the hospital that night, and she would check in with me once she was done.

I tried to eat our dinner and help B clean up the dishes. But I did understood enough to be flustered. So he cleaned up while I packed my bag. I packed my makeup, my straight iron, some comfy clothes, a book. . . B said he would go to work for me the next day and pick up some files. As far as I was concerned, I was checking in for a few days of rest and relaxation.

As I was packing my bags my mind necessarily went to the “worst case” scenario. The worst case I came up with would be bed rest – perhaps even hospital bed rest – for the remainder of my pregnancy. That was a looong time, and the thought was terrifying to me. I would go crazy. We’d go broke. If I had to stay in the hospital, how would I get to see enough of B? We spend all our time together. And what about the holidays? . . . . But, I bargained, I would absolutely do any of it, with a willing and happy spirit, if Baby B would just be okay. I knew one thing probably had nothing to do with the other, but bargaining’s never rational. Besides, I was focused on our babies. Particularly Baby B. Potential bedrest – well, that would be my burden to bear. Just so long as the babies were okay . . .

We got to the hospital around 8:00. At some point my OB must have mentioned preeclampsia or toxemia to me, because the nurse at the desk kept asking me why I was there (even though she was supposedly told to expect me), and I didn’t know anything to say other than “suspected toxemia or preeclampsia.” She didn’t like that answer; she wanted an actual diagnosis to put into the computer. I told her I didn’t have one.

We waited and waited, and were finally admitted and in our room sometime after 9:00. I joked with the nurse about how I was finally going to get to catch up on my leisure reading. I'd been resisting reading T.wilight, but this seemed as good a time as any to start.

We were in a Labor and Delivery room, although I didn’t think anything of that, and the first nurse came in around 9:30 or 10:00 to put in an IV port. She said it was just so they didn’t have to keep sticking me; they could use the IV port for everything. Imagine my surprise when the tech came to take my blood and she stuck me again! All I knew at this point was that they were going to rerun the tests that were conducted at my OB’s office to make sure the results were right.

Sometime after 11:00 I convinced B to go home. He had to work the next day, of course, and I preferred that he be at home with the kids (our four-legged ones) anyways. He made me promise to call him if anything happened, no matter what the time, kissed me and went on his way.

TO - there's no words
Not more than a few minutes later my OB came in. I had just been digging in my bag for my book and was settling down to read. She asked where B was. I said that I had sent him home: “Why, do you need him?” She said: “Yeah, I do. Can you ask him to come back?” So, I called B. He didn’t ask any questions, but just got in the car and was back in minutes.

My OB came back in. The nurse was with her, as was someone she introduced as Dr. C. with MFM. That should have told me something right then: it was midnight, and one of the best doctors in Na.shville was in my room in a mock turtleneck. Things were bad.

Dr. C. said that I had HELLP Syndrome, which was very serious, and the only way to “cure” it was to deliver the babies and placenta. I looked him calmly in the face, gave a half-laugh and said, “Well that’s not good!” I thought he meant we’d have to deliver early and they’d be premature.

He kept telling us how serious the disease was, and finally they said that they would leave us alone and give us some time. That confused me. When they left, I finally looked at B and it hit me – they want to take our babies now! Oh my gosh, that couldn’t be possible – it didn’t make any sense at all! The doctors came back in and I started arguing. Actually, those who know me would expect me to argue. But it was more like I was pleading, grasping at straws.

I was just 19w2d at this point. I asked them to please just keep me here in the hospital for a few weeks, I promised I’d be a good patient! Dr. C. explained that my liver and kidneys were shutting down. He tried to be gentle. He tried to be soft with his words. But we weren't getting it. I just kept shaking my head back and forth. I would do what it took to save these babies. I remember thinking, "Hey! You say my liver's not working - but isn't that what dialysis is for?!" There has got to be something we can do!

Finally Dr. C. said: “You’re dying. Your organs are shutting down. You will not live five weeks." In other words - "You will not live long enough to give your babies a chance.”

It didn’t make sense, I had just happened to have an appointment that day. There had been no signs or symptoms! B and I weren’t buying it. “What would have happened if we hadn’t happened to go to the OB today?” B asked. Dr. C. responded: “Within 48 hours she would have seized or hemorrhaged.” When it strikes early, it progresses quickly. He said: “There is nothing you can do.”

Moving on to practicalities, I then tried to get them to let me go to work the next day and get my files in order. “I’ll come back tomorrow!” I promised. They just shook their heads at me. Then I tried to convince them to do a c-section. The thought of having to deliver terrified me. Labor had always terrified me anways, and I could not experience that, go through that, knowing what would be the result. But a c section was dangerous considering my propensity to bleed and hemorrhage, and it could potentially scar my uterus.

They left us alone again. It was probably 1:00 in the morning by now. And I just – I don’t know what happened. I didn’t freak out, I don’t think. I remember crying, but I wasn’t hysterical. I was just so tired. I just wanted to curl up with B. They kept asking us if they could call anyone. “No, no.” we said. “Its just us.” Why would anyone want to come in town for this? But I did call my mom (who of course promptly collected my sister and began the 3 hour drive). All I said was: “Mamma, I’m sick. And they want to induce me. I've gotta go." After my call earlier that day, she must have been so confused.

Finally the doctors came back in. They must have been able to tell we’d finally been defeated. I climbed back in bed and got under the covers. And they began the magnesium drip to try to prevent a seizure. They put me in compression stockings to prevent a blood clot. And they gave me drugs to induce labor. And the wait began.

My blood pressure was spiking dangerously. There were issues with my pulse and oxygen levels. I wasn’t allowed any food or liquids. The magnesium made me weak and I wasn’t allowed out of bed. My red blood cell count was dropping and I was severely anemic. They were worried about a pulmonary embolism, and brought in an x-ray machine to look at my lungs. Whatever was going on with my kidneys and liver. And something about my heart and calcium levels? Who knows. . .

The doctors didn’t see any chance of an epidural because my platelets were so low. No one had told me this. They offered me demerol for the pain, but it made me nauseous. Finally, with lots of steroids, my platelets rose enough that the anesthesiologist agreed to an epidural.

And B just sat by my side and kept hitting that epi button. Just kept trying to make it all go away.


Anonymous said...

I am so sorry. I know to recount that day must be so difficult. I am so sorry that this has happened to you and B. Your story brings up alot of memories for me. We have alot in common unfortunately, I remember Dr. C trying to explain everything to me also.
Thank you for sharing your story, I know it must be hard to do.

Katie said...

I am so sorry. Thank you for sharing your story. I cried reading it and wish I could make the pain go away. Hugs

Mommy (You can call me OM) said...

Oh, Bluebird. I cannot even imagine wrapping my head around that, sitting in the hospital and having no vehicle to win the argument. You are in my prayers more than ever.

Busted said...

I'm so sorry sweetie. I'm sure it's so painful to write all this out, but I think it helped me a lot to do so...and now as painful as it is to read others' stories, I always have to do so. Thinking of you.

Devon said...

i'm so sorry...i'm so sorry this is your reality. and i know how awful those memories can you beg and plead for someone to do something, to fix this and there is nothing to be done...


thank you for sharing your story. thank you for letting us "be there" for you...

Mrs. Spit said...

I have been so thankful for a peri (mfm) that came in on a Sunday night, and held my hand and told me what had to happen. I've been so thankful for a midwife that drove in at 1 am, to sit with me, and help me. I've been so thankful for a husband that wept with me.

Reading this was like hell, because I could see where it was going. As I read the words, I could see the risks, I could tell what would happen next. And my heart just kept breaking.

I'm so sorry.

Rebuilding Myself said...

Oh hon, how brave of you to write this out ... I wasn't able to do for over a year.

I too remember being so confused in the hospital, wondering how on earth we were supposed to go from happily pregnant to going home along.

Thinking of you on this "memory day"

Jo said...

I bawled as I read this. Thank you for sharing, despite how hard it must be for you.

You are in my thoughts and my prayers.


noswimmers said...

Thank you so much for sharing. I know how hard it must be to write, but it has to feel good to get it all out there.

The confusion is perhaps the worst. I am so sorry you have to go through this. Let me know if there's anything I can do.


Soralis said...

I am so sad that you had to go through this. My thoughts are with you and my tears are for your loss. Hugs

Tash said...

Thank you for writing this all down and allowing us in. It's humbling. It's incredibly frustrating and I want to scream and fly back in time and step in front of the bus, but it's humbling.

I'm so very sorry.

Lacri said...

I keep imagining how terrible the shock must have been. I'm sorry that this happened to you.

Martha said...

Here from Mrs.Spit's blog, I'm so sorry for the loss of your children.

Peeveme said...

I too am here from Mrs. Spit's blog. I read in stages...sometimes just a sentence or two before I had to stop becasue I was in tears (and at at work).

Sorry for your loss seems so...not enough. but I am so sorry.

Thank you for sharing your experience.

Aidan's mom said...

Here from Mrs. Spit's blog as well. I'm so sorry for the loss of your precious children. I, too, had HELLP syndrome. It was traced back to homozygous MTHFR. My son was born at 27w6d.

Thanks for sharing your experience. HELLP syndrome is frightening when it strikes that early. I'm so sorry for all you have been through.

LDRN said...

I just wanted to finally comment on your blog....

I was there. THAT night & the several that followed.

I work there. In THAT L&D unit. I worked that night you came in...

L was your first nurse. I remember googling DiGeorge's syndrome for her (with so many rare diseases & diagnoses, we sometimes don't see them but once or twice in a blue moon). Dr A shared your story with us. We watched your BP & when your labs came back, the whole night shift cried, knowing what Dr C would say when he came in.

I remember when Dr C showed-up on the floor & him talking with Dr A.

I remember when you got the news. L had to step out of the room to compose herself.

Just knowing how your life hung in the balance & you were just at home, unaware of the danger lurking.

It is all so scary to see something like that happen & not be able to treat it without losing precious little ones. We see more of this stuff than we'd like to around our hospital.

Thank you for sharing your account of the events. We all still think about you guys from time to time. You, by far, are one of our scariest & saddest cases we've had....
There is so much more I wish I could do or say, but I cannot do anything more than offer my condolences & prayers...

Jeff and Kerry said...

LDRN, thank you so much for writing this...I'm sure it will bring her peace and comfort knowing how much everyone cared about her and her little ones.

K said...

i never before read exactly what happened thogh I knew what happened. I never before read the details like this- I'm sitting here bawling. You poor poor dear. I don't mean that in a way to pity you, but. Shit. I can't imagine. I simply can't. I am so sorry you had to go through this. I am so sorry.