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.

Thursday, November 24, 2011

There’s Always Something to be Thankful For

Today is Thanksgiving. It’s a day when you get together with family and eat until you can barely get yourself to the couch to watch football. Ideally, you also take the time to count your blessings.



The Belly Gets Stuffed!

Until now, I have been rather sheltered from the ways of the world. Tragedy had yet to strike. My family is healthy and happy and we still enjoy the times we share together. I have always known how lucky I was and Thanksgiving was always a good time to reflect upon that.

Today, it would be really easy to feel sorry for myself. And yes, I let that sneak in just a little bit ago. But, I actually have so much to be thankful for.

I had gotten frustrated to the point where I was pretty sure we’d never conceive children of our own. I was researching adoption agencies, examining our savings account, and talking to those people I know who completed their families by taking in a child in need. Brad and I knew that we could love an adopted baby as much as our biological own. And then it happened, those two little pink lines. After the initial terror of what was really happening wore off, we were ecstatic. Then the second shock –  “you’ve got two in there!”

I would not trade one single moment of this crazy pregnancy. Yes, I would give every worldly possession, experience, and piece of my being for both of my children to be healthy, but I know I cannot.  I admit I have wondered if things would be better if I was a singleton with just one healthy baby brooding in me, but then I would never know my son.

Let me explain why this painful experience is also so beautiful.

Brad and I got to pick names for our babies. Our little girl is Poppy Jean – Poppy from my great-grandfather and Jean from Brad’s grandma. For our tiny boy, we chose a name that represented us and his purpose in the world. He is Spyder Blayne Conlin Deering. You don’t have to like it, but Spyder has real meaning to us, and you understand that if you have spent any time with us in the woods! Blayne means twin in some etymology, and Conlin represents the fact that he is our little hero. So now we have Poppy and Spyder.

Yesterday, we had our bi-weekly ultrasound with Debbie, who has to be the best of the best, to check on Poppy and make sure that the risk of early labor is still not elevated. While examining Spyder’s profile, he displayed a yawn right on the computer screen. And Debbie caught in on video! Just seeing his little mouth open and tongue stick out like a newborn baby made me know that my son is real, alive, and having experiences, whether he’ll ever know it or not.


video


Then it was Poppy’s turn to show off. As we looked at Spyder’s curved little legs, Poppy’s leg came swiftly into view and gave Spyder a hefty kick. We could not help but laugh – Debbie included. I might never get to yell at them for such behavior as children, but right now I know they are a very typical brother and sister.


video


Finally, I would be more than remiss to neglect thanking all of you. I have heard from so many people, and I know it takes courage to overcome the discomfort of an awkward situation and the distance that time creates. But, every set of eyes on this blog, every message in my Facebook inbox, and every note of encouragement is a gift. Every prayer uttered, tear shared, and positive vibe sent is like another pair of hands leading Brad and me out of the darkness that is our despair and into the light of the future, showing us that we truly can be thankful.

Monday, November 21, 2011

Thanatophoric Dysplasia - A Crash Course

I find it amazing that the friends you make in your childhood can remain the ones closest to you as you age. One of my first great friends was Bill. We have been friends since 5th grade and I graciously assumed my role as "one of the guys" throughout high school. I know a lot about Bill - his aspirations, his baseball injuries, and absolutely, his crushes.

The most important crush he ever had was Becky. She was a few years younger and was of course a threat to our single way of life. But, about 15 years later, Becky is Mrs. Bill and they have two beautiful children together.

I tell you this because Becky is not only a great mom and wife, but she is a neonatal ICU nurse and was the first person I turned to when my mind flooded with questions. I trust her and I knew she'll give me the real answers, no matter how painful. And she did.

Brad and I had been frustrated. We couldn't remember exactly what Dr. Amburgey had said our baby boy's problem was and my OB wasn't familiar with it to give us the right answers. The typical pregnancy questions like, am I gaining the right amount of weight, will I have to go on bed rest, and can the twins punch each other through their amniotic sacs, were replaced with terrifying uncertainties:

Is this hereditary?
Is it from the medications I have been taking?
What will I feel if he dies inside me?
Could his death cause me to miscarry the healthy girl?
Why exactly can't he survive?
If he does survive until delivery, how long will he live?
What will it be like if he is born alive - will he cry, will he be asleep?

Between Dr. Amburgey and my dear Becky, Brad and I have pieced together some information about our son's condition.

Our baby's condition is called thanatophoric dysplasia. Thanatophoric is a cryptic Latin term meaning death-seeking or death is coming. Dysplasia describes abnormal growth or development. My only experience with these terms was the fact that our chocolate lab has hip dysplasia - I thought it was something that happened to animals.

In essence, the baby's body is the right size, but his arms and legs are very, very small. They are not straight like his well-developing sister. Instead they resemble a telephone receiver. At our most recent visit, we learned that his head is misshapen and there is a disjoint that will not connect before birth. The fatal aspect of this condition is that the space between his spine and rib cage will not allow for proper lung development. As our genetic counselor, Carolee, explained, even if you could magically open the rib cage after birth, the lungs would not know how to inflate.

Carolee also calmed our fears that we have caused this ourselves. She said no medication or any amount of drinking or crazy behavior would cause this dysplasia. It is likely caused by a spontaneous genetic mutation. A simple error in DNA replication that occurred during the development of either the sperm or the egg, well before conception. It is just utter bad luck that the mutated zygote is the one that led to our little guy. We will have more testing after he passes to assure that this is not a hereditary condition.

Our son should live to delivery. He does not need lungs while he is safely attached to the umbilical cord and sharing my oxygen stores. I am keeping him alive and it absolutely destroys me that one day I must sever that physical lifeline. In the meantime, I am to nourish and care for him as if he will live a healthy life. I have learned that he gets excited when I eat Taco Bell.

Right now, the doctors' main focus is on our healthy baby. Because our babies our most definitely fraternal - from two eggs and two sperm in their own amniotic sacs - our son's condition does not at all affect our daughter. The main risk is that of early labor being cause by excess amniotic fluid in the boy's amniotic sac. For some unknown reason, fetuses with skeletal dysplasias run a higher risk of poly hyperamnious, or too much fluid.

That's where Debbie, our sweet, skillful ultrasonographer comes into play. We have a standing date every other Wednesday at 8 am to measure the amount of fluid around each baby. In contrast to the very first ultrasound when you fall in love with the tiny blob image and beating heart, I hold my breath until both babies are identified and their heart rates are measured. Then I wait for the a-okay on the fluids. Finally, I look at my baby boy who is unwittingly twisting, punching, and mooning his sister. I can't prevent the tears, but I think they are partly those of joy that they have each other for these precious nine months.

Delivery day is still something I cannot think about without wanting to get physically sick. I am terrified, anxious, excited, and sad. We don't yet know what type of delivery I'll have. They'll do what is best for our little girl. Our son may be stillborn or he may live a few minutes to a few hours. He might cry or he might sleep. All we hope for at this point is that we have a chance to hold him and let him feel safe and loved.

Brad and I don't need to face delivery or any of this process alone as we had thought in the beginning. We have the most amazing family and friends that have helped us through this past 6 weeks. And, our doctors and specialists reminiscent of angels. I tell them at our appointments that I am so glad there are people in the world like them.

Accept all the help that people are willing to give you. There are so many people out there whose goal is to make this process a bit more manageable. We have our OB, maternal fetal medicine specialist, genetic counselor, therapist, and family support coordinator from perinatal hospice.

We are no longer alone. We have an army of love and support looking out for our babies.

Friday, November 18, 2011

The First Few Hours

We've all been to funerals. You mingle with other mourners, hoping that your presence will comfort the bereaved. Sometimes there is a meal to nourish your body as well as your soul. Then the crowds disperse. I've often wondered what those first few hours and days are like for the wife who just lost a husband, the child who lost a parent, or even the parent who lost a child. What is it like when you are completely alone?

While we knew our baby was still alive, Brad and I still experienced those first few hours of complete agony and loneliness. We were in shock, absolutely desperate to wake up from the nightmare we were both convinced we were trapped in.

But there was no waking up; this was real. Like a mourner, we each reached out for something to comfort us. I fully admit that had I not two little lives inside of me, I would have headed for the strongest bottle I could find. But, that maternal instinct, which up to this point had been some fabled thing my friends told me would happen, allowed my better judgement to prevail.

All I knew to do was sit outside. For some reason, the weather was absolutely beautiful. It was probably 70 degrees and the sun was shining down on my darkest day. We both just sat. And cried.

Brad somehow remembered that the doctor had called our baby's condition skeletal dysplasia. He started to look it up on the Internet. Finding information helps you to understand what the doctors are telling you. But, he couldn't find anyone else that was in our position.

It's hard to recount all of the thoughts that ran through my mind. I felt like I was a terrible person because I couldn't even mother two healthy babies. It had taken about three years to get pregnant in the first place. The endless months of disappointment wears you down and makes you feel so incompetent. Especially when all the tests say that you are fine. So, to compound that insecurity with this failure was a huge blow.

Rationally I knew that our baby's condition had nothing to do with Brad or me. Dr. Amburgey assured us that nothing we did or did not do caused this. It was all a genetic mishap. But try telling a desperate mother that. We didn't do anything to cause it, but there's absolutely nothing that we can do to fix it. The only thing that made it real was looking at the ultrasound pictures. There was no doubt that we couldn't help our baby.

Our healthy baby girl:


Our baby boy - note his curved spine and his head shape:

As we sat on the patio, we tried to figure out how to tell people what was happening. Our families knew how bad we wanted these babies, and we knew they would be heartbroken. My girls at work were so anxious to know if we were having boys or girls. Were we ready to shatter everybody's hopes?

A blue-headed vireo suddenly appeared in our yard. Brad and I are big birders and this was the first time we've had one of these pretty little guys in in our trees. He was like a harbinger of peace and comfort. The world was still spinning around us though we were frozen in despair. It was time to tell others.

I sent a simple text message to my friends:

One baby is not gonna make it. Problem with skeleton development. No room for lungs and fluid on brain. We're pretty devastated. Please tell people so I don't have to. Not sure what's gonna happen at this point. It might die in utero but if not it will die when it is born. But, other baby looks okay and is a girl.
 I sent a similar message to my sisters-in-law. I couldn't actually speak.

The first person to call was my friend Jen. Jen is the strongest person I know. She lost her son when he was two weeks old and was diagnosed with cancer very shortly thereafter. We celebrated her being five years cancer-free last March. I hesitantly answered the phone but could only mutter hello. She told me that Brad and I were stronger than we even know and we will find that out. I didn't feel strong, but I knew that she was speaking from experience. That was the first time I didn't feel like I was completely alone.

It was finally time to tell the families. It was after five o'clock; they'd be home. Brad went inside to talk to his mom. He talked to his dad later and gave him the details. I called my parents and my dad answered. I tried to start a normal conversation, but then I had to tell him. I said, first of all, one baby is okay. But, the other baby isn't going to survive. I told him everything I knew up to that point, which wasn't much. I also spoke with my mom. I told her about the selective termination option. I couldn't actually say the words. After years of dreaming of being a mommy and daddy, I could not believe that the idea of ending one of my baby's lives was even on my mind. But, I told my mom, we have to do what is best for our healthy baby. Both of our families vowed to support us no matter what. Oh, and the other baby is a girl, we got to tell them, almost as an afterthought.

Before you stop reading or get too upset, we did not terminate our baby boy. It was not the best option for us or for our healthy baby. We are very happy with our decision to carry him on until his birth as heart wrenching as it is. Hearing that his development should not hurt our other baby was the biggest relief that Brad and I have had so far.

All that being said, I learned a valuable lesson, even within those first few hours. You truly do not know what you will do until you are faced with a terrible decision. Ohio law has just made it illegal to terminate a fetus after 20 weeks of gestational age. Most women do not get their first ultrasound until 20 or 22 weeks. It is too late for them if they find out that something fatal is developing in their baby. I thought I knew my personal stance on termination. But, if I only had one baby and he had this condition, I do not know if I would have the courage to carry him to term. I just do not know.

Wednesday, November 16, 2011

"I'm Not Allowed to Say 100%, But"

There comes a time when a doctor has to tell you the absolute truth. For us, it was October 6th at the maternal fetal medicine department of Grant Medical Center in Columbus. My husband, Brad, and I had found out in August that we were having twins. It was a terrifying and beautiful shock. By October, we were ready to find out if we'd be playing defense against boys or girls.

In my head, I was looking forward to a day off of work, an exciting ultrasonic glimpse at our future family, and hopefully a huge cheeseburger at Thurman's down the road from the hospital. An ultrasound at a maternal fetal medicine specialist is typical for any multiple pregnancy, so I was not worried about anything. I had butterflies in my stomach (and it was too early to feel those kicks).

About an hour into the measurements, the ultrasonographer stepped out to show the images to the doctor. Brad and I glowed with the joy of seeing and hearing our babies' heartbeats, Baby A and Baby B - concrete evidence of the lives forming inside my body.

When Dr. Amburgey, a tall, brown-haired lady who spoke with a gentle voice, walked in, we were all smiles. Looking back, she didn't shake our hands, she patted by knee and walked right up to the ultrasound machine. First, she told us that Baby A's arms were shorter than they should be. So are his legs.... Okay, maybe she'll tell us he has dwarfism. Maybe he'll need surgery or a wheelchair... and there's a problem with his chest cavity. The space isn't right for growing lungs... Will he need surgery?... His head is slightly misshapen....         ... I'm not allowed to say 100%, but this will be fatal.

I don't remember much more than this. By this time, I was well within the throngs of a panic attack, crying, hyperventilating, and in a cold sweat. My world ended. I remember trying not to make eye contact with Brad. I didn't want to see his face. I've never seen him cry and I wasn't ready to. Not like this. I thought the first tears I would see of his would be at our babies' birth. Tears of joy, not absolute despair. He held it together.

Dr. Amburgey told us we had options - let the baby go to term, watching closely to make sure he doesn't affect the other baby or terminate the unhealthy baby. That's how we left it. That and an appointment for three weeks later.

Tuesday, November 15, 2011

The Butterfly

In many cultures, the butterfly is a symbol of fertility. Some would say that you become pregnant by swallowing the essence of a butterfly. Others believe that butterflies provide the luck that is needed to conceive. To me, butterflies encompass all things beautiful in this world. They are free, fluttering, and individual.

Take this photo for example. On a warm summer day, my husband and I came upon this blue common buckeye butterfly gliding and sunning with its more typical counterpart. We were struck by it.


By this time, we knew we were pregnant with twins. The individuality of these two insects so closely related hit close to our hearts. Our little ones would be siblings, but each would have his or her own little personality, passions, and potential.

It was two more glorious months before we knew that our little blue butterfly would not fly on through his life.

Right now, the butterflies that I know come in the form of little kicks and twists inside my belly as my babies practice for their lives outside the womb. My son and daughter flutter as if they are both healthy and preparing for the world. But, this is not the case. 

We will lose our baby boy. My husband and I are waiting for his birth and death like a butterfly awaits the first murderous frost. This is our story. This is our journey as we carry our twins to term, knowing only one will be coming home with us. I am not writing for pity or to make readers feel sad. I am writing in hopes that there are mothers and fathers who understand our devastation and might find some comfort in knowing that they are not alone - no matter how desolate they feel.