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?

Parallels between the babyloss and Down Syndrome Communities

This was her first visit in the office since we converted to electronic medical records. Even though I always review a patients medical history when they come in, I pay extra attention when it’s someone’s first visit since the transition. As I went over her family history I saw listed in the “son- Down Syndrome.” I don’t think I knew this about her. Perhaps I did but it hadn’t meant anything particularly special at the time.

She admitted it had been a long time since she had been in for an exam- over two years and I gave my typical reassurance- “it’s ok, you’re hear now. We’ll get you all caught up.” Before we started the exam, she asked me “what’s new with you?”

“A lot actually…”

“Did I hear you had a baby?”

“Yes. And actually she had Down Syndrome.” I saw her face perk up a bit. “but she died shortly after birth.”

“Oh, I’m so sorry, “ she said. Her words were simple and genuine. I went on to tell her about how we knew our child would have Down Syndrome and we chose to continue the pregnancy. I told her about the low fluid and what it meant for the baby’s kidneys and lungs, how the prognosis was so uncertain.

“We had no idea if she would live or die…”

“Oh my, you have been through so much! What a year that must have been!” I really appreciated her words, because I felt like I had been through so much- the uncertainty, the hope, the letdown and the grief that followed. Sometimes I wonder how I got through it all.

As I went through her exam, we continued to talk. I asked her about her son and learned he was 16 years old and low functioning- non-verbal, but a very sweet boy. She told me stories of their trip to Disney World and his school experience. She told me about her pregnancy with him and the surprise birth diagnosis.

“It’s such a treat to talk about him. Usually when people hear he has Down Syndrome, they think of it as a bad thing and avoid the topic.”

I marveled at the parallel. We continued to talk about the similarities between raising a child with Down Syndrome and being a babyloss mom. The avoidance of the topic, the unhelpful platitudes we receive, the entrance into a very exclusive club you never wanted to be in.   The visit went well beyond the 15 minute slot allotted, but it was worth it. She needed it- and so did I.

At the end of the visit, she asked after another midwife who used to work in the practice. I told her about the new job she had, how well she’s doing and how we still sometimes see each other. She had seen that midwife for years before I inherited her as a patient when my colleague left. “I used to look forward to coming for my annuals, because enjoyed the time I spent with my old midwife so much,” she told me. “But now I get to look forward to seeing you.”

Have you found someone in a different community outside the babyloss world who has similar struggles?

Sunday Synopsis

Changing early pregnancy etiquette- I like this article because it keeps on the theme I”m seeing more and more of in mainstream media- let’s talk about our losses!  espeically miscarriage- the hush hush secret.

THe healing power of animals.  This is like my story, sort of.  We got our puppy six months after Mabel died.  I needed something to love and mother.  It’s not a save-all.  Getting my puppy doesnt undo the grief of burying my child, but I found comfort in it.  Do you have an animal in your life that has helped you in your grief?

I hope that you never know.  I love this article for addressing the grief olympics that sometimes comes in the bereaved world.  I also love that it says “be there…even when you are pushed away.” to those who want to support us.  I can’t say how important this one line is to me.

Couples who chose not to have children are selfish, Pope says. Not to bring in any debate about religion, but any thoughts on this?  I think of couples who lost babies to due multiple miscarriages, due to life limiting conditions, due to stillbirth, due to reasonless reasons.  What if they choose not to go through the pain of another pregnancy?  What of the couples who struggle with infertility?  There just feels likes there’s too much behind being childless for people (religious heads or not) to judge.

She’ll remember

Some patients are difficult. Some take a long time. When I saw on my schedule that I had a patient coming in who “needs extra time” and had an extra slot blocked off for her, my stomach dropped a bit- it would make for a long afternoon. Until I read the name of the patient and realized who it was. Yes, she needed extra time. Yes, it could be difficult to care for her. But she was so pleasant- a pleasure actually.

Her chart labeled her simply as “learning disabled.” I have been taking care of her for years, having inherited her when her previous midwife left our practice.   My guess is she is on the autism spectrum somewhere, though I am not a psychiatric provider. She also has some compulsions, leaving the house wearing no less than ten layers of clothes. The extra time needed for her was merely so she could dress and undress.

She spoke in in a loud monotone voice, but was friendly. She complimented me, and just about everyone else she interacted with, on at least several pieces of clothing I was wearing.

“That’s a nice sweater and necklace and shoes and hairstyle. Your hair is so long. It wasn’t that long before.”

“No I think it’s the longest I’ve ever had it.”

She has an astoundingly accurate memory- for people and dates especially. She could tell me the exact date of each of her mammograms over the past year. She quoted from a letter she received from her previous midwife informing her of the death of a mutual friend of theirs.

“I didn’t see you last year. I saw Margaret. You were on maternity leave,” she started. I could see where this was going. “Did you have a boy or a girl?”

“A girl,” I answered with a smile. Isn’t it nice when people ask about our babies?

“That’s nice. When was she born?”

“February 15.”

“Oh, the day after Valentine’s day. That’s nice.”

And then the visit somehow went one. I asked my typical calcium intake and exercise questions. We discussed her weight. I asked how retirement was. And all the while I thought about her amazing memory. I would have told her the truth if she asked the right question, but it didn’t come up. I felt like she would ask about my baby in years to come, because she would remember. So at the end of the visit I said to her,

“I have to tell you something. You asked about my baby earlier. Well, I wanted you to know that she died shortly after birth.”

“Oh, that’s so sad,” she said without hesitating. “What happened?”

“Well, she her lungs were too small and she couldn’t breathe.”

“Why were her lungs small?”

“So she had some birth defects, because she had Down Syndrome. Sometimes babies with Down Syndrome had issues like hers.”

“I know some people with Down Syndrome. That’s sad about your baby.”

“Thank you. And thank you for asking about her.”

I wanted her to know, because she’ll remember. She’ll remember Mabel for years and years.

Is there someone you know that will remember your baby always?

reblog: Risk versus Possibility

Check out this post: http://my-invincible-spring.blogspot.com/2015/02/microblog-mondays-risk-versus.html

1) Prenatal screening can detect the risk of delivering a baby with Down syndrome.

2) Prenatal screening can detect the possibility of delivering a baby with Down syndrome.
They mean basically the same thing, but not. We welcome possibility, while weshy away from risk.

Oh my.  Here I am, counseling patients every day about whether they want genetic testing for things like Down Syndrome, having had and lost a very wanted child with Down Syndrome, and have never thought of this simple word choice.  Reading this blew my mind and will chance my terminology.

Many thanks to Sadie at Invincible Spring for bringing this to light.  Read the whole post- short, sweet and worth it.

 

Is Mabel a real person?

“Is Mabel a real person?” the woman behind the counter asked. I had called a week before to order a custom cake. I picked out a decadent flavor and frosting combo. The only things I said was that I wanted it to say “Happy Birthday, Mabel” and for it to have carrot decorations on it.

When this woman, who I could tell was the decorator, asked if she was real, I was yet again taken aback about how to answer.

“She was,” I answered quickly with a half smile.

In the car, I relayed this exchange to Chris. A strange question, we decided. I must have said something when ordering that was a little out of the usual. Perhaps they thought I was ordering a cake for a rabbit?

“I wish I had answered differently,” I told him. “I wish I had said, “Yes, Mabel’s my daughter.” But instead I said what I said, leaving them thinking that Mabel was some 85 year-old grandmother who passed away, and isn’t it sweet that we still remember.

There’s a first time for every question. Right now I can answer “how’s the baby?” and “Do you have kids” very easily, with responses that leave me satisfied. In the beginning these questions would cause my heart to race, my face to get hot and tears to well and I’d stumble over an inadequate answer. With time I learned the replies to such inquiries that left me feeling true to my daughter. If I’m ever asked again, that strange, hear-swirling question “Is Mabel a real person?” I’ll be better prepared.

The question did come at an interesting time. It’s been a full year since she was a “real” person. Sometimes I wonder, did it all really happen? Was she really here? Here I am, 21 months out from that positive pregnancy test, eight full months of pregnancy later- the discomforts, the kicks, the ultrasounds that proved there was really a baby and yet, no gurgling baby to show for it all. It feels so unreal. My life in many ways is the same- go to work, come home, care for just myself and Chris. There are many ways I remind myself that things are different- the work changes (still not attending births), the photos that line my house of a child I once held, the stretch marks on my breasts- but I am still thrown a bit when asked “Do you have kids?” Because even though I know I am a mom in a sense, I know I had a daughter, I still feel a bit like an imposter, like I made the whole thing up.

Do you ever feel that way?

Sunday Synopsis

Brides are now donating their wedding gowns to an amazing cause-  At the end of my pregnancy, I remember looking online for a baby burial outfit- just in case.  Not much out there.  The closest I could find were christening outfits- but they were gender specific and we didn’t know if we were having a boy or a girl.  I also worried they would be far too big for the small baby I was expecting.  I eventually stumbled across the perfect outfit which came just in time before we had to bury our little one.  It’s hard enough to have to even consider buying a burial outfit that small, so it’s heartwarming to hear that some people are trying to make that terribly sad and taboo task a bit easier.

NILMDTS photographers camera stolen-  Remember this?  Camera card returned to the news station!  expensive camera equipment weren’t but the memories were so gratefully returned to the bereaved parents.  there’s even a fund started to help replace the photographers equipment.

These photos show what women really look like after pregnancy  *TRIGGER WARNING* this has moms with babies in it.  I post it because I still get so upset even seeing this headline. I feel like the moral of the photo story is- it’s all worth it because, look, we have these beautiful babies to show for it.  The 4th trimester.  What about us?  We are not even underrepresented- we are passed over entirely.  It angers and saddens me.

Bridging the gap between the baby bereaved and those who love them-  I stumbled across this at such an opportune time.  It touches on something I’ve recently been trying to work on- rebuilding some lost relationships since my daughter died.  It’s not easy because I had built up walls.  I like how this article makes it a two way street- we are often quick to blame others for not understanding, not reaching out.  But we also play a role. In the time leading up to ThanksgivingI was dreading some face to face time with a baby around Mabel’s age.  Her mother reached out to me a few days beforehand, recognizing how the holiday might be hard for me and asking if there was anything she could do to make it easier.  It was such a gift- to be asked directly.  I was able to answer honestly about my concerns regarding seeing the baby and give warning about my unpredictable reactions.  It was SO much easier to be asked than to volunteer the info.

Meet the first model with Down Syndrome to walk at New York Fashion week.-  Love this!  It’s great to see more positive images of people with Down Syndrome in the media.