Diagnosis Day

A year ago today was perhaps the hardest day of my life.  Yes, Elisa's 'birthday' was hard, but at least on her birthday we were able to hold her and spend time with her.

Diagnosis day is a day I will never forget, it is burned into my mind, my soul forever.

A year ago, we knew going in that this day a year ago that it would be a hard day, but we had no idea how hard it would actually be.  We had back to back appointments at the high risk doctors from 9am all the way through until 3pm.  Ultrasounds, Doctors visits, meeting with the social worker, meetings with the genetic counselor.

Although I knew it was going to be a hard day, I really don't think I believed it could be as bad as it was.

I thought maybe something was wrong with Elisa, but that all it meant was perhaps a growth delay, maybe that she would be special needs, that we had our work cut out for us, but we would have her, so it would be worth it.

But that wasn't the case.

The ultrasound technician was nice enough, but she didn't talk very much.  She just took her measurements and pictures, recorded blood flow.

It was when we met with the doctor that everything came crashing down.

As soon as she came in I could tell it wasn't good. She sat down on the rolling stool between the computer and us and asked for details on our history.  We talked about losing Luca, the time it took us to get pregnant again with Elisa, and the bumpy road we had already had with our pregnancy with Elisa, the bleeding, bed rest and all.

After we were finished, she started to explain the situation.  Our baby had severe IUGR, Intra Uterine Growth Restriction.  IUGR it self is not a huge problem, it is not that rare, and is actually quite common in twin pregnancies.  But in most cases IUGR does not onset until late in the pregnancy, closer to 35 weeks so they are able to induce.  The baby has a risk due to being a preime, but they are able to be delivered, better out than in. but Elisa was diagnosed with early onset Severe IUGR.  She was nearly three weeks behind in all measurements, and it had onset at 19 weeks maybe even sooner. It was way to soon for her to be delivered.

At this point, they didn't know what was causing the IUGR, it could be genetic for which we would have blood draws later that day to find out that it was not genetic, or as we found out later, it had to do with a problem with the placenta.

The doctor explained that the only real solution to save a baby from IUGR is to deliver the baby, but because Elisa was only 19 weeks, she could not survive yet.  She needed to make it to at least the weight of a  25 weeker, which would likely be around 28 weeks for her.  The doctor explained that she would likely die before she reached the size where she could be delivered, that she had a less than 10% chance of survival, and if she did she would have a very long stay in the NICU and could very possibly pass away very shortly after birth.

It was as if a bomb was dropped on us.  Those who know me well know I don't really cry in public. In fact, Mark and my mom are really the only people who see me cry.  Don't get me wrong, I cry, and after losing Elisa I have cried A LOT, but for some reason I can't cry in public.

This was the exception.  As we were sitting there, the doctor explaining our situation, and options, tears fell like a waterfall from my eyes.  Silent, but nothing could stop them.

After the doctor finished explaining things, she moved on to what "we wanted to do"

She suggest termination, but Mark and I knew that was not what we wanted to do.

After everything was explained to us, the doctor said that if we were not going to terminate, then we didn't need to meet with the genetic counselor.  They only thing left to do was head back to the waiting room where they would call me back for my blood draws.

I know we were only sitting in the waiting room for probably about 5 minutes, but it seemed like an eternity.  As we sat there, tears flowed from my eyes in huge streams.  It wasn't the gasping, wailing cries that I do now that Elisa is gone.  But silent, hopeless tears, with the reality that there was nothing that I could do as a mother to save my baby girl.

We sat in the lobby as another women, nearly full term walked by to go in to her appointment and as she walked in, another women was being rolled out in a wheelchair as the doctor discussed with her that they would like to induce within the week. I knew logically that both women were obviously having a hard time too, or else they wouldn't be at a high risk doctor, but I wanted to do anything to be that far along with Elisa, to have the hope that she might make it home from the hospital.

After the blood draw we headed to the car to go home.  As soon as the door closed in the car, I broke down.  I couldn't believe that this was happening.  After all of our heartache of losing Luca, and of trying to get pregnant again.  All of the worry in the first trimester with Elisa.  We though everything would be ok.  But it wasn't going to be ok.  It was very likley we weren't going to get our "rainbow baby" that we were going to losing another child, and there was nothing we could do about it.

The Vancouver Beluga Whales

For my birthday this last weekend Mark planned a trip for us to Vancouver BC, specifically to see the Beluga Whales.    Getting out of town was a much needed change. With all of the upcoming anniversary dates, my birthday and the holidays I have been really down these last few weeks. It was good to get away.

I don't think I even need to say how much whales mean to me, especially beluga whales. Elisa was our "little baby beluga" and anytime I see anything whale it seems like it is a little "hello" from her up in heaven.

I knew seeing the belugas would be uplifting, but it was even more wonderful that I was expecting.

Not only did we get to see the belugas at the aquarium exhibit, but Mark was amazing and booked us the "beluga experience". We were able to explore behind the scenes of the Vancouver Aquarium and at the end, meet and feed a beluga whale!!  Mark was so wonderful to research and organize all of this.

It was amazing. These creatures are so beautiful and awe inspiring. And it felt like including my girls in my birthday. My heart was filled.

Here are some pictures from our day. Photo credit to the wonderful people at the Vancouver Aquarium

Aurora and Qila are the two belugas at the Vancouver Aquarium.  They are a mother-daughter pair, which also made this experience even more special for me.  We interacted mostly with Qila, the daughter,  shown here

This was so cool!

Mark got to shake her hand :)

They asked us how "in to it" we wanted to get, and we all agreed we wanted the full beluga experience.  That included being splashed by her big tail!

We included "beluga" in this last photo with the trainer, our guide, and the two other women who were in the Beluga Experience with us

Another Year Older

Today was my birthday. I know I'm supposed to be happy, and celebrating getting another year older, but this year was hard and I don't feel much like celebrating.

A year and two days ago, November 18th last year, was the day we first found out something might be wrong with Elisa. It was supposed to be a joyous day, the day we would get the ultrasound where we would see if we were having a boy or a girl. We had even planned a Gender Reveal party for later that weekend. Mark;s mom was flying in to Seattle specifically to come to the party and see if she was going to have a granddaughter or a grandson.

But that appointment didn't go the way we thought it would.

Looking back on the ultrasound now, I can see how the technician was taking more measurement than she may normally do, that she was being very quiet.

But to Mark and I we were just super excited to see our beautiful baby on the screen, and waiting for when the technician would tell us to look away, so we wouldn't accidentally see the gender (we wanted to wait and see with everyone else at the party).

So after the ultrasound we sat in the lobby for about a half hour while they reviewed the ultrasound and we waited for our check up with our OB.

We sat there looking at the ultrasound photos, being so happy that we finally made it this far. That things seemed to finally be going our way.

But when we got to see our Doctor we knew things were not right. She came in, sat us down and very sweetly said, "things just have to be so hard" she sat down and put her hand on me to comfort me as she continued to explain the situation. Our baby was three weeks behind growth targets, which was not normal, and they believed something was wrong. They didn't know what, or why, the equipment they had couldn't tell them enough, so we would have to schedule to be seen by a high risk doctor the next week.

We left the appointment shell-shocked. That an appointment that should be joyous and exciting turned in to dread, and that we would have to wait until the following Monday to figure out what was actually wrong.

So two days later, when my birthday rolled around, I did not feel like celebrating. I was worried and depressed about what might be wrong with my precious baby.

Now this year, as my birthday rolls around again, I don't feel like celebrating.

Those who know me well know I am a planner, and I like to have things in order. When I looked at my "life plan", I though I would have two children by now. I do, but no on sees them, they aren't here with me, and I have the ache in my heart of two losses. Even after all of that, I had hopped I would at least be pregnant again by now, and have the hope of a younger brother/sister for our angels. But even that hope was crushed.

I have succumbed to the fact that I cannot have a life that follows a plan, but I still grieve the life I wanted. Getting another year older with an empty house and  no light in sight that it will happen soon is hard. That and knowing that Elisa's official diagnosis day is just around the corner, coming up on Tuesday, I don't feel much like celebrating

Capture Your Grief: Day 31 - Sunset

Today brings an end to the 2015 Capture Your Grief Project.  As I wrote yesterday this was a healing growing experience for me.  Thank you to everyone who followed along on Facebook, and for those who have taken the time to read here as a glimpse into our world of life after child loss. Your continued love and support is very much appreciated!

It seems fitting that we could barely see the sunset today, due to the rain storm.  While today marks the end of this project, it also marks the beginning of several dark milestone and remembrance dates for us.

October 31st last year we received the first test results that hinted something might be wrong with Elisa.  Our 1st trimester blood test results came back with a 1 in 2 chance that our baby could have down syndrome.   We spent Halloween day at the doctor's office getting more test done that would confirm for sure.  Obviously we would have loved and been grateful even if our baby had Down Syndrome, it just meant a shift in what our image of parenthood was going to be.  After a long weekend of waiting for the results, we found out she did not have Down Syndrome, it was a false positive, something that happens 5% of the time.  (We found out later, that it was likely the placental problems that caused Elisa's IUGR that triggered the false positive in this blood test).

So today marks the end of the Capture Your Grief Project, and the beginning of some of the hardest times in our lives.  Less than a month from now will mark a year from when we received the news that Elisa would likely not make it to birth.  And her first birthday is less than three months away.  In addition to this, we have the holidays, which are supposed to be joyous and exciting, but they are hard for us, as we know our two girls are always missing.

Thank you for following along these last 31 days. I hope you will come back again soon.

Capture Your Grief: Day 30 - Reflection

The Capture Your Grief Project was a new thing for me this year.  It was challenging, but it was fruitful.

I have tried to be very intentional throughout my grieving process, to use my grieving as a way to move toward healing, and as a way to sit with and learn who this new person is.  Who I am now after our miscarriage.  Who I am now after carrying our second daughter, what was supposed to be our "rainbow pregnancy"  knowing she would likely not live. Who I am now knowing nothing is guaranteed.

This project helped me be even more intentional than I thought I could be.  It focused my writing on topics, some of which I have been wanting to write about, like my gratitude and intentions with sharing our stories, and others that stretched me in to writing things I wanted to talk about, but didn't know how, like secondary grief.

This project also gave me the opportunity to share my blog, something I have been wanting to do for a while now, but I was scared.  Scared of what people might think, how they might judge me.  Self conscience about my sometimes inventive spelling, that spell check doesn't even catch :) and my less-than-perfect grammar. Uncomfortable with the thought that some might think I am being dramatic or wallowing, when really I am just doing my best to be honest and real.

Despite my fears, I am so glad this project gave me the medium, and the courage to share my blog.  In a self-giving way, in honor of my girls and in hope that I can help others who are in this life-long, unwanted club of baby loss. But also in a self-caring way, in the hopes that I can help those close to us understand what Mark and I are going through, so you can know us better and in all humbleness, so we can ask for your loving support on this journey that is our life after loss.

Capture Your Grief: Day 29 - What Heals You

What Heals You

Carly Marie, the woman who set up the Capture Your Grief Project does a grief work shop called "What Heals You"

She says instead of asking "WHY" ask "What Heals You?"

I catch myself asking why a lot still, but I know that I won't find an answer. Or if I ever did, nothing, nothing, would be reason enough to lose my children.

So it isn't a productive question.

What Heals You, is productive.

What Heals Me, is talking about our losses, telling our story, telling our daughter's stories.

What Heals Me, is connecting with people, opening myself up and offering myself as a connection for others who are traveling down this road of baby loss.

What Heals Me, is being able to be honest about my feelings, to be authentic in everything that I do now, because life is too short and too fragile to mask who I really am

Capture Your Grief: Day 28 - Reach Out

After Elisa was diagnosed I balanced between wishful thinking and fear, between hope and utter despair.

One of the things that kept coming through my mind during all of the hard times was how I did not know how I could keep going without the loving support of those around me.  I was lucky to have the support of family, a warm home to come home to, health insurance and a job where I could work from home to continue working while on bedrest.

Shortly after Elisa was diagnosed,  I read a blog post of a woman in a similar situation as I was in, in that halfway through her pregnancy, the doctors told her the baby would likely not make it.

The difference was, at the first hint of trouble, her partner left her. She could no longer work due being on bed rest.  She didn't have any other family support. Things crumbled around her and when she left the hospital after her daughter was stillborn, she spent the night alone, sleeping in her car, because she didn't have anyone or anywhere to go.

I was heartbroken for her. I remembered the paralysis and helplessness I felt after Elisa's diagnosis.  Thinking I didn't know how I could go on without her.  It was the love and support of friends and family that kept my hope up, to move forward every day.  And then after she passed away,  the only reason I ate was from Mark or other family members cooking for me.  I was able to get out of bed by the encouragement of others.  I could not imagine how sad and alone that woman must have felt.

To many people, the homeless are seen as people who must have done something wrong in their lives, got in to drugs, committed crimes, and that is why they lost their jobs and their homes. That they somehow deserved the life the now had and that something like that could never happen to us. But as I read that woman's blog, in the depths of my own grief, I realized how that could have been me on the streets too, had circumstances been different.

Had I not been lucky enough to find a man who stuck by my side as we faced the oncoming storm, I would have had to endure the loss of a baby and of a partner.  Had I not had a job that allowed me to work while on bed rest, I would have had no income beginning November of last year.  Or a job that  paid me and guaranteed me a job back while I was on "maternity leave" I would have had no way of being able  to pay for my medical bills, light bills, rent.  Had I not had the support of family and friends, helping me to get back on my feet I could have lost everything.

I know that is a pretty extreme scenario coming from where I am, but it did make me think, how different my life would be, how my loss experience would have been had I not had the immense network of support I have today. I made a vow after reading that woman's story that I would not judge what brought someone to the situation they were in.

At that point in time, the only opportunity I had to get out of the house was our weekly or twice weekly appointments to our OB and to our High Risk Doctor's office.  Both of which were on first hill in downtown.  On the James street exit, we often saw homeless people asking for money or food.

It was November, it was cold and rainy.

So Mark and I decided we wanted to give back how we could.  We went out and bought a bunch of fleece blankets, and safeway grocery cards.

Every appointment we went to from then on, we handed out a blanket and a safeway card to each homeless person we saw.

I now keep safeway cards with me, and blankets in the back of the car all the time, so that we can reach out and give back in honor of Elisa our little fighter   With each card and blanket we give out, I wonder what sorrows each person has been through to end up where they are now any my heart aches for them.