The Happiest News...And He is Here : )

Our Rainbow, Amelie's little brother is finally here. Ryder was born July 28th, healthy and happy after an easy and uneventful labor. We couldn't be any happier we have been blessed with a healthy baby, something I thought we would never have. I love motherhood (the way that is should be). He is growing fast, keeping me busy. He is strong, full of life and with so much character. My heart is half filled with joy and half with sadness every day for my Amelie. I wonder if she would look like Ryder, I wonder if she can see us and if she can, she must be so happy for us. 3 years of heartache, it is truly a miracle and one I never thought would be. I wish she was here with us the way she should be.

 

3 weeks old

So playful

Still cannot believe he is here

2 Month old already : )
He is such a smiley happy little boy

Waiting For Ryder...

Almost 37 weeks. Waiting...

                    
I know I haven't written in a while about my pregnancy. No news is good news. I am so happy that I can say I am still pregnant. In fact I am 36 days and 3 days (this Friday I will be at the same stage I was with my Amelie when my water broke). I am told everything "looks normal"....baby is healthy, growing as he should. It's so hard for me to fully believe and comprehend this, since it's what I have been told before, the same was said about Amelie, the same about my IVF/ PGD baby...SO how can I fully believe? how can I fully trust? To be honest I can't and it's a real struggle. To be pregnant after a full term loss, after taking your newborn home being told she is healthy then have her die in your arms a few days later due to a rare genetic disorder I knew nothing about. It's hard and it's not pretty, I struggle on a daily basis.

So many worries anxiety and dark thoughts. I know he doesn't have IP, yet I obsess over other things like Stillbirth, SIDS, Cord Accidents, Autism, Vaccines and trauma in Labour.  I worry that these could all take my healthy baby. I know that I cannot loose him that he simply just has to be okay. I would not, could not survive losing another child. Well meaning comments like "all will be okay", "trust/believe/hope","don't stress or it will be bad for the baby" do not help at all. Instead, what I really wish for is for people to give me a big fat break.

How can anyone know what this is supposed to look like when they haven't lived it themselves and haven't walked in my shoes? Yes I worry and I am a nervous wreck but I am doing my very best. I would also rather be that happy excited average pregnant woman too. But I am NOT her. I wish people accepted this and didn't try to fix me, gloss things over and try to make me feel better and calmer. It doesn't work and it makes me feel more isolated and alone. 

Love me, trust me, trust that I am a good mother and accept me as I am. Let me figure this out and let me get through this at my own pace in my own way. Once I have my healthy baby in my arms, only then I will breathe a big sigh of relief.

Celebrating the 'bump'..My IP free little bump : )

Happy Birthday Amelie!! We remember....

Here we are again. Another Birthday. She would have turned 3 years old today. Time truly does fly fast when you have children...and when you have children who have died....it still flies. Another cruel reminder from life that they are not here, not getting older yet we are, not blowing out candles like they should be.

Like all her birthdays I just wanted to curl up in bed and cry (which I admit I did for a while). I made myself get out of bed and start the day, no real plans this year, nothing spectacular like the two past birthdays. I was scared people wouldn't remember. Some forgot who I expected to reach out, maybe they didn't forget but they didn't do anything to remember either.....no card or phone call or even an email or text message....anything. If she was here they would have.

Remembrance however still came, in fact from many different places some which I didn't even expect. By the end of the day I saw how many truly cared, remembered, didn't forget and so I choose to focus on this instead. Honesty, such kind gestures got me through the day, people showing their love for Amelie through kind and thoughtful gestures. An invitation to breakfast to celebrate her, beautiful yellow flowers arrived at our door (Amelie's color), a gorgeous plant for Amelie's Garden (still a work in progress), cards, emails, thoughtful Facebook messages. A beautiful gift and gesture from a dear friend another bereaved mother; a stuffed toy for Ryder wearing a t-shirt with a picture of Amelie, saying "my big sister Amelie". (Only another mother of an angel would have known to do this).

Without all these kind gestures, this day would have been so much harder.....I am so grateful for all these wonderful friends and family and most of all I am so grateful for my Amelie.

Just a few of the many gestures and gifts received from all over the world. 

For her...

a few of the many things we received...

from my mum in England

Amelie's Great Grandmother and my Aunt in Hungary

a beautiful plant from Amelie's Grandparents to go in Amelie's Garden

I donated Amelie's Clothes to Towers Of Love a charity for homeless or abused women who are expecting babies. I know Amelie would have wanted her clothes to go to good use. Our Act of Kindness for Amelie this year.

Hopeful & Optimistic...

I still cannot quite believe it. It is all so wonderful. Feeling so blessed and grateful, despite the past. I wanted this for so long, and by the end I really believed I would never have it. He is moving and kicking now, I can feel it. I'm starting to buy him little items of clothing and plan the baby room. I kept many of Amelie's things; the stroller/pram, car seat, toys, blankets and clothes. Yesterday I felt strong enough to sort through them pulling out the gender neutral colors while putting all the pretty girly things back in their boxes. Back to the basement, where they will sit once again. It feels good to prepare. To use Amelie's things, it doesn't make me sad but instead feels right, using his older sisters things. If she had lived, it would still be this way, I would use the hand me downs from her, just as I will now. I fluctuate between the hopeful happy place to the dark and worried place often still, I can't not. But the closer I get the more confident I become. He is 21 weeks now (past the halfway mark). It's huge. He is looking strong and healthy. I cannot believe how much he looks like here. Here are a few pics from today's ultrasound.

A Little Something Else...

It's been quite a while since I last wrote. Again, our life has been a crazy whirlwind. We purchased our first home!! It's cute, contemporary, with plenty of potential, open and bright, surrounded by nature, secluded yet still near civilization...just as I always wanted. (Most importantly there is the perfect spot in the backyard for me to plant a little garden for my Amelie. Amelie's Garden #2. I have many plans). Finally we have a real place to call home, can settle and grow roots. I honestly never thought we would get here and I feel SO fortunate. We found the house in early December and closed in little over a month. Now we are all moved in and settled.  Couldn’t have gone smoother or easier, to my surprise. My husband also changed jobs, he found a position he is much happier with, he is more challenged and enjoys the day to day grind just a little more, I am so happy for him. So much has happened in such a short time. So stressful, so intense yet all wonderful and positive changes. This year so far has been amazing, there is a different energy surrounding us, around our family that I can't quite explain, I feel lighter and more hopeful. Life is looking good.

On top of all this, there is a little something else. I purposely didn't start with this and instead chose to ramble on about other happenings. There have been some other developments. I am cautious, so careful, so scared...I don't want to make a big deal...I'm doing things differently this time. As things are different. Very different. For the first time. I AM PREGNANT WITH A BABY WHO DOESN'T HAVE IP!!!!!!! NO IP! NO FUCKING IP! NO IP. I LOVE THOSE TWO WORDS. YEAAAAAAAAAAAAAAAAAAAAAAAAAAAAH....NO IP! Sorry for the language and going a little over the top, but I damn well deserve it. It's been way too long, the struggle too hard the road too long. After my third loss, losing little Leo, my hope was fully depleted, I had nothing left and we were about to give up. Yet I became pregnant. The first 13 weeks I was a wreck. So terrified I was going to have a miscarriage. I truly believed it wouldn’t work out, I was very negative, it was my coping mechanism. A self-preservation. Expecting the worst while hoping for the best (except without the hope part as I had none). Exactly a month ago today, we received the best phone call of our lives. The CVS which I had at 13 weeks revealed that all chromosomes looked healthy and normal and no sign of IP. Honestly the biggest miracle of my life. He is also a little boy. We have given him a name. He is 18 weeks tomorrow. His due date is 2 weeks after Amelie’s. I let myself buy his first outfit yesterday. No one knows, just family and now you all, my Blog Family too. No posts on Facebook or sharing with the world, just those close and special to me. I want to be very private this time. Just in case.

I am SO damn happy and over the moon, yet in a way it hasn't sunk in. I am also petrified. Somehow finding out he is healthy didn't reduce my anxiety, which I really didn't expect. Although I never expected to make it this far in the first place. I struggle with the fear and anxiety on a daily basis. Whenever I manage to get to a hopeful and happy place it’s often replaced by fear and spiraling thoughts. The ugly ‘what-ifs’. Worries about the risks associated with CVS, the Flu shot, risks of getting it, not getting it, how can I best protect my baby? Ultrasounds fill me with dread. Monday we are having the 18 week detailed scan. It will be the first time I see him knowing he has no IP. I think if I see everything looks ok then I will feel a little stronger, more confident. Maybe. I am so scared for Monday. We have no reason to be scared, but I know so much, have seen and heard so much. We are not out of the woods but we are almost half way there. I still have a long road ahead of me which I will walk one day at a time and stepping very carefully. Facing all these new emotions, layers upon layers. Amelie, him, so separate yet so entwined. I cannot help and think back to 2011, as I pass the milestones with him, it takes me back to her. It’s nice. I feel so much closer to her right now. I know she is looking out for me and her little brother, wanting this so much for us. Each day as the fear casts its ugly shadow over my hope, I think of my little boy, I think of my little girl and I try to have faith in them both, faith in myself, faith in my body as well as in life, once again.

There Is Always Hope...

Trying to keep this in mind...

A New Loss, New England, New Perspectives and New Beginnings...

Where do I even begin....So much to write about. So many 'New' happenings, since I last wrote. Some filled with joy, some with heartbreak. As we settle into our new home, begin our new life that I'm finally able to comprehend and reflect on the craziness of the past 4 months. The most important event being my Pregnancy. Yes, I was pregnant again. My second pregnancy after Amelie, third Pregnancy of my life and sad to say 3rd Loss of my life. It’s incredible, you would think luck would finally be on our side. That we would for once get to keep our baby, after all the tragedies, suffering we have endured. He was conceived naturally (yes no IVF/PGD for us ever again). We knew there was a 50% risk, yet we had hope.  I spent 13 weeks with him, managing to be blissfully happy, to be present, to bond, to enjoy each moment (knowing it could end). He grew, my body changed, I was so so happy. We found out I was pregnant days before Amelie’s Birthday. This was our 3^rd,  we hoped 3^rd time’s the charm. I guess not.

He was a boy. He stopped growing at 10 weeks. I found out during the 13 week Ultrasound, he had no heartbeat. (It was IP). I had to have a D&C the next day. It was full of complications, I almost had a blood clot and hemorrhage and had to be put under twice to have the procedure done again. (Something was missed the first time around). The ordeal isn’t even important, doesn’t even matter. We, I, had tried so hard, hoped so hard yet it didn’t go our way. We named him LEO. I will write more about him soon.

If this wasn't stressful enough, we also moved. When I say moved, I don’t mean just house, but to a brand new state. We relocated to NEW ENGLAND this summer! My husband received a job offer, we had been wanting to move away from Los Angeles for a long time. (The rat-race, pollution and fast-pace of the city had become something we no longer wanted to be a part of anymore). My husband grew up here and I in England, so it made more sense. We literally had 3 weeks to pack everything up in containers, to quit our jobs, to ship our cars, pets and all belongings, to find a new home on the East Coast and sub-lease our Pasadena house. Not an easy task, but we somehow managed. The idea of a fresh new start, nearer to supportive/loving family, in a healthier & purer environment meant the stress of the move was worth it. This was all happening alongside my pregnancy, terrible morning-sickness, followed by the loss, the arduous D&C and last but not least... my dog Preston who is the light of my life, getting sick and being diagnosed with a terminal and very aggressive form of cancer. (Yes, cancer at 5 years old, WTF?)….All while we were in the process of moving….not easy….

Today, I finally have the time to catch up a little bit. All boxes have been unpacked, our house feels like home. We begin to enjoy and ease into our new life, which couldn’t be any more different to hectic life in LA. We live in a small town called Boxford (North of Boston), in an old rustic little cottage, surrounded by nature, forests and animals. It is peaceful, quiet and calm and is just what we need right now. During the weekends we go to places like scenic Maine, Cape Cod and New Hampshire. There is so much to do here, so much history and beauty and adventures like this are the perfect distraction from everything. I am not working yet but will probably look for a part-time job starting the New Year. For now I am enjoying some peace, getting us settled in, taking care of Preston, my husband, cooking healthy foods, recovering and healing a little bit, day by day. I have never been able to do this before and am so grateful and is just what I need right now.

This is where I am as of now. Just being, present, enjoying each day, with the ones I love. Preston is well today, I try to be grateful as who knows what tomorrow will bring. I have so much to be pissed off and sad about; Leo, LB, Amelie and now my sweet Preston but trying to stay strong, to stay in the moment, to put one foot in front of the other. It's all I can do.

All our belongings in containers

 

We have arrived: Pregnant with Leo and scary looking statue, in Newburyport

 

 

On the Cape...

Beautiful Maine

 

The Boys..



 

2 Years

Happy Birthday my Sweet Girl. My heart breaks today as I think of all that should be. I try so hard to push these thoughts to the back of my mind and swallow my grief. Today is YOUR special day, it is a day about you and you alone. My Amelie, you deserve nothing less than to be celebrated. You have missed out on so much that life has to offer, I refuse to taint this day it with my sadness and tears. I can (and I do) that every single day of the year.

You were once here. You ARE here. You gave so much, you taught us all so much. You fought so hard to stay. Your heart once beat, your pretty little eyes observed the world around you, so wise and beyond your age. I remember as you looked into my eyes as I held you I held you right after you were born. Your body so warm, your cheeks so pink. I wish that moment had lasted forever.

Our bond will never be broken, my love for you will never fade. Stronger than death, more than the eye can see.  

You are not here physically to blow out your candles, (don’t worry your Dad and I will do that for you). I know your presence is here and you are with us. We send you these balloons up to heaven (or the place where you are), you may not get them but I hope you see them. I hope you are celebrating along with us. But mostly I hope you are okay, I hope you are happy. I hope so much, SO many things. I wish so many things.

I love you sweetie, Happy Birthday!

 

 

My First and Very Last Babyshower...

A woman I work with is very pregnant. Of course, why would I not be working with someone who is pregnant? My industry is very male dominated, so sure one of the few women associates one just happens to be pregnant. (Salt on the wound, she announced the week after I had my termination). I see her each day, so blissfully happy, so unaware or unsuspecting of all the horrible things that could go wrong...every day as her belly grows, it's another reminder. She is so happy, I am so sad.  I wish her the very best, I try to support her and give advice when I feel up to it. It makes me feel as if I am still partially part of that club. The club where I myself was once a member, even though it feels so long ago almost another lifetime. She is having a boy which is slightly easier on me.

With my pregnant co-worker, it was inevitable that the day would come. The dreaded B-A-B-Y  S-H-O-W-E-R. My dear associate and friend and also the 'office event planning extraordinaire' has been planning for months, very tactfully around me careful to not rub it in my face. (Thank god for the few who do have such sensitivity, unfortunately it is quite rare and sadly the further I get from the loss people seem to assume I'm better, or have forgotten. If only they knew....

The shower was planned during office hours, so even if I wanted to it would have been hard to avoid. They planned a 'surprise breakfast with baby gifts'..and lots of baby themed blue decorations. I honestly felt I could do it. I was confident that I could hold it together, after all she is having a little boy, as most of my associates are (gay) men - I was sure there wouldn't be too much gooey baby related talk. I entered the office this morning with a heavy heart... nervous but confident that I could do it. The first part started off well. She was happy and surprised. The breakfast was non eventful, delicious and I even managed to loosen up and enjoy it a little. During the breakfast my pregnant associate happened to sit right next to me at the big rectangular dining table we have in the office. We (meaning the others not me), as I tried to distance myself from the whole event planning), laid out all the baby gifts next to the dining table at another seating area. I honestly thought we would move over there to open the presents. My plan was to sit somehow in the back so that I could escape unnoticed OR if the tears strated the whole table wouldn't be gawking at me. Maybe I should have thought ahead more...planned better. Either way, my boss decided the presents would be handed to her an she would open them there at the table....right next to me. My heart sank. I panicked and didn't know what to do. She started on the first few presents, she opened mine first a simple onesie...fine.....the second one a pacifier... It was beginning to get a little uncomfortable for me. I didn't even attempt to plaster a smile on my face like I sometimes do, I sat there expressionless, as long as I don't have to react, say anything maybe I could do it. The next gift...I don't even know what was in it but it was a blue box with a picture of a baby on it. Form where I was sitting as I looked over at it I caught a glimpse of  the baby's little foot.....It was this baby foot that did it.

The uncontrollable spiral of thoughts began. Amelie's beautiful little foot. I loved her foot so much - so perfect, so small yet huge for the 6 pound baby that she was..(She obviously had Aaron's big foot)... Images came flooding back of the hospital, my precious baby in a coma. So horrific. Her body covered by machines and tubes apart from her little foot and hands peeking out which I kissed nonstop...My thoughts spiralled. My tears welled up.  I looked away, tried to turn off the thoughts, the emotions but I couldn't. So I ran. I got up and ran to my desk....a private little shelter where I cried for the next 20 minutes before I calmed down. The attempt was there, I tried to support my pregnant co-worker. 'A' for effort...

None of my associates came after me. Later 2 did ask if I was ok? I said fine. One said ' don't worry no one noticed'. I smiled and said nothing. But I wanted to scream, I don't care if you all noticed! My baby died. It hurts. I cry...cry all the time....sad all the time. That's what happens! Deal with it. This new person that is me today, appears strong on the outside - after all I am still here & I survived hell. Yet this hell has made me so fragile, so broken inside. I will never be who I used to be. And that is perfectly okay. I do not apologize for my behaviour, I may make others uncomfortable, but life is uncomfortable for grieving parents on a daily basis. I am proud of who I am, the new me. But definitely no more 'Baby Showers' for this new me.....ever again!

18 Months...

Each month the 26th, is a little different.  For the last 18 months I have never missed this date or let it pass me by. I either count down the days leading up to this with a heavy heart. Some months I get so caught up in life that I forget to look at the calendar until the day itself and it catches me off guard, a huge knife stabs me in the heart as soon as I realise exactly what day it is. Today was one of those days. These ordinary two numbers, the 2 and the 6 are forever etched into my mind. Seeing them anywhere, in any context makes my heart skip a beat. I know they are only numbers, yet to me they represent her. On this date each month, everything turns more raw, memories more vivid and painful. The 26th symbolises the beauty of her birth now entwined with heartache that she is no longer here.

18 months ago today. I held her for the first time. I caressed her soft baby skin, inhaled her sweet baby smell, kissed her rosy warm little cheeks. I was the happiest I could ever be. I was the happiest I will ever be. Instead of a happy anniversary, this date has turned into a  marker of time passing my daughter by. Life continues on around me. I continue life. I am so still and quiet with my pain these days. Privacy somehow feels right. I want to be alone with the pain, I don't want to share it. It wasn't always this way but these days it is. I have learned there is no right or wrong way and we have to do whatever feels right for us. Well, quiet and private seems to suit me the best right now. No one knows. I don't bring up my pain to those around me. Not to family or even husband who know very well what this day represents. Others pain and sadness are at times too much for me to take. All I can deal with is my own and I don't know how to be there for them.

So I just sit with my pain, quietly for hours. I am quiet on the outside yet I am screaming inside. There is a silent scream inside of me, it's shrill piercing cry slicing though my mind, my body....screaming for my daughter. Longing, missing, crying out for my 18 month old little girl who should be right here with me now. Yet I sit alone in a room, my heart forever broken, my arms still empty, still aching just as they have been the last 17 months....

The 2nd Xmas Without You...

We miss you my sweet Amelie.

Christmas is not complete without you here.

I am not complete without you here.

Love you more than words can express.

I miss you more than my heart can take.

I wish you were here today...xx 

Our Family...

Birthday Weekend as well as Other Things…

My 31^st Birthday, the second consecutive birthday after losing our daughter, was this past week. The weeks leading up to it were hell. The anticipation of the day, dreading having to celebrate, to be a fake cheerful happy person while blowing out candles as I turn a year older WITHOUT my daughter here with me. What could be worse? My bouncy little 17 month old girl, should be here celebrating with me, smiling, laughing, giggling….keeping us awake at night. But she is not. I know she is with me, beside me always in some kind of shape and form. I always tell myself this, yet it isn’t enough, it doesn’t lessen the pain. Not only this, but as I get older, with each month, year I get further and further from ideal child-bearing age. I am still young I know, but with the odd stacked so against me, fertility is all I have left in this battle to have a healthy child.

As a couple, Aaron and I decided to put things on hold. He needs more time. When you are on this path you both have to be ready, for what is to come. How can you ever be fully ready when you know you may face more losses, more suffering to come…for another precious child of yours to be taken from you. How can you be ready for this? You are never ready. It is hard for a relationship, being on different pages.. As a mother I would do anything, put my hands in fire to have a child who is alive and well. Aaron is cautious and emotionally exhausted…he is worried about me, my health. While all I want is to try again. Our frozen embryo is waiting patiently in a test tube. My body is strong and ready. I am as prepared as I could be. Yet we are waiting, plans on hold. Baby things wrapped up in boxes out in the garage, waiting to be opened..to be used. I sometimes check on them to make sure they are still there, that they still exist. Are they okay? (no water damage from the rain)…I worry about them. If something happened, if they were ruined I would be devastated. Such a strong emotional attachment to just objects, makes no sense I know, yet I hold on to them for dear life, maybe holding on to the hope they represent…One day maybe they will be used..

For the Birthday I wanted nothing. All I wanted was to be with Amelie. Aaron and I went to Amelie’s Beach. I was finally ready after 16 months, to revisit the sacred and special beach that we scattered my babies ashes. It was beautiful. We walked, talked. Discovered even more secret beaches as we walked. We wrote her name in the sand. I felt her with us, beside us. I found a pretty heart shaped stone in the sand. I wonder if this was her birthday gift to me…

 

 

Our False PGD Result: The Explaination...

We had a conference call with Dr. Hughes from Genesis Lab, regarding our (doomed) PGD round. It gave me more understanding about what happened and how much harder PGD is for IP as opposed to other disorders. With IP there are part of the gene missing, other disorders there are more or duplicates which are a lot easier to seek out. With the embryo that implanted, there was something called an X-Crossover (a very rare occurrence) where parts of Aaron’s genes crossed over and filled out the faulty ones inherited from me, they made it look like it was normal. That way when they looked at the gene it have the appearance that it was healthy. (Apparently our genetic material is very similar looking which made it harder). There were slightly weaker signals for one side of the sample they assessed (now we know that was my side/the IP side) but that apparently wasn’t enough to indicate anything was wrong. Healthy genes can also look like this. They felt it was safe to put in, that it appeared  as 97-98% healthy. Ugh…we just got unlucky again. It seems we were really the 2-3 %. Hard to believe and comprehend. Why do these things keep happening to us? Why is our case always the most unusual, the most extreme. My daughter died of IP. This has never happened to anyone. Now The PGD to prevent IP failed also. Has this ever happened to anyone with IP before? How does this happen?

Emotionally, understanding provided closure. Made me realize that the technology has its limitations. More so than I thought and was lead to believe. There are so many unknowns and intricacies with something like this. Until we had this conversation, I had been directing my anger at the lab. During the phone call, I was able to voice this, to have my emotional outburst. They listened. I was heard and it made me feel better. I realize they weren’t at fault. That they were working so hard for me. They didn’t want this either, they wanted a healthy baby for me. They worked with me to eliminate the IP. Just, nothing is guaranteed. Could I do this again? I don’t know. What options do I have as a woman with IP? Can I face more losses?

On A Positive Note (not that there is anything positive here). From the IVF cycle, we have a B Grade female embryo left which is now frozen. The lab re-assessed it again. The signals are looking strong on both sides and all looks as it should. They are very confident it is normal. 99%. How can I trust it? What choice do I even have? The lab and doctors are understandably treating us with extra caution. This just cannot happen again. They offered to also do a Genetic Array Test on it to rule out other chromosomal abnormalities. The results will be back in a few days. This little frozen girl, has more of a chance of being IP free, than if I tried to get pregnant naturally. How do I feel about all of this? hopeful. Somehow I have managed to regain a little hope. As without it what do I have left? I cannot give up. What happened made me realize I must have a child, that I am not giving up. I am strong and can do this, in order to have a baby. I just need a break. I need time. I am exhausted and done for a little while.

The Lab as well as the IVF clinic have offered their services for free, if and when I am ready to try again for another round. Although I expect nothing less, I am grateful that they are doing this.

My grief has become so complex. Layers upon layers. I miss my babies, how strange to say this instead of ‘baby’. Again, so close yet so far. I was pregnant just 2 months ago. It is still so fresh in my mind. I miss it so much, the way it feels, the bond, the love, the closeness. Only a woman, only a mother can appreciate this. I would be 20 weeks pregnant exactly today with my LB. My life could be so different. So very different in so many ways.

Love This...

I have not blogged for a while. My favorite form of emotional outlet has been neglected. Getting up every day, routine matters of life are taking all the energy that I have to give. Distractions are keeping me from thinking of and processing the last month…or even year. I guess I have shut down. It’s fine by me and it feels right and appropriate. I have hard days and good days. I will write more as soon as I am ready, I just need more time to be numb, to process. I still have no words or even new information about what happened, why our PGD went wrong. Genesis (the lab) is conducting an investigation. I (should) know more in the next few weeks…

To get me through today, I kept thinking of the beautiful lyrics of this song from Jem. So much of it resonates with me particularly the text in bold. I just wanted to share…. This song makes me feel a little stronger, less alone and helps me get through the darker moments.

You Will Make It

Go to bed everything's alright
Don't know the whole world's changing
As you sleep through the night
Wake up slowly and it's a different world

Hear the news and the floods begin
Screams so loud but only felt within
Heart is shattered
The pieces can't be found

I feel your pain, I wrote this song for you, for you
You will make it, you will make it through
I promise you, he would want you to

Months go by, still living in a daze
Don't know what you've done
With the last seven days
Soul is numb and life is like a dream

Helping hands but you push them away
How could they understand
Don't wanna share your pain
Afraid to heal, 'cause that would mean goodbye

I feel your pain, I wrote this song for you, for you
You will make it, you will make it through
I promise you, she would want you to

One day sunlight hits a photograph
And it makes you smile
The memories dance around you now
And they make you smile
You're not alone
You'll never be
Just like the stars
They oversee
And they whisper to you
You're still, you're still, you're still, you're still alive

I feel your pain, I wrote this song for you, for you
You will make it, you will make it through
I promise you, they would want you to

Do not stand at my grave and weep
I am not there; I do not sleep
I am a thousand winds that blow
I am the diamond glints on snow
I am the sun on ripened grain
I am the gentle autumn rain
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circled flight
I am the soft stars that shine at night
Do not stand at my grave and cry
I am not there; I did not die

PGD WTF?

I haven't written an update for a while. My life right now feels like an out of body experience or a bad horror movie. The last few weeks I couldn't find the energy to write or even the words to type. I still can't. There is just too much to process. Layers upon layers, and they keep piling up. Will our shitty bout of bad luck ever end?  After the news we got yesterday, the CVS results from LB came back, I had to write. We now know the results of what killed my sweet little boy. (For those who haven't read my previous post. Yes I said my little boy, not Amelie. Yes I just had another loss. My hopes and dreams again, shattered. An all too familiar feeling. So unwelcome, so wrong, so should not be happening)

To loose your 19 day old newborn, watch her die bright before your eyes, in your arms is one thing.

Then, to learn the possibility of having a healthy child ever again, (the only thing that gives you hope after a loss) is dramatically reduced due to a stupid genetic disorder (IP) or Incontinentia Pigmenti, that you are the carrier of and which is what killed my daughter.

Also meaning that I am likely to have multiple losses before having a healthy child...OR I could just get 'lucky' and have a healthy child straight away, we just don't know...

To find out.. wait...that there is a way around it. I could do IVF with PGD (Preimlantation Genetic Diagnosis). A painful, uncomfortable, emotionally excruciating process, not to mention expensive (no more savings to buy a house type expensive), which claims to give a 99% chance of a healthy baby. It only guarantees 30% chance of getting pregnant initially with each embryo that is put in, but basically once pregnant you have a pretty good chance. Well as you all know, we chose this option.

We picked a reputable IVF clinic/doctor and selected one of the 'best' (supposedly but now very debatable) labs in the US to do the PGD part. We suffered through it. We did it. They implanted 2 supposedly 'healthy IP free' embryos. I got pregnant.

All looked good with the baby.
We were over the moon.
So happy.
Making plans again, looking forward to the future.
The genetic disorder couldn't be further from my mind.

Then at 13 weeks we learned something was really wrong. The baby was not going to make it and had serious problems. He would suffer. I had to terminate. So traumatized, so sad. Again, my baby was taken from me.

Then yesterday, we found out what it was.

It was IP
FUCKING IP.

It's Over, I'm Not Pregnant...

Sorry I haven't written for a while. To those following, I'm sure my silence said it all...it spoke more than any words could. I simply couldn't bring myself to write for so long what I'm about to...I wanted to give you all hope. That good can happen to those like us, after such tragedy...I wanted to be an inspiration, not a let down. To give you all hope, not more fear...It took me 2 weeks to bring myself to do it. So here it goes..

I am no longer pregnant. I lost my pregnancy. I lost my baby. Again. Another child, my other child. Our second child. Our hopes and dreams...gone...yet again. He was a little boy. I named him LB (as in 'Little Boy'). I felt such a bond with him. I knew he was a boy all along. I felt him, felt so close to him. It was wonderful. Again, so close yet so far. I am angry. I am numb...

We don't yet know what it was. All we knew from the ultrasound that there was too much fluid under skin, behind the neck, inside the baby, that my baby wasn't viable for life. Would not be born alive, due to serious chromosomal abnormalities that this stupid fluid indicated. The fluid kept increasing, another bad sign. There was no hope. Everybody advised me to end the pregnancy. (The T and the A word, that I still cannot bring myself to say or write. I don't think I ever will. Something I have always disagreed with. I never thought I would have to consider. To do the hardest thing anyone could have asked of me.) My poor poor baby. The easiest thing to do would have been to do nothing, to wait. To close my ears to the doctors and pretend all was ok and to remain pregnant as long as I could. Believe me that is what I wanted to do more than anything else, as any mother would. This would have been the easy way... Not that there are any easy ways with something like this.. BUT the possibility that my baby would have to suffer at any point. To bring a child into the world who was not equipped to live? To suffer, like my sweet Amelie did. How could I love them and do that?  How could I watch another child suffer? That is not being a mother. I believe I did the best for him and what he would have wanted. I did the best by my baby. Not for me but my baby. How could this happen, how could this be. Yes, you ask WTF??...as I ask too. I suffered through IVF/PGD in order to eliminate these types of risks. We did everything right. Or so we thought. What was the point? We thought PGD was supposed to pick a healthy embryo. Both were grade A!!....How can this happen?

What we know so far: is a big fat NOTHING.....The CVS results came back normal. Obvious problems like Trisomy/Down Syndromes were tested for and were negative. We are now waiting on the results for IP...Yes, I said IP.....After PGD....I know!! The doctors were shocked as everything looked so good initially, (up to 12 weeks) our odds were so good. Are we the 3% it fails for? Everybody insists IP is very unlikely...That it may just simply be 'bad shitty luck'.....(REALLY AGAIN??) that something went wrong and we will never know what it was. Apparently there are thousands of abnormalities that you cannot test for, with no genetic markers..This could be one of them...Well, I'm sorry but that does not sit well with me. That's NOT ok.....

Now just waiting on the results , which may very well be 'simply bad luck'...There is no good result to expect, nothing to hope for. Either result will not provide acceptable answer. Will make us feel more traumatized and entirely petrified and fearful about becoming pregnant again. We now have NO faith in IVF/PGD. Never want to do it again. We messed with nature and for what? I would have had a better chance of having a healthy pregnancy without it. So much fear...unanswered questions...doubt, anger....confusion...

The facts do matter, but in some ways they don't make a difference. At the end of the day, I lost my child again. Amelie's brother...We did everything right, we picked the option that was supposed to be the best...the hardest but the best. We did it all. I tried so hard. Yet I lost again. Our baby dream ended in the worst possible way....again.

My Cocoon of Hope...

We are waiting on the results of the CVS. And it’s hell. We are trying to keep busy, both of us back at work. After a weekend of laying in bed crying our eyes out…. It helps keep us sane, keeps my mind preoccupied and me off the internet googling possible outcomes of babies with Cystic Hygromas at 13 weeks. Working makes me think about other things besides our future and what it could mean for our baby, the fact there may not even be a future. Our next appointment will be on Monday and we may or may not have full results by then. But we should know more come Monday. Also an ultrasound will tell us more. My deepest hope is that the ultrasound will appear normal somehow, the fluid filled cyst and fluid around the baby will be gone. That our results will be normal…..this is my secret dream. I am focusing on that. I also know, that the ultrasound could show the baby’s heart ahs stopped. This thought enters my mind way too many times. To live with this thought, knowing it’s a possibility I cannot even explain. Everything’s all up in the air, so unknown. I am hating the waiting and want Monday to come. Yet at the same time I don’t want it to ever come. I want to stay in my own little world. In my cocoon of hope. Just me and my baby. Knowing these last couple of days, this weekend might be our very last spent together. I want to be the best possible mother I can be. That is all I can do. I don’t want to look back and have any regrets. I want to enjoy every second having them here. I am trying as much as I can to rest, (of all weekends we happen to be moving house, but with the help of movers and my wonderful hubby it shouldn’t be too hard on me). I want to relax, eat well, think positive thoughts while I ignore the negative ones, I do this for my baby. I owe it to my baby. I want to bond with them as much as possible. I spend all the time I can with my hands on my belly, where the baby is; sending love, light and healing positive thoughts. What else can I do? What other choice do I have? The fate of this baby is not up to me, out of my hands. So I’m going to do all I can, giving it all I’ve got. Having been here before, I know that’s so important to do. Knowing we did everything for Amelie, that we were by her side every second in the hospital, gives me comfort. I’m not afraid to bond with my baby, if it makes it hurt more in the end, so what…it will hurt anyway….

My World Comes Crashing Down...again...

I cannot comprehend my life right now. My already fragile world is crumbling again. The fears and worries I tried so hard to ignore are coming true with full force, but more painful and tragic than I ever imagined. Maybe I knew something was wrong deep down...

During our 1st Trimester Screening yesterday, as the nurse started scanning over the baby, her silence, her face, said it all....With each second, our hearts sank more and more. Our new baby, our hope, our joy - has severe abnormalities. The NT scan showed more fluid behind the neck than is normal and under the skin, surrounding the embryo. Not 'viable for life', 'severe disabilities', 'symptoms indicative of serious  'chromosonal abnormality' and 'termination highly advised' - are the words what I recall. The rest is a blur.
They advised me to do a CVS, which is something I wanted to avoid at all cost. The doctor felt this would give us concrete answers as to what went wrong. What chromosome is effected. So if we decide to try again for a baby (?) we would know more....

Already, so numb, in shock, hardly able to catch my breath, my body shaking uncontrollably. Stretched out on the exam bed about to have a needle as long as my arm, a foreign and sharp cold object inserted into my belly, the safe and protective haven for my baby. So unnatural so wrong. So much blood, blood everywhere. So much pain and fear. My baby, who I want to protect with everything I have, is not well, is dieing...How can this happen a 2nd time? How?

The doctor felt the findings looked highly indicative of IP...What the hell? Why did I even do PGD/IVF? I am so angry, so let down. Mad at the doctors, the geneticists.The suffering, the hormones, the hopes? Were we the 3% it doesn't work out for? just as we where the 1 in 1 million, with Amelie. What is going on? Am I a really bad person? Do I deserve this? Is this my life.....no children...no future? arrgggggg......I have so many emotions, so much to comprehend, understand.....

We have no answers what it is right now. It is not about that. We will deal with it when we find out. It is about our baby and doing the right thing now. What is the right thing. Can I trust the doctors? He wants me to wait a week for the results. A hellish week knowing what is possibly to come. Knowing I could start bleeding and having a miscarriage any minute.

I know I have to take one day at a time. See what next week brings. What the doctor says. In the back of my mind there is the hope that when they check in a week, the fluid will be gone, the baby will look strong
and healthy and the results will show no abnormalities. I have this tiny ray of hope. I'm holding on to it, not because I think its realistic but because I cannot give in, give up. Yet the probability is 10th of 1%, or less. Then again, maybe statistics don't apply to us? they haven't so far..I guess we have that going for us.

Regarding the possible termination. I am speechless. It goes against everything I believe in, it goes against nature, all my being, the mother in me, to me it's so unnatural and so wrong. Yet I cannot bring a baby into the world to suffer, like Amelie did. I refuse. I feel like my hands are tied. I have no choice again. Almost exactly 1 year after losing my daughter. How is life so cruel? Physically and emotionally I do not know if I am strong enough. I don't know anything anymore.

I went into that room full of hopes of seeing our squirmy baby, with a blank DVD in hand, full of hope and excitement...when I came out of that room, I felt I had nothing...again.

Dark Cloud...

Yesterday meant the end to this awful and difficult period. The 19 day countdown beginning with June 26^th (Amelie’s birthday and 1 year anniversary to July 15^th, the day she died). The memories, re-living each day,starting with the good memories, then the bad. The memories in my head flooding back more vividly than ever before, wherever I was, whatever I was doing like a movie, a very sad and heartbreaking movie. We survived. We made it. But barely... I think we both are relieved it is over. Not that the pain is any less, but that dark lingering cloud following us now has slightly subsided (although it will never subside completely).

My way of coping with this all was to simply shut down. I became an even more detached and number version of my 'normal' self... (not really sure what is normal any more). I didn’t even feel like blogging, in a way I just wanted to ignore it, to pretend it all wasn’t happening. The first day, her birthday I cried. I cried so hard and all day long (privately in the restrooms or at work I hid where no one could see me). But after that day, I just shut down... it was too much. I wanted to look at her photographs, which usually make me smile. This time I couldn’t bring myself to, whenever I tried I felt as if my heart was being ripped out. Then, the numbness took over. This in turn made me feel even more sad. More empty. More distant from her, which kills me. More angry as if I was denying that this was happening, as if I was denying her. I wanted to be able to cry more. I just simply couldn’t, there were no more tears left to cry. No more pain to feel. I was at the limit of what I could feel. Reached my threshold...and I became numb. This was my survival mode, my way of coping.  I know the rule with grief is to let yourself feel whatever you feel and not judge or fight it or beat yourself up over it, so I try my best to remember this.

Of course, I am in pain, I'm hurting missing and loving her, more than life itself.…The fact that I feel it now in this new numb kind of way, that I hadn’t felt before, is okay. It’s alright. Being pregnant right now could also be making me feel like this, maybe a way my brain wants to protect myself and new baby from the scary intensity of grief? I don’t know. It’s all so new to me. Grieving while growing a new life inside me. The new life that I am so scared I will also be grieving one day, (sorry I cannot help but go there, even just for a second). But this is not the place. This post is purely about my sweet Amelie. My daughter, Only her, no one else. I do not want to move on, forget, to be happy. The hole in my heart will never be filled. She will always be mine just as I am hers. Always.

Baby Update no. 1:

                           

Last weeks ultrasound could not have gone better. Again a strong and regular heartbeat was found and the little guy or girl is growing as he should be. 7 weeks 6 days in size (at exactly exactly 8 weeks gestation), that's pretty good. So he /or she grew at least 2 weeks in a week...Also the heartbeat is very important and a great sign..

The mix of emotions is so hard to explain. So much going on. Behind the excitement and hope lies the fear,  and worry, mixed in with the sadness and grief for Amelie. The emotions start good then they trail off at the end. I cant help it. The hope and happiness juxtaposed against the stark reality and the vivid memories which I keep re-living in my head of what was this time last year....To have to juggle the two emotions, is interesting to say the least.

Also, my fears and worries....The fact that the genetic disorder Amelie had is one thing, I get it. The IP. The fact that she died from it, which so unusual. That to be honest I still don't really get. No answers just facts. That's where my worry begins and the weight gets heavier.. The what if's..What if it is something about me, something hidden, something else in my genes....After all, my genes are so mysterious, they once let me down. Failure is all I know...My mind runs away with me, the worries overtake. Rationally I know the IP (hopefully - 98% has been eliminated with PGD)...so I should know, I should not worry, shouldn't go there...but I do. It's all so much more complicated than another prognosis/ another more clearer easier to understand death. But with ours, there is so much unknown, so many questions...the what if's....I could drive myself crazy. Is there a way I can accept this and somehow make it through the next 7 months without torturing myself so much. After all I have been through so much already. Can I just be strong and ok with watever happens and just worry about being there for my baby, providing them a safe and healthy pregnancy. Focus on the things that I can control. How can I be ok with the uncontrollables? How can I be strong and not riddled with so much fear of the unknow? How can I not expect the worst and remain positive? Just how exactly do I do this?



From Grammy Jo and Grandpa Fred...

These are my tiny footprints, so perfect and so small.

These tiny footprints, never touched the ground at all.

Not one tiny footprint, for now I have my wings.

These tiny footprints were meant for other things.

You will hear my tiny footprints, in the patter of the rain.

Gentle drops like angel tears, of joy and not from pain.

You will see my tiny footprints, in each butterflies’ lazy dance.

I’ll let you know I’m with you, if you give me just a chance.

You will see my tiny footprints, in the rustle of the leaves.

I will whisper names into the wind, and call each one that grieves.

Most of all, these tiny footprints, are found in mommy’s heart.

’cause even though I’m gone now,

we’ll never truly part.

-author unknown