Blank Space

We lost Presley five months ago today, right around this very time of the day. My due date is five days away. It has been looming out there the past few weeks and with it has brought an intense amount of anxiety. I just don't know how to be twelve weeks pregnant instead of thirty nine weeks pregnant. It makes no sense AT ALL. We buried Presley five months to the day before my due date. It really wasn't intentional and I'm not sure we were even aware of it at the time, but it has made March 14th feel all the more overwhelming.
Everyone keeps asking if I'm relieved to have survived my first trimester...not really. Right now I'm still focused on what feels like an eternal wait to viability. I am not going to feel one ounce of relief until I at least make it to the point at which a doctor will attempt to save my baby if something were to go wrong. At this moment in time it's difficult for me to look forward to milestones. We may find out the sex of this baby in a few short days, I was so extremely excited for that ultrasound with Presley, we brought our entire extended family and made dinner reservations to celebrate, this time, it just doesn't seem real. Don't get me wrong, we love this baby immensely, but self preservation has kicked into overdrive and I can't even bring myself to walk past the baby section of a store, better yet consider if we'll be buying pink or blue.
We live in a tiny three bedroom home, which we'll likely move out of before this baby ever arrives and yet one bedroom still sits completely empty. We really could use the extra square footage for the boys to spread out, or maybe an office, but it was meant for Presley, I had just chosen paint swatches the week we lost her. So instead, it's wasted space with a few random baby items stashed in the closet.
Life has been chaotic, the boys started spring football a few weeks ago, our bathrooms were all unexpectedly renovated last month and I started a new job. On the outside I might look like I've got it all together, but if you look a little closer, I'm a mess.
How do I grieve for Presley while anticipating the arrival of our rainbow baby, along with maintaining any bit of sanity for "normal life"?
It feels as though I'm wandering around in a wide open blank space. Nothing is as it should be. It's like I need to hit a rest button for this pregnancy, somehow trigger my brain to kick into maternal gear, but it just isn't happening. I know that this is just a season, I know that I have to take each day as it comes and I know that everything is in God's hands. Living in the "now" is just a tremendous struggle, it feels as if time is standing still. 

Choosing Hope

Well the news broke today, we are indeed pregnant. I cannot even begin to tell you how many discussions Brett and I had about who to tell, when to tell, how to tell who we chose to tell. At first we told nobody, then within days told our closest family members. After waiting a couple weeks, we told our closest friends. It became a bit of an obsession for me, this gigantic, overwhelming secret. A time that should be so filled with joy and excitement was, quite frankly, terrifying and stressful.

A few months ago Jill Duggar (sorry, I do happen to be a bit of a Duggar follower) caught a bunch of bad press when she announced her pregnancy very early. It really got me thinking, who created the stupid unwritten rule that a pregnancy should be kept private for twelve weeks. I hate to break it to you, but statistics aside, 12 weeks is not some magical moment at which all is safe and certain. I made it well past that "safe to make an announcement stage" before losing Presley. I was almost to the half way point in my pregnancy and despite most clinical odds, we lost her.

So today, on a whim, we announced to the Facebook world that we are expecting a baby. We have not made it to the elusive 12 week mark, we know that 1 in 4 women experience a miscarriage in their first trimester (yes, 1 in 4, it's staggering) we know that making an early announcement isn't for everyone. But as my little baby bump begins to develop, we chose hope. We chose to share this journey with those that we love. I choose not to hide in fear. I choose to embrace the love and support that has been such a vital part of our healing. 

What if something goes wrong? What if we face another loss? We will acknowledge and love this child just as we did Presley, no matter the days that it's tiny heart beats. We will not be consumed by fear. It is certainly there, rearing it's ugly head every time I feel a little off, every time I sit staring at an ultrasound monitor, every time I pass the empty nursery that our little girl never came home to. But I will not live in fear, I choose hope. 

Holiday greetings...

'Tis the season for Christmas cards, family photos, Santa pictures and an abundance of social media cuteness. About a week or so ago we received a few prints of photos we took of Presley. We didn't have a camera at the hospital and unfortunately since breaking my phone I'm stuck with the old iPhone 4 until my next upgrade comes around. The quality of the photos isn't spectacular and I've spent a great deal of time regretting that we don't have better pictures. I am grateful that I have the few that we did take. I don't ever want to forget how perfect and tiny she was. I want to always be able to go back and admire her tiny features when she feels far away.

I have only shared the pictures with one person outside of our family, and only did that because they specifically asked.

There have been lots of times that I've wanted to share a few of them, only because I feel like the idea of our baby is so obscure. Only those that were at the hospital saw her outside of ultrasound photos. But then the feeling that I'm "over sharing" takes over and I put my phone away. When you lose a baby there's a constant struggle between the parts of you that want anyone and everyone to acknowledge her existence and see that she WAS here and the parts of you that don't want to wallow in self pity while making those around you extremely uncomfortable. 

We have so few tangible reminders that I carried a baby, that our daughter was here if only for a whisper of time. The pictures have become a bit of an obsession I guess. I have laid awake many, many hours contemplating if I should share them with my kids. I feel like they deserve to see her, to see that this baby sister that they never held or kissed was real. But are they mature enough to absorb the impact of the pictures? I don't know...
Do I share these pictures with family and friends? Will others see them with the same beauty and admiration that we do? Probably not...

So as I look through chubby smiles and dimples sitting on Santa's lap, a super cute Christmas pregnancy announcement, a holiday birth announcement and perfectly complete family photos, where do our photos fit in? How do you express the pride and joy you have for your baby that didn't survive? I suppose I'm just wanting to put it out there, we have photos of our baby, they are beautiful in our eyes, but may not make the best Christmas card. 

Standing at the Edge

It's 1:42 am, the past several days have been absolutely crazy, wonderful and exhausting. I should be far too tired to be wide awake and I am, but here I lie, sleep evading me. I read an article today that compared stillbirth to standing on the brink of heaven and earth. It made so much sense...
Here you are experiencing the miracle of birth, following all the steps that occur in a normal live birth, but at the very same moment, you are experiencing death and eternity. It is the most overwhelming and unnatural feeling. Your body, heart and soul are so conflicted.
Conflicted seems to be my mood most of the time these days. I spent this past weekend making wonderful memories with Noah. We celebrated together as his team won a regional title. I cherished every moment as this is his last season in youth football. It feels as if he is growing up with every second that passes. I am hanging on to every moment with all of my motherly strength. 
But there, in the back of my mind, even in moments of pure joy, grief stabs at my heart. It is still so fresh and always there. It will hit me as I see a mother feeding her baby, a little girl in a tutu or even as I climb onto a roller coaster with my son, knowing I shouldn't be able to ride roller coasters, I should still be carrying a growing baby girl.
As the holidays approach, I feel frozen. It's as if celebrating, moving forward doesn't make sense. Life has derailed and yet it still moves on. And so, I am constantly trying to balance it all. Figuring out how to be Presley's mom while still being Noah and Parker's mom. Providing love, support, packing school lunches, helping with homework, while still clinging to the precious baby girl I held in my arms just six weeks ago.
Today I was supposed to call the medical board to give an interview about my complaint...I didn't do it. Instead, I played thirty rounds of "Heads Up" with Parker. Some days I feel like I have the strength of a warrior headed into battle, others I feel like I can barely move.
I'm not sure I'll ever master the art of mothering children both on earth and in heaven. It's a learning process for sure. For now, I'll focus on not becoming too consumed with either role and just do the best that I can at any given moment.

A glimmer of hope

The more we told our story in the weeks following Presley's death, the more we realized that what we experiened was not acceptable. But we also realized that it wasn't necessarily an isolated situation. As I've spoken to other women who have experienced loss, I am amazed at how many were treated so harshly by the doctors that were supposed to be caring for them. 
Brett and I have had several conversations about the fact that if we hadn't experienced complications and lost our baby, we probably would have been more than happy with the doctor we chose. He was always cheerful and answered our questions, he seemed very positive and upbeat. He certainly appeared to enjoy the pleasant part of his job. Who couldn't truly love ushering new babies into the world and sharing in the joy of their parents hundreds, thousands of times throughout a career? But what about the dark side of that job? If a doctor is so detached from the people he cares for can he really provide the best possible care? It's downright scary that he felt no need to physically examine me or conduct an ultrasound at my follow up visit. It leaves me feeling as if he just doesn't want to deal with that side of obstetrics and that makes me scared for every other woman in his care.
Once we realized the seriousness of what was "missed" after my delivery with Presley, it was hard to know who held the blame. The hospital likely should have been more thorough and my doctor certainly should have caught it (had he bothered to even check). My concern for others in the care of this hospital and doctors led to my decision to seek legal counsel. I in no way was financially motivated, no amount of money will bring my daughter back or change our experience, but maybe legal action would bring our concerns to light and spare another family the same experience. 
Little did I know, this would be another very painful step of our journey. I was referred to a wonderful malpractice attorney who took his time discussing the details of our case and truly wanted to help. Unfortunately, the laws in the state of Arizona make it nearly impossible to present a case of this nature. We absolutely cannot file a suit regarding the death of our baby because it isn't legally considered a death. We cannot pursue a case regarding my after care, because it did not (thankfully) result in death or dismemberment. 
After discussing all of this, I was left wondering again, what to do next.
I had placed a handful of phone calls to the hospital and attempted to obtain email addresses for leadership of the departments that were involved in my care, but met a lot of resistance and dead ends.
I finally made the decision to simply submit a very detailed "review" of my care through the hospital website. This was supposed to be a place for patients to brag about their wonderful, healing experiences. I typed away and poured out my heart, hit send and waited...two weeks went by and I assumed it was disregarded. Last week, I received a phone call from a woman with the hospital whom was in tears when she heard my voice. She was thanking me for my letter and apologizing profusely for our treatment. We talked for nearly thirty minutes and agreed that there is definitely room for a review of policies and procedures as well as some education. My letter has been forwarded on to leadership in the emergency and OB departments. A charge nurse from the ER has already called me personally to discuss the breakdown in my care and I am hoping this will all culminate with a face to face meeting with several members of their staff. 
Where this all will lead I'm not sure. But it only solidifies my desire to advocate for those that will come after me. In this world of loss and heartache lies a gift. The opportunity to see things in a different light. The whole "everything happens for a reason" cliche is not something I hold true. However, I believe that in every situation there is opportunity. I do not want my love for Presley to go unnoticed, I do not want her brief time with me to go to waste. I am praying that God will open doors and pave the way for something beautiful to come from the ashes.
"...and provide for those who grieve in Zion—
to bestow on them a crownof beauty instead of ashes,
the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair." 

Isaiah 61:3

Saying Goodbye

The morning after the sleepless night in which we lost Presley, the first task on my list was to make arrangements for her tiny body. Due to the confusion at the hospital, I was beyond afraid to leave her there any longer than necessary. My sister and I looked over the list of funeral homes provided by the social worker. If you've never had to do this, I can tell you it is one of the most baffling things to comprehend. How do you choose? Do you look at price, reviews, location??? Some offer discounts for infants and children, but it didn't feel right to search for a bargain when burying your daughter. So many thoughts raced through my mind, but ultimately it was just an urgency to pick something.
I had initially wanted to bury her near my grandparents, but that wasn't an option. Brett and I then discussed various locations and at the time felt the need to have her as close to us as possible. We know that she isn't there, I know with every fiber of my being that Presley is with Jesus. But when you lose a baby that you held for only moments in your arms, there is an indescribable need to have tangible pieces of them. For us, one of those things is the nearness of Presley's grave, we can go there often, take momentous and just spend time dreaming of who she might of been and wishing she were here.

Through a pretty basic process of elimination the first call we made was to Heritage at the Church of Joy campus. In addition to being close to where we live, I taught preschool there for many years, my boys went to school there and in many ways it will always feel a little like home to me. God had His hand in the placing of that phone call. After the traumatic experiences at the hospital the night before, we were treated with so much care and compassion by the staff at the mortuary. They handled every detail of our daughter's service and burial beautifully and were unbelievably gracious, for that I will always be grateful.
We decided to do a small graveside service with just our close family. I am normally such a social, more the merrier person, but  the thought of being surrounded by so many people and the fear of unknowingly leaving someone out, was just too much.
So on Tuesday, October 14th we gathered with our parents and siblings and laid our baby girl to rest. The grief and finality we experienced that morning still take my breath away. Seeing my boys in so much pain at the loss of their little sister is by far the most difficult thing I have ever experienced as a mother. We were blessed to have a long time friend and pastor conduct the service. He knew just the words we needed to hear and was such a wonderful, comforting presence. 

We cried, we prayed, we listened to "Nothing Lasts for Long" by The Samples, we laid pink roses in the ground and we let her go. As painful as they are I will always hold the memories of that day close to my heart. At the last minute I asked a family friend to take photos of the service. I realized that we would have so little to remember Presley by; no first steps, no birthday photos, no first days of school...so I needed photos of that day. The day that we honored and celebrated the existence of my daughter, if even for just moments.

Following up

The days that followed Presley's death are a bit of a blur, but there are moments and details that stand out in striking clarity. One thing that seemed of vital importance was to follow up with my OB. I called immediately Monday morning and requested a same day appointment, explaining to the scheduler what had occurred. She was cold and short with me, not so much as an "I'm sorry to hear that." 

I will never, ever forget sitting in the waiting room of that doctor's office (for over an hour). As we waited a couple came out from an ultrasound and sat directly beside us. They loudly shared their shock with a room full of strangers as they were just informed they were expecting twins and proceeded to call every member of their family to share the good news. I too have sat in that very room and marveled over the first few photos of our baby, but I have a new appreciation for the fact that not every woman in those chairs is elated over expecting a new healthy baby. Tragedies and heartbreak occur there every day.

When we were finally called back by a nurse, who we had seen just days earlier due to my concerns, she greeted us and asked if I was still having trouble. She had no idea why I was there. Had that not been noted in my chart when they were contacted by the hospital, when I scheduled the appointment? Or had they just not taken the time to look at my chart? Whichever it was, it made for an awkward walk down the hall to the exam room. The doctor stepped in a few moments later, shook our hands and said "Heard you guys had a rough weekend." As if losing your baby in the second trimester of pregnancy is comparable to rainy weather or a bad date.

The appointment went from bad to worse as he explained that the best cure for a loss like this is to just get pregnant again. He told us we'd be back again in a few months with a healthy pregnancy and forget all about this other stuff. Let me be very clear, no future baby will ever erase the memory of holding tiny, peaceful Presley in our arms and kissing her goodbye. Nothing.

I voiced concerns about a possible infection, which he brushed off and asked if I needed to return for a follow up physical exam, which was shot down. If I wasn't in such utter shock and despair at the time, I think I would have run from that office and alerted every woman in the waiting room that she was in the hands of a heartless and negligent doctor. I suppose it's better that shock kept me from that. 

I am so, so grateful that I followed my instincts and immediately found a new doctor. Two weeks after Presley's birth it was discovered that I had large portions of tissue remaining and was in danger of being sceptic and possibly having permanent uterine damage. I was treated and am now in the care of a an absolutely amazing, caring, attentive doctor whom I trust fully. 

This experience has taught me so many things, I know now from the early bleeding to my after care that you have to listen to your body and that not all doctors are to be trusted with your care. I second guessed my care throughout the weeks leading up to Presley's death but kept convincing myself that a doctor wouldn't tell me we were ok if we weren't. I will question the "what ifs" for the rest of my days. But I will move forward in an entirely different light.