Preeclampsia

Secondary Infertility is a grief that knows no bounds.

This is her story:

We started trying to get pregnant after a pregnancy scare.

My now-husband and I were newly engaged, my period was late, we were both convinced I was pregnant. Finally, I took a pregnancy test and discovered I wasn't pregnant. We were both disappointed, and decided to start actively trying to get pregnant. Our wedding was a year away, so we figured if we got pregnant within the next two months, the dates would work out.

It didn't happen

Three months before our wedding, we started trying to get pregnant again. A year later (ironically the month we'd stopped trying as I'd just started a new job), I finally got a positive pregnancy test.

I spent the first half of my pregnancy nauseous and vomiting. By the time I'd started to feel better, I was diagnosed with pre-eclampsia and spent the remainder of my pregnancy on bedrest. It didn't help that my OB was an idiot, however, my daughter was born at 38 weeks via c-section - we are both very lucky to be alive.

When she was four months old, I started to develop extremely familiar symptoms. I took a dozen pregnancy tests, all of which said I was pregnant. I hadn't even had my period yet - I was breastfeeding. My husband and I were absolutely shocked as it'd taken so long to get pregnant with our first.

My second pregnancy was much easier until week 30 when I, once again, developed pre-eclampsia Thankfully, I had an amazing doctor and while we were preparing for a very premature baby, I was placed on hospital bedrest and given medications to manage the preeclampsia. I was then able to go home (no bedrest). 

My second daughter was born at 37 weeks via repeat C-section. 

That was five years ago next month. 

We've been trying to get pregnant for the last four years.  I'd taken two rounds of the birth control shot after my second daughter was born. When I stopped the shot, my always normal and dependable cycle went crazy. 

Sometimes it would be 28 days long, others 32 days. Once, I had a 40-day cycle. Every once in awhile, I'd miss a period altogether. My periods themselves have been fairly normal but that's the only normal thing about my cycle now.

Two months ago, after more negative pregnancy tests than I care to count - that's what happens when you never know when to expect your period - my husband and I decided to go see my gynecologist.

She sent him for a sperm analysis while I underwent blood tests and an ultrasound. 

We'll be seeing her soon to find out the result of the tests, and likely begin to take Clomid to help induce ovulation. We can try two or three cycles with Clomid before she sends us into the city to a fertility specialist. 

Today is day 34 of my cycle; two days past my longest average cycle. As usual, I was certain I was pregnant. 

I tested today.

It was negative.

Again. 

I don't know how much more heartbreak I can take.

We badly want another baby, it just doesn't seem like it's going to happen. I know that with treatment, we'll have a better shot at getting pregnant, that next month I could become pregnant, but today, I'm scared I won't have another baby. 

My husband's work benefits will cover up to $15,000 in fertility drugs but no procedures, so if we want to get really aggressive, we foot the bill. We're not willing to spend thousands of dollars to maybe get pregnant. We have two kids to support, our futures to plan, so that isn't going to happen. 

Nobody knows we've been trying to conceive.

We keep hearing "When are you going to have another?" or "Are you going to try for a boy?" It's knife to the heart every. single. time.  We usually shrug it off and say "We'll see." 

My mom has made it clear that due to my pregnancy complications, she doesn't think we should have another baby (even though it was only poor medical management of my first pregnancy that put us in danger). Knowing she's against this adds more stress - we don't want to hear her say that we shouldn't be trying, or that it's a sign I shouldn't get pregnant. 

I know we already have two kids and I am so thankful, so blessed to have them, but that doesn't mean it doesn't hurt that we can't seem to add another child into our family. I want a big family; I want my kids to have lots of siblings to lean on, to grow up with, to support each other when my husband and I are gone. 

This all feels so unfair.

    Prenatal and postnatal complications are not as rare as we'd like to believe, even in the United States. This month, Band Back Together is bringing this to light in our spotlight series.

We invite you to share your stories of any type of complication before or after the birth of your child. Whether it's preeclampsia, a cord trauma or an infection like Group B Strep, we want your stories.

Have you experienced complications during pregnancy or immediately after?

You want prenatal and postnatal complications?

I've had them in spades. My son just turned a year old, and I can't stop thinking about what happened after his birth every single day.

After having a miscarriage in 2008, another in 2009, and a third in 2010, I was desperate to have a pregnancy.

I have PCOS and hypothyroidism, and my doctors had told me that if I wanted to carry my own child, I needed to do it ASAP.

I couldn't get affordable health insurance due to my pre-existing conditions. The policies I could get didn't cover infertility treatments anyway. So I hit blogland to see what real doctors prescribed for women I thought were similar to me.

I found that some women had luck trying to conceive while on Clomid. I gave it a try, but after several cycles and too many stark white peesticks to count, I decided it wasn't working.

One day I woke up feeling worse, worse than I'd felt since the miscarriages - crampy, achy, downright vomity - and I knew I had to test just one more time. It was positive!

The next day, I was admitted to the hospital for the pain due to a suspected ectopic pregnancy. I spent the next three days there until an intrauterine sac showed up on ultrasound.

Guess what also showed up on the ultrasound? My right kidney, very inconveniently nestled up to my uterus.

Hyperemesis hit immediately, as it had with the other pregnancies. It sucked, but at least there was a constant reminder that lucky number 4 was still hanging in there. I was given an anti-emetic and remained on it for the remainder of the pregnancy.

It made things so much better. Even on the medication, I weighed 45 pounds less after delivery than I did before I got pregnant. (I've never been so happy to be fluffy in all my life. Imagine if you didn't have those 45 pounds to spare!)

At eight weeks, I started seeing spots. My blood pressure had started to rise, and a 24-hour urine protein sample showed I was already emitting large amounts of protein in my urine. The blood pressure medications made me incredibly dizzy. For the rest of the pregnancy, I couldn't stand up for longer than 15 minutes without feeling as though I might pass out.

At twelve weeks, my husband and I thought we were in the clear.

Suck it, first trimester!

I went to the bathroom one night at work, feeling slightly crampy. I found that I was bleeding and had passed a large clot. I rushed to the hospital, all the while thinking, "We shouldn't have bought the crib. We tempted fate and now it's all over. I'm sorry, baby."

It turned out that I'd had a small fibroid that grew larger from the pregnancy hormones, too large for its own blood supply. It was dying from the inside, hence the blood and pain. I went on the first of several stints of modified bed rest.

At 18 weeks, the bleeding from the fibroid finally stopped and I was released from activity restrictions. I promptly got food poisoning and ended up dehydrated and in preterm labor. Cue modified bed rest, part two, which ended at 22 weeks.

My blood pressure had risen to dangerous levels at 23 weeks. I was already maxed out on the amount of blood pressure medication I could take. I was also emitting even more protein in my urine. Enter modified bed rest, part three. On the ultrasounds, it showed that baby was getting smaller and smaller for gestational age.

I tested positive for gestational diabetes at 24 weeks. That, combined with the other complications, ruled me out of all care options in my hometown.

We're in a rural community, and a maternal-fetal-medicine team flies in once a month to do level two ultrasounds. They took on my care, seeing me when they were in town. I drove 220 miles one way to see them for the rest of my appointments. I caught bronchitis in their office and broke a rib coughing. Unpleasant at the best of times, downright intolerable when there's also a baby kicking you those ribs.

At 26 weeks, my blood pressure spiked some more. I was seeing spots in my vision all of the time. I had a constant severe headache. I was having epigastric pain, but I thought it was just heartburn from throwing up all the time and wondered why antacids weren't working. Due to miscommunication between my care providers, this went unnoticed until 28 weeks.

At the 28 week appointment, I was put on full bed rest after an abnormal EKG and some bad cardiac laboratory testing. It was only then that the maternal-fetal-medicine team realized that they'd never done a urine protein check on me. It came in high of course, but nobody could decide if that was because of my crappy pelvic kidney (that had been emitting protein for the entire pregnancy and was now getting damaged further by constant baby headbutts) or if it was the beginning of preeclampsia. 

We monitored it for several weeks. The levels rose slowly, as did my blood pressure, and they decided to keep me home on bed rest with a blood pressure monitor. They would induce labor as soon as the baby's lungs were ready.

At 37 weeks, his lungs were ready, which was good because labs showed I was in the early stages of heart, liver, and kidney failure. He was deemed fully cooked. He thought differently and refused to make his appearance.

After 84 hours of labor (GBS+, 37 hours since my water broke), I had a c-section. I had a bad reaction to the spinal on the operating table. Our son's heart rate hit 30 and mine hit 16. I thanked them for the blessed pain relief. Labor sucks for most (if not all) people, but I didn't know it would also make me flashback to the sexual abuse I suffered as a child.

I never thought I'd really have a baby at the end of it all. Not until I saw him alive and screaming. I thought that was the end of the nightmare called reproduction. But after two hours in the recovery room, his blood sugar was a little low, so they took him for monitoring.

Eight hours later, when I could stand and walk again, they let us have our son back to feed him. We thought he was just sleepy when he didn't want to eat.

Wrong.

His blood sugar had tanked after they forgot to check it during those eight hours, and he was lapsing in and out of a coma. He was rushed to the NICU for IV dextrose.

He was also jaundiced from ABO Incompatibility and had to be on phototherapy. He stayed in the NICU for the next five days.

He's a determined, stubborn little fighter to this day, and we are so lucky that he made it unscathed through all of the complications.

Mama, on the other hand, still can't process the enormity of all of it - more than a year later.

But on the bright side, the PTSD symptoms from the pregnancy, birth, and postpartum period have almost completely eclipsed the symptoms I had from other life events.

So, glitter?

Yes, glitter, dammit!

Prenatal and postnatal complications are unfortunately not extremely rare, even in the United States. This month, Band Back Together is bringing them to light in our spotlight series.

We invite you to share your stories of any type of complication before or after the birth of your child. Whether it's preeclampsia, a cord trauma or an infection like Group B Strep, we want your stories.

I struggle with being extremely vocal about Group B Strep awareness. I would love to scream, “DANGER DANGER” from the rooftops, but for me personally, I don’t like to frighten people.

I struggle with knowing when to step in and say, “You really should head to the doctor since your baby has x, y and z symptoms because those are signs of GBS.” I’ve done it a few times on Facebook and Twitter and in real life, but the bottom line is, I don’t want to say anything because I don’t want people to think their baby is going to die just because mine did.

I struggle with being able to spout statistics, because statistics are bullshit. Yeah, the chances of a baby contracting early onset GBS are slim. It’s even more slim to contract late onset GBS. And it’s downright rare for a baby to die from late onset GBS. But when YOU are the statistic – the rare one – it’s often hard to tell someone of your experience without causing sheer panic.

I don’t struggle with talking about grief. But I do struggle with talking about Group B Strep.

July is Group B Strep Awareness Month.

So I’m here to talk about it.  My son's death in 2003 would be in vain if I couldn't turn it into something "good" and this is what I do. I talk about Group B Strep.

For those who don’t know and who may stumble across this page, let me first tell you about Group B Strep.

What is Group B Strep (GBS)?

Group B strep (GBS) is a type of bacteria that is naturally found in the digestive tract and birth canal in up to 1 in 4 pregnant women who "carry" or are "colonized" with GBS. Since levels of GBS can change, each pregnancy can be different. Carrying GBS does not mean that you are unclean. Anyone can carry GBS. (Quoted with permission from Group B Strep International)

When will they test me for Group B Strep and what does that even mean?

CDC’s guidelines recommend that a pregnant woman be tested for Group B Strep when she is 35 to 37 weeks pregnant. The test is super simple. It's simply a swab of the vaginal area and rectum. Results are typically back at your next appointment. At that time you'll be told whether you're positive or negative.

A pregnant woman who tests positive for GBS and gets antibiotics during labor has only a 1 in 4,000 chance of delivering a baby with group B strep disease, compared to a 1 in 200 chance if she does not get antibiotics during labor.

Any pregnant woman who had a baby with GBS disease in the past, or who has had a bladder (urinary tract) infection during this pregnancy caused by GBS should receive antibiotics during labor.

What’s the difference between prenatal onset, early onset and late onset Group B Strep?

Prenatal onset of Group B Strep happens before your baby is born.

Early onset relates to cases from birth to 7 days old.

Late onset typically relates to cases from 7 days old to 3 months (or later in some cases, but that's the typical timeline for GBS to infect a baby).

 What do I look for?

Symptoms of Prenatal Onset Group B Strep:

• • decreased fetal movement or no movement after 20 weeks
  • unexplained fever in mother -- signals infection

Once born:

•  
  • High-pitched cry, shrill moaning, whimpering
  • Marked irritability, inconsolable crying
  • Constant grunting as if constipated
  • Projectile vomiting
  • Feeds poorly or refuses to eat, not waking for feedings
  • Sleeping too much, difficulty being aroused
  • High or low or unstable temperature; hands and feet may still feel cold even with a fever
  • Blotchy, red, or tender skin
  • Blue, gray, or pale skin due to lack of oxygen
  • Fast, slow, or difficult breathing
  • Body stiffening, uncontrollable jerking
  • Listless, floppy, or not moving an arm or leg
  • Tense or bulgy spot on top of head
  • Blank stare
  • Infection at base of umbilical cord or in puncture on head from internal fetal monitor

What is the outlook for a baby who contracts GBS?

Babies can be infected by GBS before birth and up to about 6 months of age due to their underdeveloped immune systems. Only a few babies who are exposed to GBS become infected, but GBS can cause babies to be miscarried, stillborn, or become very sick and sometimes even die after birth. GBS most commonly causes infection in the blood (sepsis), the fluid and lining of the brain (meningitis), and lungs (pneumonia). Some GBS survivors have permanent handicaps such as blindness, deafness, mental challenges, and/or cerebral palsy. (Quoted with permission from Group B Strep International)

Now we’re all caught up on what Group B Strep is.

So here’s where I’m honest with you.

I don’t believe in scaring people. I believe in educating people and arming them with the information that will allow them to make informed decisions.

Unfortunately, I can’t make decisions for everyone. If that were the case, nobody would ever have their membranes stripped, internal exams after finding out they were GBS+, scalp electrodes during labor, long labors without c-sections, or choose to not have antibiotics during labor with a positive GBS status.

In short, I would put everybody in a GBS-proof bubble.

As long as there is life on Earth, there will be baby loss. There will be mothers dying during labor, babies taking one breath, babies spending weeks and months in the ICU because of life-threatening conditions. As much as we want to eradicate it, it’s a fact of life.

I’m armed with more information about GBS than most doctors, but that doesn’t mean that you shouldn’t talk to your doctor about Group B Strep. Because the incidence rate is smaller and smaller, a lot of doctors do the test at 35-37 weeks and just throw out the positive or negative results without much of an explanation. Make them explain it to you. Talk to them. Understand it.

Use your mommy and daddy instincts and USE YOUR PEDIATRICIAN. That’s why they went to high-dollar schools for a bazillion years. To help you when you need them.

The baby does something you don’t like or understand? Call them. Go in.

BE THAT MOM!

I can’t underscore this enough. YOU know your baby better than anyone and have to follow your instinct. If it says, “call the doctor,” then by God, call the doctor.

Your gut is rarely wrong.

Anyway, in honor of Group B Strep Awareness Month, I want to answer your questions.

Leave a comment (or Tweet it to me or ask me on Facebook) with any question about GBS you may have. If you don't want to do it publicly, email me at janasthinkingplace@me.com.

I’ll post a few times this month with answers to them. And together, we will make the world AWARE OF GROUP B STREP!

It’s not something I talk about. It’s not something I write about. I’m not proud of the way that I acted that day. But could you blame me?

They’d just taken my baby from our safe, cozy little hospital room in my cozy little hometown and transported her by ambulance to the NICU in a foreign land. OK, it really wasn’t a foreign land, but it was a town that I did not frequent, in an area of the town that I’d never been to. Today, I could drive the route with my eyes closed.

We’d been trying to have our little peanut for 3 long years. I charted my cycle, using my Natural Family Planning training which we had attended as part of our Pre-Cana Marriage classes. I took my temp daily and every month when I wasn't pregnant, I mourned. We’d been together 11 years by this point, married for 3. We thought that the hard part was over. I finally stayed pregnant. My body didn’t reject this pregnancy!

Oh, wait, it did. I delivered 5 weeks early. My hormones were a wreck. I was sweating. All. The. Time. Why was I wearing a sweater? Why was it over 70 degrees in October? Pre-eclampsia is evil.

So there we were, standing in the NICU with a yellow peanut for a baby, wondering why the bili-lights weren’t working. We heard words like “Biliary Atresia,” “cholangiogram,” “Mayo clinic,” “the best team in Chicago.” We saw our baby with a shaved head. They could not find a decent vein before the transport so they shaved her head and put an IV in it. They put a fricking IV in my baby girl’s head!

“We need to call Father John,” said my dad. He’d gone through this when I was 4, burying my baby sister after she was born with “Transposition of the Great Vessels” in the 80’s.

In my head that’s what was happening. I was reliving my very first memory. I was 4 and my mother was telling me that Bridget, my baby sister, was in heaven.

I ignored him.

He pressed on.

I relented.

I wasn’t happy about it. This was not like I had wanted it to be. It was not like I had planned it to be. And I don’t have a single picture of it.

My baby was baptized in the NICU.

But as the water poured over her head, I was calmed. I watched Fr. John pour the tiniest drops of water over Natalie’s head and my own soul began to be healed. (I am not saying I was able to give it all up to God at that moment, but it was a changing point in my internal torment.)

P.S. She celebrates her First Reconciliation this week!