March of Dimes

I was a bit nervous as I approached the park. Chris was called into work last minute on a Sunday, so it was just me and Muppet. I had never done the March of Dimes before. Strange, I suppose, when you think of my line of work. One would think that I might be a yearly walker, especially because the labor and birth unit at my hospital puts together a team annually. Honestly I probably wouldn’t have gone this year either, with my walk attention and fundraising efforts elsewhere, but the L&B team decided to walk this year in memory of Mabel. I was so touched. They had shirts made- orange for my karate carrot- with her name and a little carrot on the back.

Even though it was an honor to have my daughter the focus of their team efforts, I was still nervous because it was the March of Dimes. My first thought is of all the preemies who make it out of the NICU- the success stories.   The “sung” heroes- the poster children for why giving to the March of Dimes matters. See what your money can do, it saved this baby’s life. My baby was one of the unsung heroes- one who never saw outside the wires and beeping of a NICU room. But she was her own success. We knew she might not (likely not) graduate from the NICU, but we got what we had hoped for. When we were told our baby had a likely life limiting diagnosis, my hopes for her changed. Once hoping she would simply be a high functioning child with Down Syndrome who needed no surgery, the preterm oligohydramnios diagnosis changed my hopes- I hoped that she would survive pregnancy so I could meet her in person; I hoped she wouldn’t suffer; I hoped her case would be clear, so we wouldn’t have to make any extremely difficult decisions; I hoped she wouldn’t die alone. My hopes were met- she lived, which was her own making! Mabel’s NICU team helped with the other hopes- giving her pain medication so she wouldn’t suffer and keeping us informed about her prognosis so we could make those “simple” difficult decisions. The NICU couldn’t save her- her body wasn’t meant for this world with its current technology- but it gave us control, comfort and memories. Though Mabel didn’t survive, she is still a poster child for the NICU- exactly why people should donate to the March of Dimes, so that some day, a baby like Mabel would have a chance.

Did any of you participate in the March of Dimes? Or other walks/fundraisers/awareness events?

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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.

 

 

 

 

 

That same day

“has not had a period since birth of her son on February 15, 2014”

I read the last note I had written on the patient before I went in to see her.  I rarely am so specific in the dating- usually I’d say something along the lines of  “has not had a period since childbirth 5 months ago.”  Clearly the date had struck me.  I wrote it down mindfully, deliberately in the note.  I remember that visit.  I was seeing the patient in the same room actually and thought of how that was also Mabel’s birthday.  At the time all I could think of was how she had a baby to go home to and I did not.

On this day, many months later, a new thought crossed my mind when I re-read my note.  As I stared at her, all I could think of was how she had been on the labor floor at the same time as me.  She was there, down the hall, when I was wheeled from the NICU back to my labor room so that we could call our family in private and tell them our daughter was going to die soon.  As I said “it’s a girl!” in the same breath as “her time with us is short,” picturing the five pound wonder child I had just left on a warmer, tubes criss crossing her slowly bluing face and body, this woman was holding her baby on her chest, shushing those first newborn cries and excitedly cooing over her own little wonder.  Not long later I held my dead daughter as I struggled to keep my eyes open, having been up all night in labor, but not wanting admit I needed sleep for it meant saying good bye to my baby forever.  She probably struggled with fatigue as well, wondering how on earth she would be able to take care of her needy little one when she was just so tired.  I returned to a postpartum room, crawled into the hospital bed with my husband and slept, undisturbed in a quiet room.  She went down the hall, her attempted sleep punctuated by cries telling of a needed diaper change or feeding.  I walked out of the hospital with a box and she was wheeled out with a baby.

I write these words not out of bitterness and jealousy, as I would have many months ago, but out of fascination… that here we both were, face to face, our lives forever changed by the birth of our first children on that same fateful February day, in the same place, but how very very different our lives are now.

 

 

A little gift

 

From the individual who took cupcakes to my care teams on Mabel’s birthday

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“As I walked out of Labor & Birth I heard someone call out to me. It was the girl at the front desk at the NICU where we had dropped off cupcakes earlier. She said one of the nurses wanted to see me. The nurse came out with tears in her eyes and gave me a huge hug. She told me that walking through Mabel’s life and death with her family was one of the most profound, beautiful experiences she has ever had. “It changed me and the way I practice. Please give Meghan and Chris my love and tell them I still think of them and Mabel every time I walk by that space.”

Radio Silence

Well, the day came and went. It’s now 369. In a way no different from day 365 and yet in a way very different. The day was symbolic, of course, and to borrow a term from my pilot brother, I have been radio silent since as I recovered from and sorted through my emotions.

I spent the day doing not too much- sat on the couch, took Muppet to the dog park and did some light cleaning. I took out Mabel’s box- or boxes, the bereavement box we got sent home from the hospital with, the box of pregnancy related things I had kept, the box of cards and what nots I had saved. I got a little teary eyed looking at her outfit- the pair of pants she didn’t even wear because she was too small. They had pockets.  FullSizeRender_2

Her hat still had strands of blond hair in it- which made me smile because the lock they cut for keepsake looks brown. I opened up the tiny blood pressure cuff and held it to my face- I swear I could just catch the scent of her.

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I packed it all back up and organized it the way I want, keeping her bereavement box in our bedroom and putting some of the other stuff away in a closet.

We visited her grave and brought a balloon- Chris unknowingly bought a Hello Kitty one, but we figured she’d like it.  By the time we got to the cemetery, one of the letters fell off and so it read “Happy Birthday abel.”

The evening we had a few friends over- which turned into a few more- and had dinner and cake.

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Singing Happy Birthday to my dead daughter actually didn’t feel so good, but it seemed like the logical thing to do. We watched her video and my friends got teary eyed, while mine remained dry. I realized I don’t like to cry real tears in front of people. I was reminded of how in the immediate days after her death, with family filling the house, I would sneak up to my room to cry unwitnessed.

My tears came the night before, triggered into a meltdown when one of my midwives messaged me about how on the eve of her kids’ birthdays she often thinks about what she had been doing way back when, and how hard it must be for me to do that. The message was sweet and needed, opening up the flood gates. I didn’t have a good cry again until I crawled into bed on Sunday, crying about some of the disappointments from the day- the people I didn’t hear from. Crying about how my life and relationships had changed so much in ways that I felt I so sad about. Crying about how my daughter was dead-how I have a dead child.

I’ve spent the next few days sorting through it all- trying to focus on all the kindnesses, the so many kindnesses that came with the day and not be consumed by the sadness of disappointments (some of which I’ve since decided were justified, some of which were not).

So in that vein, I want to share with you all some of the many Random Acts of Kindness. There are too many to even list, many I don’t even know about and not enough words to thank those who have done them.

  • Donations to children’s museums- in CT, in RI
  • Cupcakes to my care team- the practice I work for, the midwives who cared for me, the MFM docs who cared for me, Labor and Birth, the NICU
  • "we wanted to thank those who so beautifully cared for her and for her family while she was here (the amazing midwives of [the group that cared for her], everyone on Labor & Birth, the NICU staff, the MFMs who were involved and the group Meg works with.) They will be eating birthday Karate Carrot cupcakes."

    “we wanted to thank those who so beautifully cared for her and for her family while she was here (the amazing midwives of [the group that cared for her], everyone on Labor & Birth, the NICU staff, the MFMs who were involved and the group Meg works with.) They will be eating birthday Karate Carrot cupcakes.”

  • Flowers at Mabel’s grave
  • play dough too!

    play dough too!

  • Carrot soup
  • Books that showed up as gifts (including the one on the right that came from unknown sender)
  • did any of you send the Help Thanks Wow book?  it came without a sender...

    did any of you send the Help Thanks Wow book? it came without a sender…

  • Gifts for children’s hospital in Boston and Indianapolis
  • Shoveling neighbors snow in Massachusetts and Connecticut
  • cards! so many cards!
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  • Donation to help migrant workers and their families in Florida
  • Diapers and kids treats donated to a homeless family in North Carolina
  • Donation to a Down Syndrome organization in Virginia
  • A children’s book donated to my town’s library
  • Letting people go ahead in the airport line
  • Buying ice cream for the kids at the next table
  • Dinner buying for a cancer survivor
  • Baking carrot cake for a friend
  • Coffee bought for people in line behind the buyers
  • A big tip left for waitress, a big tip left for a bartender who is fostering a baby with Down Syndrome born addicted to heroin
  • A donation given to a homeless man in a wheelchair
  • A donation to the Perinatal Mental Health task force in LA
  • Water bottles given out to strangers in LA on a very hot day (hard to conceive in chilly new England)
  • A carrot hat given to me
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  • Presents donated to a local shelter including a carrot stuffy
  • Donation to a high school lunar rover team in CT
  • Handmade carrot wreath for my door
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  • Letters from Thai high school students
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Mabel’s First Birthday

One year ago today was the saddest day of my life. The day also brought joy- the birth of my first child, long awaited and very wanted- but that joy was overshadowed in the hours following her birth. I went from utter amazement that I had a baby and despite the odds stacked against her, she cried. She might live, I thought. My excitement lasted minutes, until Chris updated me from the NICU. Her lungs were too small. She would die. As I raced to wrap my mind around this outcome, known as a possibility for months, her condition deteriorated in the hours that lay ahead. The days I thought I had with her melted into just a few hours as the vent and oxygen failed to sustain her tiny body. We took away that pain, removing her from life support, after just six and a half hours of life. The warm solid baby that lay on my chest became heavy and cool, her skin turning from a light pink to a mottled purple, her lips deepening to a dark red. I held her until I could hold her no more and gave her up for the final time.

One year ago today my daughter was born. Today is her birthday. But today is her death day.

In my early days of grief, I envisioned such a different day. I would plan a birthday party- a large, kiddie birthday party, with hats, and cake and balloons. I would invite everyone who I would have had she lived and ask them to bring books to donate to a needy school or library in the area. I would write Mabel’s name in each of the books, so she would live on when others read her name. It would be a celebration of her life. I was inspired reading about another mother’s celebration of her baby taken too soon.

Holding that birthday party is part of that ideal grieving woman I often aspire to be, but feel like I fall so short of.

But I can’t have that birthday part for Mabel. I’m just too sad.

I’m sad that it’s even a decision I have to make- how to celebrate my dead baby’s birthday and death day. I’m sad that my baby died. I’m sad she suffered. I’m sad that I have suffered. I’m sad that I’m not where I thought I’d be in my grief at one year. I’m sad that she’s not here. I’m just so so sad.

No big party today for Mabel. No party hats. No book collection.

Today I plan to hide under the covers. I know I have so many people in my life who are supportive and thoughtful (many of whom have already graciously reached out) and their support is welcome. Today, though, I plan to turn off my phone and hide from social media and just be sad. It’s too overwhelming to be gracious and sad at the same time on this day.

As the day approached and I recognized I wouldn’t be making my dream birthday party happen for her, I made an alternative plan. I couldn’t face an in person celebration, but I wanted her recognized so I invited friends and families to a virtual one. I sent these invites out earlier in the week:

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In memory of our daughter on her first birthday we invite you to join us in doing a Random Act of Kindness.  Enclosed you’ll find a small notecard that you can leave behind, if you choose, when doing your Act of Kindness.

We would love to know what you do in memory of Mabel.  Please feel free to email us or post on social media.

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Feel free to join us in Mabel’ virtual birthday party. Or you could simply learn more about her here:

Happy Birthday, baby. I love you. I miss you. I wish you were here.

Words of Advice from Baby Loss Moms

At the end of my talk to my local midwifery students, I gave them a handout, that speaks volumes.  You may recognizes some words, because they were simply taken from the comments section in response to my question of what would you like midwifery students to know about baby loss.   Feel free to comment if you have more advice to give! Here is the handout:

Words of Advice from Baby Loss Moms

 

“Video clips of ultrasounds meant so much to me and I would have like a recording of my daughter’s heartbeat if they could have given me one. At the time I didn’t know it those would be my only memories of her. I appreciated when my doctors were honest but sensitive.” -mother of Caroline, carried to term after a Trisomy 13diagnosis, who lived for 58 days.

 

“I think they didn’t tell me anything because they had no clue what was going on themselves and wanted to wait until they had more info- but, that choice made things much worse!!!! Talk to the patient, you have to talk them through what’s going on, you have to tell them. Also: if there’s a chance a baby might not make it, you have to prioritize letting the parents see the baby while working out the logistics. I didn’t get to see my kid until after he was gone. I even asked but was told it was too complicated. That’s still absolutely devastating to me, and probably always will be….One other thing: I was given the choice to go to private room on postpartum, or to a different floor. I really appreciated having a choice.” –mother of Sacha who died day after birth from unexpected brain tumor

 

“Perinatal loss can be such an “ambiguous loss”. It was so validating to see everyone reinforce that he really was a real baby (a concept that almost all brand-new mothers struggle to comprehend at the moment of birth).” –mother of Sacha who died day after birth from unexpected brain tumor

 

“Even if the death occurs later, call or write or visit the parents. We so appreciated that one of our midwives and her intern were able to make it to the ceremony we held for Paul. But a call would have been just as meaningful…. If applicable, invite the parents to share a photo of their baby for the baby photo board or book.”mother of Paul who died unexpectedly a few weeks after birth

 

“And for subsequent pregnancy: if you need to discuss the death of the previous baby, give notice in advance so the parents can prepare (especially if you need them to tell their story, or to dig into traumatic events). Also I was offered a viability scan I didn’t “need” but that was really reassuring.” mother of Paul who died unexpectedly a few weeks after birth

 

“With miscarriage (or infant death in general I suppose), even if there is ‘something wrong’ with the baby that you can prove with genetic testing, no one should ever say ‘It’s OK- the baby had a problem anyway.’ I’ve noticed a lot of pregnancy books use this kind of logic, and it’s bad. We don’t throw out people or stop caring about them because they’re sick, so what are we supposed to feel better that our baby that died wasn’t perfect, and that caused his death?” –mother of Serphim, who died of Potter’s Syndrome five hours after birth

 

“Encourage parents to hold, kiss, love, bathe their baby… If you’re uncomfortable handling a dead baby, please ask one of your colleagues to take over. This was our only negative experience with the staff- and it felt awful to have someone reject our precious babies. Remember that these parents need your care, support, love perhaps more than anyone else on the floor.” –mother of A&C, twins who died after PPROM at 20 weeks.

 

I was that woman, sitting in the OB office following my 19 week anatomy scan when the midwife came in with a student and very coldly and matter-of-factly started to explain the slight anomaly found on ultrasound. When I started to cry the midwife offered little support and I could tell she was busy and I think she really believed the finding was nothing major and that I was over-reacting. It was the student who came back into the room alone and sat with me, let me cry, and explained what was going on as best as she could.   So my advice to your students is that there will be days in clinic when you are busy and running behind and stressed, and these are the days when you might have to break bad news to a patient (or several patients), and your pager might be going off, and your receptionist might be reminding you that you have 3 patients in the waiting room, and you will probably have a huge stack of papers on your desk that need to be reviewed… but in that moment, for that patient- your time and presence is what she needs most.” –mother of Clara, carried to term after a Trisomy 18 diagnosis and born still at 36 weeks

 

“It might be tempting to let the parents know that their loss isn’t a big deal compared to what other people go through, but that can be very disturbing to the grieving parents. Don’t tell them it was nature’s way of getting rid of damaged goods. It was their baby. They loved that baby and would have done anything to save it. To you, it was a blighted ovum, or a common Trisomy problem, or ‘barely even a positive’ – but to that family it was precious and beloved. The loss is still very real no matter how unformed the physical person may have been.” –mother to baby lost to miscarriage

 

“Our nurse hung a doorsign of a baby in an incubator on our door so that those entering my postpartum room would know that we had a NICU baby. That was great as it eliminated any too-cheerful questions. However at my six week postpartum checkup, the doctor didn’t know my baby had died.” –mother of Anderson, born at 24 weeks who lived for 26 days

 

“Cyr, take photographs- YES. And remember, you can never tell a loss mom that her baby is too beautifulm too perfect, too special and too unique. She will never hear this as her child grows. Give her a lifetime of school picture Oohing and Aahing in the short time you have with her. Use the baby’s name.” –mother of Anderson, born at 24 weeks who lived for 26 days

 

“I was pregnant with our 2nd baby and had our first u/s at 9 weeks. They couldn’t find a heartbeat. I t was hard and still is. I recall the u/s tech saying ‘oh I just know you’ll be back in 3 months pregnant again!!!” She was just so hopeful. But that’s not what I wanted to hear. I needed to honor THIS baby and THIS loss. So overall, I just wanted the midwife team to honor the present and respect what we are going through at the moment.” –mother of baby lost through miscarriage

 

“To make sure parents have all mementoes of their baby that they would like; to make sure parents know they have no been ‘cast adrift’ from the unit- you become so close to staff whil your baby is being cared for going home is like an estra wrench on tope of the loss of your baby; to make sure parents know how to access counseling. I would also add a couple points about traumatic birth- whether it’s something like PPH or an illness such as preeclampsia and HELLP syndrome- that mums know where to get information about what happened to them and why, and how to access support/forums/debrief about the birth.” –mother of Hugo, born at 24 weeks and lived for 35 days

What more do you have to add?