Today’s post was written by Belinda, our Preemie Parent Mentor for preemie loss and the loss of a twin. She shares her story of pregnancy, loss, and premature birth below, and talks about why National Pregnancy and Infant Loss Awareness Month is so important.
Well, it is October. It used to be one of my favorite months/time of the year for so many reasons. But life has a way of changing our favorite things- not always for the better.
When I was younger, not much younger than I am now, I loved October because it meant fall. Where I live the leaves change into the most extraordinary colors and the smell in the air makes me think about school and packing my book bag (which I haven’t done in AGES). It always felt like the beginning of something exciting. Maybe it was the anticipation of my favorite holiday because I loved Halloween. Halloween is like Christmas but different. There was a certain magic to it like Christmas but the magic was something you created not something you anticipated. I loved dressing up and trick-or-treating as a kid, going to parties or answering the door to kids’ excited faces as they yelled “TRICK OR TREAT!” I mean, is there anything better to a kid then dressing up and pretending to be something or someone else for a night and get free candy?
I loved October also because it was close to my birthday in November. As long and crazy as our winters are here, I love the coming of the winter, the kickoff of the holidays and of course FOOTBALL! Imagine my joy when I learned in February of 2011 that I was pregnant, a very unexpected/planned surprise. I also found out a short while later that I would be bringing fraternal twins into the world and that they would be born in November (but more likely October as my OB would tell me as twins usually come around 36 weeks). Yes! How much happier could a girl be, who was once told she may never have children, to be learning that she pregnant with twins during her most favorite time of year and just before her birthday? My head swam with the ideas of coordinating costumes (Thing One and Thing Two from Dr. Seuss was one that came to my head after my very best friend had bought onesies for the twins).
I was so excited! I couldn’t wait for them to come, to meet them, to hold them together. I felt so blessed, so lucky. I imagined the holidays with my family members oohing and aahhing over the twins, the pictures, and snuggling indoors during the colder months. I thought, how cool would it be it they were born on Halloween or on 11/02/11! That would be the BEST birthday present EVER!! I had thought I would try to take as much time as I could with them before returning to work. Each month brought new things to learn about the twins and anticipation built. I just couldn’t wait for them to be here! They were a part of me even before I took a pregnancy test at 5 weeks. I knew they were rooted deeply in my core. I was overwhelmed but I couldn’t imagine not having them.
Life has a way of turning everything upside down. Tragedy struck before their due date of November 4, 2011. On August 3, 2011, while I was cleaning my truck that I sold in order for me to buy a more “mommy vehicle,” I felt a pain. I called my OB who told me to stay home and come in the next morning. That morning was August 4, 2011, 27 weeks into my pregnancy, a date that will forever remind me of how precious life is. There I was waiting to have another ultrasound and wondering what they would like now as it had been two weeks since the last one. What antics would they have in store? The ultrasound technician was very quiet and then she said she was unable to locate my son’s heartbeat. I at first thought she was kidding, not a funny joke but the kind that makes your heart stop until she says, “Everything is ok and that she actually hit a wrong button”. And it had to be a mistake because my son, Colton Matthew, was the bigger twin. He was so active, unlike his fraternal twin sister, Amelia Rose who was having a bit of trouble and needed extra monitoring. When the ultrasound tech got up and left the room with the screen still displayed in front of me and my mom, the imagine of my twins: one full of life and the other not- I felt my heart shatter into a thousand pieces. And there was NOTHING I could do. I PLEADED, I BEGGED my OB to intervene my son was fine just the other day. I would listen to their heartbeats with a Doppler at work or the ultrasound tech would let me sneak a peek.
Being a nurse for 8 years, I KNEW there had to be something that could be done. But he said it would have been too risky with Amelia sharing the womb and with those words that was the end of my son’s brief time with us, the last time we three (I called us the ABC’s) would be together on earth. I was grateful and dismayed to be carrying him when he passed; I knew he was not alone, although the thought to this day makes me well up with tears. He was taken too soon.
Thirteen days later, Colt’s twin sister Amelia, came emergently into the world. It was a beautiful day, clouded by the sadness that her brother did not come with her.
It wasn’t until a year later that I learned that October held significance other than fall and leaves changing color, Halloween and trick or treating. It is designated as Infant Mortality Month. It is a month for us to take a moment to think about all the mothers, fathers, sisters, brothers, families, and friends who had someone so precious taken from them much, much too soon. It is an important month, one I wish was not significant for the loss of my baby or anyone’s baby. You never think that losing a baby or a child can ever happen to you, especially when you thought you did everything right. Every day has been hard since that morning in August, but each day is met with hope that I will one day see my son again.
I was asked in September of 2012 to speak at a press conference about how or what October and Infant Mortality means to me. I prepared a speech, practiced it over and over but could never get through without breaking down. Nothing, no amount of preparation can prepare a mother for this and I will never be the same. I am grateful for the 27 weeks that I was blessed to carry him and that he did not die alone.
I know this is not the kind of blog anyone wants to read or hear about. When I tell the story of our twins, I have been told by enough people, many of whom are family and friends, that “no one wants to hear that.” I wish this was not our story. I sometimes hold it back or lie and act as though they are both alive and thriving, which makes me feel they are. There are so many different ways I have either told or not told our story. I still haven’t figured it out.
As if losing a baby was not hard enough, his surviving twin was in the NICU. It was almost a month before I held her or heard her sweet cry. Every night I had to leave her in the care of strangers. I couldn’t hold her and rock her as most new mothers get to do. I couldn’t sleep near her. I missed out on all the things most first time moms experience. It was awful and scary and traumatic. Amelia spent a total of 167 days in the NICU. Those strangers became our friends and some became like family. However, she had a poor prognosis of living till her first birthday. My surviving twin turned 3 in August and she is amazing!
Amelia IS a twin and she will always be and I will always be the mother of twins whether that makes anyone uncomfortable or not. I used to care about how our story made others feel. I know her brother Colton has been looking out for her and is helping her get into enough mischief for me to feel like they are both living. I know death is something no one likes to talk about and even less when it is about a child. I am trying to honor my son and not be so sad but to find ways to be positive (which seems so impossible at times) and to live my life somehow without him. During one of many difficult times in the NICU, Amelia was thought to have gone into heart failure. A pediatric cardiologist discovered that Amelia had two Superior Vena Cava’s, which he said was interesting because that was more common in patients with congenital heart disease (which, Amelia does not have). I smiled at him, through my tears, and said, “It makes perfect sense to me. Her brother gave her a piece of his heart so she could live”.
If you have lost a baby or a child, please, try to find ways to smile. Please try to be kind to yourself and know there will be good days and really bad days. Know that no one will ever feel what you feel but there are others who have lost and sometimes it really helps to talk with someone who can understand. You are NOT ALONE. And for those of you reading this who know someone who has lost a child, even if you can’t imagine or you don’t feel you can voice your feelings the way they might, please think about what you say and how it may be heard, please don’t walk away from them (they feel isolated as it is) I have had close friends that no longer speak to me and I am sure it is because they can’t relate (which is ok) but also because they can’t deal- which isn’t fair- I can’t always “deal” but I still have to live with it.
Don’t be someone who can’t deal, be there even if you say nothing just be there.
My thoughts and heart goes out to the parents and families and friends who have lost.
I am not very religious, but I believe in God. One of my friends passed this poem to me and I am sharing it with you:
Mommy please don’t cry
Cause I am in the arms of Jesus
And He sings me lullabies
Please try not to question God
Don’t think He is unkind
Don’t think He sent me to you
And then He changed His mind
You see, I am a special Child
And I am needed up above
I’m the special gift you gave Him
The product of your love
I’ll always be there with you
And watch the sky at night
Find the brightest star that’s gleaming
That’s my eyes shining bright
You’ll see me in the morning frost
That mists your windowpane
That’s me, in the summer showers
I’ll be dancing in the rain
When you feel a gentle breeze
From a gentle wind that blows
That’s me! I’ll be there
Planting a kiss upon your nose
When you see a child playing
And your heart feels a little tug
That’s me! I’ll be there
Giving your heart a hug
So, Mommy don’t you cry
I’m in the arms of Jesus
And He sings me lullabies
For those who have baby’s or have had baby’s in the NICU:
“A NICU Prayer”
I have a request to make.
Just a moment of your time it will take.
You see, my parents, are heartbroken and sad,
and they have prayed with all they had.
Could you just hug them and remind them you care,
as they are wishing I was home, not here.
This time is confusing, unlike how they pictured it would be,
But I want them to know that you take care of me.
Although I am sleeping in this little bed,
and I am often too tired to raise my little head,
please remind them that I know they did their very best.
And that at night I am protected as I sleep upon your chest.
They think I am so lonely when they are away,
and if I could tell them, I would say
I know this is hard, and God understands,
But just know He has never let go of my hand.
He is always with me, like He is with you,
and all this has a purpose too.
And God, while I am in this temporary N.I.C.U. home,
I just want them to know I have never been alone.