The beginning of the end...

I had originally planned to write my story fully without leaving anything out.

I became unsure about doing so.

I then realized without doing so my baby boy's "birth" would not be documented.

Monday, February 28th

Today was the day the process would begin. I was in a constant state of anxiety from the time I woke until the time of our appointment at 11 am. I was anxious. I was sad. There were no other feelings coming through that I can pinpoint. The anxiety overwhelmed the sadness.

G and I were early to the appointment. We had decided to grab a small bite to eat at the small pseudo french cafe in the building my doctor's office was located. I had a water and a croissant. I could still not fathom drinking a cup of coffee or anything that could possibly disturb my baby boy. I was instructed to take 3 Motrin 30 minutes beforehand. I took them at 10:30 am. They choked me with tears. This was the first medication I had ingested since I found out I was pregnant.

We anxiously watched the clock. I cannot say I was scared of the pain that I would endure. I was without a doubt prepared to handle a few days of pain to save any pain that my baby boy would endure if he made it to earth.

The doctor's office was comforting in an eeary way. I was "lucky" enough to be referred to a perinatal who also terminates late-term pregnancies due to medical reasons. She wasnt the most comforting doctor but she had years of experience and I trusted her.

We first met with the nurse who explained the procedure in detail. I couldn't stop crying. Crying for my loss. Crying because it was all just so unfair. Crying for my unborn baby boy who truly never had a chance. G comforted me but my tears led to his eyes welling up. The nurse then explained the laminaria insertion. They would insert 12 laminaria to dialate my cervix. The word dialate pained me.

The doctor came in shortly after and explained the terminal diagnosis. I undressed and entered the stirrups. The laminaria insertion was without a doubt painful. There is nothing I could possibly compare it to. What got me through it? G standing at my head and holding my hand tightly and knowing that I was truly doing this to "save" my baby boy from pain. My doctor was quick. Like I had said previously she may not have the best bedside manner but she is an esteemed doctor with years and years of expertise. The emotional and physical pain led me to shake. The loss of blood let to me almost fainting trying to get up from the examining table. I quickly laid back down as G caressed my head.

I was given a prescription for pain and a prescription for antibiotics. I was also given Misoprostol to be inserted vaginaly 2 hours before surgery.

As I left the office I felt brave. I was indeed very very sad but for the first time since we were given the diagnosis I had felt strong not weak.

I spent the majority of the day in bed. I was both physically and emotionaly exhausted. I cried a lot. The pain of knowing my cervix was dialating for my baby boy's "birth" killed me inside. The pain of knowing tomorrow he would be "born" at 19 weeks and 6 days. The relief of knowing he would be at peace and I would hopefuly find closure. The anxiety of the unknown.

A Weekend Full of Pain

As instructed I called the nurse the following morning to schedule surgery. She had to contact the hospital in order to reserve an operating room. I waited for a call back. I had high hopes of a date sooner rather than later; possibly Thursday andFriday of that week. I couldn't imagine having to endure the weekend in the state I was currently in. The nurse called me back later Wednesday afternoon andI would no longer have to imagine the pain of enduring the weekend because it was now a reality. I was scheduled for laminaria insertion on Monday at 11 am and surgery for Tuesday at 8:45.

I hung up the phone with a series of mixed emotions. I was beyond grateful I was able to receive the services I needed. I had doubt in myself getting through the next 5 days. I was deeply saddened by the end result of the choice I was forced to make.

Never in a million years could any amount of words give justice to the emotional pain I endured during the 5 days of waiting for what would be the most devastating 2 days of my life.

G had taken Wednesday, Thursday and Friday off to be with me. I thought I would be able to go back to work on Thursday. I was wrong. I couldn't sleep. I couldn't bear to take something to assist in sleeping due to my no meds during pregnancy rule. I was still pregnant. As far as I knew my baby boy was peacefully sleeping in my womb. I couldn't bear to disrupt him in any way. I wanted to suffer. I welcomed the pain. It became the only way I could cope. It became the only thing I thought I could possibly do for my baby boy.

I returned to work on Friday. I cried a lot. As hard as I tried I couldn't collect myself. I remember a close coworker of mine once asked me if I was ever upset or depressed. I responded, "Of course! I just easily hide being upset." There was no hiding my devastation and sadness on Friday. I wept alone. I wept on a close coworkers shoulder. I wept to my boss while discussing my leave from work. I wept every moment I had a chance knowing this was the last day I would be at work with my baby boy inside of me.

The weekend was full of sadness and fear. I continued living my pregnancy lifestyle. I was indeed 19 weeks and 3/4 days pregnant. I was carrying a baby boy who's heart was beating 160 bpm. From the outside I was the average 2nd trimester pregnant woman complete with tailbone pain and cravings. From the inside I was grieving as I knew my pregnancy was going to come to an end just after the weekend passed.

I fought the cravings. I fought the nighttime trips to the bathroom. I squeezed into my non-maternity jeans. I hid my baby bump as quickly as I embraced it. I once would lay silently with my hand on my belly hoping to feel my 1st kick instead I feared feeling it. I cringed when G embraced or touched my belly. I instantly erupted into tears when I encountered random pregnancy paraphernalia (baby book, fetal heart monitor, belly balm). I began hoping to find blood when I went to the bathroom. My wish that he would be able to leave on his own terms.

I couldn't bear to disrupt my baby boy's last days in my womb. I continued taking my prenatal vitamins which came with my first morning tears. I couldn't even think of disrupting him with caffeine. I wanted to be the best mommy I could if that makes sense.

On Sunday I had quiet words with my baby boy. I told him I loved him with all of my heart and explained to him that my Great Aunt Josie and G's Grandmother would be taking over for me when he reached heaven.

To say the weekend before my surgery was tough is a gross understatement.

A Heartbreaking Confirmation

I spent the majority of Monday evening in tears. They were uncontrollable tears. The amount of tears that take away your breath and sting your cheeks. I anxiously waited for G to get home from work. I cannot begin to explain how much I needed to be in his arms.

He arrived home. We talked about the situation. We talked about the options. It was a repeat of many of the days that passed but with a little more reality and I hate to say this a little less hope.

The following day was what I had considered "the day". This was the day things would be confirmed and decisions would be made on the terms G and I had discussed the previous evening.

I had decided it was not needed for G to take the day off of work and to be honest I really wanted him to be sheltered because I needed him strong. In the end this was a selfish decision that made little sense if any. My Mom and sister wound up going with me to the perinatal specialist.

We arrived early and waited in the small waiting room for over an hour due to an emergency the doctor had encountered. The wait was miserable. Little did I know there would be another wait even more painful than the 1 hour I waited to hear about my baby boy's destiny.

The doctor arrived and my heart dropped. I had anxiously awaited her arrival and now that it was time to speak to her I wanted to stop the clock. I wanted to shelter myself.

She reviewed my ultrasound reports and couldn't tell much from them. She immediately rushed me next door to the ultrasound office. This was something I felt I had sheltered G from... another glimpse of our baby boy. I was flat on the table and unable to breathe. I attempted to shelter myself from the sight I sheltered G from but I couldn't. When I saw him clearly on the screen and his heart beating my hope had returned. I can tell you my hope was fierce. I quickly looked away as the ultrasound tech had difficulty finding the screenshots the doctor needed. I moved from flat on my back, to my left side and to my right side trying to squander some pictures that would give me hope. I felt I could change the end result. He was in a fetal position. I glanced toward my doctor who was mouthing "he isnt moving much" to my Mom.

After about 1o minutes my doctor called for another doctor to give his opinion. They whispered back and forth "cerebellar vermis, hydrocephalus, posterior fossa". My eyes were closed the majority of the time but I opened them to see the doctor mouth the words "not good" to my Mom who was for the first time seeing her first grandchild. They continued examining the images. The doctor who was giving his second opinion reached down to me, held my shoulder and told me it was not my fault and it could have been a fluke.

More tears but they were tears mixed of grief and comfort. To an extent his words comforted me.

The ultrasound tech and outside doctor left the room leaving my Mom, doctor and I remaining. My doctor diagnosed Dandy Walker Malformation which after all of the research I had done I knew was much worse than the "possible Dandy Walker Variant" 1st diagnosis I had received. She also told me there was water on the brain, Hydrocephalus. In addition, there was a 2 week delay in his growth. She explained to me that there were possibly more issues that could not be viewed from the ultrasound because of the fetal position and lack of movement.

I was lost for words. I was lost for feeling. My eyes flooded with tears that were escaping quicker than I could keep up with. This was the confirmation I feared and hid from.

It was already 5:15 and the doctor had told me that she had instructed the office not to close because she wanted to offer me an amnio in case I needed more information to make a decision on how I wished to progress. I shaked my head. I knew this was the end for my baby boy. I couldn't imagine the suffering he would endure if he even made it through birth.

Reality

February 21, 2011:

I woke up Monday morning like any other Monday but with a reality of the past revelations. I knew I had to take action. I couldnt float within the clouds forever.

I arrived at work and watched the clock tick anxiously waiting to make my level 2 ultrasound appointment. They opened at 8:30 am. I called at 8:35. When under stress there are details that will forever remain etched in your mind. I was instructed to bring a copy of my previous ultrasound reports with me to my Friday 12pm appointment.

I hung up and called the hospital for a copy of my reports. After numerous calls back and forth they were able to locate my ultrasounds from the ER back in January and from my most recent which were done in L&D. I decided I would pick them up after work.

I felt in control. I called my midwife to let her know of my appointment and to let her know I located the ultrasounds and would be faxing them to her that evening.

Later that afternoon I missed another telephone call from my previous OB. It was at this moment I knew I needed to call her back and here what the ultrasound truly depicted and what it meant for my baby boy. I called her back and immediately began crying. She expressed her concern. I cried to her about the poor treatment I encountered at the hospital. Perhaps attempting to avoid to hear what was to come. Between cries of pain and fear she then told me that it was very important for me to see a genetic’s counselor. I told her I was going to get a second opinion. She told me that she would do the same but my baby boy was diagnosed “possible Dandy Walker variant” and the diagnosis is probable. This is the first time I had heard the term. She explained the seriousness over my cries. I dropped the phone onto my desk as I said goodbye.

I will never forget the incessant cries that left me breathless. I left work immediately after the telephone call. I probably shouldnt have drove myself home. I was in a transient state mixed with tears, anger and misbelief.

My sister met me at home. I asked her to pick up the hospital ultrasounds for me. I couldnt bear pick them up myself. She came back to the house after picking them up. She huged me and offered all of her support. She comforted me and told me the few words that have come to comfort me though everything ”God knows you are strong and have a support system to get you through this. That is why he chose you rather than someone else.” Deep and true coming from a 16 year old.

I gathered all of my strength and called my midwife. She explained the diganosis in more detail and referred me to a perinatal specialist who also if needed offers late-term terminations due to medical diagnosis.

At this point I still could not bear tell Armani about the possible diagnosis. At this point it was all real to me. I wanted to shelter him from the pain.

I called the perinatal specialist who expressed her concern over a Dandy Walker diagnosis. She wanted to see me ASAP due to being almost 19 weeks along and the severity of the diagnosis. It was at this point that I knew the prognosis wasnt good, not good at all.

I called my fiance, G immediately after I hung up the phone. The guilt I felt was heavy. He was strong. He assured me we would get through this together. My sister’s comforting words rang true.

We held each other tightly that night. We cried together. In between we discussed our options.

Limbo

February 18, 2011:

Immediately following the ultrasound I went to work. I was asked by a close coworker how the ultrasound went. I broke down in tears. This is when I decided to keep hope. I picked myself up. There were no definite answers and in my heart he was my healthy baby boy.

I received two phone calls from my OB. I did not answer them. I was in the middle of switching from an OB practice to a group of midwifes. My OB actually wrote up the ultrasound order. I knew she would receive the results. I decided it was best not to call her back. It was a Friday and I wanted to spend the weekend with my healthy baby boy. There was nothing I could do at this moment. Looking back I feel this was a smart choice on my part. I spent the weekend in a middle ground of worry and contentment but I held on with all of the hope I could muster.

I didn't call my OB but I did call my midwife who instructed me to get a second opinion. At this point in time I was still unsure what the ultrasound depicted with the exception of the mumbled words of the doctor saying the baby's head was abnormal and he had growth issues. I called to make an appointment for a Level 2 Ultrasound. They were already closed for the day. Leaving me in more of a limbo.

I spent the weekend in a somewhat upbeat positive demeanor. I shared the first picture of my baby boy to my close family. Although I did not feel comfortable announcing his sex in a formal manner. I was in a painful limbo but still continued to smile when and where I felt safe. I am unsure if it was because I truly thought everything was normal or because I knew this would be one of my last weekends carrying my healthy baby boy.

A Happy Day Turned Gray

February 18, 2011:

"Its a boy" these words made our hearts flutter. G feverishly texted close family members of the news as the ultrasound technician continue to trace my belly examining our unborn son.

The doctor entered and took over. His news made our hearts drop. There was definitely without a doubt something wrong. In his words as he walked out of the exam room "there is something abnormal and the baby is measuring 2 weeks smaller than your 18 week 2 days. " He then told the ultrasound tech/nurse to set an appointment to see a genetic counselor.

There was no compassion. He left before we could ask a question. The news was actually brought to us as he quickly left the room.

We were escorted back into the single patient sized room makeshifting as a waiting room. I couldnt collect myself. I cried and cried. The small waiting room full of happy expectant couples made the tears flow heavier.

We left before speaking to the genetics counselor. We were too distraught to wait in the conditions given to us. I was too fragile and G attempted to be in denial.

The ride home was quiet. We held hands tightly attempting to try and comfort each other. We then held onto the hope we had. The atmosphere of the ultrasound wasnt comfortable and we attempted to believe they could be wrong.