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.

The day that everything changed

I arrived at the hospital around 4:30pm, went through the ER and was pointed in the direction of OB triage. I waited a couple minutes as the nurse at the desk helped another couple. When she called me forward I explained that I was a little over 18 weeks and without asking anything else about my situation said I'd have to go to the ER, because they couldn't see any patients earlier than 20 weeks (I was TEN days away from their cut off). Frustrated, but determined to be seen ASAP I hurried back through a maze of construction to ER admitting. As I explained my symptoms, the triage nurse sweetly smiled and asked if I was certain I wasn't having "bladder issues" I assured her that wasn't the case and after weighing me and taking my temperature they took me straight to a room. The nurse that initially saw me explained that they had to contact my doctor before determining how they wanted to diagnose whether or not my water had truly broken. They could order an ultrasound to check fluid levels or conduct a swab test, but that had to be done in labor and delivery and I quickly got the idea they were avoiding transferring me to that floor. At this point I wasn't having contractions, so they were pretty certain I was "just fine"
As I waited to be taken for an ultrasound, the nurse decided to do a pelvic exam. This was a turning point in my labor. Once she completed the exam, I immediately started having contractions that were strong and less than two minutes apart. Shortly after that Brett and my sister arrived, I was so grateful to no longer be alone, this was going from bad to worse very quickly. We waited maybe 15-20 minutes to be taken for the ultrasound, during this time the ER doctor stepped in and said that they had to "determine I wasn't having a miscarriage" before they could do anything else.
Having delivered two babies previously, I was baffled that I wasn't being monitored for contractions and the baby wasn't being monitored in any way. I had experienced preterm labor before and the first thing they do is place you on fetal heart monitors and monitor contractions. How could they help me if they didn't know what was happening???
The ultrasound was excruciating, they wouldn't let us see the monitor, nor could the tech give us any info. I laid there, still leaking fluid, staring at the ceiling and prayed with all my strength. By the time I was wheeled back to the room, contractions were extremely intense and I began to get sick. My sister stepped out and asked a nurse to come in. After a few minutes they handed me a Vicodin and again left the room. Shortly after taking the pain medication, with no medical staff present and haven't being checked for nearly an hour, I delivered Presley with Brett and my sister by my side. I remember the fear and crying "I'm losing her" I knew she was under the sheet and I asked my sister to get some help. Before she stepped out, a moment I will never forget, she checked and new that it was over. The minutes after her delivery were a blur. Brett and I were in shock and utterly devastated. It happened so quickly and if the medical staff was aware of what was taking place, they never informed us. We were left in the back corner of the emergency room to deliver our daughter alone.
The hours that followed were full of confusion, I eventually contacted my friend Karen, with Forget Me Not, because we were being treated as if our baby didn't exist. The OB doctor that eventually saw us for less than five minutes told us that we would likely never know why we lost our baby and stated that the hospital could "dispose of her remains" for us. I was terrified. There I had sat clutching my baby girl for hours. She had the tiniest fingers and toes, beautiful lips, eye brows, eye lashes...and we were expected to just throw here away?!? I insisted we sign documents to make arrangement with a mortuary. This led to even more confusion, I was asked to sign papers multiple times because nobody seemed to know the proper protocol. Eventually we saw a social worker who seemed to know what to do. But that fear was gripping me. What if we couldn't get our baby back?
After Brett and I had some time with Presley and our families were able to spend a few moments with her, we finally made the impossible decision to let her go. What happened next, I will spare you the details, but our baby was treated with absolutely no dignity. It is a memory forever seared into my mind.
I share this part of our story in so much detail because every step of the way, and even today, I am at a loss as to why a pregnant woman, at any stage of pregnancy would be turned away from a triage where staff specializing in this area can treat a patient. If I had discovered the day before in my doctor's office that my baby's heart was no longer beating, I would have been scheduled for an induction through labor and delivery and received much different care. But because my baby was (likely) still alive when I arrived but my labor couldn't be stopped, I was forced through the ER where they were completely and totally ill-equipped for my situation. It is heartbreaking and makes no sense. I have reached out to the hospital in various ways, not to lodge a complaint, but to spark a conversation about how traumatic this experience was. But my phone calls and emails have gone unanswered. My hope is that by speaking out, my voice might be heard. My prayer is that somehow no other family will have to face this life altering experience in the same way.

How it began

These next few posts will not be for the faint of heart. My intention is not to disturb or traumatize anyone. If you're not prepared to hear details of my pregnancy loss, turn back now. I completely understand that it's not something everyone wants to be a part of and I truly respect your feelings. 

Everything about my pregnancy with Presley was by the book the first 15 weeks. I began to show VERY quickly, which led to any early announcement. I was absolutely convinced I was carrying twins until I saw the first ultrasound, with just one tiny heartbeat. I wasn't nearly as sick as I had been during my pregnancy with Parker, which was a blessing. I did feel like I had been hit by a truck most days, but that could be expected, right? I am thirty five years old, my last pregnancy was eleven years ago, I was in the process of moving into a new home and keeping up with two adolescent boys. Because of the timing of our first prenatal visit, it turned out that we received and ultrasound at each of our first four appointments. It was exciting to be able to see our baby healthy, moving around and growing each time. At just over 14 weeks we took our entire extended family for a gender reveal ultrasound. There on a big screen, with 15 of our loved ones, we learned we were expecting a girl. We were SO very excited and I was in total disbelief! It took a few days to really sink in before I started to embrace the frills and pink.

Then, things began to change.

On Monday, September 29, I woke up spotting just a tiny little bit. I tried to tell myself not to panic, I had heard of this happening in pregnancy, even though I had never experienced it myself. Throughout the morning it persisted and panic took over. I had experienced some abdominal pain over the weekend, nothing excruciating, attributed it to the fact that my belly was rapidly expanding. I called the doctor and his medical assistant sweetly offered to let me come in for an ultrasound just to give me peace of mind. I was terrified as we sat waiting to see our little girl on that monitor, but sure enough, there she was. Heart strongly beating, hands and feet moving. The tech even double checked her gender, I was now 16 weeks and it was most definitely a girl. The doctor met with us for a few minutes, assured us that everything looked wonderful and that my unexplained bleeding was nothing to be concerned about. 

The spotting continued throughout the week and my concern grew as we were preparing to travel to Denver with the boys. I called the doctor again on Friday, October 3, and spoke to the medical assistant, who encouraged me to take the trip and feel comfortable doing all the things I would normally do. She assured me again that the baby was healthy, everything looked great, I had nothing to worry about. We made the trip and had an amazing time making lifelong memories with the boys. We knew that this would likely be the last big trip we took as a family of four and we made the most of it. I was definitely feeling uncomfortable, I kept saying that I felt so much further along than I was. There was a lot of pressure and lower back pain. But every pregnancy is different, right? 

We returned from Denver on Monday, October 6, and throughout the week the bleeding persisted and eventually increased to the point that I was convinced something was wrong.

On Wednesday, October 8, I went back to my doctor's office, they were able to squeeze me in at the very end of the day. This time I saw the doctor before having an ultrasound, I burst into tears the moment he entered the room and, all smiles, he assured me that everything was fine. He checked her heartbeat, which was 158 bpm and sent me for another ultrasound, just to put me at ease. This ultrasound went about the same as the last, there she was, heart strongly flickering, squirming around, placenta looked "fine" nothing to worry about. Just that unexplained bleeding that had me so worried.

I came home and just felt awful all night long. I remember texting Brett and telling him I thought I was coming down with the flu. The next day I pretty much stayed off my feet all morning and drank as much water as I could. I picked my nephews up from preschool, fed them lunch and got into my bed while they napped. As I was laying there, I began to leak fluid. I knew immediately that's what was happening. I tried to convince myself otherwise, but every time I moved at all, sat up, took a step, there it was. I called my mom and sister completely hysterical and raced to the hospital. I chose not to go to the closest ER because I knew that Banner Thunderbird had an OB triage and wonderful labor and delivery staff. I knew that I'd get the best of care if I drove just a few extra miles...

It turns out, I was completely and totally wrong.

What now?

For four weeks I have struggled with one recurring, nagging question...what now???
When you're expecting a baby that becomes the primary focus in your life. You try to eat the right things, rest enough, endure discomfort, illness and fatigue, all with one final goal in mind. I can tolerate gaining weight, stretch marks, aches, pains, nausea, all because I know it is worth it. That snuggled, sweet smelling bundle of joy that rests on your chest at the end of nine long months is completely and totally worth every discomfort and sacrifice you make during pregnancy.
But what do you do when you've endured the unpleasantries, survived the crucial first trimester and then, in the blink of an eye, it's over. Your body has betrayed you and there is no softly breathing, warm cuddly baby to make all those not so pleasant moments just disappear?
My experience (which we'll discuss in more detail later) was, in one word, awful. There is never a "good" part of losing the baby you had hoped for, dreamed of, carried close to your heart, but there are ways to make it a little more bearable. Unfortunately, for Brett and I, none of those things happened. 
As I have laid awake countless hours at night, sat mindlessly at my boys football practices, drove around town doing the errands I now hate but can't avoid, that one questions keeps haunting me...what now?
I have come to the conclusion that I must share our story. I must be brutally honest, leave no stone unturned, I must yell from the mountaintops (or a blog) until our story is heard. I will not allow Presley's birth and death to be in vain. I will not sit by quietly while one more family suffers the same experience. I will advocate for infant loss families with every bit of my strength. 
If hearing our story makes you uncomfortable, it should. If you are appalled, frustrated, dismayed, allow that to spark in you the desire to promote change. Doctors are supposed to be trusted. Hospitals are supposed to provide safety and healing. Our loss has proven that unfortunately, that's not always the way it works.
I have made an effort to seek legal advice, reach out to patient advocates, file complaints with the medical board; at every turn, I am met with avoidance and dead ends. So I will take to blogging, because my voice must be heard. Please know that I am not motivated by anger and bitterness, but by an overwhelming desire to educate and advocate for others who may have to walk this same, tragic road.