I’m not ready

I’m not ready.

 

I have been working so very hard about not thinking too far ahead into the future.  I still try not to think too much about the “whatifs” regarding after the baby is born.  Working so hard, that I am neglecting some preparations.

 

I had my last outpatient ultrasound today.  We were going to measure growth- which made me nervous.  Growth, or lack thereof, is one thing that could derail our plan.  If baby’s not growing, time to deliver. Induction starts and a long inpatient stay is avoided.  I want ready for delivery.  I don’t think baby is ready, and I am certainly not ready mentally.

 

When they measure growth, the sonographer takes measurements of the baby’s head circumference, abdominal circumference and certain leg and arm bones.  As she does them, a little figure pops up on the bottom of the screen. The figure says how many weeks the head or bone or belly is measuring.  I’m 33 weeks and 5 days.  The measurements I could see were seeming to be closer to 29-31 weeks.  Normally I wouldn’t think much of it because clinically I know that third trimester ultrasound can be off by 3 weeks or so.  But I was watching two weeks ago as they took the same measurements and the numbers didn’t seem to change much.  As we waited for the doctor I told Chris “I don’t think the baby grew.”  But after all the calculations, the baby had growth 300gm in the two weeks (we needed a minimum of 200gm to feel good about growth- and keep me pregnant.)  Four pounds even was what my little karate carrot weighed in at today.  27%.  Good movement. No fluid. Small bladder. Barely visible kidneys (though that’s also a function of the low fluid-harder to see organs in general).  I get to stay pregnant!  I got a dose of rescue steroid to help with the baby’s lungs in the event of delivery in the next two weeks (a shot in the butt! the first butt shot I’ve had as an adult, or as far back as I can remember). I return tomorrow for the final steroid dose.  Friday I have my last prenatal appointment with my midwife. I am making some concrete moves to prepare.  Though in those minutes between sonographer and doctor, as I waited to see if I’d have to deliver now or not, I realized just how unready I am for the birth of my baby.

 

I go to the hospital in 3 days and I have done no preparation.

 

I feel like I have little documentation of this pregnancy. I know of three photos of me where I am visibly pregnant.  I did not envision doing the weekly “here’s my baby bump” series, but I did think I’d want photos of me pregnant to show my children when they got old enough.  And even now, I feel like it would be proof- proof that the whole thing happened.  In case I have no baby to bring home, I want to be able one day to point at a photo and “see, look, I was pregnant once.”  Now I have three days to make that history.  Maybe some hospital pictures would be in order.

 

Packing.  I made a hospital bag a few weeks ago- a small one with just the necessities, that I bring with me to appointments- in case they send me right over to the hospital, like they did at 27 weeks.   But I haven’t packed a long-term bag.  I haven’t even made a list (and I am a list maker).

 

And I think I ‘m in denial that I’ll actually have to labor.  It’s not that I’m planning on a c-section (though I certainly know it’s an option if there is significant distress); it’s more that I haven’t gotten to the stage that I honestly believe the baby will come out of me.  We did a childbirth education class (yes, even midwives do childbirth prep- so no excuses for patients who don’t think they need it!).  I have started a playlist for labor songs.  I have a tennis ball for back pain and heating packs for everywhere else pain.  But labor still seems so theoretical to me.

 

I was at the chiropractor today and she knows all the basics of my situation- she’s all business when she asks about it, but in a good way.  She asked if I’m ready to go into the hospital.  She also asked if I was ready at home.  I told her no, not at all.  I haven’t been planning to take a baby home.  If this baby joins us in the world living and breathing, s/he will be having a nice long stay in the hospital.  I figure we can do the shopping then.  If it looks like the baby is working towards discharge, then we can buy a crib.  Then we can build a baby wardrobe of especially girly or boy-y clothes.  Then we can share the baby registry Chris and I had been working on before the oligohydramnios.  Then we buy whatever medical supplies our baby needs.  I realize I might need a few things in the interim, but that’s what family and friends (and amazon prime) are for.   Breastmilk storage bags and bottles for the nourishment I can save for my baby when s/he can eat.  Nursing bra. Baby outfits for photos.  A little baby hat.  A lovey.

 

I need to buy a baby outfit.  Something classic, simple, natural.  We will consider it a coming home outfit.  Though really, I feel like I need it in case we bury the baby.  Another form on coming home.  If that’s the case, I want the outfit to be something special- something I’ve picked out with love.  And I can’t imagine that I’ll want to be shopping for an outfit if I’m actually planning a funeral.  So this I want to do ahead of time, but I just can’t seem to bring myself to do it yet.  I’ll put it on the to-do list.

 

I need to make a to-do list.  Something to refer to when I hit boredom in the hospital.  Or if I’m feeling particularly anxious, something I look at to find something to distract me.

 

As I begin my preparations to go into the hospital, I am constantly struggling with both relief and fear.  I am excited, in some ways, to give up the burden of anxiety and let others watch my baby like a hawk.  But I am terrified of what’s going to happen.  There is still a lot of unknown.  If I only knew, for sure, I would be there for three solid weeks, I could work hard on adjusting to the “after” birth during that time.  Maybe begin to realize that I will labor.  But I could go in on Saturday and be delivered that day, depending what the baby shows on the monitor.  I could end up with a very quick c-section, skipping a long labor that might in many ways be therapeutic to experience.  I’m terrified of the emotions I’m going to feel, the further uncertainty I will face with a sick child.  Will I bring the baby home?  Will I be caring for my baby full time?  Have I just had my last days as a midwife?

 

For now, I am going to plan on a nice extended stay.  My baby has been a mover and gets a good BPP (Biophysical Profile- an ultrasound test for fetal well being- looks at certain baby movements and fluid) score- 6 out of 8, the best a baby can get with no fluid, so I’ll consider that an A.  My baby has been getting straight A’s, like his/her mamma, since 27 weeks. This makes me believe my baby will behave on the monitor.  I plan on laboring and pushing out my baby.  I am tall, confident in my ability to push out a big baby, so a small one should be a piece of cake, right? My midwives will be patient with my baby to allow me every chance at a vaginal birth if it’s safe for us.  I am planning on a live baby.  I think I’ll meet our little carrot and hear a cry.  Maybe even have a tiny moment of skin to skin as the cut the cord?  I plan a team of pediatrician helping my baby breath and see what s/he can do on his/her own.  Beyond that, I have no plans.

Choice

Disclaimer: this post is a little political.  It may rub you the wrong way or you may holler support my way.  Regardless of which way it is, I hope we can still be friends.

 

I am pro-choice.  You don’t hear that a lot in my world.  My new world, at least.  In the Down Syndrome community, there is much talk about how awful it is that so many of those pregnancies diagnosed with Down Syndrome are terminated.  And I AGREE.  It is awful.  Down Syndrome can be such a livable, enjoyable diagnosis for families.  Not once did I ever imagine I would find myself preparing to raise a child with Down Syndrome, but it is what life has handed to me and I accept.  I have made choices in life (like purposefully trying to start a family) and I accept the consequences- trisomies, failing kidneys and all.  I am lucky in that I have the resources and knowledge to make those choices.  There are many women out there whose circumstances are truly unknowable to me and so I believe I can not judge.

 

I am pro-choice, but I am also pro-life.  I chose life for my baby.  And I appreciate that about my world.  I had the choice and I chose love and acceptance, blindly- because I could not have imagined what that choice would mean these months down the road.

 

I saw a patient today who was 14 weeks pregnant.  She had had an abnormal first trimester screening- based on an ultrasound and bloodwork, she was given a 1:170 chance of having a baby with Down Syndrome.     Anything higher than 1:200 is considered “abnormal” or “high risk.”  She opted for cell free DNA testing (the latest blood test that is highly accurate), which confirmed her baby had “normal” chromosomes.  She chatted on about how awful it was to go through that and thank god everything came out ok.  I wanted to ask her- what if it didn’t?  What would you have done?  Would it have been so awful?  Now I know I have had my struggles adjusting- as almost all parents who first learn of the diagnosis do.  It’s not fair of me to place this judgement- she didn’t know my situation and she didn’t face a similar one herself.  We often don’t know what our choices would be until we are forced to make them.

 

I had always thought (and even voiced) that politically I held one view and personally I held another view regarding termination.  I am proud that when forced to choose, I lived up to my beliefs.  I went with one patient and literally held her hand during a termination of a potentially healthy baby, while I, visibly pregnant, had made the choice to carry and care for one not so healthy.  There are many reasons people choose termination and my hope is that we can one day help remedy those circumstances (education, access to healthcare, finances, etc) that make it difficult to choose life.  I hope that we always have the choice but I hope that in the future, the choice is easy.

 

Sometimes I forget my child has Down Syndrome.   And I only really remember when thinking about any undiagnosed health conditions that may be present after birth, complicating our baby’s already complex life.  My first thoughts about Down Syndrome used to be a characteristic look and intellectual impairment.  And I think that’s typical of most people.  Those first thoughts often guide people in their decisions about terminating a pregnancy.  I now see how small those characteristics are in the big picture.  Now I think, health problems.  There is no perfect baby out there.  Some “imperfections” are just more knowable in advance.  I hope that over time, we (including me) all become more accepting of different “imperfections” so that choosing to continue a pregnancy based on Down Syndrome alone is easy.

 

All this, before I have even met my baby.

I got mad at the baby

I got mad at the baby yesterday.

 

Chris and I spent the weekend in Vermont.  Our friend has a family ski condo where we stayed.  The weekend was centered around “Romp to Stomp,” a snowshoe race/walk that benefits breast cancer.  Originally I was going to be on call this weekend, so Chris was to go up with our couple friends and I’d miss it.  But since work has been kind enough to keep me off call, I can use the time in ways that help prepare for our road ahead.  It was a nice quiet weekend away.  The three of them did the race- waddling off quite quickly in a small pack of racers.   I did the walk, the same 3k trail, but starting 30 minutes after them at a slower pace, surrounded by other participants in pink tutus and bandanas as a salute to the tatas. I had no pink, but I do think I was by far the most pregnant woman walking.

 

The walk felt similar to running- it was definitely a good work out.  I was huffin’ it pretty good. Lots of up hill and then down hill.  From the get-go I could feel my pubic bone getting angry.  There’s a joint in that bone that gets loose for some people in pregnancy- a response to the body’s hormones and the pressure of a growing baby.  But that looseness can cause pain, especially with certain activities- its called symphaseal pubic dysfunction.  It was pretty uncomfortable but I powered on- all the while telling myself:  “Labor is uncomfortable too. This is practice.”   I enjoyed it, but afterwards I suffered a bit all day.

 

When we came home, we all were pretty spent.  We pretty much conked out and napped for a few hours.  When I woke up I lay there waiting for baby to move.  I had been too preoccupied to really notice movement all day, so I wanted to take some quality time to check in.  After twenty minutes or so of not feeling anything, despite some poking and prodding, I got out of bed and ate some chocolate and started drinking water.  An hour passed by and I still wasn’t sure I was feeling movement.  I started freaking out.  Had I been home, I think I would have called my midwives.  I told Chris how nervous I was and he tried to reassure me. He’s so calm.  But when I get worked up, it can be hard to talk me down.  I knew if I waited until like 8 or 10pm, I might feel more, because that’s when the baby is most active.   But all I could think about was that I wasn’t ready to lose the baby.  We had a plan.  I need more time. I want to meet the baby.

 

And then the baby moved.

 

The relief was huge.  The closer we get to our hospital admission, the more burden I feel to make sure the baby is moving.  The more worried I get that we wont make it to the admission.

 

And then I got mad at the baby.

 

I had wanted the baby to move so bad.  I needed the baby to move.  But the baby wouldn’t until s/he was ready.  Apparently this is an early parenting lesson.  We have no control over our children.  Once baby was done with a nap, s/he got going.

 

It happened again today.  I just get so scared so easily.  Baby is allowed to sleep, but I wish I could just communicate with him/her and say “Move! Just a little so I know you’re there!”  I need to know the baby is ok.

 

Five more days until I check into the hospital and the burden is no longer mine.  I’ll let the nurses and the monitors let me know baby is fine.  It’ll be reassuring for me that other people are ensuring that my body is doing what it can to nuture this baby.  I know i’ll be trading this worry for another, but the closer I get the more wiling I am to trade.  Five more days.

 

***********

I wanted to take a minute and say thank you to the many people who email/call/text/comment/facebook.  And those who just read.  I have been terrible at responding, but please know that I read each of your comments and notes and appreciate them so so much.

 

 

And lastly, an old friend was diagnosed with lung cancer within the past year.  I’ve known him since college and he was in med school while I was in nursing school at the same university.  His was the first familiar (and friendly) face I saw when I arrive my first day.  He was recently published in the New York Times regarding his scary diagnosis in the setting of little data about lung cancer in someone young like himself.  And he’s in medicine- knowing so much (too much?) about it all.  I have ridden my rollercoaster regarding my baby’s diagnosis.  I can not imagine riding that rollercoaster regarding myself.  An excellent read.

 

http://www.nytimes.com/2014/01/25/opinion/sunday/how-long-have-i-got-left.html?_r=0

Donut Days

I woke up today feeling meh.  I just felt down; which I know is a reasonable thing to feel.  When we got the diagnosis of olighydramnios, I used to cry every day.  Going back to work was a good distraction so I’d have some days I wouldn’t cry.  Lately I go through most days coasting more or less- I have more days without tears than days with tears.  Work plays a big part because it’s forced me to pretend and numb myself up, which I think carries over to life outside of work.  But I still have my down days.

 

I still was able to get out of bed, pull myself together and head to 6:30am bootcamp.  I know myself and I need exercise.  It helps distract and clears my mind.  I also feel like a guilty blob when I don’t. So getting there wasn’t hard.  Working out wasn’t hard (or actually it was very hard physically, but mentally no problem).  And then I rushed off for a quick shower at my cousin’s before heading to work.  That’s when the meh feelings started to catch up.  I didn’t want to go to work.  I didn’t want to pretend. I didn’t want the stress that comes with working.  So I stopped and got me a donut.  Boston Cream.  I feel like I get more bang for my buck- the donut plus the ooey gooey goodness inside.  Plus there’s got to be some sort of dairy in that cream, which means I get calcium (if my midwife is reading, maybe she’ll agree?).  When I’m feeling down, I eat my feelings. I’m definitely not one of those people who lose their appetite (or weight) when they are depressed.  I personally would prefer the taste of chocolate in my mouth all the time, when I’m down.  It helps.

 

So on days where I’m feeling down, I eat a lot more chocolate, which often includes a donut.  Hence the new name- donut day.  I need a name for them because in general I am down anytime I think about my situation.  But some days- donut days- are the worse days.

 

I had an ultrasound today.  My midwife and I debated about going- we both knew that it wouldn’t necessarily tell me much new, wouldn’t change anything really.  It’s the midwife model to think about each intervention (like an ultrasound) and wonder how would this change my management.  Today’s ultrasound really wouldn’t, I don’t think.  But I shoved the midwife in me aside and went anyways.  Part of me just wanted a break from work.  Part of me wanted to see my baby again.  Part of me might just thinks maybe they’ll see more fluid.  Maybe they’ll tell me some good news.  Plus the doctor I was scheduled with, made me realize last time I saw him that I needed a more concrete plan.  So I was curious about his thoughts at this point.

 

Today we saw the doc with lots of experience- the one who gave us a little hope earlier saying the lungs don’t “look hypoplastic.”  Fluid today was undetectable.  Every other week we seem to find a little pocket so I get the label of oligohydramnios.  On weeks like this I have the label of anhydramnios.  Two different labels, but in my case no real difference.  Oligohydramnios is a spectrum and has different cutoffs depending on gestational age.  My oligohydramnios is considered severe and persistent.  Mild or borderline ologihydramnios would have different consequences.

 

So today I have anhydramnios. This to me is neither good news nor bad news- it’s all the same.  But they did see a small bladder!  Apparently they saw one last week, but I didn’t know that.  I almost cried tears of happiness. A small bladder means some urine is going through the kidneys.  It just raises my hopes that there might be some kidney function.  Nothing spectacular, but some cells must be working in there.  This is good news.  I asked the doctor his thoughts on the chest cavity.  When lungs “look hypoplastic” the heart just fills the rib cage.  In a normal chest cavity, the heart fills about 1/3 of the chest cavity.  He measured our baby’s heart vs chest and it fills about ½ the chest.  This is no surprise- it’s not a diagnosis of pulmonary hypoplasia, but it certainly raises suspicion for it.  This is not new news.  So in theory it’s neither good nor bad- we have been anticipating some degree of it since the fluid was low.

 

I left the ultrasound a little disappointed.  I guess there’s some good news regarding the bladder.  But what’s the use of kidneys if the lungs don’t work?  I suppose this will help me come to terms even more with the thought of my baby on a ventilator- whether it works or not.  But the disappointment made me realize that I actually do have a little bit of hope.  I often feel like I don’t- I feel like I write as if I don’t.  But instinctively I must have some hope somewhere in me in order to even experience disappointment.

 

I go to the hospital in a week.  It’s getting more real.  Earlier the idea of getting to 34 weeks was exciting.  And I’m a little excited to relinquish the burden- someone else will be looking after the baby and making the decisions.   I don’t have to worry so much about fetal movement because the monitor will be telling us what’s happening. But as 34 weeks approaches, I’m beginning to realize that there is an end to this.  This baby will be born.  I will no longer be pregnant.  There is no more hope or fear- just reality.  The baby will breathe or not breathe.   The baby kidneys will work or not work.  The unknown may be tortuous, but there is some comfort in it as well.  The unknown can sometimes be better than a known sadness.  So for now I am going to try to figure out how to “enjoy” this time of uncertainty.

How do I bond with this baby?

How do I bond with this baby?  I’ve talked about how I want others to see this baby as a real person and maybe part of that is so I can feel like this baby is real.  I’ve felt a lot of movement in the past few days and movement is something I am so very thankful for.  Mostly because I know the baby is alive and nothing has changed.  It helps a little to think the baby is interacting with me and my body too. But it’s still so unreal.  It was unreal when I discovered I was pregnant.  At that time, I felt pretty much ok and certainly didn’t look pregnant.  It was unreal when we found out the baby has Down Syndrome.  I hadn’t even adjusted to the pregnancy yet and then I had another hurdle to adjust to.  It got a little more real when we went to the CT Congress on Downs Syndrome’s conference- meeting parents with children with Down Syndrome.  But now this.  I need another conference full of people who’s babies kidneys weren’t working and had lung issues. AND have Down Syndrome.  I just don’t know what life will be like if the baby lives.  I have no role models, no scenarios, no nothing.

 

I can’t picture what my baby will look like.  I used to have trouble just trying to morph Chris’s and my baby pictures in my head to come up with some vision of our baby.  Adding features of Down Syndrome made it more difficult to imagine the face of our baby.  And now with the low fluid, the baby may have Potter’s syndrome too- with no swimming pool to stretch out in, the baby’s limbs could be contracted and some of the facial features smooshed. Plus the baby has clubbed feet.  I worry that my baby will look funny.  I know it will be my baby, but I just can’t picture him/her.

 

I think about if we have to have a funeral- I don’t know if I’d display a photo- especially if it were a stillbirth- mostly because people are uncomfortable with seeing a photo of a dead baby.  I would keep those photos for me to remember and reflect.  So my next thought would be to display a picture of the baby’s feet, because that’s a sweet, classic, usually “safe” image.  But my baby’s feet might be rotated and contracted.  It makes me so sad that there might not be photos of my baby that people would want to see.

 

So how do I bond with this baby?  I know that this may be a typical first time mom experience.  It’s hard to envision yourself as a mother until you’ve been one, right?  But the act of breastfeeding, changing diapers, holding your baby are all things that help first time moms really get adjusted to the idea that they are really mothers.  I might not get that.  I know people will say I’m still a mom even if my baby doesn’t survive.  But how will I feel like a mom?  If my baby is in the neonatal ICU, I don’t get to do those initial mom things.  I don’t even get the first step- holding my baby skin to skin.

 

How do I bond with this baby?

 

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On another note, I came across this on one of my Down Syndrome message boards.  I can’t explain the part of my brain and heart that this touched.  I read this as not just as someone who is pregnant, but who faces pregnant women every day.

http://liferearranged.com/2014/01/why-it-matters-when-we-rub-our-bellies-and-say-so-long-as-its-healthy/

My response when people ask if its a boy or a girl. “I don’t know.  But I’m pretty sure its a baby.”  It’s a baby.

Who needs a baby shower?

This past weekend was supposed to be my baby shower.  It was going to be a really cool baby shower- a bit non-traditional.  It would be an evening shower at a local vintage clothing shop, with dress up games.  Unique.  Fun.  Totally me.

 

When we were first diagnosed with ologohydramnios, I had Chris put away all the baby stuff (what a sweet man).  I told my sister and my cousin not to send out invites for the shower.  Then two weeks later, after one ultrasound where the doctor said the lungs “didn’t look hypoplastic,” I started feeling a little more optimistic.  There was a moment or two that I thought maybe I could still have a shower?  Maybe?

 

After all our research and plan-making, it became clear to me that I didn’t think a baby shower was a good idea.  I can’t even look at baby stuff right now without a pit in my stomach.  I am so sad I’m not having a baby shower.  A shower makes my pregnancy real and a time for celebration.  Not having one makes me feel like my pregnancy is not valid or nonexistent even. It hurts.  Its my choice not to have one, but I hope people also recognize that I’m still pregnant and this baby is real.

 

My sister, who lives in California, was flying in anyways for a combo work-week in NYC and what was to be my baby shower this weekend.  Though no baby shower was on the agenda, she came up for the weekend anyways.  And she and my cousin reclaimed the day and took me to the spa instead.  If I couldn’t have a baby shower, the spa was truly the next best thing.

 

I felt truly spoiled- four treatments (pedicure, massage, facial, makeup) and lunch.  We spent the day sitting around in our bathrobes.  I seemed like I was busting out of my bathrobe, while my sister sat comfortably in hers.  I figured I am just more pregnant than she is (she’s due two months after me).  After my massage therapist tracked down a larger robe for me and we reassembled, we discovered that I had been in a regular bathrobe and my sister was in a 4XL.  Hah!

 

This is a very gracious thank you to the both of them.  My sister, pregnant herself, has been super supportive.  She calls when she knows I have ultrasounds.  She’s heard me cry over my fears- including ones from the beginning that seem small now.  She was very sensitive when telling me she was pregnant.  She told me in a way that allowed me to be happy for her and recognize that our experiences would be different. And that it might be hard for me at times because she is growing a healthy baby (thank goodness) and I am not.  I can not express how appreciative I was of simply how she told me.

 

My cousin, too, has been a big source of support.  From the beginning she has been unafraid to talk about whatever is happening with my pregnancy.  Some people hear Down Syndrome and don’t quite know what to say.  With the new diagnoses of oligohydramnios, kidney problems and potential lung problems, people are at a loss of how to respond.  Many try to give words of encouragement, which are so very well intentioned but often fall flat.  My cousin asks questions- which is helpful.  I usually just want to talk about things, to explain how hard this all is.  And she can take a step back when I’m sick of talking.  She has also been my backup ultrasound buddy.  My husband works an hour away from our ultrasounds, so coming to them all often entails taking a half day off of work.  We try to work around his schedule but with weekly ultrasounds in addition to meetings with specialists, sometimes it’s just not doable.  And I refuse to go to ultrasounds alone- just in case I get more bad news.  That’s where my cousin comes in.  She came for a follow-up ultrasound for the clubbed feet.  She was there at the ultrasound when the oligohydramnios was first discovered and came with me to the hospital while my husband drove to meet us.  She came with me last week and listened to me cry on the sidewalk afterwards.   She also lets me shower at her house after bootcamp in the morning (its my latest exercise/anxiety release. And I wouldn’t be able to do it if she didn’t live so close and let me mooch her hot water). Plus she brings me ice cream (the good kind) whenever there is a new complication (did I mention how much I like ice cream?)

 

So ladies, thank you.

Of weddings and distractions

I went with my friend for her hair trial for her wedding last week.  Her wedding is in April, the month after my due date and it’s been something I’ve been really looking forward to.  My husband and I are both in the wedding party.  When I was early pregnant and they got engaged, I pictured asking my mom to come hang with the baby while we went to their wedding.  When we first got the Down Syndrome diagnosis and they had asked us to be in their wedding, I pictured bringing our little carrot to the hotel to get ready- taking breaks from makeup application to breastfeed and sneaking time in before the reception to pump.  I pictured bringing my baby is his/her little casts for the clubbed feet and the gaggle of girls cooing over him/her.  This image helped me visualize life after birth- life with a baby- life with a baby with Down Syndrome.

 

I got a kick out of trying on bridesmaids dresses 20 weeks pregnant, trying to guess what my size would be one month postpartum. How big my boobs would be.  Thinking about how to get the dress down to pump.  Worst case, I thought about my baby being in the hospital preparing for surgery or something- but I viewed it as a temporary thing.

 

Her wedding is still something I am so so excited about.  I really like talking about it- the preparations, the ups and downs of planning.  It reminds me of planning my wedding (just over a year ago), which I loved. It reminds me of a time when I was really happy and excited for the future.  I’m riding on the coattails of her excitement.  When we talk about her wedding, I kind of forget about what’s going on with me.

 

Now if I think about her wedding, I’m envisioning a different scenario for her wedding.  Maybe there is no baby.  The wedding, though very different than I imagined, might be a distraction from my grief.  Might actually get me out of the house.  Might remind me that not everyone has kids and look at how much fun they’re having!  Might help take my mind off of me and think about someone else for a bit.

 

I know there’s a chance I might not be able to go to the wedding at all, if my baby lives and is sick and needing me.  It’s weird, but that might be something to wish for???

 

She’s using the same hair stylist I used for my wedding and so it was fun to go with her to the trial. She looked great!  I kept thinking she looked like a model once it was all done.  And thebride-to-be seemed to like it too- which made me especially happy because I recommended this stylist.  It was all lovely.  Though the night ended with one last reminder of what is to come.  On our way out the stylist said “Oh the baby will be a month old when at the wedding! I’ll get to meet him/her!.”  I smiled and responded “Yup.”

 

This is the stuff I’ve been trying not to let myself think about.  What happens after.  People I will see, who will ask unknowingly about the baby.  How do I respond? How do I respond if my baby dies?  No one feels good talking about a dead baby.  How do I respond if my baby lives and is really sick?  Do I lie and just say fine?  Often people ask questions to be polite and aren’t prepared for the real answer.  Some people would honestly like to know.

 

I know I don’t need to have answers right now.  I know I don’t even need to think about it right now.  Frankly, I’d prefer not to think about it at all.  But I’m just constantly reminded that this is something I will have to deal with.

 

Distraction.  It is a tool I had been learning to cultivate before my pregnancy to help deal with my anxiety.  Now it is something I use everyday. Being a part of my friend’s wedding is a wonderful distraction.  It doesn’t change reality but it allows me to experience feelings I would have otherwise forgotten.    I encourage others to practice the art of distraction, because you never know when you’ll need that tool.   I used it the other day with a patient who had a terrible needle phobia.  She needed a procedure and I went with her to support her.  I used distraction to help keep her mind off the upcoming needle.  She was going bridesmaids dress shopping over the weekend and we used that as a shared experience- I talked about my friend’s wedding with her.

 

The only downside of distraction is temporary.  It will be interrupted with reminders of reality.  The goal is to take those reminders in stride.

Finding my hope

We have our plan. But I am so worried that our plan is going to change.  I think it’s a reasonable worry. I feel like very little has gone according to plan so far, and if I mentally prepare to go to the hospital at 34 weeks and deliver at 37 weeks, it just won’t happen.  And the disappointment on top of whatever bad news changes the plan is just too much.  I am ok with the plan- I have second thoughts at times, but when I get to thinking, it seems like the best for our baby.  I actually like the idea of being in the hospital (ha! I say that now…) for some time as a way to prepare.  Getting into the hospital is one step closer to meeting the baby and facing whatever comes afterwards.  And three weeks is a nice long time to let that all settle in and seem real.  So now that I’m hoping for that time, I’m worried I wont get it.  Something might happen before 34 weeks.  I could go into labor.  Baby could stop growing. I could have a stillbirth.  And all those things would expedite birth, and then I’d recover and eventually have to face real life sooner.  With our plan, if I can make it, I wouldn’t have to face whatever new reality (like returning to work after my baby has died or a baby that is terminally ill) until at least April.

 

I know some people may think I am being negative, but I am still planning that my baby will probably die.  On paper, having hope sounds like the “right” or “best” thing to do.  But honestly, having hope in the traditional sense feels wrong for me.  We have had such a rollercoaster of hope, then no hope, then hope, then no hope.  I need to choose one- either stay up or down.  It’s the up and down that hurts so so much. One of my coworkers said there is a fine line between being optimistic and being realistic.  So much truth in those words right now.

 

We had another ultrasound this week.  In short everything is fine.  Baby has grown enough.  Fluid is the same (now I have 0.9cm of fluid instead of 0.  It doesn’t change anything, but its nice to think my baby has a little cushion).   For a few minutes, when we thought it had been longer between growth scans (my fault, I thought it had been almost 4 weeks.  Stupid placenta brain. It had been just under 3 weeks), we though the baby hadn’t grown much.  But once we realized my mental math mistake and re-measured and recalculated, turns out, baby’s growth is fine. 3lbs 7oz.  32%  (previously 2lbs15oz and 54%).  But I did have a few minutes of sadness mixed with panic.  Usually if a baby stops growing, they would deliver and help the baby grow on the outside.  But in my case, the answer is not that simple.  I’ve been working on not thinking about the “what if” scenario- what if the baby had stopped growing?  What would we do?  For now I’m trying to focus on the take home message- growth is fine.  Slowing a little, which is not surprising in a baby with Down Syndrome.  I just don’t want it to stop.  I want our plan to work.   That’s some sort of hope, right?

 

The fact that I get up every day, go to work, see friends, exercise, run errands and keep busy is also my hope.  If I lose this baby I can not imagine how I am going to get out of bed.  And so just getting up everyday is how I hope.

Jealousy vs Gratitude

“The things you take for granted, someone else is praying for”

I saw that quote a few times on facebook today and it just hit home.   Don’t know who said it, but it applies. It really applies.

Things I wish for that others may take for granted:

• Waiting for my prenatal appointment without looking at the other pregnant women with jealousy
• Going to an ultrasound with excitement rather than anxiety or dread
• Responding to people’s comments on my pregnancy in a positive way rather than changing the subject
• Being able to coo whole-heartedly at someone else’s baby
• A (somewhat) worry free pregnancy
• A baby shower
• Shopping for baby clothes
• Putting together a crib
• Knowing that each discomfort of pregnancy is really something I’ll be rewarded for in the end with a healthy baby
• Looking forward to labor as the last challenge before holding my baby rather than the last challenge before knowing my baby’s fate
• Skin to skin after birth
• Not worrying about a c-section
• Not thinking about stillbirth, funerals, or deciding about cremation versus burial

Things I might be taking for granted that others may be wishing for:

• The chance to be pregnant and not struggling with infertility
• A loving supportive husband who views are in line with mine
• Stable finances
• My own good health
• Not being on bedrest
• A workplace that is supportive of my new needs- time off, reduced schedule, time for appointments.
• A team of midwives who go the extra mile (this deserves another whole post)
• An MFM team that is honest and allows me to be part of the decision making
• My whole OB team that was positive about the DS diagnosis (no pressure to terminate, encouragement to breastfeed, etc)
• Family and friends who check in, keep me distracted, allow me to just talk about it all.
• An active baby

To run or not to run?

I went running today.  Yup- 31 weeks and 1 day.  Ok, so maybe most people wouldn’t call it “running.”  But I think it can be classified as a slow jog, especially if I moved my arms back and forth fast enough.  I had been running (I’ll use that term loosely now) since the beginning of pregnancy.  I was never fast.  I took up running a few years ago out of a sort of laziness- it felt like too much work to go to the gym and running I could do anywhere.  I both loved it and hated it.  I hated how hard it was.  I loved how much of a workout it was, how it made me feel physically and how it helped with my anxiety.  I ran in the light and the dark (with lights); the cold and the heat.  Before our wedding last year my husband and I ran a 20k.  To give you an idea of how “fast” I am, nonpregnant I run about a 10 minute mile, 9:30 on a good short race day. Since being pregnant I’ve seen that number creep up to a 12-minute mile.  I’m no superstar.

 

Side note: I want those who haven’t met me to know- I’m not a crazy exercise buff.  I’ve never had a six-pack.  I’m not that lady who plans to run a marathon at 37 weeks, nor publish photos of myself weight lifting huge amounts.  In fact I started this pregnancy a smidgen overweight.  This post is about being active, no matter your size or condition.  It’s a mindset, not a look. Staying active also gives me a huge mental health benefit.  I have had diagnosed anxiety for years- controlled mostly with a great therapist, some low dose meds and exercise.  Plus if I exercise more, I feel less guilty about how much ice cream I eat (a lot).

 

I had signed up with Chris and two friends to do a triathalon in September.  It would have been my first (Chris’s second).  We trained- swam, biked, ran.  When I found out I was pregnant I continued training.  Race was set for when I’d be 13 weeks.  I joked I’d be the fastest pregnant woman there.  I was nervous- mostly for the swim because though I’m a decent swimmer, I don’t like swimming in the ocean and with so many people around.  But I had paid my money and announced I was doing it, which made me motivated enough.  We ended up having our CVS the day before, which then restricted me from exercise that whole weekend.  I was secretly a little relieved, especially because it turned out to be 40 degrees the morning of the race.  I was also sad, because I still have yet to run one.  My sister also did a triathalon recently while newly pregnant and she did an Olympic (read: double the distance of the one I signed up for. Read: kind of awesome).  I was jealous.

 

Once I was off exercise restrictions (one whole weekend), I resumed my running routine- about 3 miles, usually before work 3-5 times per week.  There was a study recently publicized about how exercise in pregnancy can help boost brain development in later life for the child.  Heck yeah, I was going to do anything I could to help my baby’s brain development.  I started taking a choline supplement too (reported to help with neuro development in a mouse model study of mice pregnant with down syndrome-equivalent mice babies).  The benefits to my baby helped motivate me.

 

As I got more pregnant, it became a little more uncomfortable, mostly after I ran.  I saw a chiropractor to help with the tailbone and pubic bone pain the running seemed to exacerbate.

 

At 25 weeks, I ran a turkey trot 5k. I had my pregnancy-best time! (10min 15sec mile).  I was so sore and tired after, I vowed that was my last run.  I would switch to the elliptical and training bike.   I have had it relatively easy physically throughout pregnancy- minimal nausea in the beginning .  I moved around easily.  I could go all night without peeing.  And I would listen to pregnant woman all day at work with many physical complaints (that I’m sure were real- I don’t mean to minimize).  After that turkey trot, I wondered if that was how other pregnant women feel all the time.  Maybe the physical ease was my trade-off for the emotional hardships I had faced.  Or maybe my mind was too busy focusing on the worry surrounding Down Syndrome, that it didn’t have time to focus on the physical issues of pregnancy.  Maybe I just wasn’t far enough along to really feel how hard pregnancy was on the body (still could be true).  The soreness after running gave me a taste.- though it only lasted that day.

 

When I was hospitalized in mid-December I was on bed rest for a couple days as we tried to figure out why I had low fluid.  Being on bedrest made me realize as much as exercise seemed like a chore at times, I needed it.  Once discharged and my doctors and midwives made it clear I wasn’t on bedrest, I got back into the swing of things, elliptical and bike.  And one day shortly after, we had a 60 degree day in December in Connecticut.  So I put on my running shorts (yup, shorts in December) and gave running another shot.  I was slow, but it felt good to be outside.  And then I was super sore the rest of the day.

 

That, and as I was running I couldn’t help think about my little baby in there, bouncing up and down with so little fluid.  Pregnant woman often worry about certain activities harming their baby, and I assure them that it’s really hard to hurt a baby on the inside.  Babies have this super tough water balloon with lots of cushion that they’re swimming around in.  Babies don’t mind most activities one bit.  But that reassurance didn’t help me.  My baby had so little cushion that I worried a bit while I ran.  And then when I got home I spent some quality time trying to feel fetal movement.  When some time went by and I wasn’t feeling any, Chris brought me some chocolate and tall glass of water. I got a little teary eyed as I waited for movement, thinking my selfishness wanting to run might have led to me killing my baby.  I know that may sound dramatic, but first of all- I am pregnant and so totally emotional.  And second, I think I get a little leeway as far as emotional status with all the new complications.  Chris tried to reason with me- our baby is more of an evening and nighttime mover, so of course s/he’s not moving much mid afternoon.  I was having nothing of it. At the end of the story, the baby moved.  All was well.  But the soreness and the emotional strain was enough for me to stick to my last time running vow.

 

Until today.  Another warm day in Connecticut. They are few and far between, especially on a weekend in the winter while its light enough to go outside.  Plus, our elliptical has been broken (that’s another story), the training bike is uncomfortable in different ways and I can only take so much Jillian Michaels in her exercise videos.  So I decided if I run slow, I’d be ok.  You’d think I’d learn.  Now 31 weeks, it’s harder to run- things hurt more; I had to stop once; I felt like I had to pee the whole time.  And that worry about the baby in low fluid crept back.  I came home and laid on the floor waiting for movement.  Baby eventually moved- but I don’t think I can take it anymore.  Now that I have no fluid, what’s cushioning my little baby now?  It’s enough pressure having to make sure the baby moves everyday (it doesn’t help that baby is most active at night and that now that I’m back at work and seeing patients, I’m so busy I barely think of it during the day).  The thought of my running causing extra stress (imaginary or not) on my baby is more than I can handle right now.

 

So today I vow (publically) that this was my last day of running.  The elliptical repairman came and supposedly fixed it.  My midwife has convinced me to try this somewhat cult-like bootcamp that all the other OB people go to.  I’ll be trying that this week, if I can keep up my nerve (Don’t worry, both my midwife and my MFM doc both attend, plus a myriad of other midwives and labor and birth nurses- so I’ll be in good hands).  Another friend introduced me to a pretty heart pumping 7-minute workout online.  So I have options.

 

It seems like yet one more unfair thing this pregnancy- all these complications not only cause me extra anxiety, but also limit my exercise which is one of the things that helps manage that anxiety.  But, I will stay active and try not to feel guilty about it.  I will help boost my baby’s brain power without worrying about squishing his/her cord.  Exercise is good, right?