Saturday, January 30, 2016

Choosing Life

We are so thankful for all the support we've received from family and friends. To know so many of you are praying for us makes us feel less alone on this journey. We also realize there are people who think we've made the wrong decision but are tactful enough not to tell us that. We appreciate you, too.

I've been pro-life for as long as I can remember. The thing about being pro-life, though, is that you never imagine you might one day have to make a decision about abortion for yourself. In the last few months, though, I've learned that sometimes a woman considering abortion doesn't look like a desperate college girl wanting a quick remedy for her problem; sometimes she looks like a distraught middle-aged woman who's been told her baby is going to die anyway.

I wonder where that euphemism "interrupt the pregnancy" came from. We heard it several times after our first ultrasound. Do they teach it in medical school? Was there a board or a committee that discussed and discarded various options, trying to find a softer way to offer it to parents already in shock from bad news? I'm glad we spoke up early on and said abortion was not an option, because they might have pushed it more after the amniocentesis if we hadn't. Since our diagnosis, we've heard and read stories of other parents with Trisomy 13 babies whose doctors pushed them a lot harder to abort. For those who just want it to be over, I'm sure it's tempting.

I get it. This is easily the hardest thing I've ever lived through, and we're not even to the worst part yet. We found out with over four months left until our due date. That's four more months of carrying a baby you know will die -- four more months of becoming more and more attached with every twist and kick -- four more months of becoming more and more in love with a baby you'll never bring home. I understand why some women don't want that bond getting any stronger; if the baby is going to die anyway, why prolong the pain? It doesn't change what I believe, but I'm a lot more empathetic now. Maybe God will be able to use that someday.

From my point of view, here's what it came down to: this is my daughter. I started loving her the minute I saw the positive sign on the home pregnancy test. I could no less end her life now than I could end her life at three or seven or nineteen. She is wanted. She is loved. She is my daughter. I couldn't fathom the idea of causing her severe physical pain to lessen my emotional pain. This is the only life she'll ever know. All I want to do is give her a warm, safe place to flip and turn and suck her little thumb. I want her to be free to kick, especially the big ones I feel when she hears her big brother and I singing songs and reading stories. I want her to know love. Nothing but love. She is my daughter. For her, I've chosen life, no matter how short it may be.

Friday, January 15, 2016

Happiness, Jealousy, and Everything in Between

I had a check-up on Wednesday and Maren is doing great. I'm gaining the right amount of weight, she's measuring at the perfect size, and -- best of all -- I got to hear her strong little heartbeat pumping away inside me. Hearing that hearty thump, thump, thump and feeling her mighty kicks every day, it's hard to believe she's not healthy. It makes me thankful for her early diagnosis, because as hard as this long good-bye is, an unexpected, abrupt good-bye would be so much more painful. I can't imagine going through what seemed like a normal pregnancy, buying lots of little pink blankies and clothes, going into labor expecting a healthy little one, and then coming home empty-handed. I think it might kill me.

Standing in line after my appointment, waiting to schedule my next one, two different tiny babies in little pink caps went by me. The first was alongside a dazed-looking teenage girl, being pushed by a what appeared to be her social worker. The second baby's mom had cognitive disabilities. Her elderly parents were pushing her baby for her. My first thought with the second new mom was, "I hope whatever sicko took advantage of a mentally challenged woman is rotting in jail right now," but my second thought was the same as it was when seeing the teen mom. I was tempted both times to grab those new mothers by the arm and say, "Do you want me to take her home? I can give her a really, really good life."

I have several friends who are pregnant right now, and other friends have asked if it crushes me to see their posts on Facebook. My answer is no -- I am SO happy for them because I know they are good mothers. But with strangers? Lots of feelings come up. Jealousy. Anger. "It's not fair!" (Like I deserve better? I don't know what I think fair means.) Most of all I feel concern for those babies. And yes, sadness. Deep, deep sadness that we won't bring home our little girl.

I know in the future we could adopt a baby like one of those little ones I saw this week. We could give a better life to a baby who needs good parents. We might think about that in the future, but right now we need to make it through this. I can't save every baby in the world. I can't even save the one I'm carrying. All I can do is keep her warm, sing to her, and pray for that tiny heart to keep thumping. For now, it's enough.

Sunday, January 10, 2016

The Diagnosis

It's been a rough couple of weeks, trying to make plans in preparation for Maren's birth and death. Someone asked why I'm not more positive -- don't I believe that God can work a miracle? Of course I do, but I also believe God has gifted doctors and researchers with the ability to create accurate medical tests. The University of Iowa's test results match the results from the Mayo Clinic, where they sent Maren's amniotic fluid for a second opinion. I'm pretty confident in their diagnosis of Trisomy 13, and Trisomy 13 is not a diagnosis that leaves much room for hope.

The doctors thought something was wrong from our very first appointment. I don't know if it's because I'm forty or if this is just how they do it now, but we had our first ultrasound at twelve weeks, before we even met the OB or heard a heartbeat. When we saw those little arms and legs moving, we were so excited. I think most women who've miscarried feel the same way when they get pregnant again -- a mixture of elation and terror. Seeing our baby alive and well was so reassuring . . . until the ultrasound technician said she needed to step out for a moment to get a doctor. I waited until she quietly closed the door behind her to tell Kevin, "They only bring in a doctor if something is wrong."

A high-risk doctor came in soon after and said the baby's nuchal translucency measurement (the back of the neck) was thicker than it should be. This indicates higher chances of a heart defect or a  chromosomal condition like Down Syndrome. In the span of about three minutes, she used the phrase "interrupt the pregnancy" five times. I finally said, "Abortion is not an option." What I wanted to say but held back was, "If I hear that stupid euphemism for abortion one more time, I'm going to slap you." We declined her offers of tests that would tell us for sure; we didn't feel that the higher risk of miscarriage was worth it. This was our baby and we wanted him or her, even if he or she had a "defect."

I had a good, long cry when we got home. It's a bit of a shock to hear something's wrong with your baby. After a while, though, I felt a peace about the whole situation. I thought about James and how much happiness he brings us. I thought about how much he makes us laugh and how smart he is. I knew that his brother or sister would be like him, even if he or she had Down Syndrome or a heart defect. These were things we could deal with. This would be our daughter or son. All I wanted was for this baby to LIVE. After losing our first baby, I couldn't imagine losing another.

Kevin and I talked more about the possibilities over the next few days. We live in Iowa City, home of one of the best children's hospitals in our state. A heart defect could be operated on. He wouldn't be able to play football someday like his dad would want him to, but he'd happily run around our backyard. Children with Down Syndrome are still beautiful and sweet. She wouldn't be the most popular girl in school, but she'd charm everyone who'd love her. We didn't care what was "wrong" -- we loved our baby already. And besides, how much could doctors tell from pictures taken through layers of my body at twelve weeks of life? As we shared our fears over the next several weeks, we heard several stories from friends or friends of friends about their babies who were predicted to have all kinds of problems that turned out to be nothing. We trusted God and tried not to worry.

Our next ultrasound was at eighteen weeks. Kevin asked the technician right away if she could tell the sex of the baby. She unenthusiastically replied, "Looks like a little girl." With James, we hadn't found out, so this was our first time hearing a gender reveal; I thought they would make it a little more exiting. I didn't realize until later that her lack of enthusiasm was because she and the rest of the medical staff were full of doubt about the baby's chances of survival. The next thing she said was, "Looks like she has a cleft lip." After the initial shock, I actually turned to Kevin, smiled and said, "They can fix that!" I felt like laughing! Here I'd spent six weeks worrying about nothing! Yes, it would be hard to watch our baby suffer through surgeries, but compared to a heart defect or a chromosomal abnormality, this was nothing! I felt such relief! The ultrasound took forever. With James, we'd always been in and out very quickly, but now the technician took picture after picture from every imaginable angle. I tried not to worry too much. I wasn't surprised this time when she said she needed to go get a doctor.

The same high-risk doctor came in . . . along with three others. She started with the cleft lip findings, but she wasn't as optimistic as I was. She said alone, it's not much to worry about, but the ultrasound showed two other concerning issues: her brain wasn't developing as fast as the rest of her, and her umbilical cord only had two blood vessels instead of three. That combination of problems strongly indicated a chromosomal issue. She didn't mention "interrupting the pregnancy" again, but she strongly suggested we get the amniocentesis we had refused earlier. She said it would be helpful in making decisions about our baby's life, which might be very short. She also mentioned we may need to think about whose life was more important, mine or the baby's.

Kevin said we didn't want the amnio; we wanted our baby no matter what. I interpreted what she was saying, though, and said we should; if I were only going to have a short amount of time with my baby when she was born, I needed to know that. I needed a photographer there to get the only pictures we'd ever have of our little girl. Grandparents needed to be ready to get there fast. I needed to mentally and emotionally prepare for death along with life.

The amniocentesis was a few days later on a Tuesday. They said we would get initial results in forty-eight hours or so. Waiting for the results was the worst. I didn't want to get the phone call while I was working, but I was desperate to hear whether or not something was wrong with our baby. We prayed and prayed for Down Syndrome. Of the options, it seemed best. A baby with Down Syndrome would be a living, breathing child we could take home and love. The other options gave less hope. I skimmed over the information about Trisomy 18 and Trisomy 13. They were so rare -- the chances of our baby having one of those abnormalities was so small, it didn't even seem worth dwelling on. Down Syndrome or just a scare -- those were the two possibilities I focused on.

I still hadn't heard from the hospital after school was over on Friday, and I couldn't imagine worrying through the weekend. I called them and left a message to please call me as soon as possible, then went to pick up James. The phone rang as I was driving, and I quickly pulled over onto a side street. The genetic counselor asked if I was in a good place to talk, then cut to the chase: Trisomy 13. "That's the fatal one, isn't it?" I choked out. She said, "It's not compatible with life." She said 50% of babies with Trisomy 13 are stillborn. Those who live only survive a few hours or days after birth. 10% make it to one year. She said someone from the palliative care team would come to our next appointment to help us.

I hung up and sobbed, sitting there in my car on some side street between my school and James's babysitter. I texted Kevin and told him I was coming to get him, then tearfully drove over to his work. The phone rang as I was driving and the caller ID showed it was the hospital. A surge of hope ran through me -- they gave me the wrong results! They're calling back to apologize and tell me everything is fine! Except they weren't. It was the OB, calling to give me her cell number and letting me know I could call her if I had questions over the weekend. I cursed myself for being so optimistic. Pulling up in front of Kevin's office, he quickly jumped in and I choked out the news. We just sat there, crying and holding each other for a while, then drove home. We sat in the darkening living room and cried some more. What else could we do?

That was December 11th. We've had about a month for reality to sink in. Some days it's still so hard to believe. She is so active and kicks like a little soccer player in training. I can't help but think this is her special gift to me, making herself known so often throughout the day. I try not to think that she may one day stop kicking. We are praying for a live birth and a few hours with her . . . to see her blink and hear her coo and feel her fingers wrap around ours. I know there are no guarantees, and I'm not trying to cut any bargains. That is my hope. That is the miracle I'm asking God for. Not a long, healthy, normal life for my little girl, but just for a few hours with her. That alone would be a miracle for us.

This song both makes me cry and gives me comfort. I'm so happy I'm carrying Maren. I love her a little more each day. Please pray with us that we'll get a few hours with her before she goes back to her Father's arms.