permanently blue-

for you...

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.

wordless wednesday

the grass is always greener on the other side-

It's been four weeks. Four weeks of so much pain I think I'm starting to feel numb. Four weeks of pretending I'm OK. Four long weeks during which the world has been constantly reminding me that I failed. Four weeks of overthinking. Four weeks of finding myself so far away from my dream coming true. Four weeks of people announcing pregnancies or giving birth. Four weeks of adapting to a "new normal" that I did not ask for. 

changes in my body:

-have only lost 4 lbs out of the 20 I gained since pregnancy no. 1

-no more breastmilk (actually, my breast are now sagging)

-acne (though a littler better than when I was pregnant)

meds I'm taking: (as prescribed by the doctor after labor)

-folic acid

-prenatals 

-mini-pill: will finish the first pack this week. no side effects so far. I got my "real" period two days ago (had been bleeding since induction though).

-I've been taking sleep medication prescribed by my psychiatrist. Before them, I was getting little to no sleep. My body has now gotten used to them so it is still hard for me to sleep. 

workout:

-weight training 3-4 times a week

-yoga 2-3 times a week

We have yet to receive a call from Genetics with the final results from the baby's testing. Up until now, the karyotype and microarray on the baby were normal. I have a follow-up appointment in Boston on November 17th and I will be picking up the ashes then. 

On another note, my dog Nemo had surgery today to remove a cyst from his back. I broke down at the vet while I waited outside the OR. Every time they opened the door I was expecting bad news. Thankfully, everything went well and he's now sleeping by my side. The cyst was biopsied and the results will be back in two weeks. 

Apparently all I do is wait nowadays. 

even heroes have the right to bleed-

It's Sunday again. 

I still think it's the baby kicking when I have gas or feel something weird in my stomach. I still look down to see my belly, or find myself touching it every now and then. I hate it when my husband touches it, and proceed to tell him (in case he's forgotten)... "it's empty."

That's exactly how I feel... empty. My belly is empty. My heart is empty... I'm empty. 

As if I needed it, my body is a constant reminder that I'm not pregnant. The nonstop bleeding, the breastmilk during the first weeks, the pounds I have not managed to lose. 

I remember how empty I felt when I had the D&C for baby no. 1. This time around, it's much worse. No words make me feel better. There's no light at the end of the tunnel. There's nothing to look forward to. Everything is just dark. 

Some have said to me: "you look better". I smile politely and carry on. What constitutes "better"? What makes them think I'm doing "better"? That I don't walk around work crying? That I don't cry myself to sleep?

I've only cried three times and it's almost been four weeks. I have managed to only let my tears run freely when absolutely necessary, avoiding unsolicited advice or others worrying about me constantly.

And although I don't cry, the heartache and memories are ever present. 

I'm hurting. I'm broken. I'm undone. 

thursday thoughts-

**image from pinterest. 

bruised-

When they say women are from Venus and men from Mars (is that how it goes?), they must be talking about grieve. Nothing can be more different than the way men and women grieve. I know my husband's grieving, that he's sad, that he also wants to have *living* children. But he shows it so... Differently. If he shows it at all.

He has been the greatest support possible. He has been unbelievable, truly... We went through this together. He was there every step of the way. When I forgot how to speak English, he was my translator. He talked to me during the epidural process, he described it to me as I asked what was going on. He cried with me. He held my hand. He had everyone leave the room and asked me to read to our baby as I would have done if none of this had happened.

And even so, he does not understand me. He'll never understand it. He'll never "get it". He'll never understand this feeling. The horrible feeling I can't even put into words. The one only a mother feels. The one I had not felt ever before... and is currently eating my insides all day long.

Every inch of me is bruised.

My brain can't function correctly. All I can think about is being pregnant. Or better yet... staying pregnant. I want a baby so bad I'd risk going through this again to get one.

No, I am not obsessed with being pregnant or having a child. And if you haven't been through this, you don't get to judge. You don't get to tell me it's too soon or that I should wait however long you think appropriate. You don't get to tell me I'm obsessed. You don't get to have an opinion. Period.

I believe you would only understand if you have experienced this yourself... If you have terminated a much wanted the most wanted pregnancy.

My husband doesn't understand me. And I don't blame him. After all, he is a man. He wants us to wait 6-9 months. He wants us to "take it easy". To "have fun", to do "other things".

I get he is scared. Scared to death we go through this again... of seeing me like this, of losing me to depression and coming home to find instead a well of tears. I get it. It's terrifying. It's so effing terrifying there's a fine line between being scared and giving up. And I'm worried. About me, about him, about our relationship. 

Will I be able to be happy until he decides he wants to try again? Will I be OK with "just us"?

a heartbeat at my feet-

This week I started yoga and my 5am workout sessions at the gym again. It sucks to be back; it's a reminder of what I've lost, but it is also pretty helpful. Yoga is my favorite place to be right now. It makes me feel calm and at peace with myself. Sadly it's only three times a week and I can't make it all three days since I usually work at night. Educator by day, designer by night. 

Today's photo challenge is "furry". Here's a throwback of my best friend Nemo. He's been with me for seven perfect years. Seven years of insurmountable loyalty. I am so grateful for his life and for his company. He has seen me at my worst and loves me still. I hope to someday day give back as much love as he has given me. 

everything but laughter-

I visited my shrink for the second time today after our loss. There are no such things as support groups in my area, so it's pretty much all I got. Last week I admitted to him that I didn't think I would be visiting him this year.. (I really didn't think I was going to be visiting him at all); that sitting on his green couch counting his degrees on the wall made me feel defeated. I've lost once again... and this is biggest loss I've had to face in my entire life. I've lost two babies this year. I write it. I sometimes say it out loud. But it's so difficult to understand... to accept.

We were talking about acceptance and he asked a couple of questions like: have I accepted the fact that I am no longer pregnant? And I went all "of course I have accepted it. There's nothing left for me to do" on him. So I told him I thought acceptance depended much on not being angry, and that I was no longer angry. I am just sad, and lonely. He then said that was true in part, but that acceptance also depended on "going back to people".

OK, I got it. I have not accepted it yet... I don't feel like seeing people (and don't think I'll feel like doing so for a fair amount of time), the thought of my own two-year-old brother makes me sad, and I don't want to leave my house unless it's to go to the gym or to work (and I'm no fan of work either, I'm a early childhood education school administrator). But I will. And it's OK if I haven't. It's only been 15 days. 

I am grateful that I have someone to talk to, even if it's his job to listen. I can vent and cry all I want (and I usually don't cry. I talk, A LOT, which is weird for me because I'm not a talker). 

I tend to shut people out every time something happens. I've been doing it my whole life. If it weren't for him, I would probably not talk to anyone, as I feel that no one that's available to talk to me will understand what I'm going through. There's only so much the human brain can understand, and I truly believe if you have not gone through it, you won't be able to understand. 

I will not listen to people tell me that I should move on or that everything happens for a reason. I know that. And I'll do it in my own time and my own pace. 

Today's photo challenge is "laughter". I can do everything but laugh right now. I have laughed after everything that happened, I just don't do it often, and then I usually hate myself for a few minutes after I laugh because I feel I shouldn't be doing so. I know it's silly. 

Today is October 15th, Pregnancy and Infant Loss Remembrance Day. I had ordered candles on Etsy to light tonight and the courier failed to bring one home on time. The other one arrived at my sister in law's (Miami) and she lit it for me and sent me pictures. She also lit her candle in honor of the four babies she lost. I am lighting a candle here at home in memory of our children and my angel nieces and nephews. Forever our babies, forever our angels.

I downloaded the IG app and posted this print to create awareness. Then I deleted the app again. 

candle I had ordered on Etsy. 

candle I lit at home. 

it hurts until it doesn't.

I was catching up on Scandal and heard a phrase that I can relate with: it hurts until it doesn't. 

I know it's soon, but I just wish I could get over everything. That it would hurt less. That I wouldn't cry every two hours. I wish I could erase the fact that my babies died this year. 

I wish I wouldn't get sad at other people's babies. That I could be OK with the fact that I won't have a baby anytime soon. 

Trying to distract myself from all this, here's my October Photo A Day challenge. Today's challenge is writing. Here's my two-year-old brother "writing".  

Hoping tomorrow is a better day... 

hands- october photo a day challenge

the tiniest hands that I have ever held... the ones that stole my heart. as always, my rock holding ours... keeping my world from collapsing right then and there. 

it has been almost two weeks since you were born, and I still can't wrap my head around it. will I ever be able to do so? 

challenge at:  October Photo-A-Day Challenge

any given sunday.

I've never really liked Sundays. I know it's a day to rest and be home or with family, but to me, it's always been a day where I'm not busy enough and tend to overthink. I'm usually very tired on Saturdays; before my pregnancies, I'd wake up from Monday-Friday at 4:50 am to go to the gym, and would always go to bed really late at night.

But on Sundays, I'd be rested enough to not spend the whole day in bed and my brain would just start thinking. Before my pregnancies, I'd think of my grandmother. She passed away two years ago and I miss her like the very first day. I would have loved to have her at our wedding... I think about what she would have worn or what she would have said. Now, I think of her rocking my babies to sleep in heaven, singing songs to them I often find myself humming.

The other thought that's running through my head is that I'm frozen... frozen in time. It feels like the movies. Everyone else's lives move on, but mine stays in the same place. Everyone is happy, smiling, getting pregnant or having babies, while I'm frozen in time.... back to square one. I am in the same exact place I was when this year started, except this time around I am just plain sad and with 20 lbs I'd like to lose.

I'm thinking of starting tomorrow the October Photo-A-Day Challenge that http://mymrkhandhostsurrogacy.wordpress.com created. I know I'll be starting it mid-October, but I definitely need the distraction.

10 days.

I have had my ups and downs with God, and am no fan of religion. I am a spiritual person, that's it. If I don't go to heaven because I don't sit at church on Sundays and don't quote the Bible, well... I've made peace with that. 

If you are a religious person, this post is not meant to offend you. I respect your point of view, I really do. Which is why I ask you to respect mine. 

I received a message today from someone I really care about saying that I am being ungrateful. I was told that happiness is a choice and that I should choose to be happy.  That I should have a positive attitude. That I have had a blessed life and that when God tested me, my life fell apart. That last sentence really bothered me. 

This message was wrong in so many ways. I am not asking for people that have not gone through this to understand me, but I do ask that they respect me. Am I, in the eyes of the religious, supposed to act as if nothing happened? As if my son wasn't born sleeping 10 days ago? As if my son isn't dead? I cannot help but question... how many days do I get to mourn my child before I become pathetic? Are 10 days supposed to be enough? 

will it ever be OK?

Earlier today I spoke to the funeral home. They already have our baby with them and by Saturday the cremation will be done. Just like that, my life will turn into ashes. I won't be able to pick up his ashes until I am back in Boston for my follow up 5 weeks from now. 

I know that being happy is asking for too much... but... will it ever be OK? Will I ever be OK? Will I be able to shower and not burst into tears? Will I be able to drive without flooding the inside of my car? Will I ever want to leave my house and see people? Will I be able to think about anything other than my baby? Will I be able to wish for anything other than being pregnant? Will I be able to breath without it hurting? Every day gets more painful. Every time I wake up is a reminder that I am no longer pregnant, that my baby is gone. And it hurts. It really, really hurts. 

empathy vs. sympathy

Today has been rough. I woke up at 4:50 am and went for a 5K walk under the stars with my younger brother. Later in the day, I went to work (didn't really do much, but hey, at least I went). At work, everyone stared or came into my office to "look for something", which only made me feel worse. (I work with kids, but it was mostly adults doing this).

After my first loss, I stumbled upon this short I love and have shared a couple of times... I believe it's from a TED talk.

https://www.youtube.com/watch?v=1Evwgu369Jw

I hate the suggestions/questions/advice... What I hate the most though, is people telling me that I'm young and that "at least I know I can get pregnant". Do you tell a person that has lost a friend that they are young and can make multiple more friends as the world is filled with people? I keep trying to understand why it would make sense for others to say this. I know they don't say it to make me feel bad, but it certainly doesn't make me feel better. 

Tonight, I thought about crying myself to sleep. Then I realized my husband needs to wake up early for work, so it would be really selfish of me to lie next to him while I cry my eyes out. Instead, I decided to sit on the computer and read a couple of blogs until I feel tired enough that my brain won't go over everything I've been through this past week for the gazillionth time. 

the easy way out?

I've been debating whether or not to write this post for a couple of days. I figured I created this space in order to jot down my feelings. After all, it is my space and no one else's. The thing about writing it is, it makes everything real. I'ts like saying it out loud. I wish I could keep my feelings to myself and not be tormented by them. But I've always been one to overthink. So here it goes:

Mixed feelings today. Who I'm I lying to? I've been having mixed feelings ever since we found out about the baby's condition and made up our minds about not moving forward with the pregnancy. The odds were never in his favor. I had the top doctors in the city tell me it was not a viable pregnancy. I heard that. I understood that. Ever since, I've felt like such a coward though. I feel I took the easy way out. Not that anything about this was easy... I failed, once again. Although this time was different: I failed him. I wasn't there for him. And it is oh so painful to write this down.

I will forever be reminded that it was my choice. A decision I made. It was not a miscarriage. And I kept begging it would be. That once we found out I'd find blood somewhere, that on the next ultrasound they'd tell me they couldn't find the heartbeat. None of that happened...

I know it was the right decision. That it had to be done. That it was the safest and only way I wouldn't have been at risk. It hurts anyway. 

I keep thinking I'll never have the courage to write how things went down on September 29th. But not a second goes by I don't think about it. Ironically, it was World Heart Day. Mine stopped that day.

is it all in my head?

The worst part is, there's nothing left. Nothing I can hold on to but memories. Memories of how the day went, of everything that happened, of his smell, his weight, his toes... All I'm left with is in my head.

As I walk out the BWH, I realize this for the first time. 

Belly-less, baby-less. But on my feet once again. 

ten fingers, ten toes.

Thank you, Boston. I'm lucky enough to call you home. Now our son gets to call you home, too. Thank you God, for choosing us as his parents and for making him perfect in every way possible. A, born sleeping on September 30th, 2014 at 21 weeks. 11:35 pm. 10 fingers, 10 toes. 10.5 inches. 12.4 ounces. Forever my baby, forever my angel.