A Warrior’s Legacy: Family Treasures 29 Hours with Their Osteogenesis Imperfecta Baby

“Jim and I have shared a beautiful journey since February 2011. From the moment we met, I knew he was the one, although it took him a little longer to realize the same. Finally, on September 25th, 2016, we tied the knot and became husband and wife. Our love was sealed, and we couldn’t be happier.

A few months into our marriage, we received the incredible news that I was pregnant. Joy overwhelmed us as we eagerly anticipated the arrival of our little bundle of joy. We soon discovered that we were expecting a baby boy and embarked on planning our perfect life together. We moved from our apartment to a cozy home, preparing for our growing family.

Throughout my pregnancy, I experienced what I considered a relatively smooth journey. I didn’t face any severe symptoms or complications, and regular visits to the OB reassured us of our baby’s health. I was blissfully unaware of the potential challenges that pregnancies can bring.

On September 26th, 2017, the day after our first wedding anniversary, we welcomed our son, Maverick Apollo, into the world. Watching him grow was a joyous experience for us. As he turned one, we began discussing the possibility of expanding our family further. Our dreams came true when we discovered we were expecting again on December 18, 2018, this time with a baby girl.

The moment I found out we were having a girl, I dived headfirst into planning her nursery, buying adorable outfits, and immersing myself in the excitement of having a “perfect” family. A son and a daughter—a dream come true. Little did I know that life had other plans.

At 12 weeks and 6 days, during the NT ultrasound and NIPT screening, the technician faced difficulty locating our baby’s legs. Initially, I brushed it off as a simple stubborn baby. But when the maternal-fetal medicine doctor entered the room for a closer examination, my heart skipped a beat. The doctor mentioned the need for a follow-up before the anatomy scan, expressing the possibility of something being amiss. While I nodded, my mind raced with anticipation, grateful for the chance to see our baby again.

We shared the news with our parents, assuring them that the baby looked great, except for the challenge in measuring her legs. It didn’t seem like a significant concern at the time.

Little did we know, our world was about to be turned upside down on March 14, 2019, when we reached 16 weeks and 5 days of pregnancy. Jim and I excitedly entered the maternal-fetal medicine department, ready for another glimpse of our baby girl. The technician swiftly performed the ultrasound without saying a word, and my initial assumption of a bad day for her quickly dissipated. The doctors entered the room, conducting their own examination, and an air of seriousness filled the space.

“Legs are bowed, all long bones are bowed, extremely short, looks like clubbed feet,” one doctor said, as they exchanged grave concerns. My heart sank deep within me, and I asked, “What do you mean?”

The doctor explained that they were trying to determine the cause, but it appeared to be a severe form of skeletal dysplasia. While uncertain, the condition seemed “lethal.” The word “termination” echoed in the room, leaving us shattered.

Tears streamed down my face as none of it made sense. In the midst of our conversation, we agreed to undergo an amniocentesis for a definitive diagnosis. Skeletal dysplasia comprises over 500 different types, and we yearned for more information.

I cannot recall the pain or discomfort of the.

Honestly, I can’t say for sure if the amniocentesis was painful or not because I was in so much shock. After spending 5 hours in the hospital, we met with a genetic counselor and went on our way. We began sharing the news with our family and friends, although we were uncertain about the exact details because there was still so much unknown. However, we did decide on a name for our baby girl – Waverly Maeve.

We were aware that we didn’t know how much time we would have with her, so we made it a priority to cherish every single second and shower our beautiful baby with love. It felt like we were walking on a tightrope, trying to find hope while grieving the loss of the pregnancy we once had.

After about 5 weeks, we received the results from the amniocentesis, which indicated that our baby had Osteogenesis Imperfecta, suspected to be type 2. Although it was heartbreaking to receive this diagnosis, I was relieved to finally have some clarity. I started a blog and joined Facebook groups to gather as much information as possible about OI. I wanted to be as prepared as I could be.

During my OB appointments, I encountered doctors who disagreed with our decision to continue the pregnancy. One doctor even suggested that we should end it quickly, implying that we would not find a heartbeat if we continued. However, my husband and I made the decision to transfer our care to another hospital that specialized in high-risk pregnancies. We were not expecting a miracle, but we were not giving up hope either. At the new hospital, we met with their palliative care team and created a beautiful birth plan for Waverly. We underwent numerous ultrasounds and appointments, and although the outlook was grim, we remained hopeful.

As we approached the end of the pregnancy, Waverly’s measurements indicated that she was about 20 weeks behind and she was also in a breech position, so a c-section was scheduled for August 16th, 2019.

We took many maternity pictures and cherished every moment because we had no idea what would happen once she was born.

Before I knew it, August 16th arrived. My parents came to our house early in the morning to help us pack our bags into the car. They were going to follow us because they would be watching our son, Maverick.

It was a beautiful day, with the sun shining and no traffic. Everything seemed perfect.

We arrived at the hospital and began the check-in process. I met my nurses, was given a gown, and made ourselves comfortable. Originally, I was scheduled to be the second surgery of the day, but there were several delays, and I didn’t mind. Our family came in and out of the room, keeping us company. Around lunchtime, my nurse informed me that it was time for the surgery. I couldn’t believe it was already happening. I quickly texted my husband, who was in the cafeteria at the time, and he rushed back to the room, dressed in scrubs. We were told that the operating room was ready, and we walked down the hallway to the OR doors. This is where we had to say goodbye. I wouldn’t see him again until just before Waverly was ready to be born. It was an incredibly emotional moment.

I entered the OR and got on the table. The entire care team greeted me, and I was prepared for the surgery. I prayed like I had never prayed before, hoping to hear her cry and see her eyes. I also prayed that Maverick would have the chance to meet her alive. The surgery seemed to take forever, but in the middle of it, my husband walked into the room. He asked how I was doing,, 20 messages from the user.

It felt like forever, but in the middle of the surgery, Jim walked into the room. He asked me how I’m doing, and I asked him if he can see anything or what’s going on because I had no clue. We tried to distract each other with conversation.

Before I knew it, I heard, “Happy Birthday! 2:15!”

Huh? She’s here? Why don’t I hear crying? I couldn’t see anything beside the ceiling and doctors moving around. I saw the doctor carrying Waverly over to the newborn table. I tried to turn my head as far as it could go. Still no cry. I tried to look at her chest. Is it moving? I couldn’t tell. Jim walked over to the table, and they handed Waverly over to him. He walked back to me and held her close to my face. “Is she breathing? Is she?” Tears are flowing out of my eyes. I was so nervous. I asked Jim again, and he just nodded his head. He placed her on my chest, and my goodness. She cried. A sweet, beautiful cry. I was not sure if I would get to hear it, but I did. The priest quickly baptized her while she cried and cried. She eventually stopped and began looking around. I got to hear her cry. I got to see her eyes. I was not sure I would be able to. She was breathtaking. Absolutely beautiful.

We told her over and over how beautiful she is and how much we love her. She was doing an amazing job. Once I was stitched back up, we were brought back to her room. I had Jim get Maverick and our photographer immediately. Maverick was beyond himself. He was in so much awe of seeing his baby sister. We got amazing pictures taken. Once we were happy with our family of four time, we invited the rest of our family back. Everyone was so happy. No one knew what to expect, but the room was filled with so much love and joy.

Waverly was so observant. She had the biggest, most curious eyes. Jim and I were able to give her a bath, and I was able to breastfeed her. She was doing so well. We had visitors throughout the day, and everyone was so happy. Waverly slept on my chest that night. I was in heaven.

The next day, we were met with the neonatologist, and the plan on how we would proceed was discussed. She was exceeding all expectations. We loved on her all day. We gave so many kisses. We continued to have visitors. We told them all what the neonatologist told us. We told them she was most likely coming home with us on Monday.

Unfortunately, around 5 p.m., while she was being assessed, she stopped breathing. She was moved just the wrong way and did not recover.

Or so we thought. She eventually came back for a moment. She was the most aware during that time and gave us a few smiles. She smiled at her brother and at her daddy. We took a few more family photos.

Shortly after, we knew she was going to be leaving us. She became unresponsive but was still barely breathing.

We crawled onto the hospital bed and invited our family in to say their goodbyes. It was the most painful yet most beautiful thing in the world. As soon as everyone said their goodbyes, and it was just Jim, myself, and Waverly on the hospital bed, Jim felt her heartbeat for the last time. It was such a surreal moment. On August 17th at 7:51 p.m., Waverly, our 4 lb 14 oz, 14.25-inch long baby girl.

It was an incredibly heart-wrenching moment. My eyes were swollen from crying, making it difficult to keep them open. Waʋerly was supposed to come home with us.

We spent the next two days cherishing every moment with Waʋerly in our room. Maʋerick adored her so much and would eagerly run into the room each morning to see her. We created precious memories together, and our parents had the opportunity to hold her and express their love for her.

On August 19th, we had a final prayer. Jiм, Maʋerick, myself, and Waʋerly soaked in every last moment before we handed her over to the nurse. Witnessing her passing was difficult, but leaving her behind at the hospital was even harder. It was the most challenging thing I have ever had to do, a moment that will forever be etched in my memory.

The car ride home was silent and heavy with grief.

Those initial days were a blur as we had to plan a funeral and lay Waʋerly to rest. It was an incredibly difficult process, but we managed to get through it.

After the funeral, we went to a restaurant with a few friends and family members. The hostess asked when I was due, and I was taken aback. I looked into her eyes and said, “We actually just buried my daughter today.” She apologized profusely.

I was reminded that I still looked pregnant, with engorged breasts and no baby to feed. It was a constant reminder of the chaos and devastation in my life.

We gradually learned how to cope with our loss. Jiм’s work family planted a tree in Waʋerly’s honor, and we adorned our house with pictures of her. We spoke of her often, keeping her memory alive.

We attended infant loss memorial services and joined support groups. Whenever we have the chance to speak her name, we seize it.

We have found a new “normal” in our lives. It involves visiting the cemetery several times a week and resuming our jobs.

We are still grieving and will continue to do so for the rest of our lives. However, we are also able to find moments of joy and happiness. We share Waʋerly’s story to raise awareness about Osteogenesis Imperfecta. Her story is not over; we are meant to carry it forward.

Recently, we learned that we are expecting again, a baby boy due in early December of 2020. This brings a whole new set of emotions that we are learning to manage. It’s tough and not easy. This isn’t the life we anticipated, but it’s the hand we’ve been dealt. One day, we will all be reunited, but for now, we must live. We must live for Waʋerly. We must make her proud.

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