Thank you nurses and midwives

This week is a big week in my healthcare world.  It is Nurses’ Appreciation Week and tuesday was International Day of the Midwife.  In honor of both celebrations, I wanted to thank my beloved nurses and midwives.

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Dear Nurses,

thank you for bringing some laughter into my triage room as we waited for the maternal fetal medicine doctor to come and give me terrible news.

Thank you for being the protector of my privacy- making sure I was ready for visitors in the midst of emotional turmoil.

Thank you for telling me about the “secret menu” the hospital offers where I can order quesadillas and pork bacon.

Thank you for sitting and chit chatting during my two week stay, keeping me sane and reminding me that things were happening beyond the fetal monitor I was trying not to watch.

Thank you for watching that fetal heart rate monitor so I could have the freedom just to be pregnant, knowing my baby was safe.

Thank you not commenting on how ridiculous i must have looked in in my sleeping outfit- it was just too hot to wear pants even though I knew you’d be coming in to readjust the monitor.

Thank you cheering me along in my in hospital exercise regimen.

Thank you agreeing to be my labor nurse, knowing my case would be emotionally hard and would likely sit in your memory for a long long time.

Thank you for taking photos of Mabel’s birth- not in your job description, but so meaningful to me.

Thank you for watching my baby in my stead, while she was whisked away to the NICU and I got my stitches.

Thank you for repeating everything the neonatologist said, right after he left because I could barely process it all.

Thank you for getting Mabel skin to skin with me for as long as humanely possible.

Thank you for the footprints, in ink and in clay, that turned out amazing, all done while she was on my chest.

Thank you for making sure she wasn’t in pain.

Thank you for taking out her breathing tube, gently, allowing me a first good glimpse of my daughter’s face free from medical equipment.

Thank you for taking photos, during her life and her death and in the after.

Thank you for feeding me, which I needed direly, but was unable to recognize myself.

Thank you for being present but unobtrusive.

Thank you taking her gently when I gave her up that very last time.

Thank you for giving me peace and solitude to sleep and to grieve in the hours after I gave her up.

Thank you for coming to her wake, taking me for walks, bringing me food in the aftermath.

Thank you for being part of it all and keeping her safe, in pregnancy, in labor and in the NICU.

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Dear midwives,

Thank you for all the extra care

Thank you each for calling and checking in when we got the news about Mabel’s Down Syndrome.

Thank you for letting me make tons of extra visits to help keep me sane.

Thank you for letting me use my appointments as mini therapy sessions

Thank you listening for a heartbeat first thing, so I knew she was still alive, before doing the rest of the visit

Thank you for having the hard conversations with me- the ones that were hard for me and hard for you.

Thank you for being honest, saying “I don’t know,” when I asked how I was supposed to return to midwifery if my baby died.

Thank you for giving me the few things I had hoped for- skin to skin, Chris cutting the cord and announcing gender (if he could figure it out!).

Thank you coming to meet her in the few hours she lived- so that you are part of the proof that she actually existed.

Thank you for her dress, an outfit given with love and purpose, the only outfit she worse outside her grave.

Thank you for eating wings with me, bringing me cabbage leaves for engorgement and looking at photos in the aftermath, reminding me that you are not only my midwives, but my friends.

Thank you for the donations you made in Mabel’s memory

Thank you for the lilac bush that you gave me because you know purple is my favorite.  It’s beginning to bloom right now.

Thank you for remembering dates- due dates and anniversaries.

Thank you for saying her name, easily and freely, just like she was any old living child.

Thank you for keeping her safe in my womb and alive in memory.

 

 

 

 

 

Validation at work

“You’re really good at this!” she exclaimed as we finished up her visit. I had just put in a Nexplanon in her arm (a small subdermal form of birth control that lasts 3 years). It’s popularity is growing, mostly in my younger patients, who love the idea of something easy and long acting.

I smiled somewhat sheepishly. “Thanks!”

“No really, I mean it,” she went on, with her teenaged enthusiasm. “You’re so thorough and just really friendly. I’m so glad it was you who did this. You’re really good at your job, you know. It’s so cool, finding something you’re good at.”

Her words were well timed. I often have so many doubts about my place at work. Some days I feel like an empty shell. I smile and say all the encouraging words that I’m supposed to, but then go how and stew over things people say, especially around pregnancy. It doesn’t feel good to be “faking it” all the time. But on a visit like this, it was really easy. I love my teenaged and early 20s patients. I’ve made it known in my practice that I have a special interest in the adolescents, so my staff and fellow colleagues often book patients in that age range with me.   I need these patients right now- they remind me (even without them saying so) that I enjoy parts of my job, that it can be fulfilling and that I can find meaning in it.

“Thanks,” I told her more earnestly. “I sometimes need to hear that. I do love my job sometimes.”

She jumped off the table, her arm neatly bound by the pressure dressing, and I knew she’d be back next year to see me.

A few patients later, I sat in front of one of my prenatal patients. She comes weekly for an injections that helps prevent preterm labor in those who have already had a preterm birth, so I’ve see her frequently. Last time I saw her, she had been struggling terribly with heartburn that made her vomit and caused bad headaches after. She had exhausted all the over-the-counter and lifestyle changes to try to combat her discomfort without any relief. Las time I tried a non-traditional medicine- one for nausea that helps with headaches, though not usually used for heartburn. I told her I was unsure it would work, but worth a try because the safety was well established and her symptoms were non traditional.

Now, two weeks later, I asked how she was doing. She told me the new meds still didn’t help. She had waited to talk to me about it, avoiding the topic at her last visit with a different provider.

“I think it’s time we try a prescription heartburn medication,” I said. I explained how the medication is “category C”- a category given to medications to rate their safety in pregnancy. We usually try to stick to category A and B medications and take category C medications on a case by case basis. In her case, I think its worth the risk (not that there is established risk, simply many of the category C medications there is just not enough information).

“See, this is why she’s my favorite,” she turned her head and was speaking to her husband and brother in law who tagged along to the visit. “She explains everything and really tries to help.” She looked back at me and continued, “let’s give it a shot. If this doesn’t work, then really, I’m just going to have to deal. I don’t have that much longer anyways.”

I smiled for several reasons. Her compliment, like my other patients, was well needed, especially coming from a pregnant woman. I also appreciated her attitude- she felt like she didn’t have that far to go, she could put up with discomfort if she had to. She was 24 weeks and had plenty of time to go. I know so many patients who feel like the last 3-4months are an eternity with their discomforts, and here was this woman who understood the transience of pregnancy and recognized that sometimes we just have to put up with discomfort to simply be pregnant. It was a relief for someone to understand that. I put up with many discomforts during Mabel’s pregnancy- and though I might have mentioned some of them to my providers and friends, I always tried to make the point that I wasn’t complaining, just stating- because really I was just so grateful to be pregnant. Every day I had still pregnant was a gift, considering how high my risk for loss was. Even without that risk, I do truly believe everyday being pregnant is a gift. I just wish some of my patients realized that.

What gets you through the days? Where do you get your validation?

Pylectasis

The sonographer grabbed me in the hallway to tell me about the patient of mine she just scanned. The ducts in the kidneys looked a little dilated- upper limits of normal. She wasn’t sure if it was a real issue or not, but wanted to talk to me about it. “let’s send her for a level II,” I said, referring to an ultrasound over with the Maternal Fetal Medicine Specialists. “They’ll be able to tell.”

I popped in to see the patient quickly, just to tell her my plan. I wasn’t too fazed, because my sonographer wasn’t too fazed. And I told the patient just so. “Just to be safe, we’ll have them check it out.”

The next week I received the ultrasound report in my inbasket. “Bilateral pylectasis” it read. Water on the kidneys. The sonographer’s intuition was right. I was glad we had sent her for the follow up scan. She would need follow up ultrasounds in pregnancy to see what happens with the kidneys- sometimes the water goes away and there is no issue, sometimes it persists and the baby will need follow up with urology.

Not long after I saw the report, I got a phone call from the patient. She was upset.

“They really pushed me to get genetic testing!” she exclaimed. When I had offered her genetic screening for the common trisomies, like Down Syndrome, she had declined earlier in pregnancy. It wouldn’t change her management; she would have the baby regardless, she told me. But with the new news about the kidneys, the doctor had tried to explain that there can be an association with pylectasis and Down Syndrome. She ultimately decided to do non invasive genetic screen- cell free fetal DNA, which is an accurate blood test on the mom, that looks for fetal DNA in her blood. It tests that DNA for trisomies like Down Syndrome. It’s highly accurate.

At first I thought she was upset because she ultimately didn’t want genetic testing. “We can cancel the test,” I told her. But no, that wasn’t her issue.

She was upset because they told her that her baby could have Down Syndrome. She wasn’t even upset about the potential diagnosis, she was more upset at the presentation of it. From what I could interpret, she thought they were being so negative, when chances were, things would be fine.

We talked about how the doctors over there at Maternal Fetal Medicine are used to giving bad news- because they have to do it so often. That can affect their presentation. And it’s there job to tell every possible outcome based on what they find.

“If my baby has Down Syndrome, fine. I’ll deal with it. But don’t just jump to conclusions,” she vented about her experience there.

Ultimately she wanted to vent. And also hear that her baby might not have Down Syndrome. She rather remain optimistic until proven otherwise.

It was a strange conversation for me- one about Down Syndrome, but also not about Down Syndrome. She knows I had a baby that died, but I don’t think she knows that she had Down Syndrome. Out conversation could have sparked all sorts of feelings- a baby with kidney issue, possible chromosome issue- but surprisingly, it didn’t.

Is this progress?

I’ve always wanted a big family

I sat across from her in the exam room. She was there with her partner and the youngest of her two children, a toddler. She had no clue when her last period was, but based on some recent negative pregnancy tests and now positive, I knew she was in early days. I had congratulated her when I entered the room and she welcomed my words with a smile.

“So were you guys trying or was this a surprise?”

I ask pretty much all my patients this, especially at these kind of visits- one we call “confirm pregnancy” appointments. It’s a quick early visit, to establish with our test that a woman is pregnant and to see if they need an early ultrasound. Plus we are able to start some education and answer questions before the typical initial pregnancy appointment at 8-10 weeks. I ask this question because sometimes people come to this visit to discuss options- I’m trying to see if I need to discuss termination or just plow forward with all the excitement of a new pregnancy. I’m also trying to assess her emotional needs- does she have support? What are her worries?

“Oh, it was a surprise!” She said with a laugh.

“So were using any birth control recently then? Pills? Condoms…?” I ask this to help assess her pregnancy dating. Recent pill use can affect timing of ovulation and thus pregnancy due dates.

“No…” A typical answer that always makes me laugh internally. In my world if you’re not contracepting, you are actively trying to get pregnant.

“But you seem happy about things?”

“Oh yes! I’ve always wanted a big family!”

I looked at her, in her twenties now pregnant with her third child. No history of loss. Smiling, happy, accepting and expecting that things of course would work out.

I’ve always wanted a big family. In the beginning of our relationship, Chris and I discussed how many kids we wanted. He wanted two. I wanted five. He came from a family of two kids; I came from a family of five. No wonders there. Because I got married and would be starting a family later in life, I knew that five was unlikely- we sort of agreed on three (though he would sometimes would argue for two still). When Mabel was diagnosed with Down Syndrome, I became firm in my belief I wanted three kids. We needed to ensure she had siblings who would care for her when Chris and I were no longer able to or weren’t around.

I now laugh at myself- even then- at the naivete of those thoughts. As if we have some sort of control of how many kids we get to bring home (I recognize in a way we do- with the medical marvels of birth control and all…). I didn’t realize that when I was wanting three kids I should have been hoping for three living children. Silly me!

I recently posted about grieving parenthood but I’m also grieving the loss of my future family dreams. If I’m lucky enough to get a take home baby- I no there are no guarantees that I’ll be lucky enough to get another. In another world I thought being an only child seemed like a cruel thing. But I wasn’t thinking about the fact that parents might not have had a choice. My childhood was defined by my large family- I want a semblance of that for any future child I might be lucky enough to have. But I feel like asking for more than one living child is greedy. Just give me one, please. In addition to grieving active parenting, I’m grieving parenting a large family- and the innocence in that statement I heard in the office… “I’ve always wanted a big family!”

How have your visions of your future family changed after loss?

Sick days

Sometimes I just wish I could take a sick day.

On a day when I’m feeling sad- or want to feel sad- when the idea of facing pregnant woman after pregnant woman just feels like too much, overwhelming, I wish I could call in and take a mental health day. Spend the day between the couch and the bed, looking at photos, distracting with bad tv.

In medicine, providers rarely take sick days. I’ve had colleagues work with IVs hidden under their sleeves rather than call in sick, co-workers who see one last patient before they themselves go to the emergency room. I was feeling really bad one day, a few years back (I rarely get sick). I didn’t eat anything but crackers for lunch, which was highly unusual for me. By the end of the afternoon I was severely nauseous and struggling through each patient. With two more to go, I quietly vomited in my office trashcan before heading into the next room. My sonographer caught me afterwards saying she had a patient freaking out over her ultrasound and could I talk to her. I could not say no. I stood patiently in the room as she cried over a minor finding on the sonogram (which in the end turned out to be insignificant). After consoling her best I could I left the room to finish vomiting.

If I can’t even call in sick for that, how can I justify taking a mental health day?

Of course, I could simply make the call. But the twenty-five patients on my schedule that day would have to be moved- those who need to be seen would be smooshed into my coworkers already busy days and others would be overbooked with me when I returned. So calling in sick not only burdens my colleagues, but also makes my following days in the office that much worse. I often felt like this in high school, rarely staying home because I wouldn’t want to miss the classes and have my return be a mess. It was just easier to suffer through.

So that’s what I do now when I’m having a bad day. Suffer though. I also have Wednesdays off which helps- knowing I can always use that day for my grief. I just have to postpone all my feelings. It’s hard, though, scheduling my sorrow. Sometimes I wish I could simply take a sick day.

Do you take mental health days? How do you spend them?

So much sadness.

She stared up at the ceiling, eyes welled with tears, while I stared at the screen, searching, looking for anything that would give me better news. Moments before we were in another exam room chatting cheerfully about the latest developments in her pregnancy. She had just started feeling movement and her fundus was a few fingerbreadths below her bellybutton, just where it should be for 17 weeks. I searched with the doptone for the classic “thud-thud-thud” of her baby’s heartbeat but all I hear was static and artifact.

“Baby’s being stubborn,” I said, a sinking feeling already settling in my gut. “Let’s go take a look instead.”

I looked and looked, feeling helpless- the machine was old; I’m not a trained sonographer- but I couldn’t see the telltale flicker that told me everything was alright. Everything was not alright.

“I’m having trouble finding a heartbeat. “ I put down the probe as tears filled my eyes. I didn’t hide them- they were no match for hers as she let out a panicked and woeful “No, no, no!”

I sat her up and hugged her hard. I told her I couldn’t tell for sure- old machine, needing a formal ultrasound- but I was worried. I had to send her to the hospital. She called her husband, forty minutes away and I repeated my uncertainty- it seemed what she wanted to hear, what would get her through that endless wait for her husband and then the drive to the hospital. I sat with her for a bit and then had to go see more patients. Between each one I checked back in with her, not having any words to say to would ease the pain, because there are none.

Husband arrived, off to the hospital they hurried and everything was confirmed. Her baby had died.

Here I am, a babyloss mom myself and I was still at a loss. I thought of all the awful experiences people have had with their providers (and remembered the good ones too). But I had a sudden empathy for the bumbling providers. Some behavior is inexcusable, but there are many other clumsy caregivers who just wish they could take away the pain, but know they can’t. Stupid words fall from their mouths, medical processes are focused on- all because they were helpless. Their pain is nothing compared to the patients, but I had a little more insight. It had been a long time since I had to say the words and it was my first time since my own loss. It sucked. It was terribly heart wrenching for me and even more so for my patient.

So much sadness.

What was your experience hearing bad news? What was done well? What do you wish could have been done differently?

We are all sad

I reviewed her chart as she sat in front of me for her new OB appointment. Two of her children had died in a freak accident in the recent years and now she was pregnant again. She told me this was a planned pregnancy. “This must be a complicated happiness,” I said. She nodded in complete agreement. I shared, that I too had lost a child- under very different circumstances- and we had a little side conversation about child loss.

“I had some people tell me ‘I know exactly how you feel because my child died too!’” she said, “But I’m like, ‘no you don’t. Your child died in gang related gun violence. He was doing something he shouldn’t have been doing. My children were innocently sitting at home!’”

It was a powerful statement.

Hierarchy of loss. It is something we discuss a lot in the loss community- loss is loss, we say. Is there a hierarchy? I think yes and no. I think it is a different loss experience having a miscarriage at 5 weeks and one at 12. I think it is different having a stillbirth versus a neonatal loss. I think it is different having a neonatal loss versus child loss. I think it is different having a child die from something preventable versus random. I say I think before each of these statements because I have only experienced one such scenario. I know there are some people out there unfortunate enough to have experienced more than one of these and perhaps these people can speak better of how, if at all, the losses are different.

I often feel almost guilty in the loss world because my baby was born alive- I got to meet her, though briefly. Many of my loss friends never had the privilege of hearing their baby cry- whether it be through miscarriage or stillbirth. Weird, right? To feel some sort of guilt about my baby living? I had to experience other loss, like the loss of a carefree pregnancy and the pain that comes with wondering if my child is suffering. But I also know exactly why my child died, while others won’t ever have that knowledge. I could go back and forth about how my loss was harder in some ways and easier in others- but it isn’t a competition. There are no winners in babyloss. All I really want is the pain related to my loss acknowledged as real and legitimate.

My patient is right in a way- her loss is different because her children were dong nothing wrong. The other woman’s child was engaged in risky behavior. But my patient is misguided in a way too- I’m sure that other woman was not only mourning the death of her child, but also the loss of what he could have been- the child not involved in gangs. She probably had complicated guilt over her child having some responsibility in his own death or maybe feels responsible herself for being unable to keep him out of gang violence.

I think what it comes down to is no one knows exactly how each of us feels, but we are all sad over our losses- the early ones, the expected ones, the preventable ones and the random, unexplainable ones. I know I am constantly seeking the person who knows exactly how I feel, but I think I’d be hard pressed to find another 34 year old midwife who lost her first child to an extremely rare and random combination of birth defects. So for now I take solace in the comforting words of others who share aspects of my loss. Those with infertility know what it’s like to wait almost two years and have no baby to show for it. Those who miscarry know what it’s like to have the dreams of a normal pregnancy ripped away. Those who chose to terminate based on a difficult prenatal diagnosis know what it’s like to make extremely hard decisions for their child.  Those who have a stillbirth know what it’s like to birth a baby but leave the hospital with empty arms. Those who have neonatal loss know what it’s like to watch their children die, wondering if they suffer. Those who have child loss, preventable or not, know what it’s like to bury a child.

We are not the same, but we are. We are all sad.

What are your thoughts? Is there a hierarchy of loss?

 

Baby Bottles

“Do you have any recommendations on bottles?” she asked, her body swollen with it’s second pregnancy well into the third trimester.

I stared at her blankly, not understanding.

“I plan to go back to work, so you know, for pumping.  Do you have any recommendations?”

I was not only lost by this nonsequitor- we had just been discussing her thoughts on this baby’s weight compared to her first- but I was also surprised she was asking me.  I’m a midwife- birth is my thing, not bottles.

“That’s a better question for your pediatrician.  I don’t do babies once they come out of you.”

I wanted to add, “and my baby died. I never got a chance to breastfeed, let alone worry about bottles.”  I was mad at this woman in a way.  This was her second baby.  Shouldn’t she have figured it out with her first baby?  And really?  You’re asking the woman whose baby died?

Not fair, I know.  She probably didn’t read the sign about Mabel.  She has no reason to know anything about my personal life.  And since part of my job technically is to deliver babies, it’s not too much of a stretch to assume I know something about feeding them.  I do know a bit about breastfeeding after all.

I couldn’t help but feel angry at the woman even though it wasn’t her fault.  I know deep down I’m not really angry at her, I’m angry at the circumstance.  I felt like the universe was teasing me- playing a cruel little joke, presenting me with a question I should have been able to answer had my baby lived.  That universe which I once thought if I was good to, it would be good to me.  Silly me.

Have you ever felt like the universe was playing a joke on you?

I am not the bad guy

I have a confession. I was not the perfect pregnant woman. Every few weeks I had a glass of wine. I snuck some raw cookie dough and licked the cake batter bowl. I ate too much sugar and not enough vegetables. Many of my babyloss counterparts say “I did everything right” and I often have chimed in, though I know I did a few things that others might have looked down on me for. But none of these things killed my baby. A faulty chromosome was really her downfall- something that is usually quite livable, but in her case leading to a cascading effect of fatal birth defects.

So when I hear people doing some counter culture things in pregnancy (crossfit? An occasional glass of wine? Medication with potential effects on the baby?), I have always been rather understanding, even now in my grief. But I draw the line.

Arguing with me about how marijuana should be allowable for pregnant women doesn’t change the fact that it’s still illegal here. My job requires that I protect your health and your baby’s health. If you are unhappy with the law, take it up with your state legislature, not with me.

I could go on about how people who smoke marijuana often use other drugs, about how unregulated marijuana could be laced with other harmful substances, how people who make poor decisions regarding drugs are more likely to participate in other risky behaviors.

I am not the bad guy.

Being pregnant is a privilege and an opportunity to better oneself. I was told my baby was likely going to die and I still recognized that. I asked advice of my providers and listened. I wish others would do the same.

Do you have any confessions? What do you get mad at seeing other pregnant woman doing?

A little glucola, a little Mabel

“Ugh I don’t want to taste that syrupy gross glucola again,” she said adamantly.  A long discussion ensued, where I reviewed her risk for diabetes- her size, her family history, and where I went over the risks of undiagnosed diabetes, including stillbirth.  I often have patients complain about the diabetes test.  It’s gross, but it’s necessary.  I offered her a jellybean test or referral to do finger sticks to assess blood sugar.  She didn’t seem interested.  I tried to instill how important the test is.

“I won’t sleep well at night until I know you don’t have diabetes.  I want to make sure your baby is okay,” I pleaded.  She reluctantly agreed to go before her next appointment, though I wasn’t convinced.  I knew this patient well- she’s generally jovial, educated and opinionated.  She had been my gyn patient before pregnancy and was seeing me exclusively for her prenatal visits.

“You better be there when I deliver!” she coaxed me.

“You know I’m not doing deliveries right now, right?”

“Well you’ll do them by January 1st, right? In the new year?”

“We’ll see. When I’m ready.  I’m taking it day by day right now.”

“Why aren’t you ready now?”

“My baby died.  It’s too sad for me right now.”

She stood up and gave me a big hug.

“So this is why you want me to do the glucose test, huh?”

“I know what it’s like to not take a baby home from the hospital.  I don’t want anyone else to have to do that.”

She did her glucose test right after the visit.  She passed. I’ll sleep better.

Mabel came up organically in this conversation, but I worry some people might view me a using her to guilt people.  I don’t usually bring her up under these circumstances, but it just came out naturally- and frankly, it felt right.  What do you think?  Am I using my experience in the wrong way?  Have you had a similar situation?