The Worst

When I was trying to get pregnant, every time my period came I was so disappointed.  I thought that that was The Worst.   The worst thing possible.  I would see patients, pregnant and not even realizing how great it was.  Then when I became pregnant and had an ultrasound that suspected I was miscarrying, I thought, nope this is The Worst.  I went to work nauseous and devastated, carrying this secret. When we found a heartbeat a week later I was thrilled but had that constant fear of miscarriage in the first trimester. I knew what it felt like to think I was losing the pregnancy and going to work everyday.  I didn’t want that again.  I thought then that living those first trimester months in such anxiety was The Worst.  Then at the first trimester screen, the 13 week ultrasound that was supposed to give me reassurance, I was told that there was something wrong.  I thought those two days of waiting to see if my baby would have a chance at life were The Worst.  When I got the results it was Down Syndrome, at first there was a little relief, thinking at least my baby could live.  But learning the risk of stillbirth made me think that going through pregnancy worried about a 12-20% chance of loss was The Worst.  At 27 weeks, learning my baby’s kidneys were failing and lungs would be compromised and my risk of stillbirth skyrocketed, I thought that was The Worst.  Now that I’ve survived a pregnancy with the knowledge that my baby might die and then holding my tiny, warm baby in my arms as she took her last breathes, I know that that’s not The Worst.  I’ve learned that whatever life hands me there can be something worse.  I’m scared.  I’m scared that I might not get pregnant again.  That if I get pregnant I might miscarry.  That if I don’t miscarry, I might lose the baby later.  That I might lose Chris in someway.

I don’t dare say that losing Mabel was The Worst.  I don’t want to tempt fate that way.  Losing Mabel was and is awful beyond words, hurts in a place deep in my chest that I never knew existed, seems unsurmountable at times.  I wrote earlier in pregnancy that I didn’t dare complain about anything because I was just so happy to be pregnant.  I worried that if I complained, fate or the universe would take it all away.  Well, I don’t think I complained that much and look what happened.  I know that there are so many things we don’t have control over, but it just hurts when you want something so bad, have done everything right, have come so close and you don’t get it.  I tried to be a good person- to plan ahead, treat my body right, to say yes to everything that was handed to me.  Everything.  I thought that if you’re good to the universe, the universe will be good to you.  I’m still waiting for my good.

I’m angry.  Why did this happen to me?  Why do some people have babies they don’t even want?  That they didn’t have to work for?  Angry that I have to watch Chris play so brilliantly with other people’s kids, when he should have one of his own.  Angry that I have all this love, energy and devotion saved up for my child with special needs and medical issues and no outlet for it.  I’m jealous.  Jealous of the people who are sleep deprived because a baby wakes them up at 1am, 3 am and 5am.  I’m jealous of the women who wish they waited more time between their kids, to have the luxury of being stressed about the work of two kids.  I’m jealous of the women who are still pregnant, with the baby in their ribs and pushing on their bladder.  I’m sad.  I’m sad that I had to bury my baby. I’m sad that she only knew life on a ventilator.  I’m sad that my daughter will never see the inside of the home we bought just for her.  I’m sad she won’t snowboard or play in the fort her dad would make for her.  I’m scared.  Sacred to hope things will get better, because hope has disappointed me.  Scared of whatever “worst” life has in store for me.

I’m angry and jealous. I’m sad and scared.  And waiting for my good.

Who has a baby shower at a bar?

Mabel would be two weeks today.  I woke up at 5:30am with a stomach ache, which calmed down and I thought to myself as I lay awake for a bit afterwards, I can be awake for 6:25- this is good.  I feel back to sleep a little after six.  I was sad that I missed the time, but I think my mind was still thinking about it.  I dreamt of Mabel.  She was a day or two old and I held her in my arms.  She was the baby I held after she had died- quiet, motionless, eyes closed, wrapped in her white blanket wearing her pink hat.  But she was warm and alive.  As I held her she let out a small cry, opened her eyes and began to nurse.  The dream was quick and lasted only a few seconds but spotlighted all that I want right now.

On this day, Mabel’s two-week anniversary, rather than wondering “is my baby getting enough milk?” or “When will she be discharged from the NICU?”  I am  struggling with other questions.

How do I say it?

I had a baby and my baby died.  My baby passed. (Passed what?)  I lost my baby. (Where did she go?)  I had a baby and she lived for six hours. (and then what happened?)  Her birthday was also her death day.  So what do I say- the day Mabel was born? The day Mabel died? The day Mabel came? The day we met Mabel? Mabel’s day? The day Mabel was?  Was it the best day of my life or the worst day?

Where do I belong?

Friends with kids, friends without kids.  I’m in that club no one wants to belong to, between two worlds.  I was on the cusp of changing worlds.  I was about to be the ultimate friend with kids- we had not only committed to a baby (big commitment), but a child with Down Syndrome who might never move away from home.  And committed to a child who could require daily dialysis and vent care for years.  We kind of made the ultimate commitment.  But now we have no commitment.  We are free again.  If I had a child before Mabel, I would still be a friend with kids, but where am I now?

How do I rejoin the real world?

I’m often better when I’m around people.  I can usually talk very easily about Mabel and her story.  I’m sure people are often surprised how composed I am when talking about Mabel.  It’s because I save my real tears- the raw, hot, unstoppable tears- for the early mornings and late nights, when I’m alone or with Chris.  Sometimes when we are with groups, I’m quieter, more reserved than I ever have been.  I like certain aspects of a group- I like that others can carry on a conversation and I can listen, contributing only when necessary.  That I’m not responsible for the conversation going forward.  I have trouble contributing because in my mind, life has stopped.  The world as I knew it and as I know it has stopped.   I am no longer pregnant- that world is gone.  And I am not caring for a baby like I should naturally after being pregnant- that world is gone. Though others are talking, it’s all I can think about at times.  And these big groups are not usually the venue to talk about Mabel and how we are doing in our grieving process.  How to I re-engage?  How do I join the conversation?  How do I rejoin the world?

Who has a baby shower at a bar?

I wrote yesterday about how I was uncertain about going out for happy hour with friends, but I was going to try.  We went to a restaurant not far from our house, which was a nice treat because we live a good bit outside of the nearby city- a schlep for most of our friends.  And since it’s not a city restaurant, it’s usually pretty low key.  We gathered with friends in the bar area at a table and I was working on simply being present.  And then the table next to us starts filling up.  First middle aged men, then a more diverse group- younger and older women.  And then one younger woman starts opening presents- baby clothes and diapers.  It was a freakin’ baby shower in a bar.  On a Friday night.  Really?  There’s a whole restaurant side of this place and they were squeezing twelve people around a table meant for six so they could be in the bar.  I was able to sit so I couldn’t see them, but I knew what was happening.  We had already ordered food and drink, so we stayed.  I didn’t cry then.  I was just really really annoyed.  When we left, the tears found me.  I cried because the night was overwhelming.  Just being out was a big deal.  I cried because this was the first of many times I’ll be surprised by something baby related that hurts me in the deep gut.  I cried because maybe this was a sign that I shouldn’t have been out at a bar two weeks after my baby died.   I cried because who has a baby shower in a bar?

When does it get better?

Yesterday I began reading another blog- one written by a mother who lost her baby a day after birth several years ago.  I was bouncing around reading her posts- skipping ahead to one, two, three months post birth.  I wanted to see when it got better for her.  The hard thing about reading blogs is that they don’t always represent the whole picture.  We blog about the hard and the memorable stuff, not the mundane.  Though I write about the pain I felt seeing a baby shower at a bar, I don’t write about laughing about a Barbie story over ice cream with friends. I have those moments too.   This woman’s blog described her grief over months and months- and then I stopped reading.  I know I will always grieve my child.  I read the posts closer to the birth of her son, so I could relate to what she was feeling in the time I am in now.  When does it get better- I’m not sure, but I know it’ll get different.

The world does not stop

This first week after I had Mabel, I had a surprising amount of busy-work to do.  Mostly just phone calls.  Some could have waited, some couldn’t.  In some ways, I guess they were distractions and reminders that unfortunately the world does not stop when you lose a child.

 

The first morning after we met Mabel, I was woken up in the hospital by a phone call from American Express, alerting me to some suspicious charges.  Apparently someone had used my credit card to buy several plane tickets in Europe.  AmEx is pretty good at these things, though it did require another phone call a few days later to completely clear it.  The whole idea of someone using my credit card on a day I’m so very vulnerable just seems like a kick in the pants, right?

 

I also had to call the disability insurance company.  My representative had called and left a message to verify some information.  When I called back I didn’t initially get the representative that’s familiar with my case and the amount of recovery time was wrong.  I was afraid I would have to go into detail, explaining that my baby had died.  Luckily I was soon connected with my representative and I mentioned only that I had complications and he then must have reviewed the paperwork and was quickly able to clear things up, saying he was sorry for my loss.  I didn’t have to explain further.  I breathed a sigh of relief.  I knew I’d have to explain to someone, somewhere at sometime, but it’s still just so raw.

 

My primary care doctor was next.  My midwives and therapist all agreed that it might be best to increase my antidepressant in preparation of postpartum depression.  I feel like I’m grieving, appropriately, but I had asked them about their thoughts on increasing my dose because I know that things can be very different a few weeks down the road.  I decided that this might be the time to test out saying the words- my baby died.  I knew I’d have to leave a message with the secretary.  I called and after explaining I wanted to increase my dose, I explained “I had a baby and my baby died. So I just want to be proactive.” I said it.  I actually had to say it twice because she couldn’t understand me the first time.  The first utterance I actually did ok, my voice cracked a little.  But when I had to repeat it, I couldn’t keep it together.  I had to pause and apologize tearfully and then got the words out.

 

Lastly, I received an Enfamil email this week.  I had them in pregnancy and just deleted them as junk.  I think I became signed up after a shopping trip at Motherhood for maternity clothes.  In pregnancy, despite my professional annoyance at them- knowing they are encouraging formula feeding- I never got around to unsubscribing.  Apparently they put you on a mailing list too because I arrived home from the hospital to a package with formula which had been mailed.  Neither the email nor formula I got brought me to tears but I could imagine in the future they might.  So I unsubscribed from that email, which also allowed me to unsubscribe from the mailing list.  The website confirmed my un-subscription and noted that it might take up to 3 months for the mailing cancellation to be processed, which I thought was ridiculous but pushed it from my mind.  Then a few days later I received another email from Enfamil and this time when I went to unsubscribe again, the site was “temporarily out of service.”  I tried again a few times that day and then again the next day.  I was now furious.  I felt like they were doing it on purpose.  So I called them.  And after going through my name, address, email and phone with them, I told them that I tried unsubscribing but the site was down.  I said I had my baby and my baby died.  I needed to be taken off the email and mailing list immediately.  I choked up only a little and shed some tears.  But I was proud that I could get the words out.  The poor man on the other end of the phone- it wasn’t his fault that Enfamil was being such jerks, but someone had to hear it from me.

 

Now it’s a few days later and the prescription wasn’t done and the disability still has some details to work out.  So more phone calls to do this week.  Life apparently goes on even when your child does not.

Diagnosis: Irish

Sometimes I feel like my swollen breasts are the only proof that I had a baby.  I do take some comfort in the fact that my body knows what to do.  Many women have trouble with their milk coming in.  Without any nursing and despite wear 2-3 tight sports bras at a time, I seem to have no such trouble.  My body seems meant for pregnancy, birth and recovery.  I had little physical complaints in pregnancy.  I had a fast labor.  I’m recovering well- very little bleeding, no real cramping, and an apparently sufficient milk supply.

Engorgement lasts longer than I thought it would.  I was preparing myself for 48 hours, which is what I tell nursing moms.  I, however, am not nursing.  It is an especially sad thing for me- to have been pregnant, birthed and not breastfed even once.  For a non-nursing mom, engorgement lasts quite a bit longer. It’s a blessing and a curse- a reminder that there was a baby and a reminder that there is no baby.  On the second day of engorgement, my breasts were very painful; I couldn’t be hugged and had to sleep only on my back.  Then they got a little better- not so tender but still very full.  By the fifth day I was getting concerned or maybe just anxious.  I needed to hear that I’m fine, it’ll go away and it sucks that this is happening.  They looked pink to me- not full blown sign of infection, but I needed some reassurance.  So I made an appointment with my midwife who diagnosed me as Irish.  She agreed, it did not look like mastitis, but the pinkness was probably just from blood flow, which apparently is very visible on my pale Irish skin.

I have been sleeping.  In the few nights I’ve been home, I’ve had two kinds of sleep- medicated or interrupted.  I’ve taken an ambien every other night- I’m afraid I’ll become reliant, so I’m trying to do without on some nights.  The nights with medication I sleep through.  The nights without, I have been waking up around 3am.  Maybe it’s my body doing what it’s supposed to do biologically.  Waking up every 4 hours to feed a baby.  As one of my friends with experience commented on an earlier post “one of the oddest things about delivering a baby who does not live is that your body doesn’t really know that.”  Maybe my body is again doing what it’s supposed to do.  Or maybe it’s part of the grieving- those 3am wake up calls are raw with emotion.  Whenever I first wake up I have a moment when everything is as it was before Mabel.  I used to have these moments when I was pregnant.  I’d wake up and it seemed like everything was normal, and then the realization that I was pregnant would sink in.   Now it’s the realization that my baby died.

And then there are the dreams.  During my unmedicated nights so far, I’ve dreamt of death. I was a very vivid dreamer pre-pregnancy, often with bad dreams.  In pregnancy I dreamed less.  Now, my first night home, I had two memorable dreams.  I dreamt about my midwife who spoke of father who had died 30 years before (in real life her father is still alive).  And worse, I had another dream about a child falling from a mountain to his death.  He had just save his younger brother from falling, but lost his balance in the meantime.  We watched as he fell into the depths below.  A few days later I dreamt that my youngest brother died in a car crash.

This morning I woke up around 6am.  I stayed awake, watching the clock until it hit 6:25.  I shook Chris awake and told him, It’s 6:25.  One week ago Mabel was born.  And then I cried myself back to sleep in his arms.