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 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.
by Band Back Together | Sep 6, 2010 | Baby Loss, Child Loss, Coping With Baby Loss, Coping With Losing A Child, Group B Step |
Your baby got sick. Your baby has lasting health problems. Your baby died. What’s next? Who do I blame? Surely somebody is to blame, right?
Not always. *
Our son Charlie died from late-onset Group B Strep in June of 2003. He was 24 days old. The doctors said there was a 50/50 chance that he got it from labor (me) or that he just got it from “life”. So my husband and I made the conscious choice to not dwell on or even think about who or what was to blame.
That’s crazy, you say. We could sue somebody and get lots of money if they were found to be at fault.
OR
On the other hand, I could blame myself daily and end up sinking into an even deeper depression and spending the rest of my life beating myself up for carrying GBS and killing my child.
No amount of money would bring my baby back. If there were a specific amount, I would beg, borrow, steal, cheat and maybe even kill to get enough money to bring him back. I would sue whomever and whatever I could if they would bring me back my sweet, pink, smell-goody, bright-eyed Charlie.
But that isn’t going to happen. Ever. So I have made peace with the fact that no negligence was done, by myself or my husband or any medical staff, and have told that part of my grief to take a hike. I’m not thinking about it anymore.
*Exception: If there was gross negligence on the part of a caregiver, doctor or hospital, and you have the resources and truly believe you have a case, then going after compensation may be okay. I’m not attorney, but I do know it won’t bring your child back or make your child whole again.
by Band Back Together | Sep 6, 2010 | Anger, Chronic Illness, How To Help A Friend With Chronic Illness, Infertility, Invisible Illness |
Before I start, this is not your typical “I can’t have a baby post.” I am not the face of infertility, at least not as far as I know. I’ve never lost a baby. I’ve never even tried to get pregnant.
However, I do have Spondylolisthesis & Spondylosis which, in shorthand, means my vertebra on L4, L5, and S1 have less space between them than they should and have slipped forward.
This causes the muscles in my mid and lower back to try and compensate for what my spine can’t do, which leaves me in near-constant pain. I currently take medications for the joint inflammation and the pain. If I were to get pregnant, I’d have to stop taking the pain pills in the last trimester, be on bedrest for at least that long, and have to choose between breastfeeding and pain pills.
I’ve trolled through every forum related to my condition and pregnancy. It seems most women have experienced horrific pain during pregnancy that, in some cases, never went away. Many say that though their children are worth it, getting pregnant was the worst mistake they’ve in regards to their back problem. Some doctors advise having surgery to fuse the slipped vertebra together, a surgery with a six month recovery time, before attempting a pregnancy.
Even if I could quit work and devote myself entirely to a pregnancy, I worry the pain will make it impossible for me to care for a child. As it is, it takes everything I have just to get up the subway steps coming home from work. If I have to stand for the whole forty minutes on the train, I’m crying by the time I get home.
When I consider how many times a day a baby needs to be picked up, how heavy a car seat is, and how much energy it takes to keep up with a toddler, I know it’s totally out of my physical capacity. Plus, both Spondylolisthesis and Spondylosis are hereditary and I’d never want to pass this kind of suffering on to my child.
I know there’s always adoption or surrogacy, but they’re just not for me.
Selfish as it may be, I want the experience of carrying and delivering our child. I’ve spent a lot of years telling myself I didn’t want kids, but now that I’m with an amazing man, the tick-tocks of the clock are getting louder and I think I may want them…and the idea that I probably don’t have the option is crushing. When I see pregnant women or little girls with My Love’s shiny black hair, I’m hit with a wall of sadness and longing. Something inside tells me that’ll never be me.
So The Band, what do I do?
How can I accept that pregnancy and raising a child aren’t things I’m physically capable of doing?
by Band Back Together | Aug 15, 2010 | Baby Loss, Child Loss, Coping With Baby Loss, Coping With Losing A Child, Loss, Marriage Problems, Pregnancy, Sadness |
again. my spirit, that is.
its one of those days where i have to consciously push against the gravitational pull of grief.
it has been a week since T left. it has been almost ten months since i was pregnant with my babies
by accident i typed ‘ten weeks,’ realized that it has been so much longer than that and just crumbled.
where did all the time go?
i have never been prepared to not realize my goals or get where i want to be in life. i am intelligent and capable. i am kind and helpful. i go over and above in almost every exchange and interaction.
but none of that means anything, and failure could be here to stay.
i feel very alone, and not because T isn’t here, i have felt this way even while in his arms.
i’m not the person i thought i would grow up to be and i’m not sure how to live as the substitution
