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.

 

 

 

 

 

Frozen

On a cold night in January I made Chris take me to see a movie in the theater. I was feeling badly- my mood was really low, which was not uncommon. When you’re told that the baby you’re carrying, your first child, a strongly desired baby, will likely die because her kidneys are broken, making low fluid and causing her lungs to be really small, sometimes your mood gets low. In was one of those days and I just couldn’t shake it. Chris asked me what would make me feel better and I told him going to the movies. It was a good idea too even in our hopeful times. Our baby’s death was not a certainty. It was possible she could live and if she did she would be medically complicated needing lots of care. If she survived, a night out at the movies would be impossible, so might as well do it while we could.

“Frozen. I want to see Frozen,” I told him.

“Are you sure?” he asked me. “There are likely going to be lots of kids there.”

I was sure- I wanted a movie that wasn’t real and I’ve always been a fan of kid movies. So after a near miss (the first movie theater we went to had lost power), Chris and I found ourselves walking carefully across an icy parking lot to the theater. He held my arm the elbow as I maneuvered my thirty two week belly around.

“I can’t fall!” I said to Chris almost jokingly. “We’re not monitoring!”

In pregnancy, if you fall, especially in the third trimester, it’s standard to be seen in the hospital for some monitoring of the baby afterwards- to make sure there are no contractions or signs of a placental abruption. We had had to make some difficult decisions regarding monitoring of our baby. With no fluid, there was a great risk for stillbirth. The baby’s heart rate could be monitored for signs of distress, but it’s an inexact science and most stillbirths in these circumstances happen practically in an instant. We had the option of being admitted from the diagnosis at 27 weeks and monitored 24/7 or we could do weekly (or any other chosen interval) monitoring or we could do no monitoring. Choosing monitoring meant we were willing to have an emergent c-section- potentially affecting my future fertility- and allowing our baby to be born prematurely. We made a highly researched and educated decision (met with many specialists) that our baby had the best chance of life if she was born after 34 weeks. We chose no monitoring until then, recognizing if she had distress before then we would lose her. Upon admission we would take no chances and I would be admitted for 24/7 monitoring. So at 32 weeks, if I fell, I would have to decide whether I’d want to break that plan and be monitored, risking early delivery if there was distress. On the flip side, if there was distress, we wouldn’t know about it and my baby could die inside me.

“No falling!” Chris assured me as he gripped my arm tighter. The ground glistened with black ice. We slipped and slided with several close calls but made it safely into the theater. I watched Frozen and was delighted.

When Mabel died, my family came for her services. I found a little joy in the innocence that was my niece. At 3 years old, she was rightly obsessed with Frozen. She would sing, somewhat unintelligibly and very much off key, the words to “Let it go” and dance around the living room. She built her very first snowman (a big deal for a kid who has only grown up in southern California) and named it “Snowloff.” In the weeks that followed, long after my little niece left, I found myself saving “Let it go” to my playlist. I’d sing along to the lyrics in my somewhat unintelligible and very much off key voice:

“Don’t let them in, don’t let them see

Be the good girl you always have to be

Conceal, don’t feel, don’t let them know!”

A perfect anthem for my grief.

This week I went clothes shopping. A secondary gain since my daughter died (I hate that term- is there a better one? An unintended benefit?) is that I’ve lost some weight. Extra time on my hands and needing an outlet for my anger and grief has brought me down below my pre-pregnancy weight. I know I am fortunate that this happened this time- in the past I’ve been a very emotional eater and gained when I was down. Now I’ve found that I don’t fit into my clothes. So I finally put the hopes of a future pregnancy aside and decided to invest into some clothes that fit. I needed to look somewhat professional in pants that weren’t super baggy. A quick trip to Kohl’s and I found some duds that fit the bill. As I was headed to the check out, a sweater caught my eye. I had wandered past the juniors department and just kept staring at this one sweater. I went up a size, figuring the juniors sizes would be ridiculously small and tried it on in front of the mirror. I was smitten.

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I like warm hugs

Chris rolled his eyes when I showed it to him at home. He said “o-kaa-ay” in that two tone mild sarcasm when I put it on to wear it out to the movies (now with no baby, we have the freedom to do so whenever we want). But I told him in the car how when I wear this sweater I think of Mabel- pregnant with her skating across the theater parking lot, my niece singing it before we went to Mabel’s wake and the lyrics of it’s main song that was the anthem to my grief. He held my hand proudly in the theater afterwards.

Mabel has her carrots, but she also has Frozen. I know I’m not alone in these comforts- there are Hugo’s stars and Gideon blue.

Do you have something you wear that makes you think of your baby?  

Dear Bootcamp Instructor

Dear Bootcamp instructor,

I was never a fan of group exercise.  I was happy running when I wanted, for how long I wanted.  But as pregnancy shaped my body and complications with my baby arose, I found I couldn’t run for both physical and emotional reasons.  With a broken elliptical at home and no gym membership, I was uncentered and anxious without my exercise routine.  I finally caved in to a friend’s entreaties to join her at “bootcamp.”  My first class, I arrived early and sat in a near panic attack as all the women in the 6pm class performed different exercises in near seamless coordination.  Everyone looked so good!  I was overwhelmed.  Then the warm up nearly did me in.  I left feeling on the fence about whether this bootcamp was for me.  I tried again at an early morning Wednesday class and left still feeling undecided.  I had an ultrasound later that day with my doctor (a fellow bootcamp-er) and I remember telling her I was like 50/50 on whether I liked it or not.  I gave it one last shot on a Friday morning class that you were teaching.  When I left, I began thinking, I could like this.  In the car on the way to dinner later that night I was telling my husband about my day and told him about the good class I went to with the friendly instructor.  And then there you were at the restaurant- smiling and remembering my name!  Like I told you the other day, that’s what sold me.

Over the next three weeks, the exercise saved my sanity.  I learned to love jam ball slams for the anger I could release about my baby’s health.  When I was admitted to the hospital, the doctors (my colleagues) all had a good laugh at rounds about how their admission for the day (me) would be late because she wanted to go to bootcamp.

I tried to continue the pace in the hospital, taking time each day to do a mini-bootcamp while tethered to the fetal monitor.  You’d be surprised what one can do in a small hospital room attached to a six-foot wire.  My husband even got me a medicine ball for my birthday, which I celebrated in the hospital.  I yearned to do some jam ball slams, but my midwife and doctor (also fellow bootcamp-ers) didn’t think it would be a good experience for the patient in the room below me.  My doctor thought I was a great research project in itself, showing that a baby with no fluid did just fine through vigorous exercise.  How cool it was to watch her heart rate never falter while I did ball taps and squats.  Your class was even on my mind in labor as I told my midwife between contractions, “this is harder than bootcamp!”

My midwife let me return to bootcamp at 2 ½ weeks postpartum, under her supervision.  My daughter was buried, my family had all left and my husband was back at work- I was alone and terrified of my grief.  In the initial days, I wouldn’t get out of bed, barely eating.  Going to bootcamp gave me a reason to get out of bed, brush my hair and eat breakfast.

Upon returning to my first class, I sat in the car crying until the last possible moment.  I was scared of the memories- being somewhere that I only knew in pregnancy, seeing people who might ask about my baby, unaware that she had died in my arms.  I made it in that day, as you know, and many days that followed.  That first day wasn’t the only day that saw tears.  The nice thing about bootcamp is I can’t make it through a class without a red face dripping with sweat- a nice camoflauge for the emotion that would spill out without warning. 

Bootcamp allowed me to step out of myself for a bit.  I took a momentary vacation from my sadness everytime I thought “only ten more seconds of climbers,” and sometimes I dove deeper into my grief, using my anger to push me further.

As you may have noticed, I come pretty much exclusively to your classes.  I found myself going almost exclusively to your classes, looking forward to the bubbliness and kindness you showed.  You didn’t treat me weird- you didn’t ignore the fact that I was back, no longer pregnant but childless, nor did you treat me like I had some sort of leprosy.  I was comfortable.  I was coming to your mid-morning classes (one that I dubbed the “mommy class” because of all the kid chatter that happens before warm up) and I could come alone- without the crutch of my friends from the earlier classes- because I knew you.  You knew my name from day one.

I often think that the person you see at bootcamp is not the “real” me, though I’m not so sure anymore.  There I know I am quiet and keep to myself. Other bootcamp-ers might even find me unfriendly, as I learn how to smile and make small talk again.  I might not show how much I enjoy being there and how much my body and mind need to be there.  This new timidity and shyness is a function of the “after.”  In my other life, the one “before” I carried a baby I knew might die, “before” I had to take my daughter off life support, “before” my world came to a halt, I was outgoing and friendly and would have told you all this in person.  I suppose that is why I am writing this.  All the times I have referred to “bootcamp” in writing this, I‘ve really been thinking of YOUR bootcamp.  I feel like I’m in AA, going back, making amends, thanking all those who have helped me on my journey.  I was procrastinating writing this because my journey is far from over, but a friend encouraged me to do it.

So in case I haven’t been vary clear… Thank you.  Thank you for your cheer, your motivation, for knowing my name, learning my story and welcoming me.  Thank you for giving me a temporary reprieve from and insight into my sorrow at the same time.  Thank you for making your class a warm place, full of exertion and encouragement.  You’ve helped me enormously.  You are an excellent trainer and wonderful person.

Thank you.

 

The first twenty-four

I’ve survived my first twenty-four hours in the hospital.  Great news!  Baby has behaved quite well.  I’m strapped into fetal monitoring bands pretty much twenty-four-seven.  I unhook myself to shower, grab some water, go for a quick walk.  I can take a longer break if I want, though I recognize that I am here for a purpose- monitor the baby.  The longer I’m off, there is technically more of a chance we could miss something (the whole reason I’m here).  So I’m tending to follow the rules.

We haven’t had any monitoring since 27 weeks and so it was hard for me to imagine what the baby would do.  If you put any pregnant woman on these monitors all day long, it’s quite common to see small dips in the baby’s heart rate and when that happens, as long as its not frequent or severe, baby is fine.   The dips usually resolve and baby goes on his/her merry way.  With no fluid, we would expect those dips to be more common.  They often happen when the baby squishes the umbilical cord with some movement or position change.  Most babies have lots of fluid to cushion and prevent compression of the cord.  My baby of course does not have that cushion.  But the first full day has gone well! No dips (at least that I’ve seen) and no one has come rushing into my room in response to the baby’s heart rate- all good signs.  I figured this weekend would be quite telling- either completely boring because baby has no dips or very exciting with nurses and doctors rushing in to help fix the heart rate.  I was hoping for boring and so far so good.

Though, since things are going so well, I almost feel a little guilty being here.  Baby is so good and I’m healthy, which of course makes me wonder if clinically we’ve done the right thing?  Should I be home, more active, preparing? Should I be working?  Should I not be worrying about it?

However, the truth is we would not have know how good this baby is until we did this- monitor monitor monitor.  And this great heart rate can change in an instance. If the baby’s heart rate drops and won’t come up despite all our tricks, best thing to do is deliver the baby- which here they can do in essentially minutes.

And frankly, some people might advise to deliver the baby just in case as 34 weeks- to prevent even the risk of that distress and emergent delivery.  We (those of us in obstetrics) often deliver people at 34 weeks for low fluid- but that ‘s usually for other reasons.  Most oligohydramnios is because either the water is broken or the placenta isn’t working.  When the water is broken, we wait until 34 weeks, then deliver because at that point the risk of infection is higher than the risk of prematurity.  With poor placental function, the risk of stillbirth is higher than the risk of prematurity.  So it makes sense in the common cases to deliver at 34 weeks.  My water’s not broken and my placenta is functioning fine.  And the risks of prematurity on my baby’s specific case is very high in our mind.  So we want those extra weeks, if baby can tolerate them, to grow the lungs and grow the kidneys.   But we also feel that if the baby had to be delivered due to distress,  at this point s/he has a reasonable chance of…. Surviving?…. of breathing?….. of doing something.

So really, it just feels weird to me to be so healthy myself, but in the hospital.  Something to really wrap my head around.  This is what we do for our children, right?  I rarely need vital signs. I need no IV.  I’m just here to grow the baby.  It’s all about the baby.  Brings me back to my post-CVS mantra- Stay Baby Stay.

Now that I have no agenda, I feel so much movement.  It’s true- being busy at work, I couldn’t tell if the baby was moving or not, so in the few minutes I might have to sit and be present with the baby, there might be nothing.  Which would of course get my anxiety going- has the baby died?  And I’d just have to wait.  Here, I know my baby is fine.  That burden of that anxiety has lifted.  Now I have my new challenges: adjust to hospital life, tethered within a few feet of a monitor; adjust to an open ended schedule (very un-like me.  I’m busy- it’s what I do best); adjust to sedentary life (with some yoga and hand weights exceptions); adjust to the idea of a baby that I will meet soon, in whatever health state s/he may be in.

I can’t believe I have something I can finally plan and hope for- I think I’m going to have a live baby.

Hello, hospital!

My world has changed.  I have waited, patiently, anxiously, for today to come.

 

Today I was admitted to the hospital.  It was a planned admission at 34 weeks, no rushing or scrambling. Yesterday one of the nurses at the high risk office called to tell me they would be saving a bed for me- and a nice big one at that, I realized when she told me the room number.  It was empty, meaning I didn’t have to wait for someone to be discharged, so I could basically go in at anytime.  I chose 11am.  Enough time to do something beforehand but not delaying too much.  Frankly, I wanted to go to one last bootcamp before my admission.  Bootcamp has really helped clear my head a bit and get really good exercise in my final trimester, something that has been a struggle to find.  And I knew I’d be limited in my activity while “in house” (medical speak for being in the hospital).

 

I was on the waitlist for the 830 class and luckily had a confirmed spot in the morning! So I got one last good sweat in and apparently got a good chuckle among the docs in the hospital during rounds.  The high risk nurse who booked my room had passed on how I had said I’d be in at 11 so I could try to go to bootcamp.  Glad I could entertain.

 

I was emotional just before going in- had a quick cry in the shower- but also eager to get there.  I just wanted to get settled and adjust to my new reality.

 

Going in to the hospital means my baby could be born any minute. It’ll likely be alive.  I know I’ve had many months to adjust to being pregnant, but I am still so far from really understanding what my new reality will be.

 

My journey has been a constant readjustment to new realities- some typical of any first timer, some unique.  In the beginning, I had the happy joy of adjusting to the positive pregnancy test.  That was easy and lasted a couple weeks.  Then I thought I was having a miscarriage and adjusted to the new timeline I would face before becoming a mom.  When we found a heartbeat a week later I got some of that initial joy back but had a lingering anxiety about miscarriage, which lasted the first trimester and I thought would resolve once I hit thirteen weeks.  The diagnosis of Down Syndrome came then.  I spent a long time working out how to just be pregnant and try not to worry about the associated problems (cardiac defects, bowel problems, risk for second trimester miscarriage and stillbirth) and how to envision my new life with a child with Down Syndrome.  And I did it.  I really did- I had a couple months where I was more pregnant than worried.  I was happy and proud to show off my growing belly.  I was happy to confirm with strangers, that yes I am pregnant, it’s my first, we don’t know gender and I’m due in march.  I felt only small pangs of anxiety, at times knowing I wasn’t letting myself have the full “world, look at me! I’m pregnant for the first time,” experience because I felt like I wasn’t telling the whole truth.  But excitement was my primary feeling.

 

The oligohydramnios changed everything.  I was then thrown into a world of- will my baby live or will s/he die?  We were given lots of depressing diagnoses and had hard decisions to make.  I felt like the substance of my pregnancy had been taken away.  Before I was planning for a baby- yes a baby with Down Syndrome, that may have some undiagnosed medical problems, but it was a baby.  Something concrete to plan for.  I could picture therapy appointments and changing diapers.  The risk of stillbirth was always in the back of my mind, but I was learning to deal with it.  The oligohydramnios and all that came with it took away that concreteness.  I really might have a stillbirth.  I may not have a baby that comes home.  And if there might not be a baby to take home, was I really pregnant?  Physically I was- there wasn’t much denying that.  But emotionally I haven’t been very pregnant.  It manifests in different ways.  Avoiding buying baby things.  Changing the conversation when people ask about my pregnancy.  Not envisioning a baby in my house.

 

So now I’m here, in the hospital, with at least one possibility removed.  I’ve spent many months fearing stillbirth, and now that I’m on continuous monitoring, that scenario is very unlikely.  Welcome to my new reality.  A baby is going to come out of me.  I have to get my head around that.  I might labor, I might have surgery.  It’s a tiny bit more concrete.  But since I haven’t really had the chance to absorb the reality that I am actually pregnant, I’m certainly not ready to give it up.  As much as I’m learning how hard it will be to be tethered to these monitors, I want to stay pregnant as long as I can.  I can see on the monitor that the baby is fine.  I want to cook and grow and nourish him/her as long as I can.  It’s got to be pretty warm and cozy inside my womb and I want to delay introducing my baby to the cold air and wires and ventilators.
The high risk doctor admitting me asked at the end of his visit, “is there anything we can do for you?”

 

Yes.  Keep me pregnant.

 

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