I'm that someone else in nearly everyone else's plan

You read the books, prepared the nursery and picked out a name all in preparation of your new baby.  As your due date nears you feel as ready as you can.  There's always a small what if in your plan that something could go wrong.  But in your plan, that what if never happens to you.  In your plan, that what if always happens to someone else.  Someone you don’t know.

 I'm that someone else in nearly everyone else's plan.

 My son Owen was born right on time via an emergency caesarean after what doctors would consider a normal pregnancy.  However, it's what happened next that I wish there was an extra chapter in "What to Expect When You're Expecting" that could have helped my husband Troy and I navigate the next several years.

 I was in my post-op room with a flurry of activity all around me, but that didn't seem to faze me.  I was excited to be experiencing our first few moments with Owen while attempting to nurse him for the first time.  That's when I remember the nurse staring at me just asking if I felt okay.  Keeping her eyes on my monitors and anticipating something not quite right, she began performing a uterine massage. As any new mom knows, those uterine massages right after delivery are so uncomfortable and raw feeling.  But they're crucial to help with contractions and help prevent hemorrhage. 

Unfortunately for me, this is where my life changed forever.

All of a sudden, a huge gush of blood came out of me.  We didn't know at the time, but I was experiencing a postpartum hemorrhage caused by a uterine atony.  My uterine was failing to contract.  

I will never forget the look on the faces of the entire medical team in my room.  It went from happy and joyous, to flat out scared out of their mind in just seconds.  Calls and a slew of medical codes were being made over intercoms and a flood of nurses and other medical staff charged into my room.

I realized the severity of the situation when a young male medical staff member had entered the room to put an IV in my arm.  His hands trembling so bad, he was pushed aside as a nurse took over to complete what should typically be a simple task.  The head nurse called the doctor and I remember hearing her voice over the phone giving step-by-step direction as she made her way into the hospital.  Within seconds, she was in my room standing over me telling me what was happening.

The entire medical team was frantically trying to get the bleeding under control. They rushed me from the post-op room back into the OR, slamming my bed into the door frame just trying to get me out of the room as fast as possible.

That is the last memory I have of the night Owen was born.

The next day, I woke up in the ICU intubated.

I learned after losing more than 4500 mLs of blood (about 1.2 gallons), I had received 12 units of blood and blood products and due to the severity of the hemorrhage and many failed attempts to get the uterus to begin contracting, an emergency hysterectomy had to be performed. In addition to surgical soreness, I woke up with severe pain, numbness and weakness in both legs and feet. 

I spent the next few days in ICU with my husband and other family members by my side.  I don’t remember much from my time there, but one vivid memory I do have was the medical staff doing everything they could to get Owen down to my room even though newborns were not supposed to leave the nursery without their parent.  I’m so thankful our camera was sitting on the side table - a nurse picked up our camera several times and snapped a few candid photos which now help trigger happy memories.

The pain, numbness and weakness in my legs persisted - the doctors and nurses thought my nerves were in shock due to the large blood loss and sent me through a series of physical therapy exercises in the hospital before being discharged just to see if I could get in and out of a car, and into the house. 

 My OB doctor also required both my husband and I to speak {separately and together} with a therapist before leaving the hospital to go home to help with any potential PTSD.  At that time, I didn’t realize how much I needed those sessions, and I am so thankful that she foresaw the uniqueness of our situation and the potential onset of PTSD.

Nearly a week after my son was born, we made our way home and started to make our way as a family of four with our daughter, Evelyn.

It was tough.  I was physically so weak from not only the hemorrhage and hysterectomy surgery, but also weak and in so much pain with the nerve issues in my legs that I couldn’t help much.  My husband handled nearly everything – meals, baths, diaper duty, night bottle feedings, cleaning, everything.  Due to the amount blood loss, my milk supply never came in so I couldn’t even help feed our newborn.

Then, 17 days later, it happened again.  At home.

This time at 1:30 in the morning and no medical staff around.  We were scared.  Blood was gushing all over our bed sheets.  Troy helped me to the bathroom while he called 911.  I was shaking uncontrollably and scared out of my mind.  I thought my luck had expired.  I thought I was going to die.

Minutes later, a police officer appeared and soon the ambulance crew.  I passed out for a bit as they tried getting me on the stretcher.  While getting wheeled out to the ambulance, I saw my sister-in-law’s vehicle come flying down the road to get to our house.  We were so thankful they were nearby as her and my brother-in-law ended up caring for both kids over the next five days while my husband and I spent time at the nearby university hospital. Before getting airlifted to this hospital, I remember looking at my doctor.  She held my hand and said: Think positive thoughts.  You’ve got this.  I forced myself to stay awake the entire flight down, blinking fast so I wouldn’t fall asleep and repeating what she said over and over again.  

My secondary postpartum hemorrhage was caused by pseudoaneurysm at my left uterine artery.  A CT scan found a 11 cm pelvic hematoma which required an emergency uterine artery embolization.

I again got sent home, unable to stand, walk or do any basic household functions.  I made my way around our house with a clunky walker and, most days, not making more than 50 steps throughout the day.  It was sad and depressing.

When I returned to the university hospital just a few days after discharged for a check-up, I was recovering well from my surgeries but they were shocked to see my mobility issues had not improved.  They sent me to a neurologist where they completed an EMG.  The results: L5 radiculopathy (nerve damage) and foot drop, most likely due to nerve compression.  The outlook: a slow recovery with a high likelihood of not being able run or walk normally again.  I was sent home with a prescription for physical therapy and a “good luck” from the neurology department.

This was devastating.

The car ride home after this appointment was somber.  At that time, I was envisioning myself crippled for the rest of my life.  My life before this was flashing in front of me.  My independence was gone.  Parenting visions, nonexistent.  Future travel plans, vanished.  Everything was no longer what we planned for our little family of four.

Over the next several months, I met with both a physical therapist to help regain my physical strength and mobility, but I also continued to meet with a therapist to help my mental health, allowing me to heal from my PTSD.  I am thankful for my family and friends who would stop by our house everyday to help care for Owen while Troy would take me to my numerous appointments.  He never missed taking me to single appointment and was by my side every step of the way. 

I had a great physical therapist who saw my desire to get better and pushed me outside of my physical boundaries.  I had happy cries and sad cries during these appointments, and he would sympathize and celebrate the accomplishments right along me.  About five months after starting physical therapy, I was discharged.  I was walking confidently and beginning to run again.  While my nerve damage hadn’t healed completely, I was about 75% healed and continuing to get stronger every day.  Getting discharged was a monumental moment in my post-pregnancy recovery.

Fast-forward about 18 months.  Owen was just shy of two years old when I started feeling off.  It was hard to explain, but I just didn’t feel physically well.  I was experiencing physical aches and pains, brain fog, extreme fatigue, physical weakness, zero appetite, shortness of breath, just to name a few. With the broadness of symptoms, it’s easy to understand how a doctor would just write me off.  But with the consistency of being brushed off appointment after appointment, especially with my medical history, it was hurtful, disappointing, and flat out sad. 

Within about a 6-month time frame, I had been tested and misdiagnosed with everything from shingles to multiple sclerosis to fibromyalgia to depression (and countless other misdiagnoses in-between).  In my gut, I knew it wasn’t any of those, and I knew it was something more.  My gut was telling me it was something tied back to my medical experience after Owen, but I just couldn’t put a pin in it.

Then, one day, I heard a random radio commercial about a hormone treatment for women experiencing low estrogen.  My symptoms were eerily similar.  I asked my primary doctor if she could run a few hormone tests.  She agreed.  My results came back; I had no trace of estrogen in my blood.  I was 33.  My doctor said that was normal.  I lost it.  I never returned back to her office.

At that point I knew something was off with my hormone levels, but just unsure what.  I continued to do research on my own every night when the kids went to bed.  One night I came across a Facebook group for women who experienced a postpartum hemorrhage that resulted in an emergency hysterectomy.  Releasing all my vulnerability, I posted all my symptoms.  Then, one fellow member suggest I check into Sheehan’s Syndrome. 

I did a quick Google search and within minutes I was in tears on the phone with Troy saying that I figured it out.  I made an appointment with my OB doctor to ask her what the possibility of me having Sheehan’s Syndrome.  The look on her face was like she had seen a ghost.  She got tears in her eyes, apologized to me countless times while saying she couldn’t believe that she never thought of that.  She ran a few blood tests and immediately referred me to a specialist where I underwent additional tests, labs and screens to confirm that yes, I indeed have Sheehan’s Syndrome, a form of hypopituitarism.

The pituitary gland is the command center for all your hormones – it triggers specific organs to release hormones and function the way they need to.  To put a visual, a normal woman’s pituitary gland looks like a pea.  It’s smooth.  When a woman becomes pregnant, the pituitary doubles in size and looks more like a grape to support the growing needs of baby.  After delivery, the pituitary gland slowly goes back to looking like a pea.  I lost so much blood so fast that my pituitary didn’t go back to a pea-like status, instead, it looks more like a raisin – a little smooth and a little wrinkly all over…meaning it doesn’t quite function on the wrinkly sides. 

My Sheehan’s treatment is a series of lifelong hormone replacements, including estrogen, growth hormone and cortisol.  Thankfully the side of my pituitary that was damaged did not impact my thyroid.  Testing also confirmed adrenal insufficiency.  Learning to live with a rare disease that very few people are familiar or understand is a struggle.  It's sad, a little stressful and a bit scary when a doctor acknowledges the rareness of this disease and says that my husband and I probably know more about how to predict and treat adrenal insufficiency than most medical staff.  The hardest part is when you become sick – you’re not sure how your body is going to react, while body takes longer to heal. 

From a mental well-being standpoint, I completed a series of different type of desensitization treatments that have helped soften my memories.  I wanted to make sure I remember what happened, but I didn’t want to cry or get scared every time I thought of Owen’s birthday. The treatment I found most helpful was eye movement desensitization and reprocessing (EMDR).  I had a great therapist that I connected with – she was kind and patient and helped work through the entire process of EMDR.  I was no longer scared to go to sleep in fear that I would wake up in a puddle of blood.  My heart no longer started racing when I heard a helicopter overhead, triggering my time I was airlifted to the university hospital.  I no longer get upset, sad or jealous when I would see a new mom standing to sooth her newborn baby.  I’m able to easily celebrate Owen and the milestones and blessings that I have gone through to get to this point.

While my birth experience was absolutely nothing what I ever could have predicted, it has made me a stronger person both mentally and physically.  I wish it had never happened the way it did, but I am here, and my son is here and for that I am forever grateful. 

Sure, I have hard days and weeks, but I feel like I came out of it stronger because of it.  I advocate and share my story in hopes I can help just one person, whether it be a new mom or a medical professional, to keep an open-mind and to continue advocating for themselves (or the patient) to find the answers if they feel something is off.  An answer is out there, and its my turn to write that chapter of random what ifs so a mom can find help and seek closure on an outcome that may not have gone according to plan.