Here it comes

My sweet sister. I know how she feels. She just wants things to be natural, go smoothly. She wants to go into labor on her own. When the baby is ready to come. But she's disempowered and endangered by this menace called preeclampsia, and it's just not going to be that way.

I think she was starting to believe that she might not be sick. While on bedrest, her blood pressure has been decent. Still high for her, but not hypertensive. She's had the symptoms that stem from high blood pressure - constant headaches, dizziness, tingly hands - but none of the other ones like epigastric pain (pressure or pain in your upper right quadrant or upper middle abdomen). Poor girl. She was really starting to believe that the whole preeclampsia scare was a fluke. That she willed it away and that things will go smoothly. I so wish that was possible. I've had to sit back and keep my mouth shut, while dealing with absolute fear of losing my sister. And my niece.

I've been waiting with a heavy heart for the moment when things turned. She had a prenatal appointment yesterday, one day after her due date. She had protein in her urine again. Her blood pressure was borderline hypertensive (defined as 140/90) after lying down for a non-stress test for 45 minutes. She's barely dilated and her OB wanted to induce. Now, I can understand if she didn't grasp the weight of the situation why she might refuse to be induced. But this girl knows all about preeclampsia. She knows all about HELLP syndrome, and how close my son and I came to the brink. But she's a woman like any other. Excited to be a mom, living out a dream she's had since she was a little girl, still clinging to her birth hopes, or her denial that something is going wrong in her body, or something. I don't know. She can't explain it.

I try so hard not to therapize her or tell her what to do, two things she's totally sick of her big sister always doing. But I am really scared for her and the baby. And I'm still not happy with her OB, who I think should have absolutely induced her by now, no question. I've tried to talk her into castor oil. Her OB inserted a balloon catheter to try to get her to dilate more, but it doesn't seem to have done much. Her OB says she will induce Friday no matter what, if not sooner.

I am holding my breath.

Still Waiting

I haven't written in a while, with the holiday madness sort of taking over. My sister was never far from my thoughts, just haven't had time to blog.

She is still pregnant, due in 3 days. She has finally stopped working and is on full bedrest. Her numbers have improved, which is puzzling to me, but helps me take a deep breath. Her blood pressure has been good, rarely surpassing 120/80, but she continues to have headaches every day. I'm trying my best not to focus on asking her about her physical symptoms, hoping she can emotionally enjoy the end of her pregnancy. She is just starting to efface and dilate - she is at 2cm. That doesn't mean anything, really, and I just keep hoping that she goes into labor asap to avert preeclampsia attacking.

I know it's on her mind. She has asked me details about what day in my pregnancy various symptoms appeared. The thing is, I never was hypertensive until 2 days before my due date. That same day, my liver enzymes had already sky-rocketed, my platelets had dropped sharply and I was experiencing full-blown HELLP Syndrome. That's why I've been adamant that she press her OB to test her blood every week. Her OB has approached the situation with an attitude of "Well, we can do it, just to appease your super annoying, overly involved and paranoid sister." But the way I see it, if my blood would have been tested at week 39, they may have been able to catch me in an earlier stage of HELLP, possibly preventing the need for general anesthesia when I had my c-section, which continues to be one of the greatest tragedies of the birth of my son - a motherless beginning of life, not being held or nursed for 8 hours. I am happy to be the squeaky wheel if I can help my niece be with her mommy the moment she's born.

My sister's next OB appointment is on Tuesday, the day after her due date. Please send induction vibes!!! (This coming from someone who's generally anti-induction!)

The Anniversary

Today is the anniversary. At this exact time 4 years ago, I was lying in an operating room, unconscious, while a doctor feverishly stitched me back together trying to save what was left of my blood volume. My sweet husband, dressed in scrubs, was running down the hospital hallway with our brand new infant and a nurse from the NICU. It would be hours before I could meet, see, hold, nurse my little boy.

Krista, I don't want this to happen to you.

Lately, I spend my time hoping that HELLP doesn't come, that your doctor will induce you tomorrow. I daydream about the "perfect induction," one in which you don't need magnesium sulfate and the pitocin works its magic effortlessly and you are able to push your baby out, and hold her and nurse her right away.

Every day I call you and ask you how you're feeling, what your blood pressure is, what symptoms you're having. You're annoyed, yet grateful. You minimize your symptoms, holding onto the birth dream you've always had. I get it.

Sometimes I can relax and have faith in your doctor. Other times, I am so worried that she doesn't understand how to treat preeclampsia for the best outcome. Why isn't she checking your protein every week? Why hasn't she asked you to fully stop working? Why does she believe you when you say that the pressure that you feel under your right rib cage is just the baby's feet? Why does she act like she can predict the speed of preeclampsia's progression?

You have another appointment tomorrow, and I will go on hoping. Hoping that she will ask you to meet her in labor and delivery. You'll be 37 weeks on Monday.

Four years ago, preeclampsia changed my life forever. I awoke with my hands on my bandaged abdomen. I remember feeling the emptiness of my no-longer-pregnant belly, and the heaviness of a longing and a terror so fierce and primal that only a mother would know it. I remember screaming to the nurse in the room, "Where is my baby?!" but my voice must have come out like a tiny mumbling whisper and she didn't even look over at me. I remember looking up at a clock on the wall that seemed to be swaying back and forth, confusedly trying to do the math to figure out how long I had been under. I remember Brian walking past the room much later, and seeing me through the window, then bringing our little baby in and laying him on my left shoulder so that we could look into each other's eyes, like strangers, for the first time.

In the rest of my life, I exude really positive energy, and practically manifest good things all the time. I usually sort of expect things to work out, even if they're hard or bad. But this situation with my sister has my limbic system in full response and I find myself bracing for the worst. I find myself not trusting the test results that come out OK, or the blood pressure readings that are low. I guess it's because I had those same results and blood pressure readings and still ended up deathly ill. I am trying really hard to expect a better outcome than I had, to really envision a really good ending to this story.

Epigastric Pain & My First Tears

I am on high alert. I called my sister for my daily check-in and she casually says, "I have this weird pain when I lay down on my right side, but it's only on my right side, and it feels like bone pain in my ribs, so it's probably just my rib problem or the baby's legs."

Trying to stay somewhat calm and logical, I say "You know that is exACTly how people describe epigastric pain" which is one of the hallmark signs of the progression from early preeclampsia into full-blown-get-the-baby-out preeclampsia. Of course, she minimizes this symptom, which is what so, so many women with early preeclampsia do. I did it too. I get it. I even did it while driving in the car with her, in so much pain I asked her to press down on my belly to push the "baby's legs" down away from my ribs. I keep telling her if there was one thing I could change about my experience, it would be having someone knowledgeable walk me through each stage so that the whole thing would have been less traumatic. I would have wanted a team of providers who took every symptom seriously and got me to the hospital at the right time, not when it was nearly too late.

I tell her that I want her to call Dr. S, and that I'm giving her an hour. I have not done anything that firm yet, and have tried to practice my life's constant work of letting go of the things I can't control. 

I am not going to let my sister die. 

I just had my first cry since this roller coaster started. I have been highly concerned for my sister and my niece. But now I am terrified. She's 36 weeks today. This has been going on for almost 2 weeks. And with her symptoms progressing, and her minimizing them, I am anxious and scared that something really bad is going to happen. 

She called Dr. S's office, but she wasn't there, which prompted my sister to decide to wait until her scheduled appointment tomorrow. Ahhh!!! I can't take it. I really hope that she can accept what is happening to her. I know it's surreal and horrible to have to swallow the news that your first pregnancy is really screwed up, and that you might have a preemie, and that you're not going to get the birth you wanted.

This is not about my relationship with my sister, or our childhood dynamics in which I was the typical older sister, always bossing her around, not letting her make her own choices. I can hear the exasperation in her voice when she "gives in" to one of my urgent requests to call her doctor. I know this is hitting a really tender nerve with her - to blindly take my advice feels like I'm controlling her again. We've been going back and forth for an hour now. She is finally going to call back Dr. S's office and actually tell someone there what's going on to see what they want her to do. Of course, I wish she was going straight to the hospital, but it's better than her other options of calling her husband's aunt (and OB) or walking up the street to talk to their neighbor (an OB). 

My fear for my sister is easily spinning into anger at our society that this critical women's issue continues to exist. How is it possible that a disease that was first documented thousands of years ago, that has the potential to affect all women and all babies continues to have no known cause and no cure. I am livid that we live in a world where it's okay to let pregnant women carry on without clear explanations of the signs, symptoms and protocol for preeclampsia, and informed healthcare providers who will do everything they can to keep women from dying.  

She finally called the OB on-call at her practice and he had her go to the hospital immediately.

Phew.

Then he sent her home! No 24 hour urine collection! No blood draw for a HELLP panel!

I am freaking out. Not happy at all with the practice. Trying not to go insane trying to micro-manage her medical care from a distance.

The Unspeakable

I realize that I am a traumatized, over-informed, very anxious person when I find out that someone I love is pregnant and starting to experience the early signs of preeclampsia.

I can't help it. I have looked into the eyes of women who have lost their babies, aging parents who have lost their daughters and are raising their young grandchildren, men who are partnerless and childless, doctors who have lost patients and sweat they'll never let another woman die. Women and babies are still dying from preeclampsia all over the world, and in this country. I am not crazy to worry about the unspeakable.

My sister reluctantly told me today that her blood pressure has continued to be elevated since her OB appointment two days ago. It's not a fluke. She is continuing to have headaches and dizziness, as well as just feeling sort of crappy, otherwise known as "general malaise." I know she is tired of being the little sister getting bossed around by her older sister, but I can't help but plead with her to call her OB or go to the emergency room for testing.

I am angry that the nurse practitioner she saw on Wednesday didn't give her a jug for a 24 hour urine collection, or do a blood draw. She is at a higher risk for preeclampsia than the typical pregnant woman, thanks to me. :( I just feel like they're not taking this seriously enough, and I have heard way too many tragic stories not to step in.

I sent my sister and brother-in-law this email (and remember I am not a medical professional, so this advice is not official medical advice):

I am sending this email because most healthcare providers are not aware of the cutting edge research and recommendations regarding the treatment of pre-e and women have to self-advocate for good care. There is NO diagnostic test for preeclapmsia. It is a vague set of symptoms that often vary from woman-to-woman with some common threads, so often "diagnosis" is murky and confusing and the symptoms are hard for OBs to put their fingers on. The common thread of symptoms often includes:

• hypertension (140/90)
• higher than usual blood pressure
• headaches
• dizziness
• seeing small white spots
• swelling or retaining water, usually more noticeable in your feet and face
• tingling of your extremities
• general malaise, or just feeling sorta crappy but not sick
• nausea and/or vomiting after your first trimester
• ongoing diarrhea
• upper abdominal pain, sometimes in the right quadrant, sometimes in the middle
• back pain
• any "lap band pain" that is not super low in your belly
• shoulder cramps and/or pain, especially in the right side - kind of like a running cramp
• proteinuria (kidneys spilling protein - important to note that the standard urine tests at the OB's office will only pick up MAJOR protein dumping, so you need both a 24 hour urine collection asap and a uric acid test - see below)
• eyes start to look funny
• weight gain that is unusual, ie more than a pound a week, at any point during pregnancy

First, my immediate recommendations for TODAY, other than relaxing on your left side and drinking tons of water and dandelion root tea:

• If you take your bp and it is above 140 systolic OR 90 diastolic, please page your OB immediately and let her know that you've be "trending hypertensive since Wednesday and having other preeclamptic symptoms, including headaches, dizziness and swelling." Ask her for admittance to thehospital for 24 hour observation of urine/protein and blood draws for liver function, platelet count and anemia.
• If you're staying just under 140/90, stay on your left side and take your bp 1x every 4 hours. If it continues to trend into the hypertensive range with EITHER top or bottom number, follow the instructions in the first bullet. 
• If bp stays just under hypertensive range, note a change in any other symptoms and if you have any additional symptoms, page your OB and follow bullet point #1.
• If you are still home tomorrow, please call your OB's office and ask for a 24 hour protein collection pitcher. If you have a Qwest lab (or other lab) open on a Sunday, you can go and get an orange collection tub from them. If you know which lab your OB uses, go there and get one and start your collection with your first pee AFTER your initial morning pee. You need to get this urine collected Monday, turned in to the lab by Tuesday late morning, and results by Wednesday afternoon. But keep in mind that any other pre-e symptoms, such as hypertensive BP trumps the urine collection and you go back to bullet point #1.
• Also you should probably go ahead with a blood draw tomorrow at your OB's office for liver function, platelet count and anemia. 
• If your OB does not agree to test your 24 urine count or draw your blood TOMORROW, please go to the ER or call another practice. This is not time to worry about the emotional, relational part of your OB experience. This is a matter of life and death. If I could do it over again, I'd have had Brian take me to the ER the night I was having liver spasms and my midwife just told me to rest and come in to her office in the morning. 
• Make sure your hospital bag is packed, and have the very basics for the baby ready at home (4 swaddling blankets, 5 of your smallest onesies, baby hats, nursing pillow and a place to lay the baby down) They'll give you preemie diapers at the hospital so you don't need those right away, and the cloth ones we gave you are preemie/NB sized too.
• Call us if anything happens at any time of day/night and we'll help you with next steps related to thehospital, such as the magnesium sulfate issue, c-section stuff, etc. 
• Dave, you need to watch a c-section video on babycenter just in case she needs an emergency c-section otherwise they will not let you in the OR. She will need you. There is a small chance they'll give her the mag and induce her with pitocin and she'll be able to birth vaginally, but it's important to start to understand the c-section issues preemptively.

For other wonderful, comprehensive info, please visit http://www.preeclampsia.org/

I also recommend reading birth stories on this site.

The Story Begins

Today my sister called and told me her blood pressure was 140/75.


We both silently weighed the gravity of that information. 


I paced nervously around the house, probably twirling my hair, thoughts spinning very quickly into the worst case scenario. Thinking back to it, I imagine my sister was lying down on the couch when she told me, a hand reassuringly cradling her pregnant belly, the worry lines in her forehead more pronounced than in her usual serious expression. 


I could imagine the thoughts and feelings flooding her .. Is the baby ok? Is this really happening? Did the nurse make a mistake when she took my blood pressure?


And I could imagine the question that she hadn't yet allowed.. Is there any way that what happened to my sister is going to happen to me too?

I could imagine this scene and its swirling thoughts and feelings because I'd had many of them exactly 4 years ago when I was pregnant for the first time and slowly beginning the descent into severe preeclampsia and HELLP syndrome. 

There are things you are supposed to share with your sister. Jeans, first cars, favorite bands, stories we'll never tell our parents. But not this. Not preeclampsia.