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Wednesday, December 31, 2014

2014 - a year of lost battles

2014 was the year I lost everything. The year I have felt the happiest in my entire life- only to have that happiness taken away from me in a matter of seconds. 

I have learned to live with the pain. I have proved to myself to be stronger than I ever thought I was. 

My heart is broken and smaller; it will never be the same. I ache in places I didn't even know existed. 

The guilt will never go away. It's a feeling I've learned to manage. I don't talk about it much... I get no one understands it. Not a single day goes by that I am not reminded of the pain I inflicted on my son. It was for the best, yada yada yada. 

There's also the pain for the unknown. The pain of never knowing... Of forever wondering who they would have been.

The constant reminders of me failing at every attempt on becoming a mother (in society's eyes). If this pain I feel does not entitle me to be called mother, I don't know what will. 

But I'm still standing. I'm here to share my story and help other women back up. I am grateful to have the support of my blogger friends: your comments and emails have lifted my spirit. I have felt understood and less alone. 

I have a lot to be grateful for, though I don't feel like writing about those things. I will continue to have hope as long as my heart beats, this is the one thing I will not have taken away from me. 

Thank you, 2014. Perhaps the answer to all my questions is never asking "why". 




Tuesday, December 30, 2014

Counsyl Test Results

Warning- long post. Sorry!
--

Im surprised they are back so soon. They only tested for the one disease I tested positive for. 

This is what the Genetic Counselor wrote today:

"Good news! The results from your husband's  counsyl test are back and they are negative. I attached a copy to this email. This means the chance for the two of you to have a baby with Rhizomelic Chondropdysplasia Punctata Type 1 is expected to be less than 1 in 2,120."

This is less than .5%

The risk of having a baby with CHARGE Syndrome is 0.00008 (some would say almost nonexistent). 

These results don't mean much to me. I'm not sure what I was expecting (I think I'm past expectations now). I don't think I'll ever be satisfied with a result.  

Three months ago today I gave birth to A. I'm in a different place now. I usually don't cry during the week, I am "OK" when being around babies, and I have seen as many pregnant women as humanly possible in these 3 months. All they are is a reminder of what I'm not, but I do not envy them anymore. 

I don't wish to be pregnant. Being pregnant right now is my biggest fear. I don't look forward to a missing period or the adrenaline rush of waiting for the blood test results. 

I'm OK now. I don't ever want to be where I was 3 months ago. I don't want to know more heartache than what I have known. I do get sad every now and then, but am not hard on myself for it. I understand and accept this as a normal part of my grieving. 

I took my last pill from this cycle's pack on December 24th. I stopped it not because I was hoping or expecting these results to be what they are, but because I have not managed to lose any weight and my acne is worse than ever. I am exercising more than I have ever had in my entire life, and have been following a diet plan for two and a half months. I was also bleeding twice a month, which is a real pain in the ass. 

I will be seeing an endocrinologist next week, though I'm pretty sure that the mini-pill has made it impossible for me to lose weight. This is the first time I'm on it. The doctors at the BWH won't prescribe the regular pill since I have migraines with aura. 

I would say I'd like to just "go with it" and if I happen to get pregnant I'll take it from there, but it's much more complicated than that. Having all these results back only mean that my two losses are not related. This means that my first loss was due to low progesterone levels. I probably needed progesterone as soon as I found out I was pregnant, not two weeks later when I got home and my doctor ordered the tests. 

My range of fears is wider now. I fear losing a pregnancy due to progesterone levels, I fear taking Clomid to ovulate on time, I fear the 1-2% risk of a baby with CHARGE, I fear the less than 1% of a baby with Rhizomelic Chondropdysplasia Punctata Type 1. I fear losing a baby due to NTD. I fear chromosomal defects. All pregnancy means is fear right now. I know nothing will help me completely overcome my fears. 

I do want a baby more than anything in the world. 




Wednesday, December 24, 2014

the one thing on my mind this christmas

"I will not keep you in the shadow of my heart. Instead, I choose to speak your name, and find you in the light of each new day."
-Pia Dorer 








Monday, December 22, 2014

CHARGE results are back

Neither of us were found to carry the same mutation. This means that most likely it was a new mutation that happened sporadically in the last pregnancy. Therefore, the hospital does not expect the same complications again.

 

However, they would say the risk for CHARGE again is about 1-2%. The reason for this is sometimes egg cells or sperm cells carry mutations that are not present in the blood cells. This is called germline mosaicism. They would recommend genetic counseling in a future pregnancy to discuss our options. They absolutely recommend ultrasound monitoring and we could consider amniocentesis or CVS again if we wanted to do additional testing for the 1-2% chance.


Now we are just waiting on the genetic screening on my husband. The lab received the sample today, so it'll be 3-4 weeks before we have these results. 


Being negative for CHARGE should be a relief. It isn't. It's just another proof of my "bad luck". It's a difficult position. Today I was down to my knees and thankful we're both negative for CHARGE. But some days I wish something comes back positive for either of us so we can fix it... Getting pregnant only to find out that my bad luck continues is something I wouldn't want to go through again. 



Sunday, December 21, 2014

yet another sunday on wonder lane...

today.... and every Sunday for the rest of my life.... all I will ever do is wonder...


Thursday, December 11, 2014

expanded carrier screening

I have the results back from the expanded carrier screening. I was screened for 84 conditions. Most of these conditions are recessive, which means that both my husband and I would have to be carriers for there to be increased risk to a future pregnancy. It shows that I am a carrier for one condition called "Rhizomelic Chondrodysplasia Punctata Type 1." Me being a carrier for this condition has NO impact on my own personal health. The next step would be to screen my husband. If he is a carrier for this condition as well, then there is a 25% chance a child would be affected. If he is not found to be a carrier, risk for an affected child is drastically reduced. Even now, without knowing whether or not he is a carrier too, there is a 1 in 630 chance to have an affected child. This is less than 1%. If we are both carriers we can discuss testing that can be done on embryos before implantation, or could consider CVS or amniocentesis for testing during pregnancy.

Babies who have Rhizomelic Chondrodysplasia Punctata Type 1 are small and have bone problems, intellectual disability, and eye problems. Most will pass away in childhood.

Oh, this is completely unrelated to CHARGE Syndrome. 

Tuesday, December 9, 2014

Monday, December 8, 2014

Friday, December 5, 2014

christmas photoshoot

It's really really difficult to get my whole family in a picture (and it's only seven of us). So I started the tradition last year of having our picture taken on Christmas (mostly because of my two-year old brother). We all get matching bow ties and get together for a shoot. This year, the bow ties were black and white in memory of our babies. 

My dad is very irresponsible and got there once half of us had headed out (but that's a whole other subject), and my husband had to leave early because of work. 

Here are some bad quality pictures. I promise to put the HQ ones up once I have them. 





Before leaving the studio, I saw this on the wall. Felt like sharing...




Tuesday, December 2, 2014

a shooting star

While beginning to warm up for my workout, I saw a shooting star today. I don't think there's a better way to start the day. 

Thank you, my A. You've brightened up my day. 

I tried to post this last Wednesday as my "wordless Wednesday" and it wouldn't upload. Here it is. 

You're ever-present, and for that I'm grateful. 


Sunday, November 30, 2014

two months without you

Today marks two months without you. It feels as if it were yesterday that I was choosing colors for your nursery... 

All I have today are pictures. Pictures I constantly find myself reviewing and zooming into, trying to memorize everything I have left of you.

More often than not, I have to remind myself that men do not grieve like women do. I feel so lonely... Not even my husband understands. It's not like I talk about my feelings much, but when I do, he just doesn't get it. We have such different outlooks on the subject. 

This week has been the hardest so far. I'd wake up to workout, and then go back to bed for most of the day or stayed in PJs on the couch. I only made it to work once. Sleeping is the only thing I don't get tired of. I feel like I could do it forever. I haven't felt like doing much ever since I picked up the ashes. My shrink says I should take it slow and pamper myself.

Trying to get my life back on track, I started a 4 week meditation program on Wednesdays last week. I want to be better.

I've started running. I think if I train hard enough, I'll be able to run a half marathon next year... (funny thing about goals is the higher you reach the cooler they sound, I have yet to run a 5K without dying). I might enroll now that I'm motivated. Then I think... "What if I get pregnant? I will end up losing the money."

I hate that this year revolved around the sole thought of getting pregnant, being pregnant, or staying pregnant. I don't want to continue living around my desire to have a baby. I want to live fully, even if I don't get to have a living baby. 

I ask myself... Will I be able to do so? Will I live fully with empty arms?



Friday, November 28, 2014

what my thanksgiving looked like-

I started a list about the things I'm grateful for. And around number 3 I stopped. I do not feel grateful. My heart is shattered. I lost two babies. 

I was forced to go to dinner at my brother in law's. His wife just gave birth to a beautiful baby girl (my first due date was exactly one week after hers). And then her sister in law is pregnant and my due date and hers were about two weeks apart. Ever since I got there, I felt my tears would overflow. 

No one asked me how I was doing. People I had not seen in a while sat next to me and talked about babies and future babies and counted how many boys and girls the family has. No one talked about my babies, of course. To them, they did not exist. 

My brother in law's wife complained about the pain of pumping and about all the milk she's producing. That's when I got up and went to my niece's room. 

We spent the night watching Tangled. I didn't even make it to the dinner table. I didn't even excuse myself. And I really don't care. 

Overall, we had a pretty good time. Even if it was just the two of us. It was a perfect Thanksgiving for us. 



I cried the whole ride home. 

Tuesday, November 25, 2014

8 weeks of heartache.

Eight weeks have gone by and I feel nothing but emptiness. I miss you every day a little bit more, and my heart feels heavier every second that goes by. Yet it's smaller. It's been broken so many times and I've lost so many pieces, there's not a single thing on Earth able to mend it back together. Everything I do reminds me of you. Every child at school is a picture of what I have lost and will never get back. I've become more cynical (if that's even possible), and I've become more afraid. Afraid of death, of continuing to lose, of fighting these eternally long battles all by myself. I've become more anxious, more depressed, more alone. I have accepted that this pain will never leave me. And a part of me doesn't want it to go. Pain is all I have to remember you, the only existing bridge between you and me. I have begun to regret. I regret not holding you longer, not taking more pictures, not having brought a piece of you back with me. I regret not telling you enough how sorry I am. I regret not reading to you as much as I would have liked. I really did try my best to make your last moments here on Earth more comfortable, but I keep imagining the pain I put you through... I feel it myself. I hate myself for it. I hate that you had to suffer. I hate that I had to choose to let you die. I hate my body and I hate what's become of me. I can't think. I can't work. I can't be myself. I just want to go to sleep and wake up a million years from now. It's not always like this. I'm not always like this. There are days less painful than today. There are days when I can't wait to be pregnant again. There are others, like today, that I don't want other babies. I want you. I don't bother telling anyone how I feel, I'd rather not listen to any more "encouraging" talks. No one cares to ask how I feel either. Maybe they're afraid of my cynicism. But I don't want to be told I'm young and have time. I don't want time if it's not with you. You represent the happiest and darkest days of my life. I am grateful to have been chosen as your mom, even if it hurts this much. As long as I'm living, my babies you'll be...

Saturday, November 22, 2014

what hope looks like

Four years ago, I started dating my now husband. One of the things I loved and still love most about him is his family. I quickly became friends with his mother and sister, who in no time became a second mom to me and the sister I never had. 

Since then, I witnessed my sister's struggles with infertility. I suffered every one of her losses as my own. Throughout the years, we lost everything but hope. We had nothing to hold on to or look forward to, as every attempt on having *living* children had failed. Then in 2013, after having lost two sets of twins (the first set at 14 and 17 weeks, the second at 21.5 weeks), the surrogacy journey started. In March 2014, my favorite girl in the world was born. Sure, her cute cheeks and long lashes help, but she's my all-time favorite mostly because of what she represents. 

She's the definition of hope and perseverance. She's the perfect rainbow after a hell of a storm. 

Her sole presence encourages me to keep on, because someday I too might have a rainbow in my arms. 





Monday, November 17, 2014

the waiting game... part II

I finally got answers. Perhaps not the ones I wanted, but answers nonetheless. 

Our baby tested positive for CHARGE Syndrome. A relief, because I now know what was wrong and can continue to test to know the cause. The bad news is, this is the first time this "genetic spelling" has been found. In the world. Yes, that's right. My baby's genetic spelling of the CHD7 gene found on chromosome 8 is the first of its kind. So there's no information about it. This makes me feel special in a real twisted world... 

They ordered blood tests for me and my husband to find out if one of us is positive for a mutation of the CHD7 gene. If neither of us test positive, and this was just a random event, (which is what they are inclined to), then we are allowed to start trying on my next cycle after we get the results back. If either one of us is positive, this could indicate that the first missed miscarriage is somehow related to the second pregnancy. They then would suggest Preimplantation Genetics Diagnosis (PGD), as 50% of our offsprings could potentially be positive for CHARGE. I had my blood drawn today, but unfortunately my husband won't be able to fly to the States for a while because of work. The results will take 4-6 weeks for each test just like they did with our baby. They also did a genetic panel testing on me to figure out if I test positive for other recessive diseases that might explain my missed miscarriage other than "bad luck". I did hear the "might be just bad luck" a couple of times today, but a doctor also said "good luck was long overdue". I was comforted and agreed. 

If this was just a random case of mutation, then our odds for this happening again are less than 3%. The same doctor explained how 1% statistically means so little, but to those of us part of the 1%, especially those of us who repeatedly are members of that group, the 1% is so traumatic that it means an awful lot. I myself can write a book about the heartache that comes with being a hopefully not permanent member of the 1% club.

The PGD would take about a year. There is no known test for a mutation of the CHD7 gene to be performed on the few cells taken from an embryo, so they would have to create a special test for our family. This is possible and has been done for other families. I can only imagine how expensive this would be. I promise to do my best and not think about all of this; we'll cross that bridge if we get there. (First attempt at staying positive...) 

They suggested blood work on day 3 and a hysteroscopy between days 5-12 of the cycle 6 weeks from now, just to make sure everything's OK with me and there's nothing in there that could harm a future baby. This is only for my peace of mind and I can choose to not have it done, since it would mean me traveling to Boston again in January. Right now I think that whatever is suggested I should do, if only to not be forever wondering "what if I had done this or that test"... 

I stopped at the gift shop and bought a couple of things for a Christmas tree I might never put up... But this elf reminded me so much of my beautiful boy, I just had to have it. 


Here's to positivity during my waiting game...

Sunday, November 16, 2014

here's to answers...

My mom and I flew into Boston early this morning. I have four appointments tomorrow at the BWH. We will be picking up A's ashes on Wednesday. My husband was not able to come since he was off work for too many days when I gave birth to A. I am glad I am not here alone though. As soon as we got here, we went out searching for the perfect spot to scatter the ashes. I think this one did the trick... Hoping to get some answers and that the scattering goes as smoothly as possible...


Friday, November 14, 2014

even if your faith is broken...

November 14th used to mean nothing to me. It was a date like any other; nothing special went on. Except this year, November 14th was my first due date. I was supposed to give birth to a healthy baby just in time to dress up for Thanksgiving. Instead, I am mourning the loss of my two children. I lost two children in 2014. 

I have two pregnant women at school. The first one gave birth last week. The second one gives birth by the time I was supposed to deliver A. So there is really no escaping this feeling. Even if there's a shitload of work to do, I have two constant and vivid reminders of what I no longer am. 

Being a preschool administrator is about the worst job ever when having lost a child. Every activity is a detonator. I am a ticking bomb that is dying to go off... but for the love of kids have managed to get a grip of herself and not give in to her tears. 

Instead of celebrating my children, the lives I was supposed to bring to Earth, I am receiving birth announcements at work. Stupid emails with stupid pictures of a stork. I hear stories about women complaining about their baby crying too much, or pooping too much... I hear stories about women in my family who are experiencing postpartum depression. Jesus!! If anyone knows what postpartum depression feels like, it's me. I'd trade places with them any second. 

I can honestly say I am holding on to whatever bit of faith there is left in me. This is fucking hard. It seems like everyone is out there sprouting children, especially women who have little to no income, a couple of other children to take care of, and are teenagers. On my way to work, I see about 7 pregnant women during my 6 minute drive. 

Anyway, I'm OK. There are good days and there are bad days. I have accepted that and the fact that I can do nothing to change this. 

Next Monday I have 4 appointments at the BWH. A part of me really wishes they tell me something's wrong with me. Maybe then I'll have a reason. Maybe then I'll know it wasn't just "bad luck". Maybe then I'd have peace. 

My husband gave me a late anniversary present yesterday. I think it's the perfect way to honor A. 


Sunday, November 9, 2014

sunday bloody sunday-

Literally. After a week of no signs of blood, I've began bleeding again. There's enough blood to need to change tampons several times a day. I started last Sunday my second pack of mini-pills. This coming Tuesday will be 6 weeks since the induction. I just hope this blood is considered normal and it's no indication of something being wrong down there. 

I have developed much more anxiety than my regular "I'm overthinking" kind of days. Every time I call my husband and he doesn't pick up I think he's gotten in an accident or has been mugged. I picture myself as a twenty-something year old widow, childless. My grandfather hasn't been well during the last couple of days, and every time my phone rings I expect someone to tell me he has died. I keep imagining his death, and I often find myself crying because he'll never get to meet my *living* baby. These thoughts usually come at night so I have adopted the habit of working even later until I feel I'll fall asleep quickly. I don't know what to do to stop thinking about my fears. 

I have been thinking a lot about Christmas and how it will go down this year. When in Boston, fall was my favorite season, and Christmas was definitely my favorite holiday. The songs, the shopping, the snow. The awesome feeling of finals being over and the cheering and toasting for a new year. Flying back home to family who I'd missed dearly. And even though my grandparents didn't celebrate Christmas, these two weeks home were the best with them. 

Two and a half years ago my grandmother died. My grandfather agreed to come to dinner with us (first time in 22 years) and we dine in our matching Christmas PJs. 

This year, I had first imagined Christmas with a newborn. It would have been literally my dream come true. I've always loved the season and couldn't think of a better one to welcome my first child. We all know how this dream turned out. 

The second time around, I was cautious enough to not think of the future until after the 12 week scan. After that, I'd lie if I'd say I did not imagine myself with my big belly and matching PJs on December 24th. This isn't happening either. 

I now have to shop for all the children in our family (there are plenty), and watch the season go by as people clearly forget about the amount of pain I'm in. 

Instead of Christmas with a newborn or Christmas with a belly about to pop, I have to deal with my family asking me why I'm not coming over to their homes as often, telling me to move on, that a month has gone by and I am doing nothing to help myself, that I am "stuck" in the same place I was 6 weeks ago, and that blogging isn't helpful as it gives me the wrong idea of how I should grieve. (As if there is a standard way of grieving... As if there's a standard way to grieve when having terminated such a wanted pregnancy.)

It seems everyone but me has forgotten what I have lived. And in part, I am to blame for the pain I put myself through. I am to blame for having chosen the induction, for having been awake when the doctors gave me an injection to stop my baby's heart. I am to blame for wanting to hold my child in my arms, even if it was just for a couple of hours, even if it meant seeing his red, tiny, cold, cute sleeping self wrapped in a blanket and then taken away forever.  

Sometimes I tell myself all I need is a friend to share my feelings with. But will I ever be able to share everything that's going through my head with a friend? I don't think it's worth sharing... I don't have a single friend that would understand my thoughts. 

I proceeded to order a candle from the "I live in your light" project for our babies. I can imagine this will be the only gift our babies get this Christmas... I must admit it is quite hard to shop for two dead babies. 

Monday, November 3, 2014

the sun will rise...

It's been a month and four days since I gave birth to our beautiful A. I have begun to accept it and little by little have come in contact with the outside world. I do go to the gym at 5am and this is mostly to avoid running into people I know (there are about 6 of us at the gym at that time), but I also practice yoga in a place where everybody knows my name. I have gotten in touch with some old friends and have even met for lunch or to exercise together. 

I'm at a better place right now despite my wide range of emotions. I find myself crying, then laughing at my situation, then jealous of other women, then upset, then angry... but most of the time I feel lonely. No one here understands where I'm coming from... No one here has felt this kind of pain.

I still get upset when I see babies and pregnant women, (and I usually walk the other way when I see one, especially one I know), and more often than not I'm mad at them and am mad at the universe for not giving me a living baby. I'm mad at people who drank and smoke and did everything I did not do and still got a healthy baby... I am jealous of never being able to have a care-free pregnancy. I suppose these thoughts are common among most of us standing in this place I have yet to name. 

I know I am not infertile nor struggling with infertility. But what do you call what has happened/is happening to me? Is there a name for the situation in which I'm in? The one where you can't create viable babies despite your karyotypes being normal? I find myself wondering and searching for the correct words and answers. 

I have been trying to keep my mind at ease. I must admit this is the hardest part for me. I find myself googling everything, comparing my baby to others, trying to figure out what was wrong with him and what led to that (even though the doctors repeatedly told me there was nothing I could have done to cause it, and showed me pictures of what a baby with this kind of syndrome looked like since conception). I believe this has a lot to do with me not having any answers. I have not seen a doctor ever since the induction and won't be seeing one until November 17th, where I will see an OB for the follow-up at the BWH, and will be seeing someone from Reproductive Medicine to hear what their input is on our case and how they think we should proceed. I have not even heard anything from the pathology tests yet. I really do hope to get more answers than: "it was just bad luck". 

My first loss back in March was a missed m/c, and we did not run any tests as this was my first miscarriage and the doctors said "it was a one time thing that happens often". I ask myself almost every day why we did not do the tests. Why no one suggested we do them. Why my doctors weren't cautious enough to order these tests. I will never know if what caused the death of baby 1 were chromosomal abnormalities or genetic disorders. 

So far, all I know is that our "products of conception" are damaged. 2/2. I hear the third time's the charm.

On a happier note, this past week my third niece was born. I managed to go to the hospital and stay there until she was born. She  is beautiful, chubby, and perfect. As I saw her take deep breaths, I wondered if I will ever have the chance to have breathing, healthy children. Tears ran down my face as I realized I may never have that. Even though I've been told by doctors that I can, I have also been through enough to know that it's a matter of chance... And that there's a chance I won't have that. I hope my husband's family understands my distance and acknowledges how hard it was for me to be there. 

We went away for the weekend to celebrate our anniversary. My brother, his boyfriend, and one of my best friends and her husband came along. On our way there, we spotted a rainbow. I'd like to believe this was our baby's way of saying he's OK, and that it's OK for us to have fun.

I am grateful to have had the change to go away and free my mind, at least for a couple of hours. The weather was lovely (perks of living on an island). My husband and I got to spend a lot of time together, which is really complicated for us during the week due to our different schedules. I am so thankful to have married my bestest friend in the world.






Sunday, November 2, 2014

365 days ♡

one year ago today, I married the most wonderful man to ever walk the Earth. 
I am thankful for all we've grown this year, and for all the wonderful moments that I will forever cherish. It's been the most difficult year of my entire life, and I have him to thank for bringing out the best of me and standing by my side day and night. I would not have been able to go through any of it without him. 

happy anniversary, love of my life. 







Thursday, October 30, 2014

our story-

"I've always been pro-choice.” I read this phrase on a blog I follow. It came as a shock to me considering the community we’re in. But it inspired me to write my story, if only to be able to remember it forever. I may choose to share it when I'm ready. But for now, this is my secret... our secret. 

You see, I've always been pro-choice too. I do firmly believe everyone has the right to choose what to do with their lives. If this means ending a life that you feel cannot take care of or are not ready to do so for whatever reason, you should be able to do what you choose. You should have thought about it sooner, true, but what you choose to do is no one's business but your own.

It is a choice that will haunt you for the rest of your life. That I know. It will make your days miserable and your life hell. You will try to avoid these feelings, these horrendous thoughts... but whether it is right away or years later, the scars will show. 

Having been born and raised in a developing country, where termination is illegal, I know the odds of encountering pro-choice people in my life. So it's something I barely talk about. Therefore the anonymity of the blog.

I am grateful to have had the chance to fly to the States. To have been able to choose to terminate our pregnancy due to fatal fetal abnormalities. I am grateful to have been able to do so at BWH, recognized as one of the nation's top hospitals. I am grateful, but this doesn't change the fact that I am hurting.

Here’s my our story.

For the first time in my life, earlier this year, I felt ready to have a baby. I was happily married and had the financial conditions to bring a life to Earth. Little did I know that even though I thought I was ready, Life had an opinion of her own. I had a missed miscarriage at 8 weeks. Just a week after I had announced to my husband and family that I was pregnant. I was put on progesterone shots because my levels were lowering. I remember asking when my due date was (I have very irregular cycles), and my doctor telling me not to worry about it, that we would "talk about it when the time comes." I now know he knew I'd miscarry over the weekend.

It was Monday, March 31st. I went in for the ultrasound and there was no heartbeat. The sac had ruptured. I had two options, I’d wait to miscarry on my own or have a D&C (the latter was not really explained to me -and I didn't ask much either- except that I was to be put under and once I was out I wouldn’t be pregnant and have little to no bleeding). I had the D&C on Tuesday, April 1st. It was a horrible experience (due to the conditions the OR was in). I remember everything perfectly, and it was plain horrible. Although my heart was shattered, I was physically well. I went in to work the next day.

We were told that we only had to wait one cycle, which then seemed like forever. I was put on BC pills and 21 days later I was bleeding. Since I have such an irregular cycle (35+ days), I was put on Clomid, trying to get me to ovulate on time. Despite the Clomid, I ovulated late but somehow managed to get pregnant. I had progesterone shots every single day for 9 weeks. We got a "healthy" baby with a beating heart. A 16 week baby with a beating heart. Everything seemed perfect. My early screening (12w) was great. Not one day of morning sickness. 

At my 16th week I had an ultrasound, and immediately spotted a white bright spot inside my baby’s heart. I knew something was off. My doctors told me it was normal, that the spot would go away on its own. But I still worried. 

At the anatomy scan (I was 18w6d), we were told that the baby had 4-5 severe heart abnormalities, a brain abnormality (there was a part of the cerebellum missing), cleft lip and palate, and a two vessel chord. They suggested it would be one of the fatal trisomies (13 or 18, as I had no odds for 21), and should think about termination. I was offended. How could the doctor throw those words at me so lightly? How could she suggest termination without giving me other options? How could she suggest termination for such a wanted pregnancy? And the answer was simple: medically, our baby wasn't "viable". Medically, our baby was not a life, but a couple of organs that did work, and once born, could not work correctly without the cooperation of the rest of the body. In other words, our baby, my life, wasn't really considered a life for doctors.

We then saw a cardiologist, who got my hopes up when she told us after 2 hours of ultrasounds and echoes, that "it was fixable". Later that week, we flew up north to confirm the diagnosis. After multiple ultrasounds, more echoes, and an MRI, the doctor literally drew out for me what a "normal" heart looked like, and what my baby's heart looked like.

I'm an artist. So I can honestly say that for the first time in this entire process, I understood, without her saying a word, that my baby wasn't "fixable". She told me that the baby would most likely die in utero. I kept asking: "what if he survives?" And after carefully explaining all the medical reasons why he wouldn't, they gave in and gave a "what if scenario". If the baby survived and was born, he would not be able to eat during the first week of his life, because they had also found stomach and esophagus abnormalities. That he would need open-heart surgery a week later (if he was strong enough), and if he made it through that, he would need a couple more open-heart surgeries after. That his heart could stop any day, and that I wouldn't be able to fly to the States to fix the problem because I simply didn't live close enough. They explained the risks of the baby dying in utero. 

We then saw two doctors from Genetics. They confirmed what I had heard earlier and added: our baby did not only have fatal heart (6-8 anomalies) and brain defects, and cleft lip and palate, but his stomach was also small, his esophagus was closed, he had asymmetrical ears and eyes, a two vessel chord... all which pointed out to be a syndrome called CHARGE Syndrome, (but a real severe case of CHARGE Syndrome), or Goldenhar Syndrome (they were inclined to CHARGE but gave me both possibilities). The baby was most likely deaf and blind as well. (After birth, we also learned that one of his hands was clenched and had a slight abnormality on one of his feet, and are still waiting for the results of the genetics and pathology tests performed on him).

We had the best counseling and nurses available. The staff was great. The doctors were understanding and simply amazing. Our families were there and extremely supportive. All I could do was imagine myself in that same place, giving birth to a healthy baby. Except I wasn't. And my dream was not coming true this time either.

We did every test available. Two amnios, the baby's FISH, a karyotype, a microarray, a karyotype for the parents. Everything came back normal, all his results read "normal male". That's when I got angry. I had so many questions no one could answer: Why is there something wrong if it clearly reads "normal"? Why did this happen to me? What are the chances of it happening again? Why can't we fix him? Why isn't there something wrong so we can fix it and carry on to have healthy breathing, living children? Was it the Clomid? Would I have miscarried if I did not have the progesterone shots? All they said was that it was "bad luck" and had a 2-3% chance of it happening again. A doctor even dared tell me I should be more "cautious" during a next pregnancy. How much more cautious can one be? I had a Doppler at home, and had ultrasounds and appointments with my OB every other week. What else is there to do? (I had even adopted the habit of throwing out the first piece of toilet paper when using public restrooms, trying to avoid infections.) 

We are still waiting on the results for CHARGE and were told that the test only shows positive for 2/3 of the babies with CHARGE, so it was possible it would come negative too. There is no known test for Goldenhar Syndrome.

After we confirmed the diagnosis, and got worse news than what we had gotten a week earlier (the baby had grown for another week and the results were much clearer), we made up our minds: we would in fact terminate the pregnancy. It was the best choice for us and for our baby. Now what the first doctor offered didn't sound so horrible after all. This time around, it sounded like a relief.

We met with a Genetics counselor who provided all the information we needed and gave us the choice between a D&E and being induced, and explained the risks for both. I chose being induced, I couldn’t bare the thought of the D&E (I have nothing against those who choose the D&E, some days I wish I would have chosen it myself). She told us that since it was Thursday, I was going to have to wait until Monday because I was considered high risk and they wouldn't do an induction over the weekend. I had to wait five more days, five long, long days of feeling our baby kick hard enough to keep me up at night.

During the weekend, I remembered the counselor talked about an injection that would stop the baby’s heart. I don’t know why I did not ask when at her office, but suddenly this was all I could think of. Not only was I choosing to take my baby’s life away, but I was choosing the exact time and date this was going to happen. And this thought danced in my head for the whole entire weekend. I Googled how this would  happen and what the baby would feel. 

Monday, September 29th came. I was 20w6d. As soon as we got to the hospital, I asked why the injection was necessary. The counselor told me it was hospital policy not to induce until sure that the baby’s heart wasn’t beating, and that the safest and gentlest way to do it was with the injection. They took me in the room for my second amnio, and explained that after the amnio was performed, they'd give the baby the injection with the same needle, avoiding to have to do this separately and pinching me twice. (The injection would not be given directly to his heart, which was something that had also kept me up at night). 

When performing the ultrasound, they asked if I wanted the monitor turned off. I said no. I wanted to see my baby alive for the last time. I wanted to see him move for the last time. I had my mother read to him, as I had imagined her reading to him when he was born. (I brought the book in to read to him myself, but couldn’t do it then). 

The needle was in and it felt like they were sucking life out of me. The amnio wasn’t as painful as the first one, but I started screaming anyway. I knew that once the amnio was done, the injection would follow. And I screamed louder and louder, and cried so hard. It was really happening: I was letting them kill our baby. I was killing my baby. 

They gave me a pill to help stop the baby's heart and was sent home. I was to come back the following day, and labor would be induced then.

He moved around for a couple of hours after that. At 11:45 am I felt him kick for the last time. These were not the casual kicks I had been feeling for the past two weeks, these were I’m-having-a-heart-attack-kicks, desperate, strong kicks, and I could feel his pain as he kicked. I asked him to forgive me. And just like that, my heartbeat, the one I had forever been hoping to hear, stopped.

Tuesday, September 30th I was at the hospital at 9:00 am. I had an ultrasound to confirm the baby's heart wasn't beating. I knew it wasn't. I then talked to  different counselors and was told that the doctor was called into surgery. The induction started at 1:00 pm.

They gave me vaginal pills at 1:00, 4:00, and 7:30 pm. The pain started. I couldn't tell the contractions apart from the "cramping" they said I'd feel, as this was my first time in labor. I wasn't sure if I needed the epidural or not and was not sure how much worse the pain was going to get. I am so thankful that my sister-in-law flew in, and since she had been through this herself, convinced me to get the epidural. 

The anesthesiologists came with the epidural at 8:25 pm, and could only get it in after several attempts at 8:50 pm. I could feel everything on the left side of my body. My temperature rose significantly. I had a fever of 103.8. They drew my blood looking for signs of infection. They broke my water at 10:35 pm. They put ice packs all over my body, including in between my thighs, and lowered the room temperature.

I kept saying I felt a “stretching sensation down there”. I asked my husband to stay by my side because I felt something "coming out". The nurses assured me it was normal. I asked that they change my ice packs since I felt I was on fire. When they came to change them, nurse J said: “Ok, that’s part of the baby right there.” I cried for the first time that day.

A was born at 11:35 pm. Perfect beyond his imperfections.