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.

photo (37)

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?  

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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.