Welcome to the Blue Butterfly Blog

Thousands of families suffer in silence from the loss of a pregnancy or an infant. My struggle is just beginning. I carried twins to term knowing that only one would survive. This is the story of my journey through shock, devastation, grief, anger, and hopefully someday acceptance. I know that other families are desperate to know that they are not suffering alone. This is for them.

Saturday, December 31, 2011

Making Memories

I've been very upset for the past several days. Yes, I will definitely write about it, and I've started, but on this night of renewal and rejoicing, I don't want to dwell on the sadness.

It's easy to say "I don't want to...," but how can you accomplish this? Sad thoughts are always sneaking into my mind at the most unpredictable times. But, the best way I know to combat them is to find something I love and share it with the babies.

Today, that was birdwatching. Well, admittedly, today was chasing. Brad and I headed up to Hardin County, about an hour and half from Columbus, because there was word of a snowy owl. This would be a life bird for both of us, and of course, for The Belly.

After consulting Brad's "smartass" phone, we found the crowd of birders who had also trekked out to spot the illusive white raptor. There is was! We spent quite a while watching it and were rewarded by seeing it fly, probably to hunt for small rodents.

Snowy owl at about 300 yards

This is The Belly's fifth life bird. It is added to the list which includes Bonaparte's gull, black-tailed gull, white-winged scoter, and tundra swan - all great birds.

A portion of more than 215 tundra swans in an Attica-area field

For me, there is so much truth the the famous quotation by turn-of-the-century essayist and naturalist John Burroughs, "I go to nature to be soothed and healed, and to have my senses put in order.” Everyone has something that brings them peace. Embrace it and return to it whenever you have the need.

I never want to look back and think that I didn't go out and "share" experiences with my babies while I could. So, as much as I tend to scoff at the New Year's Resolution-making process, I do resolve to continue to live life to the fullest extent that The Belly will allow. I will continue to make memories with my babies, whether or not they ever come to learn of them.

Wednesday, December 28, 2011

Happy Holidays!

I hope that everyone has had a restful and happy holiday season so far.

Our holidays were filled with the usual Tour D'Ohio as we traveled from Columbus to Sandusky to Solon. Then we ate, played cards, ate some more, drove, and ate. It was a low stress affair.

I only had one breakdown when my sister-in-law gave me an adorable ornament of a blue teddy bear in a stocking that said Spyder on it. I had been holding all my feelings in, fighting the thought that Spyder wouldn't be here next year, but they finally overtook me. I did feel sad all weekend, but I knew I had to function.

Regardless of the strange and confusing holidays that we had this year, the Belly and I accomplished everything we set out to do. We lit the menorah, baked Christmas cookies, and saw the lights at Nela Park. We ate Pad Thai for Christmas dinner, gave out presents, and spent time with the family. Overall, we made some happy holiday memories. Here's to a Happy New Year!

Wednesday, December 21, 2011

Trying Not to Freak Out

It's amazing how fast things can change both physically and emotionally when you're in a vulnerable state. Yesterday I wrote of how I was celebrating the holidays and making sure to have lots of experiences with the babies. Today I am a nervous wreck.

I guess I knew it was a possibility, but I was still surprised when the Maternal Fetal Medicine specialist told me today that I have polyhydramnios. This is yet another entry in the dictionary of medical terms I have learned, and it means that there is too much amniotic fluid in Spyder's amniotic sac.

One reason "poly" is such a risk is that it inflates your uterus to a point where it could could trigger labor as if you are full term. I am at 27 weeks and 1 day today. Going into labor could mean losing both of our babies.

Right now, I am not experiencing any signs of early labor - no cramps, no contractions, no super tight belly, no shortness of breath. The doctor showed me how my belly still bounces back like a perfectly baked cake when pushed on. She said we'll continue to monitor how I feel, but we won't take action yet.

There are two main courses of action when you have polyhydramnios. First, you get two steroid shots in the tush - I'll let you know how Roger Clemens felt... The steroids are to stimulate the growth and development of Poppy's lungs and brain in case she is born prematurely. The second treatment is to drain fluid from Spyder's amniotic sac using a needle. This procedures carries the same risk of miscarriage as an amniocentesis.

It's been 12 hours since the diagnosis and I am questioning every single movement, twitch, and stretch that I'm feeling. I'm not supposed to be freaking out. I keep telling myself that my doctor is not going to jeopardize Poppy and I really need to put my trust in her right now. When the doctor tells me to freak out, I will freak out.

Oh, and I'm anemic, too.

Tuesday, December 20, 2011

Having a Happy Hanukkah and a Merry Christmas

It's the most wonderful time of the year!

This may be true as you get to gather with family and friends, eat cookies without guilt, and exchange gifts that you battled through lines to buy. But, it can also be an extremely stressful time for anyone, pregnant or not. You have to make your family happy by being sure to see everyone, maybe clean the house to host a party, and there is probably someone dear to you whose absence is accentuated.

So, how do you have a happy holiday season?  If we could solve this, we wouldn't have people pepper spraying each other in Wal-Mart or others faking the flu to get out of travel. We wouldn't have road rage in traffic jams, and we wouldn't even have insults over a "well-done" turkey. But, what would the holidays be without this?

The best we can do is rejoice in the little things that made us happy when we were young. For me, it was lighting the Hanukkah menorah and watching all of the candles of different colors burn down. I also loved driving to Cleveland's Nela Park and cruising past the Christmas lights. And of course, we baked lots of cookies

This year, I'm trying my best to have those experiences again with my two little babies in tow. No, the obviously don't know what is happening or where they are, but to me it's important to make sure that Spyder and Poppy get to do these things together at least once. I need to remember this year when Spyder is coming with us to the Deering farm for Christmas breakfast, and he's "tasting" the wor su gai that I'm sure to eat with my family that evening.

Tonight, Spyder and Poppy will help me light the menorah and we'll all celebrate Spyder's first and last Hanukkah. On Sunday, they'll help me tear into wrapping paper and listen as people receive the gifts we've picked out for them. It will be his first and last Christmas. I need to make it special.

Happy Hanukkah and Merry Christmas to you all. Let's make it memorable.

Poppy's face and hand.

Spyder's face against the uterine wall

Tuesday, December 13, 2011

The Waitress

Today I met someone like me. It was the ladies' holiday lunch at work and we descended upon Logan's Roadhouse. (Yum! I highly recommend their rolls and baked sweet potato, and I'm sure the steak is great when your condition doesn't force the eating of a well done cut over a tender medium.)

As we were leaving, one waitress noticed the belly and asked when I am due. I explained that I have three more months and my size was due to twins. The other waitress, a mid-twenties, dark-haired, hemp-wearing girl, piped up and said she had twins. As happy for her as I wanted to be, my heart sunk to my stomach as it seems to do these days when other people have good news. She went on to say what a shock it was and how she wasn't sure she'd have any more kids.

Then she said it. "One of my babies wasn't viable."

I instantly felt a bond with her. I told her that my son wouldn't survive and explained why when she asked. My story was mild compared to hers.

She had been pregnant with mirror-image identicals. That means that they share all of their genes, but they are actually mirror images of each other. For example, one would be right-handed and the other left-handed. She learned that one of her babies was developing but was not growing a brain. This is a form of anencephaly, an unfortunate, but surprisingly common, neural tube defect.

Identical twins carry a much higher risk of complications than fraternals, and having one with a neural tube defect greatly increases that risk. The way her other baby survived is truly amazing. The two fetuses' cords were entangled, but somehow the cord of the ill-fated baby knotted six times, cutting off its nutrients while allowing the healthy baby to take in everything she needed.

The waitress said her healthy girl is a miracle. I couldn't help but think that the unhealthy baby made the ultimate sacrifice so that her sister could survive. It is a beautiful and tragic story. She told me to embrace the happiness that my healthy baby will bring me. She said it's all you can cling to.

This whole conversation lasted less than three minutes, but I will never forget it. I met someone who was proud to have had twins, suffered a terrible loss, and has gone on to enjoy her healthy daughter while never forgetting her other baby. She showed me that surviving this is possible.

Never underestimate the power of a simple exchange.

Monday, December 12, 2011

Can They Tell I've Been Crying?

Sunday nights are the worst.

I distract myself all weekend with errands, shopping, and usually eating, and then it all comes to a screeching halt on Sunday night. While Brad kills zombies on the PS3, I lay in bed and all the things I've been putting aside rush into my head. I have tried reading, watching TV, even yoga stretches to calm my nerves, but nothing has helped yet.

I cry myself to sleep and Sunday night sorrows bleed into Monday morning. It's not that I dread the workweek. I have a good job and I work with good people. My manager has been very supportive and has never asked me to justify a long doctor's appointment or a day off. But still I make the 40 minute commute through a fog of tears.

This happens every Monday.

I'm not the most prompt person in the world, so by the time I arrive at work, the mail clerk is usually on his way out the door. He is a friendly man whose wife recently delivered beautiful triplets. We exchange sympathetic smiles - I know that he is probably getting no sleep with his three new babies and he knows that I feel like a whale with these two babies inside, but I don't know how much he knows.

During our whole exchange, I wonder if he can tell I've cried the whole way in. If he can, he doesn't say a word.

As the week goes on, I have good days and bad days. Lately, the bad have been outweighing the good. I try to keep the positive thoughts top of mind, but I cannot fight the fact that every day that passes brings me one day closer to losing my Spyder. Every birth announcement at work, toy ad in the paper, even seeing Santa at the mall - happy, joyous things - reminds me of our impending loss.

So I cry. Unashamed, I let the tears roll down my cheeks. But then I worry - can the babies tell I am crying? Can they sense my emotions, hear my sobs, feel my sadness? And this helps me stop. My babies need to know how happy I am to have them, how filled with love I am. Then the joy ushers in the sorrow and the grave cycle begins again.

Can the babies tell that I've been crying? What about my colleagues or the other drivers on the road? Yes, they probably all know. But sometimes it's the only thing I know how to do.

Tuesday, December 6, 2011

The Belly Gets Showered

It has been two months today since we found out about Spyder's condition. I can't believe how fast time seems to be going, though in the beginning it felt like time was standing still and we'd never be able to move forward.

I'd say that Brad and I are doing okay today. We have already been through so much and there is much more to come. But, we have a huge team of family, friends, and medical professionals that are helping to lead us through.

I still have many bad days. In fact, for the past week, I've been in a rough place. We have to start making tough decisions and think about the future.

But, today was a good day. My friends at work threw me a shower. Well, they actually termed it "fetus party" because some of them get a little uneasy when we talk babies!

The babies can almost taste the sugar from where they are.

It had taken a while for me to decide whether or not I should have a shower or any sort of other acknowledgement at work. I was too sad when we found out about Spyder to want to celebrate anything. I was (and still am to a major extent) angry that Brad and I were robbed of the joyous pregnancy experience that so many talk so fondly of. Countless women have said how much they loved being pregnant. I want to feel that way, too.

So, my wonderful friends are helping to bring the fun back into this baby-bearing time. We celebrated my babies and my pregnancy today. They put together a comfort food potluck complete with homemade noodles, venison stew, mashed potatoes and SO much more. There was cake, a beautiful card with notes from my colleagues, and even a special retiree with whom I had grown so close. It was fun, truly fun.

Though the photo doesn't reflect it, I was so happy to see my dear friend, Tom, today.

Jen and me, the toughest girls I know! And yes, I am stuffing my face...

Thank you, from the bottom of my heart.

Saturday, December 3, 2011

The Blame Game

When something tragic happens, you really want to blame someone. It does not matter how many doctors look you in the eye and make you promise that you understand it's not anything you did or did not do. The first person you blame is yourself.

Terrible thoughts were taking over my consciousness. How could Brad love me any longer when I couldn't bear two healthy children for him? I wondered how he even looked me in the eyes. This feeling lasted a few dark days even though he was showing me nothing but support, compassion, and absolute true love.

I was running through everything that I had done since I became pregnant. I had drank a few beers before I knew, I was taking antidepressants, I had even eaten lunchmeat! But, the scientist in me knew that none of those things caused our baby's condition.

So then I blamed Karma. I have had my share of transgressions in the past 30 years. Was one of them bad enough to warrant such punishment? I didn't think so, but even if one was, why would Karma be so evil to Brad and the rest of our family when they were completely innocent?

Interestingly, for as much as I tried to push the blame on myself, I never once considered blaming Brad.

Finally, there is the easiest scapegoat of them all - G-d*. I wanted to blame Him, but how do you blame someone that you've more often than not excluded from your daily life? Many people have told me that He works in mysterious ways, He always has a plan, or He needs my baby in Heaven. Even the ancient Jewish scriptures were speaking to me about G-d's power over life and death. Days after we got our news, I attended Yom Kippur services at my dad's temple. The main idea of the service is: on Rosh Hashanah it is written, on Yom Kippur it is sealed, who shall live and who shall die.

This talk of G-d making the decision to take my baby confuses and sometimes frustrates me. I prefer to go back to a story my friend Jen told me instead. When she lost her son, she asked her aunt, a Catholic nun, if she believed that G-d chose to take him from her. Her aunt said "I think G-d was as sad as you the day Ryan died." I want to believe that He is crying right along with me.

So where does that leave us? Who deserves the fault for what's happening? Truly it is the replicating ribonucleic acid that royal screwed up when copying one little strand of DNA when either an egg or a sperm was formed. How do you hold a molecule accountable?

You don't. In the words of scholarly lyricist Michael Stipe, "stop laying blame." Once I made an effort to accept what was happening as a biological anomaly, I actually began to heal a bit. "Stop laying blame."

*In the Jewish religion,we do not write out the full "G" word. His name is not to be destroyed by throwing away a book, recycling a paper, or now using the delete button.