by Band Back Together | Sep 7, 2010 | Infertility, Miscarriage |
In the fall of 2003, a couple of months after our first anniversary, my husband, Jordan, and I decided we wanted to try to have a baby. It had been my observation in my 24 years that when a couple made that decision, it was a simple matter of the Mommy discontinuing her pills, throwing away a diaphragm, or no longer getting that shot every three months. In some cases, the choice was taken away by an ineffective birth control method (Hey Baby Sis!) or the sheer stupidity of two teenagers in a back seat.
But not being ABLE to get pregnant? That thought never occurred to me. I mean, how hard could it be?
As it turns out, it can be very difficult. I think most people know that a certain hormonal cycle needs to take place for reproduction to be possible. When I came off my birth control, that cycle didn’t come back like it was supposed to, so off to the doctor I went.
My OB/GYN didn’t seem too concerned, just gave me progesterone to kick-start the cycle, then Clomid to stimulate ovulation. I know now that jumping the gun like that with no further investigation was a mistake. Hindsight and all that.
By this point, I of course had been online learning as much as I could about trying to conceive, or TTC as any of you message board veterans know it. I ended up with so much more knowledge about the reproductive process than I ever wanted. So I knew that I was extremely lucky to get pregnant on my very first round of Clomid.
Jordan and I were over the moon at the sight of that plus sign. We called our families and friends to share the good news.
Because I had used Clomid, my OB wanted me to have an early ultrasound so I went in at eight weeks pregnant. He mentioned that the baby was measuring on the small side and the heart rate was slower than it should be so he wanted me to come back in two weeks.
I tried not to worry. I just chalked it up to maybe being a few days off on calculating the gestational age. At ten weeks, I went back, this time with my husband.
“What’s conspicuous in its absence is the heartbeat.”
That’s what the doctor said to me as I was trying to register what I was (not) seeing on the screen. I’m sure you can guess how devastated we were. I hope you can because I can not come up with any words to describe it. If it helps you understand, know that now, six years later, I am trying to keep the tears from hitting the keyboard as I type.
After I was dressed again, the doctor gave me some options in his very calm, clinical voice. He told me he was on call through the next day so I could have a D&C done then, I could wait until he was on call again the next week, or I could wait and see if I miscarried on my own.
The thought of walking around for any amount of time knowing that my baby was gone was more than I could handle. So we scheduled the D&C for the next day, Thursday, April 22, 2004.
There’s not a lot of actual events from that day that I remember. All I remember are emotions. I don’t recall the ride to the hospital or the OB talking to me beforehand. I know that there was an emergency C-section taking place in the operating room I was supposed to go to, so they left me laying on a bed outside of the room for what seemed like hours.
All I could think was “Why can’t they go ahead and knock me out so I don’t have to sit here and think about what’s about to happen?” They finally came and got me. I was still awake when they strapped my arms down on each side and did all the prep work. When I woke up in recovery, I was already sobbing.
At least one of the nurses hugged me and tried to cheer me up the best she could. I honestly don’t remember anything after that. I don’t remember going home, talking to anyone, or even seeing Jordan, even though he drove me there and back.
As is usually the case, my doctor told us to wait a few months before trying again. So we did. The second round of Clomid also resulted in pregnancy. I got a positive test on a Monday. That Saturday, July 24, 2004, I woke up cramping and bleeding. I knew exactly what was going on so we headed to the ER. Obviously, at just five weeks, there was nothing they could do besides make sure it wasn’t ectopic or otherwise complicated.
The next week I went back to see my OB/GYN. At this point, he referred me to a Reproductive Endocrinologist (RE). The new doctor finally diagnosed me with PCOS, put me on some new meds, and performed a hysteroscopy to remove some polyps in my uterus. After all of that, he prescribed another round of Clomid. Again, I got pregnant right away. Remember the date of my second miscarriage? Well, on Sunday, July 24, 2005, Jordan and I brought home not one, but TWO beautiful, perfect, two-day-old baby girls.
I know that our journey to parenthood was not as dramatic or as lengthy as some. I’m thankful we didn’t have to do more, such as IVF, IUI, etc. But, just as in every life issue, knowing that someone out there has it worse than you doesn’t lessen your pain. There are women out there who have had 7 or more miscarriages. That fact certainly doesn’t stop the pain that is still inside me, even after so many years.
A mother is a mother whether her children are here on earth or waiting for her on the other side.
by Band Back Together | Sep 7, 2010 | Maple Syrup Urine Disease, Special Needs Parenting |
Before I became a mom, I had a certain expectation of what motherhood would be like. We would have a healthy baby, she would have so much in common with Lance, my husband, and I. She would be an avid reader, unable to put a book down. She would be well-spoken, and involved in theater and maybe even debate club. She would be musical, marching in the band or playing in the orchestra. She would have a regular spot on the honor roll.
When Anna was born, she was healthy. The fact that she scored 9 on the Apgar scale was a point of pride. Then, after a few days, our world slowly started to turn upside down.
When she was diagnosed with Maple Syrup Urine Disease at eight days old, a whole new definition of motherhood was thrust upon me. I had a very sick baby, with a disease with a weird name about which I knew very little, and who was potentially brain damaged. I was introduced to a world that I never knew existed.
I never knew what leucine, isoleucine, and valine were, or how much my daughter would be allowed to have within a day.
I never thought I’d be in an emergency room watching a doctor and a group of med students smell my daughter’s diaper.
I never knew how terrifying a simple stomach bug could be.
I never thought I’d have to use my entire body weight to hold down a screaming child so the nurse can insert an IV that will save her life.
I expected to use our blender to occasionally make margaritas. Not to blend a foul smelling medical formula at least once a day, every single day, for almost 13 years.
I never expected to burn out 3 blenders during those almost 13 years.
I never thought I’d have to poke my daughter’s heel/toe/finger to bleed it out on filter paper, or check urine samples to see how cloudy they are when mixed with DNPH chemicals.
I never expected to have to explain my daughter’s disorder to everyone.
I never thought I’d have to patiently re-explain when someone would say “she can’t eat meat… but she can eat chicken, right?”
I never thought I’d throw my “what to expect’ book against the wall because she was not meeting developmental milestones like the experts “expected”
I never thought I’d know what an IEP is.
I never expected to be cheering for her as she competed in the Special Olympics.
My version of motherhood never included all of these challenges. This was not what I signed up for. Yet, despite all of these challenges I’ve faced as a mom, I wouldn’t trade one of them. I will face all of those, plus whatever else MUD throws at me, because that is what it means to be Anna’s mom.
And that is a blessing I thank God for every day.
by Band Back Together | Sep 7, 2010 | Baby Loss, Post-Traumatic Stress Disorder, Stillbirth |
Twitter was there when I returned to my OB’s office for the first time after my newborn daughter died. I grew anxious as the minutes passed and she didn’t pop into the exam room. But, somehow, knowing people were out there listening as I was stuck in a tiny cell filled with pregnancy memories, I managed.
This wasn’t the first time Twitter was there for me. I reached out through Twitter and blogs just a few days after Cora died. Social media gave me purpose those early days. I wanted to share Cora, share her beauty, and the best way I knew how was by talking about her. I did constantly. And, people listened, reached out, let me talk about her. On days when I couldn’t find the words to speak, I could always find something to write.
Some of you might be aware of Cora’s story, but in case you aren’t, here goes. I had a healthy pregnancy and delivered Cora November 30, 2009. She lived five healthy days, no signs of a problem. One morning, I was breastfeeding her. I looked up for a second and looked back down and she was dead. Suddenly. Out of nowhere. It’s so traumatic. I sometimes worry I give people PTSD just sharing her story. We rushed her immediately to the hospital, but it was too late.
Turns out she had an undetected congenital heart defect. The coroner told us a few days later. We looked up congenital in the dictionary, and I took to the web. A Google search was sort of helpful. But even more helpful? Connecting to real live people that picked up on my tweets naming Cora’s killer.
What’s helped me more than anything is giving back. Cora changed me so much. I’ve never felt such love. She was stunning, in so many ways. I instantly felt a need to make sure that beauty multiplies. On most days, the only thing that keeps me from losing my mind and crawling into bed and never coming out is sharing her. Knowing she’s reaching people and saving lives.
I never thought I’d get out of bed each morning because of blogging and Twitter. I remember feeling silly at first emotionally spewing everything on my blog, but the silliness was outweighed by the support. By all the people that felt like they knew Cora and wanted to help spread her story.
Blogging gives Cora a voice. Cora lives.
People are what got me through ultimately. The power of the good of people. And, the blogging community? Full of some of the best.
by Band Back Together | Sep 6, 2010 | Anger, Anxiety, Child Loss, Coping With Losing A Child, Faith, Family, Fear, Grief, Guilt, Help For Grief And Grieving, Hope, How To Cope With Post-Traumatic Stress Disorder, Loss, Marriage and Partnership, Post-Traumatic Stress Disorder, Romantic Relationships, Shame, Stress, Trauma |
As women, we have to learn to listen to our gut. {Even when it’s telling us something we don’t want to hear.} And in March 2010 my gut was telling me one thing – loud & clear – “You must turn this ship around or it’s going to sink!”
I know, right? Clearly, something I didn’t want to hear.
You see, my son was nearly killed in an accident in July 2009 and eight months later, the bones were healing, but I was still broken. And, something had to give. I was bending and bowing under the heavy load I was carrying & I had to make a choice. The first choice that would turn my life, this ship, around was telling my husband the truth. I had to tell him of the awful thoughts that would fill my soul and haunt my nights.
I had to tell the man I love how often I had pictured him dead or dying, with our beautiful, innocent, children at his side. I had to tell him of the times I lied and told him I was sleeping downstairs, when really? I was sitting in one of the kids rooms crying. Picturing them dead. There is no marriage course that prepares you for that conversation. No book that tells you what to say when you’re wife is losing her mind.
I am blessed. And he reinforced what my heart knew and my mind couldn’t comprehend when he hugged me and held me and told me that I needed to call a doctor. {I knew in my gut that this was what I needed, but it was nice to hear him say it.}
You see, I was dying a slow death at the hand of post traumatic stress disorder. At the time I didn’t know what it was, but I knew that anxiety and fear were ruling my life. I was not living with intent.
Post Traumatic Stress had taken over & changed the woman I had once loved. It had stolen my husband’s wife & my children’s mother. I am a firm believer that life shouldn’t be the same after trauma, I expect that. I accept that. But, I also knew that I was not living and I didn’t want to settle for anything less. When you believe in your heart that one of your children is dying, is going to die, may die…there are no books or blogs or words or friendships that are inspiring enough to settle your soul.
And, even after I tucked my boy away in a bed, EIGHT long months later…safely upstairs, without a wheelchair, after a long day of school and baseball practice, I couldn’t shake my spirit of those haunting thoughts. Those reoccurring nightmares, I had when I was awake.
Nighttime would creep up on me like a thief and steal any sanity I had managed to build up in my reserves for the day. It was always worse at night.
The blackness would slip under the door frame and suddenly I would grow weak under the urge to hold my children tightly and scream into the thick air. The thoughts that filled my head were not that of a “sane” woman. I no longer recognized the woman that replaced me when night fell. The fear of losing my loved ones began to grow…and grow…and grow…
I didn’t tell the therapist everything right away. But after a week of visits, I let it all go. I told him that I pictured my baby dying of SIDS every time I closed my eyes. I would sit in her room in the dark on the floor and use my phone to light up her face so I could watch her breathe. I would rock in her room through the night and cry. And torture myself with the thought of finding her lifeless in the morning. A thought that wouldn’t let me close my eyes.
The blanket the boy brought home from the hospital would trigger phantom day-dreams that would leave me shuttering. I could hear him screaming in the night, in pain, even after the pain was gone. I would lay awake at night and watch my husbands’ chest rise and fall with each breath. I would picture how badly my heart would/will hurt when he dies, I would think of losing my parents…losing my aunts. Death consumed my thoughts.
I couldn’t drive in my car without sobbing uncontrollably. Every slammed brake or rushed traffic light would leave me in a puddle of doubt and fear. I was convinced someone was going to hit me, hit us, kill my family…
And, I knew this wasn’t right.
There were times when my mind would convince my heart that I was better off dead, rather than face the sadness the future holds. I would pray to please let me die before my children, my husband…and at times, I would even think “before my parents.” I would remember the agonizing pain of the unknown – as my son was air-cared to the local Children’s Hospital – and I would pray that the demon of memory be taken away from me.
But, as I told my therapist of my thoughts & fears…as I spoke of the anxiety that chased me in the night…the fear seemed to find a place where it could lay dormant. And I was fine with that. For now.
It’s been just over one year since the accident. And I still know that the dormant monster is waiting. Lurking…
And, there are times when I have talk myself off the ledge. Times when I feel the anxiety creeping back in. I accept the fact that life will never be the same. I accept the fact that it’s not suppose to. And, I know that with that change comes baggage, that at times will be too much to carry. But I also know I can face this demon head on, with the help of my family & friends…and even my blogging community.
I am working hard to turn this ship around. To make up for the ground that has been lost. To find my way back to the shore of safety and maybe, just maybe, even learn how to live on the sandy, white beaches of satisfaction.
Someday.
by Band Back Together | Sep 6, 2010 | Baby Loss, Coping With Baby Loss, Grief, Group B Step, Help For Grief And Grieving, Loss |
Journal entry, Wednesday, June 11, 2003
After about an hour, the nurse came to the waiting room where we were sitting, having NO idea whatsoever what was going on… thinking our baby just had a cold or something. She said ever-so-calmly but with great concern, “We have him stabilized, but you have a VERY sick little boy. He was not breathing when we got him from you.” And then we were told we could see him shortly.
***************
My baby was THAT sick? How could that be? Twenty-four hours earlier he was pink and rosy and smell-goody and perfect? Twelve hours ago he acted like he didn’t feel well, but NOT BREATHING? How did I not know that? I’m his mother. I’m supposed to know these things.
Charlie was born 20 days earlier than this-happy, healthy and alive. From the moment he was born, he was wise. People commented on that in the hospital even. He was just alert. He had big brown eyes and a look in them that would melt your heart. In hindsight, he wasn’t meant for worldly things. He was meant to be a protector… and angel.
Back to the hospital. Jason and I went to see him when we were finally allowed back into the PICU. We were gently led to the bed where part of my soul still lives. My six pound baby had ten pounds of tubes and wires and things keeping him alive. I remember vividly not being able to breathe but still not realizing the severity of the situation.
We held vigil at the hospital for the next 3 days. In that time we were told that he had contracted late-onset Group B Strep which had caused meningitis and sepsis. They did a spinal tap which showed his spinal fluid looked like Jell-O instead of water and a CT scan showed most every part of his brain had had massive strokes, including his brain stem.
At last we were taken to the “OH SH*T” room where we were told our baby wasn’t going to live. He wasn’t going to have a first birthday or a first day of kindergarten, would never play t-ball or football or get a high school diploma. He would never meet the girl of his dreams and have beautiful babies and name them after his wonderful parents. In that tiny, dark room, our hopes and dreams were shattered.
On Friday the 13th, the most unnatural day to do this, we made the decision to turn off all support to our pride and joy. But we wanted to do it on our own time. And we weren’t ready right then.
Saturday morning started with my sister coming and bringing all the hats Charlie had received for gifts. For six hours we played “hat of the hour” and changed his hat and took pictures. He was held by us, his grandparents, aunts, uncles, anyone who came by and wanted to. It was a parade of visitors that day and for most it was the one and only time they had seen him. There were enough tears to fill a bathtub from friends who had driven several hours to pay their respects to our son before he took his final breaths. I can’t tell you how much that has meant to us over the last seven years.
At 5:00 on June 14th, 2003, just one day shy of his original due date, we gathered with about 2 dozen very special people in the tiny PICU room and our preacher had a baptism for our most precious son. Charlie was in a beautiful white t-shirt, a green and blue hat, holding his silky blanket and puppy dog. Our preacher spoke a few touching words that I wish I remember and baptized him. My sweet Aunt Diane started singing “Jesus Loves Me” and I remember sounds of moaning and crying coming out of mine and Jason’s mouths that in hindsight don’t seem human.
After everyone left the room, we were left with our son. Our intensive care doctor, Dr. Clark and nurses Julie and Tina there to help with the removal of support. In the next 43 minutes there were tears, kisses, touches, words of love and more tears. We were later told by Tina who was in the room, that as the machines flat-lined, a big ray of sunshine came in through the tiny crack in the curtain. It had been raining for 4 days non-stop so the ONLY explanation was that Charlie’s soul was leaving the room. At least that’s what I’m sticking with.
Charlie was bathed, wrapped in swaddling clothes and taken to the funeral home. Jason and I retreated to our home and opened the door to our new normal. And as our world stopped, everyone else’s went on, waking up to greet their Daddy’s with breakfast and homemade cards and fun on Father’s Day.
We woke up to the truth. That our lives would never be the same.
