The Beginning

I still can recall the day that I found out that I was expecting our baby, Elise. What joy it was to see that positive sign on the pregnancy test and then the questions shortly began. When should I call the doctor? When will I get my first ultrasound? Will she be OK? I had many miscarriages in the past so naturally my mind started to wonder and I yearned to have our baby be healthy and well. I quickly made an appointment and started my labs and first ultrasound around 7 weeks. Our sweet baby girl was looking great and she had a heartbeat. A heartbeat ……a simple heartbeat…... brings a peace that cannot be fully explained especially after suffering four losses. Although, by gracious miracle we did have our precious Alexis almost two years ago and she has brought us tremendous joy. Great peace would overcome me when I went to my checkups and saw that she was doing so well. The doctors were all pleased with her growth and it appeared that we were going to have a very normal pregnancy. Little did we know that we were just beginning our emotional roller coaster, we call life. At times, our life may seem predictable and sometimes even mundane. The roller coaster may be flat and even a straight path. All of the sudden you realize that the path may be changing when you look up and you see that tall climb in front of you. Well, this is the moment in my roller coaster path, where, you would hear that familiar saying on that great Disneyland ride, Thunder Mountain, “Hold on to your hats and glasses. Cause this here’s the wildest ride in the wilderness.” Little did I know that my life was going to be forever changed.

The Diagnosis

It was time for the most anticipated ultrasound, the 20th week where you can find out the gender. I was going to the specialist for my appointments and knew that sometimes these appointments would be lengthy but this day would be one of the longest days of my life. I found out that indeed I was having a sweet girl. The appointment seemed to go on for quite some time, the technician said she would need to consult with the doctor for a minute. The doctor came in and also did the ultrasound for a more detailed analysis. She seemed to have a concerned look on her face and asked, “Is your husband able to come over?” I said he was at work but I could call him.She said that would be good to have him come over since there were some concerning features on the ultrasound. That was my first indication that this roller coaster ride was going to be changing directions. Richard came over and it was there that we were informed that there were some concerning features on the ultrasound. She had extra fingers, possibly extra toes, and enlarged kidneys. It was then that we were informed that possibly she could have a genetic syndrome called, Trisomy 13. More tests were to be conducted to see if our daughter had this syndrome.The time had come to hear the results if our daughter might have this life threatening syndrome. This is the part of the roller coaster that you anticipate where you are at the top peering down wondering what this ride will bring you. Our daughter, Alexis was eating her lunch and I was leaning against the kitchen island bracing myself for what news may come. She said that the tests confirmed with a 98% certainty that she had Trisomy 13 syndrome. Quickly, the doctor explained that my daughter would be “incompatible with life” and would most likely never talk or walk. She used the word lethal and that she only had a 10% chance of living to her first birthday. The doctor said there are options moving forward and that I don’t have to continue the pregnancy if I don’t want to. When the world around me stood still as I was taking in the realizations of my fate and my sweet daughter’s chances of survival, she kicked with all of her might. At that point, our Elise had small movements but at that moment she kicked with an unbelievable force letting me know she was certainly alive. I decided at that point that despite the diagnosis we were moving forward with the pregnancy. Now, we were ready for the point in our roller coaster where you hold on to the sides of the ride knowing you were about to descend but how far you were going to fall was unknown.

Life after the Diagnosis

Once it was determined that our daughter most likely had his syndrome many doctors would remind me of the statistics and that it was very unlikely my daughter would make it. There were times where I would put a brave face on and try my best to not think about the future but the present. Some days were easier and some days were much harder. I continued to go to my doctor’s appointments and would leave many times disheartened by the reminder of my daughter’s fate. If I would feel down, little Elise would comfort me by her movements and her healthy heartbeat. I remember taking a walk one day thinking about our Elise and already saddened about what may come when she is born. All of the sudden, the song, “I will follow God’s plan for me” popped into my head. The lyrics that touched me the most were, “My life is a gift. My life has a plan. My life has a purpose before heaven began. My choice was to come to this lovely home on earth. And seek for God's light to direct me from birth. I will follow God's plan for me.” These words would come into my mind very often over the four months of knowing my daughter’s condition. She would comfort me when I needed comfort. Not only did Elise comfort me, but our sweet Alexis also knew when mom needed some comfort. I felt that Alexis knew her sister and loved her. They were once best friends and I know that to be true. Lexi, would lovingly pat my stomach and sing to her sister. Not only did my daughters comfort me when I needed it, but my husband has been a tremendous support. He has such tenderness and would take on responsibilities when I needed a break. The time was very challenging but our family, friends, and even strangers were very helpful in this time of trial.

Sometimes our Father’s will may be different than our will for reasons that are not known to us. Two weeks before I went into labor I went to the hospital for false labor and they admitted me to watch the baby more carefully. They noticed that the baby wasn't moving as much as we had hoped and that at times her heart beat would decline. We were able to meet the doctor that would later help bring Elise into the world. He was able to give me choices and helped me to feel at ease of what I would plan on doing when Elise was born. He was informative but also supportive of what we as a family wanted. He knew that it was important that we had the opportunity to meet our daughter Elise. Although, I was scared to have an emergency C-section he asked what I would want to have happen if Elise did not do well and needed a C-section. Luckily, because of him we carefully created a birth plan of what we would want to do if Elise was in distress.

The Arrival

Unfortunately, two weeks later on August 2, 2014 it was determined that Elise was in distress. I was not feeling movement as much as I ought to and I felt the need to go to the hospital. I was nervous when they said your baby will most likely not make it unless we do an emergency C-section. Luckily, because of loving promptings two weeks prior and meeting the great Doctor who informed us of our decisions we knew that we wanted to do whatever it takes to meet sweet Elise and to hold her for however long or short it may be. To our wonderful surprise, the doctor on call was the doctor we had met two weeks prior. Two weeks before, the doctor did not think a C-section would be the most beneficial but right before the surgery he said something that confirmed to me yet again that we can receive promptings through the spirit and that our Heavenly Father indeed does answers prayers and is watching over us. My Dr. said, “I don’t know what it is but something is telling me that you are making the right decision having a C-section.” At that time, I needed some comfort and I knew the feeling he was having was from our loving Heavenly Father. Wow, this was all coming together and now I knew this was the right decision for our family.

The C-section went very smooth and shortly after I heard the doctor welcome sweet baby Elise into the world. Richard was able to hold her promptly after the delivery and I was able to hold her skin to skin shortly after. Her heart was beating but she was not breathing well. She began to breathe better as she hit my chest. That first moment of seeing my beautiful daughter is a moment I will never want to forget. She had beautiful red hair and she brought sweetness into the room that no one could deny. The nurse told me that there was not one dry eye in that operating room. She said doctors, anesthesiologist, nurses, were so touched and this was something none of them will ever forget. The doctor thanked us for helping him feel human again and reminding him why he does his job. Now, many may say that statistically speaking my daughter was not compatible with life but I very much disagree. Look, how many lives she did affect and will continue to affect.

Elise had more complications than we had hoped. We knew it was better to just hold her and love her. I was able to hold her and feel of her sweet spirit. Our Heavenly Father knew how important it was for us to meet our daughter but at the same time we did not want our Elise to feel pain. Our prayers were answered, we did get to meet her and she seemed to be at peace. Slowly, Elise’s breathing slowed down then she peacefully passed. She lived for a total of eight beautiful hours. The spirit was very strong in the room when she passed. Our sweet Elise has already taught us so much. This truly is not an easy process but I would like to share what I am learning from this experience.

Lesson Learned: Present in the Moment

The ancient Roman philosopher Horace admonished, “Whatever hour God has blessed you with, take it with grateful hand, nor postpone your joys from year to year, so that in whatever place you have been, you may say that you have lived happily.” At times I get so distracted with planning for the future when I should really live in the present. I wanted to know what the future held and what my time would be with my precious Elise. However, I did not know whether I would have minutes, days, or months. There were those challenging times when all I yearned for was to know that my daughter would be here on this Earth, at this time, and we would watch her grow and learn. I would sweetly be reminded to be present and enjoy every heartbeat, and kick. When sweet Elise was born and we realized our time was short, being present was essential. All things could wait for these were moments that I know will last a lifetime. Our daughter only cried a few times but we did get her cry on video. I have listened to that cry over and over again. It was small, sweet, and one of the most pure sweetest sounds I have ever heard. I remember having our dear Alexis as a newborn and the challenge at times with many restless nights of nightly feedings and crying. However, those first few months of Alexis as a newborn are some of the most wonderful memories. I loved our quiet time together at 2 a.m. Now our perspective has changed and has forever changed that even a cry is a sweet moment that we ought to be present for. I hope that I will remember this important lesson to be present even in the challenging moments. Live in the moment for time passes quickly. It is great to prepare for the future but don’t let it distract you so much from the present.

This experience will affect my life forever. Elise was worth it all and I will forever be grateful for her coming into our lives even if it was a brief time. We may want to fast forward through the hard moments but I know if we stop and breathe, a lesson will be learned. I am grateful that I was present through those challenging moments and some of the happiest moments as well. Enjoy the moment and find joy even in the trials. I will forever miss our Elise but we are grateful for her life lessons she taught us. Here is her tribute video from the funeral, Elise Tribute Video- Trisomy 13