“We feel as if we have had several adventures in life. Our greatest, by far, has been the birth of our daughter Eleanor Jo. She joined our family in August of 2016, but the road to get her here was a treacherous one. Let me start from the beginning… Joe and I married in June of 2013. We knew we wanted to start a family soon, as we were a bit older, and I also have Polycystic Ovarian Syndrome. PCOS can greatly affect fertility, so we knew it may take a while for us to conceive. To our surprise, we found out we were pregnant with our first daughter, Alayna Mae, in May of 2014. We were so excited, and could not wait to find out if we were having a boy or girl! We went into our 19-week gender sonogram appointment, only to find that our sweet little girl’s heart had quit beating. It was a paralyzing feeling that was completely unexpected, and one that we would never forget. After several genetic tests, as second trimester losses are rare, it was determined that Alayna had passed from Down Syndrome. See, when a baby has Down Syndrome, our bodies recognize it as a ‘mutation’ in that gene, and fight against it. Only 20% of children with Down Syndrome make it into this world… They are truly little miracles in themselves.
Since we had experienced loss prior, the idea of conceiving again was overwhelming to say the least, but Joe and I knew we wanted a family. We knew the only way we could even consider getting pregnant again was by completely relying and trusting in the Lord. On our own, we knew we would not make it, but with the support of our family, our friends, and trusting in God’s will for us… We decided to give it another shot. In December 2015, we found out we were pregnant with Eleanor, and we were over the moon excited, but also had immediate fear and doubt set in. We went by… week by week… wondering when the bottom would fall out again. Yes, we planned on completely trusting in the Lord to take away our doubts and fears, but being human… it was only inevitable for us to feel this way.
At our 19-week sonogram, this was almost the ‘finish line’ for us… As we felt that if we could make it past this appointment, past the moment when we found out we lost our first daughter, that this would mean we were smooth sailing from here on out. At that 19-week sonogram appointment, we met with our sonographer, and she scanned our little growing babe. This is the appointment where they measure all of baby’s limbs, and ensure she is growing normally. The first thing we checked was her heart… and it was beating away! We were so relieved, and just continued with the rest of the scan, almost as if we had been given the ‘all clear’ already. The sonographer at these appointments really isn’t supposed to go over any results/findings with you. They are to let the doctor go over that after the scan is complete. Well, we did not have an appointment with my doctor until the following day, so we knew we would get the results then. As we left, I remember getting in the car, and Joe said to me, ‘Well, that went great!’ I, however, did not feel the same. I told him that I just didn’t feel good about it… That I know she had a heartbeat, but I could just tell something was off. He tried to assure me it was all going to be okay, and that I was just nervous from our last experience. So we waited until the following day when we had our appointment with my doctor.
I have an amazing OBGYN, and one that both Joe and I have a very close relationship with, as she has been with us through some of the most intimate moments of our lives. As we went into this appointment, we knew she would be honest with us, and shoot it to us straight… A trait of hers that I really appreciated. At this appointment, she told us, ‘Now, what I’m going to tell you guys is probably going to concern you, but just know that it does not concern me.’ She then proceeded to tell us that our sonogram indicated that our baby had bilateral clubfeet. At first, we were like… ‘Oh, is that all?’ We were expecting such grave news, considering our history, so this seemed ‘easy’ for us. She then said there was a bit of discrepancy in the chest area, but she wanted us to go see a Maternal Fetal Medicine Specialist to get a more in-depth sonogram, and ensure everything else was okay. Oftentimes clubfeet can be a precursor for other anomalies or syndromes.
My Maternal Fetal appointment was not until the following week, and I remember that being one of the longest weeks of our lives. At this appointment, they repeated the sonogram, and it was over an hour long. After the sonogram, we then met with the Maternal Fetal Medicine Doctor to discuss the results. This is where we were presented with the most devastating news about our sweet baby. Eleanor appeared to exhibit many anomalies including bilateral clubfeet, clenched fists with overlapping fingers, kyphosis/scoliosis of her spine, low-set ears, and the most critical concern was her bell-shaped chest. Her chest size was measuring less than the 2.5 percentile, which was the lowest percentile they recorded. If her chest did not grow, it would not allow for her lungs to develop, which in turn would mean she would not be able to breathe outside of the womb. We were again… paralyzed.
All of these anomalies were consistent with several different syndromes, all of which had our doctors predicting the gravest of outcomes. Some predicted that she would not be ‘compatible’ with life outside the womb; others told us we might have minutes, or seconds, with her on this earth. At 26 weeks, we were offered the option of termination of our pregnancy. This was not an option for us, as our faith was greater than this. We couldn’t give up on our girl. Our faith in the Lord became our main focus. We were praying for a miracle.
As the weeks went on, we were praying that each appointment, each sonogram, would display a glimmer of hope for our sweet girl. Unfortunately, the results were consistent up until the very end. Her chest size was not growing, and our doctors told us to plan for the worst. At around 37 weeks, we finally wrapped our heads around the fact that we would not be bringing our baby home from the hospital. It was at this point that I started planning her funeral, and I also contacted T.Marie photography. Tiffany is well-known for doing ‘Now I Lay Me Down To Sleep’ photography, and I wanted to have as much as possible documented of our sweet girl alive, to cherish and have moment captured for us to look back on.
August 25, 2018… The night before her scheduled C-section came, and I remember feeling the darkest moments on that evening. Joe and I were again paralyzed from our emotions. I remember reading to her before bed, and praying with her in her room. I had been sleeping in her room for about the last month. It was the one place I felt the closest to her. The one place I wanted her to know well, and I remember praying with her that last night, letting God know how appreciative I was that He had given me the last almost 10 months with her, and letting Eleanor know I would be right there with her as she spent the last night in her room with me.
The morning came, and the hour drive to the hospital was a pretty silent one for us. We knew this was going to be the last few moments with our little girl alive and well inside the womb, and the emotional roller coaster we had been on for the past 39 weeks was finally coming to an end… Or just beginning, depending on how you look at it. Music was a huge part of coping for me during this journey. One of the songs I had picked out for her funeral was ‘Thy Will’ by Hillary Scott. This song is so powerful, in so many ways, and I felt it really depicted the exact emotions I was feeling. As we pulled into the hospital parking garage, this song came on the radio. I knew it was God, communicating directly with me. I knew He was reminding me to trust His will, even when it may not be the outcome we were hoping for. I became very emotional at this point, and remember walking into the labor and delivery check in area, with the heaviest of hearts, and just wishing time would slow down. I wanted every second to last as long as possible, before our angel went to be with the Lord.
We were surrounded by our families in the pre-op room. I wasn’t sure if I would be comfortable with anyone but Joe or I holding Eleanor after the birth. If she lived for minutes, hours, days… I just couldn’t imagine her passing in anyone else’s arms other than ours. Our families were very understanding of this, but they didn’t want to be anywhere else. In addition, we also had our perinatal hospice team who had become like family, as well as our pastor by our side. The atmosphere in that room was very heavy, but also completely full of prayer and the Lord’s presence. As I was wheeled down to the OR, I could feel Him by my side. I knew we would make it through, and I knew He would take care of our sweet girl for us, until we could be with her again someday.
When we entered into the OR, my doctor asked us what Pandora station we wanted to listen to. We told her we usually listened to any Christian station, so she turned it on one of hers. This was another time that God spoke directly to me through music… At 4:05 p.m., the song that was playing was ‘Oceans’ by Hillsong United. This was the song that I had listened to on repeat for the last 39 weeks. Constantly reminding me that all I needed to do was trust in Him. Let Him take me where my feet would never wander, so I could see my faith become stronger in His presence. At 4:05 p.m… With this song in the background, we also heard the most amazing noise we have ever heard… Eleanor’s cry! We weren’t expecting to ever hear this noise.
We were prepped that when she was born, she would more than likely be struggling to breathe, let alone make any crying noise… To our surprise, God granted us that miracle, because she came out crying! You will notice in our birth video that my doctor, who by the way never lost faith in Eleanor making it all along, would tell me that she has seen miracles before, and that she always lets God take control. In the video, you will see her shrug her shoulders when Eleanor came out crying. She was looking at the Neonatologist and shrugged her shoulders because she was not surprised at all! She knew what God was capable of, and her faith never wavered.
We spent the next 10 days in the hospital, in the NICU and in the Special Care Unit. You would never believe it, but this little girl was only on oxygen for the first few hours of her life. After that, she was on room air, and breathing completely on her own. They performed x-rays, countless tests, physical and occupational therapy, and they were all amazed at how well she did. After 10 days, we were able to take our girl home, and ever since that day, we have been thanking the Lord that He has granted us the privilege of raising her here on this earth with us, instead of calling her home early.
The next several months began our journey in her lifelong treatment plan. She has an entire team of doctors to help us address her clubfeet, her hands, her scoliosis/kyphosis of her spine, as well as her chest. Her lungs have never once wavered in providing her with enough oxygen. She always measures at 98 or higher, which is truly a miracle in itself. Since her birth, Eleanor has since been diagnosed with a condition called Arthrogryposis, as well as a rare genetic syndrome called ‘Sheldon-Hall Syndrome.’
These diagnoses have posed, and will continue to pose, many challenges that we have and will continue to overcome together. She has already been through 4 tendon surgeries, several splints and 20 casts to correct her feet… And she is almost walking! Our next battle is to address her kyphosis/scoliosis of her spine, and we are currently receiving consultations on possible treatments plans to start in the very near future. Her prognosis is to live life without limits! Our goal is to get her there.
Eleanor has been our greatest adventure in life, thus far, and one that we continue to ask ourselves… ‘Why us, God?’ Why would He choose us for this miracle…? Why would He choose Eleanor? We know that her story is one that He made to reach people. He is using her to reach the believers who are struggling, the unbelievers who doubt His presence, and to give hope to those that have lost. Our desire is that her story reaches those that need to hear it, and help even one person draw closer to Him. Pregnancy, birth, loss, grim diagnoses, testing the strength of a marriage, testing your faith and trust in the Lord… These are all challenges that many of us face daily. Miracles can happen, but sometimes the journey leading up to the outcome, is the actual lesson to be learned.
Since Eleanor’s birth, we contemplated whether or not to trust in the emotional journey of pregnancy again, considering our past. We decided that we needed to ultimately prove to the Lord and to ourselves, that our trust in Him was alive and well. On May 18, 2018… We welcomed Eleanor’s baby sister, Josie Mae. Our family is now complete, three daughters, and a life full of faith and love.”
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