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, November 17, 2012

World Prematurity Day

Wow, it's been so long since I've written, I almost forgot how to login! That's because our little Poppy never sits still. And, if she sees the computer out, forget it, she's ready to type. But, she's taking a bottle and watching the Buckeye with Brad, so I grabbed the opportunity!

Why did I  choose to write today? Today is World Prematurity Day. From the March of Dimes website: Honor the more than 1 million babies worldwide who died this year because they were born too soon, and the 14 million more who struggle to survive. November 17 is World Prematurity Day and when we focus everyone’s attention on the serious problem of premature birth. Unfortunately, Ohio scores a "C" in the 2012 Premature Birth Report Card, which actually lines up with the national average. I suppose Poppy and Spyder count as statistics in that assessment.

Poppy will be 10 months old next week. She crawls around the house chasing the dogs, climbs stairs, and even balances when she lets go of the couch she's clinging to. It won't be long before she's walking. She eats all sorts of fun foods like squash, papaya, and her favorite new treat, spaghetti, all of which are best enjoyed by hand, not spoon! She has a one-word answer to everything - "ggguh!" We have whole conversations with this one, expressive syllable.

She is so healthy. At her last check-up, the doctor couldn't believe she was the same fragile girl that she'd gently examined months before. "I'd never pick her out of a group as being a preemie with a low birth weight."

It is so hard to believe that 9 months ago she was hooked to monitors, feeding tubes, and blood pressure cuffs. Brad and I traveled every day to spend as much time as we could learning how to be parents in the most anxious of settings. We watched other babies come in, some with very long stays ahead of them, and others celebrate NICU graduation day by rolling out through those magic security  doors.

Then we finally had our day. We brought Poppy home on February 18th in her brown and pink winter coat, snuggled what appeared to be a giant car seat. It wasn't long after that homecoming that I came to realize the absolute life-saving gifts that the doctors and nurses at Grant have. They got my little girl healthy and strong and prepared her to take on the world.

And, oh, how she has...

Thank you from the bottom of my heart to the caregivers, nurses, doctors, social workers, volunteers, researchers and so many more extraordinary people who devote themselves to these fragile babies.

Tuesday, June 5, 2012

The Slide

When you’re clinically depressed, no amount of medication can totally prevent “the slide.” After it happens countless times, you can sense yourself falling into a dark corner of your consciousness like a slow decent into an underground cave, but you can’t turn around. You might grab at the cold, wet walls, but you eventually find yourself at the bottom, alone.
During that time, you don’t laugh, you don’t cry, you barely feel. You’re eating changes, your sleep changes, and you can’t focus on your daily tasks. You also don’t write blog posts.

I haven’t yet figured out how to prevent the slide, but I know that there is always an end to it. Mine ended on Sunday night.

I’ve lamented Sunday night before. Sunday night is when all the freedom of the weekend ceases and my mind compiles all the tasks ahead. It’s a quiet time when Brad is otherwise engaged and I am alone with my thoughts. But this past Sunday was different. This past Sunday, instead of mourning my losses and wondering why the world is so cruel, I was singing my sweet baby to sleep. I was holding onto the one thing that saved me through the past eight months – true love.

I will miss Spyder every day. My heart will ache when I see happy twins growing up together. I’ll probably always be jealous of those who don’t know pain, and I’ll continue to wonder what things would be like if I could hold both of my babies. But, I’m going to be okay. Me and Brad and Poppy – together, we’re going to be okay.

The Sweetest Sight

Wednesday, May 9, 2012

Happy Mother's Day!

Please excuse my extended absence from writing. This mommy stuff is hard!
Speaking of mommies, this weekend is Mother's Day. So I want to share with you what I wrote about my mom in a nomination for a contest.

I always knew I had the best mom, Michelle Benjamin, but it wasn’t until I was about to be a mother myself that I realized how amazing she truly is. I was pregnant with twins; one of my babies had a fatal genetic condition that would take him at birth. I needed my mom more during that time than at any other time in my life, and she was there for me every step of the way. In January, I went into labor at 28 weeks pregnant and ended up on bed rest in the hospital for the next three weeks. My mother drove from Cleveland to Columbus, two and a half hours, and stayed with me nearly every day. She was in the delivery room keeping me focused and calm when my twins were born and as I lost my son. My surviving daughter spent four weeks in the NICU and “Grammi Bear” visited regularly, learning to care for my preemie right along with me. But, the ultimate act of maternal self-sacrifice came when my mom quit her job, moved to Columbus, and became my daughter’s “super nanny.” She has left everything behind to help me and my baby.

Brad and I couldn't have made it through this past six months without our moms. They both were so supportive, loving, and strong for us. Thank you from the bottom of our hearts!

Poppy with her grandparents

Sunday, April 22, 2012

The Value of Care

I can't put a value on saving my daughter's life, but the hospital sure can - $117,372. That is the grand total for "room and board" at the NICU for 26 days. Spyder's care and autopsy was probably about half of that. Thankfully, our insurance covers most of the costs, but truly I would pay that amount and more for the love and attention that the doctors and nurses gave to both of the babies.

I am not condoning the astronomical health care costs in this country. I cannot even imagine how an uninsured mother would ever recover from a financial setback like this. I am simply saying that everything I have today, I owe to the staff of Grant Medical Center.

So how do I properly thank them all? Obvisouly, I'll start by paying my bill. I also tell as many people as will listen about the positive experience we had at Grant. But neither of those things tell the doctors and nurses how much they meant to us.

When I first went into labor, Michelle and Susan spent many unsure hours with me, helping me fulfill my "daily plan" of staying pregnant. Dr. Halpern waited and reassured me as I finally lost my nerve and broke down.

In the long-term wing, Jane brought me nail polish and Gina found me books at the library. Jen scheduled my blood draws for late morning so I could sleep in, Kelly helped throw my baby shower, and Holly kept me company at night. Drs. Alderman and Corley checked on me every day.

On labor day, Christa and Michelle waited after their shift to see the babies born. They cried in the hallway for Spyder. They hugged my mom. There were 12 nurses and two doctors making sure that Poppy pulled through and that Spyder had the best life possible. Michelle took my camera and snapped dozens of photos of Spyder with our families. Nicole, Holly, and Roberta helped me through the night and took special care of Spyder as he laid in my room with Brad and me. Holly took me to see Poppy.

Drs. Mingione and Moraille came with Kamil to see Spyder before he was taken to Nationwide Children's Hospital for his autopsy. Dr. Mingione hugged us. Chaplin Diane took Spyder from my room while we visited Poppy.

Poppy's bff's in the NICU were Danielle, Becky, Ashley,  and Sam. Dr. Naik and Char took special care of her. Dr. Moraille kept us laughing with his optimism and humor. Everyone was sad for us when we didn't go home the first time we were scheduled to, but they said they were secretly glad to see Poppy a little longer.

Poppy's bulletin board in the NICU

I think of these people and many more every single day. To them, we were patients at their place of work, though they never let us feel that way. To us, they were angels to whom we owe so much.

Wednesday, April 11, 2012

Easter Sunday

On Easter we visited Spyder’s grave. It was the first time we’ve been back since the funeral because it is in Sandusky at Brad’s family’s church.

I was immediately overtaken with sadness when I got out of the car at the church. We had come from family and fun and suddenly we were standing in the cold cemetery. Brad said it was good that Spyder was out of the bitter wind.

The site had been well cared for. Grass is starting to grow back so you can only faintly see the outline of the hole that was dug nine long weeks ago.  The decorative stone that says “those we hold in our arms for a short time are held in our hearts forever” still sits where a gravestone soon will. Brad’s parents put a decorative butterfly alongside it. I tucked a tiny, blue stuffed Peep under the stone. Poppy has the purple one.

Then we said goodbye again. We picked up Poppy and headed back to Columbus. That was our first Easter as a family.

Tuesday, March 27, 2012

You'll Be Happy Again Someday

When Dr. Amburgey gave us Spyder's diagnosis at our first ultrasound with her, she said, "this is the lowest you will ever feel. You will be happy again someday." When I told my friend, Jen, who had lost her own son as a newborn, she said "the way you feel right now will not last forever. You'll feel happy again someday." Chaplin Diane, Kamil, the other doctors at the hospital in the days surrounding Spyder's birth and death all assured us that we would be okay. Someday, we would feel happy again. I am only now beginning to think maybe it could be true.
I am still sad; I am still unprepared to face the reality of our loss. But, today the sun came out. It shined through the car windows as I drove Poppy to her 2 month checkup. I could feel its rays warming my cheeks. For a few seconds, I delighted in this simple joy. For those seconds, I felt happy.

I want to be happy and I can put on that happy face when I need to. Usually, when someone politely asks me how I am doing, I say that I'm just fine and that I'm healing. It is only an unlucky few that get the truth. I have a pain in my heart that I don't think can be healed and a guilt in my mind from being unable to do anything to save my son. For hours each day, I remember those few moments when I held him on my chest in the delivery room, staring into his listless eyes. I see Spyder every time I look at Poppy. I hold her all day long to make up for the fact that she no longer has her wombmate to snuggle close to. They should have been best friends. My interactions with Brad are timid and full of self-doubt. I'm waiting for something to crumble though I'm sure my anxiety is unwarranted. If I am not occupied with work, tv, a book, or Miss Poppy, I am crying. It's not postpartum depression that does this to me; I am just sad.

But, for some reason, today I am starting to believe that things will get better. The sun will continue to rise upon more beautiful days that I can share with Brad and Poppy. I look at my baby and I see that there is light in the darkness that shrouds my life. For the first time, I think that maybe I will be truly happy again . . .someday.

Tuesday, March 20, 2012

40 Weeks

Today is the day that Brad and I anticipated for months. Forty weeks, full-term, due date. I should have been delivering the twins today. But, instead I have a beautiful eight week old daughter and my son lives only in my memories.

Poppy Jean showing off her milk tongue at 8 weeks old

All day as I was planning what to write tonight, I was feeling sad and sorry for myself. I was thinking about how I would have still had those two extra months to prepare. I would have felt the babies kicking each other and flipping and hiccuping for eight additional weeks.

But then, I got a beautiful reminder of the miracles of life that surround us every day.

Today, my inspiration came from my Facebook news feed of all places. A friend of mine posted this morning that her little cousin, Ashton, was in the hospital, having blood tests, and waiting to have a tumor removed from his brain. I didn't know anything about him before I read her post, but my heart hurt for him and his family. Then, later in the day, my friend announced that once the doctors began surgery, they found NO tumor. What had showed in the MRI was a portion of his brain that was leaking spinal fluid. I don't know what will happen to Ashton now, but this is a very important victory for the little guy and his family.

So today I am reminded to be thankful. And I am. Had my babies been born today, they each would have weighed around eight pounds. Because he was breach and so much larger than expected, Spyder would likely have been stuck to the point where he would not have been able to be delivered, and I may have had an emergency C-section. In that case, the doctors would have knocked me out - I would have slept through the delivery and never met Mr. Spyder while he was alive.

Brad and I cherish the hour we got with Spyder

This really did work out the best way it could have. And the results are amazing. I miss my son more than I can explain, but my baby girl is healthy and at home and has reached her "developmental birthday." I am so glad for the reminder of life's miracles that little Ashton provided today.