Our Indescribable Loss

For the past two years, our family had tossed back and forth of when to expand our family of three to four. Both Travis and myself are Type A personalities so the timing had to be just right. After many months of disappointment, we finally found out that we were expecting in October. From that very moment I had my guard up deep down inside of my soul. Of course, my outer emotions were thrilled and overjoyed but I was truly nervous about this particular pregnancy. Travis and I decided that we would tell our parents about the pregnancy and shortly thereafter our siblings and special friends found out the news. We were extremely hesitant to announce our pregnancy until we reached our 12 week point.

The day arrived when we were going to hear our baby’s heartbeat. Unfortunately due to scheduling conflicts, I would be attending this OB appointment alone (which I will never be doing again.) My amazing OB, Dr. Logan listened to my concerns and worries and was able to put the focus back on the positives and hope of the day. She placed the heartbeat monitor on my belly and low and behold we heard it; the heartbeat! I don’t know if I didn’t think that we were going to hear a heartbeat but I felt like 20 lbs. had just been lifted off of my shoulders and it felt so good! Dr. Logan rejoiced with me for a few moments before asking me if I would like an ultrasound. At this point, I was so happy that of course I wanted to see our bundle of joy.
As I waited outside of the Ultrasound room, I texted Travis to tell him the good news of the heartbeat and explained that I was going to get an ultrasound to check my cervix length and SEE our baby. During my ultrasound, I remember being in awe as I watched this baby “swim” around in my belly. I remember having a conversation with the tech about how it is so amazing that the baby has so much movement, yet I didn’t feel a thing. The tech ran some tests, shot some pictures, and told me that they baby looked a little small but she might have gotten a bad shot because the baby wasn’t cooperating due to the cold weather. She led me back into Dr. Logan’s office where my life would change forever!

Have you ever sat in your Doctor’s office? It is pretty intimidating, to say the least. As Dr. Logan examined my ultrasound pictures from her computer, I was observing all of her degree’s on the wall, her family photos, and her humorous art that decorated her office. In her soft voice she said, “Lauren, this baby is measuring small for its gestational age. I am very concerned with its growth.” It felt as if someone sucked all the air out of the room and I was left with no oxygen to breath. That weight that was taken off my shoulders minutes before had quickly returned with an added 100 lbs. “What does this mean?” I quickly asked. She explained to me that one of three things is happening. 1. That the baby is not growing and will end in a miscarriage. 2. That the baby is very sick. 3. That the ultrasound tech. got a bad reading. I broke down into a sobbing mess, asking “why me? I’m only 29. Why me? Haven’t I been dealt enough surprises? Why me? I follow all the rules.” Of course she didn’t have any of the answers but Dr. Logan sat there and listened and was honestly concerned with my emotional well-being. When I calmed down she advised me that I would need to come back in a week so we could measure the baby again, via ultrasound. I left the office feeling numb and alone. The moment I got into the car, I called Travis to explain what just happened. Of course the moment I heard his voice I went right back into a sobbing mess. That was one of the scariest moments of my driving history, driving on I4, talking on the phone and crying inconsolably.

The next week felt like it was the longest week of my life. It was 2 weeks before Christmas and everyone was jolly, the stores were all decorated, cards were arriving, and people were making holiday plans. All I wanted to do was lock myself in my house and play with precious Emerson. We only told a few people about that doctor’s appointment because we were hoping that Dr. Logan’s third scenario would be correct, and honestly we were trying to put on a good “cover.”

Finally that week was over and it was Monday again. Travis and I loaded into the car to go back to the Dr.’s office, leaving Emerson with my mom. It was a considerably cold Orlando morning so I was shaking from cold weather and nerves as I walked into my appointment. I still to this day don’t know how the receptionist read my name correctly due to the poor penmanship. I went to leave my specimen sample and the ultrasound tech noticed me. She told me that she had been thinking of me all week and she was ready if I was. I immediately went to get Travis to begin the appointment. As I lay on the examining room bed, I prayed for growth of this baby. As the numbers started to appear on the screen, I couldn’t believe it. The baby was growing. If we were to compare the previous week’s measurement to what I saw on the screen, the baby had grown 1 week 4 days. The three of us were happy but we knew we couldn’t celebrate until Dr. Logan gave us the ok. We were given pictures of our baby and we proceeded into an examining room to wait for Dr. Logan. From what I’ve learned from Dr. Logan in the past years is you cannot predict what she is going to say by her demeanor. Her facial expression is pretty predictable, her eyes are always sparkling, and her voice gives you a sense of ease even when it is bad news she is delivering. So, when Dr. Logan came in this morning with that sparkle in her eye I wanted so badly to feel certain that everything was ok and that the first ultrasound was just a bad measurement. That is not what she had to say but she was happy with the growth and was cautiously optimistic. We left feeling much better about the situation and we were finally ready to announce that Emerson was going to be a BIG sister in June. I was ecstatic to mail out our Christmas cards (it’s the small things in life that I look forward to)!

Over the next few weeks our family celebrated Christmas and unfortunately all three of us got sick. It took a little of the “baby stress” away and allowed us to focus our energy on the present. Travis had a week off of work and spent it all with us. Even though we were all sick and cranky; he played, bathed, fed, and spent quality time with that little girl. I watched him over this break and reminded myself just how lucky I was to be joined on this journey with such an amazing partner.

Long before we knew we were expecting our second child, Travis and I discussed if we would do any prenatal testing. We both decided that we would need to find out if and what challenges lie ahead so that we could prepare ourselves for the journey. Before Emerson’s birth we did not elect to have any testing so we were surprised with her extra “gems.”

January 11, 2011 was the date of our amniocentesis procedure and advanced ultrasound. It was a hectic morning getting all three of us out of the house; Emerson off to school and the two of us ready for a long appointment. As we walked into the Fetal Diagnosis center at Winnie Palmer Hospital I felt a bit out of place. I felt like people were staring at us; the typical Caucasian, young, middle class, American couple. I sat and filled out the long questionnaire while I was waiting for my name to be called. I remembering checking “no” to 99% of the questions, when “why was I sitting in this lobby waiting to hear if there is something wrong with my baby” I thought to myself. Shortly after completing the questionnaire my name was called and we entered the ultrasound room. Our nurse was short and to the point. She explained that she was conducting the ultrasound but the doctor will be in a few moments to answer questions. She was right; Dr. Humphrey soon walked into the room and began to look at the long strip of pictures that had emerged out of the machine. Dr. Humphrey glanced at the pictures while she sorted them into body parts. While she was doing this, Travis and I stared waiting to see some sort of facial expression that would give us some relief. “This baby is very sick, Mrs. Frosch” were the words that broke my heart into a million pieces. She began to describe the body parts, organs, and bones that were not formed correctly. I honestly don’t remember much from that point except Travis’ broken face, my uncontrollable shaking, and wanting to call my mom for much needed support.

After more pictures, Dr. Humphrey continued to find more evidence that this baby had a severe case of a skeletal dysplasia. She concluded that it had a lethal diagnosis and told us that it would not be able to survive outside of my body. She needed to bring the case in front of her partners and the Board for WPH to decide on the plan of action. When she left the room, I quickly called my mom and broke. Travis had to explain to her what was happening and that she should get to the hospital because I was most likely being admitted to deliver this baby. It all happened so quickly, one minute we were watching the baby move on the ultrasound monitor and BAM I was being admitted to the 9th floor aka The Chaplin’s Floor.

I felt the color of my skin change to pale white as I sat and waited for my room to be ready. People were looking at me and I had nothing but a blank stare. This was not our plan. This was not what I was prepared to do. My admissions nurse was named Tracey. She was what I describe as tough love. My mom, Travis, and I sat as she explained how the next 24 hours would play out. I was to take a dosage of misoprostol every 4 hours which would allow my body to start the labor process. We would double up the dosage each time, until I hit 4 pills. The pill is used for cancer patients who are using chemo therapy and taking pain relievers. The medication prevents gastric ulcers, but as a side effect causes uterine contractions. I was given an IV line to access the pain medicine. I decided that I did not want to feel a thing- I basically didn’t want to even “know” what was going on. Tracey estimated that the process would take roughly 24 hours from my first dose. The contractions started quickly after the medicine dissolved in my mouth, they weren’t painful just uncomfortable. I drank a lot of liquid due to the chalky residue it left in my mouth. I found myself having to use the bathroom quite frequently- even for a pregnant woman.

Time moved slowly throughout the day. Travis and I watched daytime television which is something we normally don’t do. The Chaplin, social worker, doctors, and nurses frequently visited our room to check in on us and of course the food service workers who delivered our unhealthy lunch and dinner items. That evening I was given an anxiety medicine to help me relax and get some sleep. It sure did the trick; it actually turned me into Spider Woman in the process!

The 7am change of nurses came and my evening nurse, Melodi and her intern Kalai came to give me well wishes before they left. I told them how grateful I was for their care and emotional guidance. After taking my fourth dose I went to the restroom. Travis was behind me carrying my IV pole. The nurses had warned me that the birth might feel as if I needed to use the restroom and had placed a bed pan in the toilet. Never in my mind would I have thought that is how I would deliver my second child. Travis was graciously right beside me and was able to call for the nurses. They ran into the restroom took control and I painfully closed my eyes not wanting to face the reality of the situation.

Travis had decided that he wanted to spend time with the baby after the birth. I was not as strong as him. I was worried that I would be haunted by the physical appearance. We did decide to take home a memory box of the baby that includes the baby blanket, birth certificate, tape measure that was used to measure the length, and pictures. Travis did share these items with me and I cherish that I have them as a keepsake of this experience.

After the labor you are given 6 hours for your placenta to come out or you will need to be given a DNC. Dr. Logan was now at the hospital and clearly did not want me to undergo any unnecessary invasive surgery. Her plan, unbeknownst to me was to go and get my placenta if it was not ready to come out and that is exactly what she did. I finally used the pain pump that I was so conveniently connected to for 12 hours!! The next step was to go for an ultrasound to make sure that there was nothing left inside that would cause for infection. I was wheeled down back to the Fetal Diagnosis center on the first floor; thankfully we used the employee elevator and entered through the back doors to conduct the ultrasound. Again, we waited because the ultrasound tech. could not give any results. The unfortunate part of this wait was that I was not allowed to eat in case I would have to go for surgery/DNC. I had not eaten since 7 pm the following night and it was now 1pm on Wednesday- and this momma was hungry!

While waiting for the results of my ultrasound, Travis and I drooled over the “not so good” room service menu. We finally got some good news- I did not need a D&C and we could eat!! I’m not sure which one I was more excited to hear. That news also meant we were at the end of our hospital stay, we would be going home! I was thrilled that I would see my Emerson but I was hesitant to leave my secluded hospital room and go back to reality. The thought of carrying on with life seemed much too difficult for me.

We were offered many options of what to do with the body of our second child. Travis and I both agreed that we need to find the cause of death. Though the specialists believe that the characteristics of our baby were those of Thanatophoric dysplasia, we need to know exactly what happened and why. We gave authorization for the baby’s body and my placenta to be sent for testing. We return to the Genetics department in 2 weeks to hear the results. Unfortunately, there is a chance that WPH will not be able to find that cause of death and the body and placenta will be sent to Cedar Sinai in Los Angeles for extensive testing. We pray that we do not have to send the baby off due to the lengthy time for results.

Before leaving we were once again visited by Dr. Logan who gave us her condolences and my instructions for the next few days. I will need to return to her office for blood work to check my hormone levels in a few days. She told me that I was not able to pick up my spunky 2 year old- which will be nearly impossible. I was sent home with a prescription to keep my uterus contracting to ensure that all is flushed out of my body.

We were offered to exit the hospital through the back entrance which I gratefully accepted. One of the hardest memories of visiting Emerson in the NICU for 39 days was watching mothers and their newborns leaving the hospital in the “picture perfect” scenario. As we pulled away from the back exit I revisited many of the feelings I had when Emerson was born. I was scared and unsure about our future and then I felt an overwhelming sense of relief….I had the most beautiful gift at home waiting to see her momma.

These are the teachable moments in life that you hear about as you grow up. The moments that make you a better person and make you come out on top! It has only been 4 days since I delivered my second child, one that did not come home to our family and though the pain is so new I do feel hope! Hope that we will heal; hope that our family will gain strength, hope that we will find peace, and hope that we will see our baby again.

Travis, Emerson, and I would like to give our sincere gratitude for those you have prayed for our family in the past years. We gain strength and courage by your kind and inspiring words. We hope that you continue to follow our story and that you are given hope for your future.

Sincerely,
The Frosch Family