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Baby Yameen Diagnosed With Trisomy 18

by | Oct 5, 2015 | Baby Loss, Cesarean Section, Coping With Baby Loss, Pregnancy, Spotlight On Baby Loss, Trisomy 18 | 0 comments

The creation of human life is one of the most complex and shockingly beautiful things that our bodies are designed to do. The microanatomy that goes into this task is so astonishingly complicated that it’s a miracle any of us walk around at all.

And yet, most of us do. Most…but not all.

When a baby dies, we are fragmented. Shattered, we must pick up the pieces and put them back together as we pay tribute to our children, our tables forever missing one, our families incomplete, our treasures in heaven, our babies alive only in our hearts. It is through our stories that they live forever. These children were here and they mattered.

They were loved.

They are loved.

If you’d like to add your baby’s name to our Wall of Remembrance, please fill this out so we can properly remember your lost little one.

 

 

It all started out so happy and joyful, knowing I was pregnant again – my third child. No words could express my joy.

Five months into my pregnancy, I had an abnormal blood test. The doctor immediately sent me to see the gynaecologist. That is when all my happiness turned into a shattered dream.

The gynaecologist advised an amniocentesis. My husband and I agreed to take the test right away, but we had to wait two weeks for the results. It was agony. I couldn’t sleep at night. I don’t think anyone can worry more than a mother waiting to find out about her unborn child’s health condition.

When the test resuts came in, it was positive.

My unborn son had Trisomy 18.

I was devastated. I didn’t know where to turn or what to do. Being religious people, my husband and I decided not to terminate the pregnancy. We knew God knows best, so we left it all in His hands. I continued my pregnancy, worrying and praying the entire time. My gynaecologist didn’t support our decision. She repeatedly told us that babies with Trisomy 18 don’t survive. Thankfully, I had a very surportive husband and an understanding family.

Day to day, my bond grew stronger with my baby. With every check-up, he grew and continued to gain weight. Through it all, we kept praying. At 35weeks, my baby’s heart stopped beating, and I was taken for an emergency c-section.

When I met my son for the first time, he was so beautiful. It seemed like nothing was wrong with him. Everything looked perfect.

We laid our son to rest on the 11th of September, 2015.

I’m glad I didn’t give up and terminate the pregnancy. He was a total blessing in my life.

Medical Mystery Tour

by | Sep 14, 2015 | Anger, Anxiety, Diverticulitis and Diverticulosis, Endometriosis, Feelings, Hope, Interstitial Cystitis, Loneliness, Medical Mystery Tour, Pain And Pain Disorders, Polycystic Ovarian Syndrome, Pregnancy, Stress, Trauma | 18 comments

Riding the Medical Mystery Tour is SO MUCH less fun without the Beatles.

This is her story:

Oh how I loathe going to the doctor’s office. Unless I’m loaded up with snot, like I am today. When I’m loaded up with snot, I can get something to help the snot go away. When I tell the doctor that all the snot in my head is drowning my brain, he knows what to do to help.

Any other time I go to the doctor? Well… That’s an entirely different story all together.

Over the last six or seven years, I’ve lived with non-stop pain in the lower right quadrant of my abdomen. I’ve been poked, prodded and made to drink some of the nastiest shit in creation. I’ve had multiple exploratory surgeries and damned near every narcotic known to man. I’ve received FOUR different diagnoses for that could contribute to my chronic pain (PCOS, Endometriosis, Diverticulosis and Interstitial Cystitis), but I’ve never been given any kind of permanent clue as to what can be done to stop the pain.  I’ve been told that I can’t have such and such treatment for one diagnosis cuzz I’m being treated for another diagnosis. SO.MANY.YEARS. of never-ending bullshit have pretty much jaded me against much of the medical community.

Imagine my dismay to realize that it was going to start all over again.

I’ve been constantly dizzy since mid-January. Interestingly enough, it started about a week after I turned 30. I’ve had the continuous feeling that I’m on a boat and not in the “I’m on a boat mother fucker! ON A BOAT!” kind of way. (Which sucks cuzz I used to like being on boats, mother fucker. :-P ) Went to the doctor, who poked and prodded and couldn’t figure out a reason for the feeling, so he gave me some anti-dizzy shit and sent me on my way.

The day before Valentine’s Day, I decided to add passing out to the mix.

After many different tests, I’ve been diagnosed with Orthostatic Hypostension, which means that when I change positions (laying to sitting, sitting to standing), my blood pressure bottoms out and I wake up on the ground with no clue what happened. (Well, I don’t pass out every single time, but the potential is there.) As for the dizziness that never goes away? No clue.

I’ve had MRIs, CAT scans, heart tests… All to no avail. I get to trek on down to the University of Michigan at the end of October to see if maybe they can figure out what’s going on. So far, the only thing I’ve been able to find that fits all my symptoms has been MdDS, which apparently is very rare and can last anywhere from a few days to decades. Color me fucking excited. o_O (And just to clarify, I hadn’t been on any long trips in planes, cars or anything else, but I was INCREDIBLY stressed out due to finding out some things about my boyfriend/fiance that damned near destroyed me.)

Oh! But wait! It seems my body decided to throw another curve ball into the mix!

During all my testing to see why I’m always in pain, I was told that I’d never be able to have another child. My kidling is awesome, so while I hated hearing it, I figured that I’d at least been able to have one child, so I was lucky. Any time I was asked if I was gonna have another one, I’d always say I didn’t want anymore.

To me, it was easier to deal with the judgment of  being one of those mothers than to have to deal with the looks of pity and the empty condolences from people who never had to deal with the reality of not being able to choose whether or not they could get pregnant. After six years of being told it would never happen and having all kinds of unprotected sexing with no babies, I had pretty much come to terms with it.

Except in June, I found out that I managed to get myself knocked up.

I had a miscarriage scare in my seventh week, but things seem to be moving along well now (17 weeks). The thing that sucks is that being pregnant seems to lower my blood pressure even more, which presents a challenge.

I no longer leave the house by myself. I haven’t been able to drive since February. I have to walk with a cane, so I don’t appear to be drunk from all the stumbling around I do when I walk. I have to rely on anyone who might be willing to help me get to my doctor’s appointments and hope against hope that the offer of help isn’t just an empty promise. I lost my job cuzz I can’t work without someone in the same building, just in case I happen to fall or pass out. I don’t see any of my friends for months at a time.

And though I’ll probably never say it out loud, I’m fucking depressed as hell over this entire fucking situation. (Except for the Squishy – that’s what I’m calling the baby – THAT has me over the moon.)

I feel as if I have no one I can talk to. Whenever I go to my friends or family, I can see them tune out. I’m sure they want to be there for me or whatever, but they aren’t dealing with this shit on a daily basis. They just don’t understand and I don’t expect them to.

So, I sit in my house day after day, wondering if I’m ever going to feel better. Wondering how the fuck I’m gonna manage to take care of a baby when I can hardly keep myself from walking into the wall. Wondering if I’m ever going to receive a diagnosis cuzz I really want to know what the fuck is going on.

I’m always wondering if there’s someone else out there who might be going through the same thing. Not necessarily the same symptoms, but just the whole not knowing thing. And then I wonder if I sound like a whiny bitch when I carry on about what I’m dealing with. I don’t address this on my blog, for the most part.  While I have written about it a couple of times, I try not to focus on it cuzz I don’t want to appear as whiny or like I’m seeking sympathy or something. I hate to be pitied and I’m really trying to avoid seeing anyone feeling sorry for me, ya know?

Thanks for giving me a place to rant and rave. I don’t feel like I’m gonna told  be told to suck it up or some such shit, though now that I’ve said that I am TOTALLY expecting to get some comments like that. :-P

Is there anyone else who feels like they’re taking part in The Medical Mystery Tour?

Or am I really alone in this?

Lost In The Life I Chose

by | Jun 16, 2015 | Depression, Guilt, Happiness, Help With Relationships, Marriage and Partnership, Marriage Problems, Pregnancy, Romantic Relationships | 6 comments

I have a good life.

I have a Bachelor’s Degree in elementary education and a good, stable job. I have amazing friends and family and a husband who loves me. I know all of this. Most days I am incredibly thankful for all of it. Most days. But then, the doubts start creeping in…

Am I where I wanted to be at this point in my life? No.

I was supposed to be happily married with a home and children of my own to raise. Isn’t that what the fairy tales promise?

Instead, I got married young to a man who has this incredible potential but refuses to get off his butt and do something with it. He’s had five jobs in four years, all of them at call centers. Each time he promises it will be better, but 4-6 months in he gets stressed out and apathetic and I’m back to pinching pennies to get by.

And kids? Pffft. Right. Even if, by some miracle, I was able to get pregnant, how am I supposed to raise a child when I married one? I know that I shouldn’t expect him to change who he is to meet my expectations as he is still the same person I married.

But I’m not.

And that, I guess, is the root of the problem. I am not the same person I was two years ago, much less the six we’ve been married or the nine that we’ve been together. But, even as I type this, I feel that I am being disloyal to him somehow. He loves me. He has never abused me, physically or otherwise. I feel guilty and well, to be perfectly honest, I feel like an ungrateful bitch.

I’ve never been on my own. Never had my own space. I’ve always had to answer to or been responsible for someone else. The funny thing is, I chose this. I chose to marry the man who I knew was irresponsible. But, faced with the option of marrying or being alone, I chose marriage.

I settled, I see that now, but not in the way you may be thinking. I don’t mean, “Oh my GAWD what was I THINKING?!?!? I’m so much better than him!” What I mean is, I settled into the idea of being married because I was terrified I would never find anyone else. I was never the pretty, popular girl, with her choice of dates. I was was the overweight, mousy, wallflower trying to blend into the background.

So, when someone actually did pay attention to me, I tended to latch on for dear life.

I settled, and now…now, I don’t know. I used the Almighty Google to try and find someone who knows where I am coming from, but in every post I found there was a paragraph about how the poster had found someone better than his/her significant other. That’s not the case with me. The choice isn’t between my marriage and someone new.

Ultimately, the choice is between my marriage and myself.

I don’t even know if any of this is making sense, or if I sound like a blathering idiot…

Pregnancy By The Numbers

by | Oct 21, 2010 | Anniversary Reactions, Grief, Help For Grief And Grieving, Livng Through A Miscarriage, Loss, Miscarriage, Pregnancy | 4 comments

I hate math.

But lately, I’m obsessed with numbers.

It’s been 112 days since I got my first positive pregnancy test.

And it’s been 60 days since I had to have a D&C to remove the baby that didn’t thrive.

My period should arrive in 2 days.

But I’m waiting 5 days to test, because I promised a friend we’d test together.

She’s gone through this too.

I’m constantly counting days, averaging them out, marking my calendars, and keeping track.  Who knew trying to get pregnant would become my new full-time job?  I spent so much time trying not to get pregnant, and now that I want to?  Well, so far, it hasn’t been easy.

A friend of mine is due the day before I was.  It kills me to know this.  All the other February mommies are finding out the sexes of their babies, marveling at their growing bellies, buying clothes, furniture, and picking out names.

And I’m back at square one, thinking about things like mucous levels and peeing on sticks.

Trying to get pregnant is so sexy.

So here I sit.  This week could change things forever.

Or not.

I hate waiting…

Miscarried

by | Sep 23, 2010 | Baby Loss, Coping With Baby Loss, Grief, Help For Grief And Grieving, Livng Through A Miscarriage, Loss, Miscarriage, Pregnancy | 2 comments

I wrote the following Monday, July 12, 2010 just hours before I had a D&C procedure.

I can’t sleep. Too much on my mind. I write this with a lump in my throat.

The day before my son Lucas’ first birthday, got a positive pregnancy test. We had only been “trying” for two weeks! Can you say fertile? Stranger things have happened.

Learning I was pregnant for the first time was one of the most exciting days of my life. Not only is it a major milestone on the path of adulthood, it is one of the most joyous experiences you will ever have. I will never forget the day I found out I was pregnant with Lucas. I cried tears of happiness, excitement, and fear.

Learning I was pregnant a second time was a little more shocking for me. I had just gotten back to my pre-pregnancy weight and into my favorite jeans. The hair around my face was starting to grow back and I was FINALLY starting to get the hang of this “mommy thing.” The tears this time came from pure disbelief. I was excited but also troubled by how our perfect little family of three was going to change. I was mostly concerned with how this new addition would affect Lucas and how I might handle two under two. Doing the quick calculations, Lucas and his sibling would be almost 21 months apart.

I thought I was nine weeks along at my first OB/GYN visit when an ultrasound revealed that I was only measuring at six weeks. We were told we could have our dates off.

I’m pretty good (obsessive) with dates and knew deep down inside that something was terribly wrong.

My doctor ordered blood work to check my hCG (the pregnancy hormone) levels and more ultrasounds a week later. Unfortunately, my hCG levels dropped and we learned last Thursday that there had been no growth to the embryo since week six. I had a terrific pregnancy with my son, so why would I think anything would or could go wrong with this one? I certainly felt pregnant.

But, in the end, my gut was right. There was something wrong and this pregnancy wasn’t meant to be.

Of course, we’ll never know exactly what went wrong. Why did this happen to us? What went wrong? Did I do something different this time around? Will it happen again?

I know that miscarriage is far more common than we like to think and often times there are no answers. I’ll have to accept that. Eventually.

All I know right now is that this hurts. I’m sad and because I don’t want to wait around for my body to have a natural miscarriage, I have a D & C (a procedure to scrape and collect the tissue from inside the uterus) scheduled for this afternoon.

Please keep those of us who have been through this terrible ordeal in your thoughts. Thank you.

A Letter To My Younger Self: Miscarriage

by | Sep 15, 2010 | A Letter To My Younger Self, Grief, Help For Grief And Grieving, Livng Through A Miscarriage, Loss, Miscarriage, Pregnancy | 2 comments

Hindsight is 20/20 – that is what they say right? Do you ever wish you could go back in time – back to the future style – and share some words of wisdom to yourself? At times I find myself wishing I had that super power – or technology caught up because I could have some interesting/heartbreaking conversations with myself:

A Letter My Younger Self About: Miscarriage:

Dear Devan,

I think that you should sit down because what I have to tell you is not going to be easy to hear. It will seem near impossible but I am so sorry to tell you it is true. In 5 short years, you will experience one of the hardest journeys you will have been on in your 28 years of life and experience: 10 heartbreaking & painful miscarriages. Yes, 10.

You will bounce from worrying about ever getting pregnant because of your previous surgeries for ovarian cysts to worrying about never carrying a pregnancy to term. However, after your first 3 miscarriages you will become obsessed with basal body temping and you will be diagnosed with a short luteal phase and progesterone deficiency. Although this is part of the answer after you have your healthy boy and start trying to conceive again, you will be punched in the heart with 2 more miscarriages.

You will be strong and try to pretend this is not affecting you as much as it really is. You will not share your feelings with anyone, not your husband, your family, or friends. You will battle through it and you will be blessed with your second full-term child – a beautiful girl.

I wish I could tell you this was the end of your heartache. You will, in fact, endure 4 more and then you will become pregnant again and you will pass your 8th week and think you will be welcoming your third child in a handful of months. A phone call that literally brings you to your knees will have you broken in ways you could not imagine. Your amazing husband will be there to catch you. He will guide you through the surgery and he will be your rock. Triton will be with you forever and you will think about him a lot. After some new medical plans and medication you will welcome your third healthy child and she will bring you back from some of that darkness and sadness.

I wish I could tell you that all this wouldn’t happen. I wish I could stop it from happening. The reality is this experience, this wordless journey will define so much of who you are – not negatively. Good things will come from it – you will see just how strong your marriage is and just how incredible your husband is to help hold you up when you thought you were sinking. Your children will bring so much joy to your life because you know how much you fought and ached for them.

You will realize how strong you are and that this – motherhood – was without a doubt what you were put on this earth to do.