Hey Jude — Ending a Chapter

Today, Jude is two years and 10 months old. In exactly eight weeks, we’ll (okay, I’ll because let’s be honest about who’s doing the ‘heavy lifting’ here) hopefully deliver our fourth and final baby via scheduled C-section on December 21 at approximately 37 weeks.

I don’t know if it’s the sleep deprivation that’s –this time—come from excess work or the reality that this is it, but I’ve been so much more emotional in the past few months than I have been in the past year when I think about and talk about my Jude.

If you’ve ever lost someone, first, I’m very sorry. Second, you know that most of the time…you’re okay. You mourn privately and usually on anniversary days, perhaps their birthday or the day they passed away, but otherwise, you don’t walk around with your emotions bubbling below the surface (that’s not to say you’re not always thinking about your that you don’t still love the person you lost, of course).

I’ll admit that I thought I was past the point of spontaneous tears, but it seems I’m not. Because we don’t know the gender of this “mystery baby”, I ordered a very cute “Baby’s First Christmas” outfit in the newborn size. As soon as I did, I thought about the what ifs…a great thing for when I’m writing fiction; not so much for when I’m thinking about what could happen between now and December 21 and even afterward (I’m very anxious about delivering at 37ish weeks and about possibly having to have a steroid shot to develop the baby’s lungs prior to; I’m also anxious about the baby having medical complications due to being delivered so early.).

But, the what ifs…they come whether you want them to or not. Before I could hit stop and eject on the thought process, my mind was at Jude’s funeral, and I was standing in front of that little teeny satin box, and his teeny body was in it and dressed in his little blue outfit, and he was there, but he wasn’t, and …just thinking about it, it makes me cry. I miss him so much. I’m so afraid of going through that again. The thing is, it’s okay that no one can say anything to make it ‘okay’ because it’s just not okay.

There are some things, some circumstances in life that are too complicated for words to make right. I think about my friend who brought coffee the next day at like, 6:00 in the morning before her shift at the hospital. It was coffee. That stuff most of us drink every day so our facial muscles function properly (I might be over-sharing here.) But, you know, it was so much more than coffee. It was just…showing up and wanting to help and bringing that one little comfort that I couldn’t get. It was her tact in not trying to say the “right” thing because there really is no right thing you can say.

I’ve observed more and more people put their foot in it trying to say the right thing instead of just keeping their mouth shut. I’m still a member of the Pregnancy after Loss group, and what some of these women endure is surreal. One pregnant “friend” asked a mom two months after her loss if she could buy or have her baby things since she wouldn’t need them. Other times, people suggest that the women can always have more babies, or they suggest that if they already have one child, “At least you have (first child / children).” They don’t understand why the women don’t celebrate when and if they can / do get pregnant again.

I know I’m not as sensitive to some stimuli as other PALs, but I get being pregnant again not necessarily being a cause to celebrate. It’s like walking across one of those broken wooden rope bridges in an Indiana Jones film. Maybe you’ve made it once, maybe you haven’t, but there was that one time where the board beneath your feet broke and you fell. You almost died, and it took every ounce of hope and humanity that you possessed to get up and to climb back to the top of the cliff and to start walking again. The walk is never the same. Every step, every board looks nefarious. It doesn’t matter that a team of engineers are encouraging you and assuring you that everything looks great with this bridge. There’s no reason for you to not make it to the other side. You want to believe them. You want to enjoy the scenery on the walk, but there’s no foregoing the trauma from “the fall.”

Eight weeks, especially the last eight weeks are the most treacherous part of my pregnancy journey. I’m trying really hard to hold it together as I cross the bridge, but I’m scared of heights, and I don’t like pain if I can avoid it.

I don’t want to fall again. I want to make it to the other side just one more time because this is the last time. No matter what happens on this journey, this is it. It’s not that I couldn’t try “one more time” if the unthinkable what if happens. It’s just…I don’t want to. It’s too much on me and on Sean and on our family. Being able to have children is and has been a blessing to us, but the emotional and physical burden isn’t healthy.

At the same time, closing this door somehow causes me to feel like I’ll lose a little piece of Jude. I can’t tell you how many times I’ve felt kicks or had headaches or experienced some other nuance that reminded me of Jude’s pregnancy. I’m going to miss that. I don’t want to let go of feelings that make me feel more connected to him, even if those are the same feelings that make me cry uncontrollably when I hear about someone else’s trauma or when I think about the “what ifs”.

Like all endings, this will be bittersweet. Right now, the hope of just having a healthy baby in eight weeks fully overshadows the gravity of this life transition, but I know that once it sinks in, I’ll (hopefully) be complete in a sense and can celebrate starting a new chapter while reflecting more meaningfully on the one that I’m about to turn the page on.

***

Dear Jude,

I don’t know what to say other than I love you, and I miss you. I wish I could remember you better. A PAL was asking if other moms looked at their baby’s tummy or patted their little bottoms, the kinds of things that moms do when their baby is alive. I’m sorry that I never saw what color eyes you had or changed your little diaper or gave you a bath. I remember your feet and hands; I love your feet and hands. I love the way it kind of felt like you held our hands. There’s a part of me that’s not in this world because you’re not here. I appreciate that you make me a stronger, better person in so many ways. I wouldn’t be who or where I am if not for you, and that’s not something I can necessarily say to your sisters or to mystery baby, so you’re very special to me. I just miss you, and there’s a selfish part of me who wishes she could have you here. I wish I was planning a little third birthday party right now and perhaps complaining about how hard it is to plan a birthday party at Christmas time and just be completely unaware of how nice it is to have that problem. I don’t mean that people who have that take their precious babies for granted because I know that they don’t, but I just wish…that was the most of my problems.

Anyway, I love you so much my beautiful boy. I’ll see you one day –sooner than later in the grand scheme of things.

You’re in my heart.

Love,
Mommy

Hey Jude — Finding Answers without Solutions: How and Why We Lost You

For most of us becoming a mother forces a change of chemistry; we have a natural urge to protect and to nurture our children. Losing a child –no matter faultless we are—is also transformative and is damaging.

When Jude died, there were no early warning signs. Jude had been active like any health baby in utero should be. I didn’t have gestational diabetes. At our 20-week ultrasound, he measured fantastically. I’d been well on the way to deliver another healthy baby. In the afternoon of December 25, 2014 I noticed Jude wasn’t moving as much. After giving it some time and making every effort in the book to get him to start his usual patter of kicking, we went to the doctor on December 26.

Jude had a good, steady heartbeat; the only reason they checked me in for additional monitoring was because of slight polyhydraminos (25 cm instead of 24; women can have as much as 40-something centimeters of excess amniotic fluid and never know and everything be fine). The fact that our baby hadn’t taken a breath during the half-hour ultrasound that confirmed the poly was (or at least could be) considered not a cause for concern.

At around 6:30 p.m., we were led to the hospital where the baby and I would be monitored overnight, given a steroid shot, and monitored twice a week until we were due. It was all very standard and not a reason to be seriously worried. Within hours, Jude’s heart stopped and he couldn’t be saved.

The doctor on call and our nurses cried; they had no idea what happened. It didn’t make sense, this perfectly healthy woman with a perfectly health pregnancy to have suddenly lost her baby while she was being monitored (no less). Our efforts to save Jude (an emergency C-section) meant staying in the hospital for an additional few days during which time my regular OB came in to see us. She held me and cried with me and expressed her disbelief at our loss.

The months after Jude’s death yielded many sleepless nights of wondering and searching. I laid in bed surfing Safari on my iPhone looking for answers. There were none to be had; each of my suggestions for what might have happened were rejected due to medical evidence that they weren’t viable scenarios.

There was a slight possibility I had a C-Protein deficiency, which could cause blood clots, but even that was proven unlikely when a follow-up blood test (though I was already pregnant again) yielded negative results. Ultimately, I accepted what happened and stopped looking for answers.

 

Finding Answers Part 1: Pieces to the Puzzle

Fast forward to August of 2015. We were getting close to being able to find out the gender of our third baby. I looked at a photo on our refrigerator of Lillianne revealing Jude’s gender at the exact same time one year before and felt very sad. Jude and his sister (yes, our third baby is going to be a girl) are one day apart on their gestational timeline. Jude’s gestational due date was February 12; his C-section was scheduled for February 11, my mom’s birthday. This baby, Ocean Baby, as Lillianne has nicknamed her, is due on February 11; her C-section delivery will be scheduled for February 3. We didn’t intend to have these pregnancies mirror one another or to be so close.

One night as we approached the gender reveal, I decided to Google some right side pain that came and went. It was in the area of my liver, but I didn’t have any signs of liver or gall bladder problems. I searched “causes of polyhydraminos” and high blood pressure was listed as a culprit. I made a note to look more into it the following day and headed to bed.

Halfway down the hall, I remembered that I didn’t have high blood pressure; I have low blood pressure, something I only recently found out because I spent the first couple of weeks of what technically counted as my third pregnancy’s first month in the hospital with pasteurella from a cat bite, and the doctor’s and nurses were concerned. “Is your blood pressure usually really low?” I didn’t have a clue; I called my OB’s office as they’d been the last group of healthcare professionals to monitor my BP and yes –I did have low BP.

I began searching low BP and polyhydraminos and soon found limited yet important research that validated that low blood pressure can be a factor leading to stillbirth.

 

Finding Answers Part II: How Low Blood Pressure Plays a Role in Stillbirth

The more I researched, the more convinced I became that my low BP was a critical factor in Jude’s death. Australian researcher Jane Warland has done some of the more recent studies that shows a relationship between a patient’s low or borderline low diastolic pressure and stillbirth. Warland’s studies remove systolic pressure as an indicator of risk of stillbirth.

Specifically, Warland’s studies show that stillbirth is more likely among women with “borderline” low pressure, which is diastolic pressure between 60 and 70; anything lower is considered hypotensive or extremely hypotensive. Warland also conducts a mean arterial pressure (MAP) calculation in one of her studies that shows that a MAP of 83 or less has a much higher likelihood of an occurrence of stillbirth.

Unlike a typical MAP, Warland’s MAP places double emphasis on the diastolic pressure. Warland’s MAP is calculated as thus: [(2x diastolic) + systolic] / 3. Per an article by Warland, a MAP of less than 83 carries “almost double the risk of stillbirth.”

It took a week and $165 to get my medical records from my entire hospitalization with Jude. I recovered my BPs from my pregnancy with Lillianne as well from the doctor’s office. I contacted Warland. While she didn’t respond to my inquiry regarding my MAPs, all of which were lower than 83 (the highest was 81; the lowest was 64), she did state that the rationale for assuming a borderline woman was at a higher risk is because “I THINK that this is probably related to what happens during sleep. The woman who has borderline BP during the day probably has a significant drop when she sleeps where as if it is already low during the day, it physical can’t actually drop much lower during sleep.”

While I understand this logic, I also tend to think that having a low BP can be problematic given that the issue with having low BP is that there’s not enough pressure to push nutrient-rich oxygenated blood through the placenta and to the baby.

I do concur with Warland in that there are –and must be—a variety of factors present for low BP to be a contributor to stillbirth. Warland strongly believes that back sleeping versus left side sleeping can be detrimental particularly if the woman already has low BP. Importantly, in a follow-up communication, Warland stated, “So, in my research women with borderline BP were at twice the risk. Let’s say the background risk for stillbirth is 1:100; this means that if your BP is borderline, your risk would be 1:50. That still means that 49 of 50 women with borderline BP are going to have a perfectly happy baby. Similarly with sleeping on your back, the risk for stillbirth is approximately doubled. That still means 49 of 50 mums who lie on their back will get away with doing that. This is where the triple risk model comes in as it shows what might happen with a number of converging risk factors and a vulnerable baby.”

What I infer this to mean is that a stillbirth with variables related to low BP is the perfect storm. What I also interpret this to mean is that if you can try to address one or more of those variables, it could make a difference in fetal outcomes.

 

A Medical Theory of What Happened to Jude

Looking at my BPs with Lillianne and those with Jude, Lillianne should have been the baby at a double risk of stillbirth as all of my BPs with her were borderline. While Warland said, “I don’t think we have any evidence that less exercise puts you at risk,” I disagree. If a pregnant woman with high BP is discouraged from exercise because it elevates her pressure, than a woman with low BP should exercise to keep her blood moving. When I was expecting Lillianne, more out of vanity than anything, I ran or walked 5 to 7 days a week. In the third trimester, when running with the extra weight became harder, I started doing leg lifts with ankle weights to strengthen my muscles. I did this before bed every night for the majority of the third trimester.

With Jude, I’d never gotten back into shape; I walked some at the beginning of the pregnancy but after daylights savings time and when it got cold, I more or less stopped. I also started working more often at night, which meant I sat at a desk to work during the day and I sat to work at night. I was more or less sedentary. My BPs were what Warland’s research would classify as “hypotensive” or “extreme hypotensive”.

During my pregnancy with Jude, I wasn’t concerned about fitness. I also probably rolled onto my back during sleep more often than I should have; I’d been lulled into a false sense of security by the fact that many pregnancy advisories are overdramatized. For me, back sleeping during pregnancy is much more comfortable, so it happened sometimes. Whether or not that was a factor, we’ll never know.

My theory, which my high-risk specialist said had merit, is that Jude suffered from placental insufficiency and then failure. Placental insufficiency occurs during the late second and early third trimester. Typically, babies who suffer from placental insufficiency are small. Jude was born at a healthy 4 lb 2 oz; however, they don’t have to be (small).

I speculate that my low BP combined with other factors led to a diminished supply of oxygenated blood being pushed through the placenta over the course of several weeks. On December 25, Jude wasn’t moving as much; the following day, I was diagnosed with acute polyhydraminos and Jude didn’t take a breath on ultrasound.

Without oxygen, the brain cannot grow; with enough oxygen deprivation, the brain dies. If Jude had suffered from placental insufficiency, then this would explain why he still have a steady heartbeat when we went in for monitoring; it would also explain the slight polyhydraminos; he was neurologically no longer capable of breathing in the amniotic fluid critical for his development and survival. This is why, too, then, that within hours of being checked in for monitoring, Jude’s heart stopped.

 

Significance

Of course, this is all theory; even if we were able to prove beyond the shadow of a doubt that this is how Jude died, it would change nothing for my pregnancy with Jude’s little sister or any of his future siblings. Placental insufficiency isn’t visible; it’s only evident when the baby starts to show signs of troubled development.

No doctor is going to put a woman with low BP –even with BP as low as mine (my most recent was 80/50) on medication to raise BP.

Additionally, had I not had a loss, even if I presented this information to my doctors, they probably wouldn’t be very concerned as I don’t have any “trouble” signs of low BP. I don’t faint or get dizzy or have trouble concentrating. I do get headaches easily, and lately, I’ve noticed some tingling in my legs (occasionally) when I sit to work, but there’s no indication that being hypotensive causes me any distress. That’s not to say that it doesn’t; my BPs are definitely lower during pregnancy than normal.

So, all that we are doing is additional monitoring; I’m trying to walk at least 5 days a week, and I’ve started wearing compression socks to bed to keep my blood flow up at night. As I told my doctor, I realize that most of this is psychological; it helps me to feel like I’m in some modicum of control even though I recognize the reality of this predicament.

I allow myself to believe that there is nothing I could have done to help Jude; even if I’d been armed with more knowledge at the time, it’s highly likely we’d have had the same tragic and traumatic outcome. This, at the very least, means that I don’t blame myself or anyone else for what happened. On the other hand, it also means that I have no control over what happens with Ocean Baby, Jude’s sister. It’s a catch-22 of sorts because nothing changes…only the amount of knowledge that one has and that we now have a prospective theory of what happened to Jude.

Today marks 10 months since we lost Jude. He would have been 10 months old today. I don’t dwell on what he would have looked like or anything like that. I do think, sometimes, that he might be walking now and he’d be eating solids and following Lillianne around. I feel his presence all of the time; it’s like he’s just out of reach; he’s a warm shadow who stays close. I know he’s just beyond the veil and I know it will be a long time before I reach him. I know he knows I miss him, and even though I value every second of life here, I also appreciate that every second forward brings us closer.

 

Resource Links:

http://m.aje.oxfordjournals.org/content/153/7/642.full

https://books.google.com/books?id=5uB5DHPHwFwC&pg=PA205&lpg=PA205&dq=jane+warland+low+blood+pressure+stillbirth&source=bl&ots=LRR_f0YZIZ&sig=M4fAoawOtv5k8vONlZ6iLMWG_Q4&hl=en&sa=X&ved=0CCsQ6AEwA2oVChMIn-rP5enfxwIVCRceCh3T7QVk#v=onepage&q=jane%20warland%20low%20blood%20pressure%20stillbirth&f=false

http://www.starlegacyfoundation.org/files/Maternal%20Blood%20Pressure%20in%20Pregnancy%20and%20Stillbirth.PDF

http://starlegacyfoundation.org/wp-content/uploads/2012/09/Does-low-blood-pressure-increase-the-risk-of-stillbirth.pdf

http://www.biomedcentral.com/1471-2393/12/S1/A9

http://www.pubfacts.com/author/Jane+Warland

http://starlegacyfoundation.org/published-research/

http://lib.ajaums.ac.ir/booklist/American%20Journal%20of%20Obstetrics%20&%20Gynecology%20(%20AJOG%20)-Dec05.pdf