‘Legs are bowed. All bones, bowed. Extremely short.’ I felt my heart sink. ‘I don’t see the point in continuing. You can end it now, quickly.’: Family cherishes 29 hours with Osteogenesis Imperfecta warrior

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Disclaimer: This story includes graphic images of child loss and may be triggering to some.

“Jim and I have been together since February 2011. I knew right away he was the one, although it took him a little longer to realize the same. We got married on September 25th, 2016. Before you knew it, we found out I was pregnant about 4 months into our marriage. We were absolutely ecstatic. We learned the baby was a boy and quickly began planning for our beautiful life. We moved out of our apartment and into our home.

Courtesy of Allison McCafferty Photography

I had, what I liked to call it, a pretty boring pregnancy. No extreme symptoms, never had to go to the OB besides for routine visits, and all around I was just so excited. So naïve about how things can go wrong in pregnancies.

We welcomed our son, Maverick Apollo, a day after our one-year wedding anniversary on  September 26th, 2017. We had a blast watching him grow. When he turned one, we started talking about having another baby. We had different ideas in mind, but soon enough we learned we were expecting again. December 18, 2018… the  day of the positive pregnancy test. I was certain we were having another boy. But I was completely wrong, and we learned we were having a girl.

Courtesy of Emily Gray

As soon as I found out, I started planning her nursery, buying cute outfits, going all out. You see, I was still so naïve. We were about to have the ‘perfect’ family. A little boy and a baby girl, what more could you ask for? If only I knew what was coming.

At 12 weeks, 6 days we do the NT ultrasound and NIPT screening (to check for Down syndrome and other genetic conditions). At this ultrasound, the tech could not find the baby’s legs. My first thought was, we just have a stubborn baby. The maternal fetal medicine doctor walked into our room to see if could get the measurements. I actually laughed saying, ‘This baby is just being stubborn.’ The doctor looked at me and said, ‘You might be right, but I would like to see you before your anatomy scan to have another look. That way if something is wrong we can find out sooner.’ I nodded but was internally screaming with joy. An extra ultrasound!? I was so happy to get another chance to look at the baby.

I remember our parents asking how the ultrasound went and we told them the baby looked great. The only issue was they couldn’t measure the legs, but it didn’t seem like a big deal.

Oh, how wrong we were.

At 16 weeks and 5 days, on March 14, 2019, our world was flipped upside down. Jim and I eagerly walked into the maternal fetal medicine department to get another look at our baby. We were called back and the scan quickly began. I remember the tech going really fast and she didn’t speak a word. I shrugged it off thinking she must be having a bad day. She quickly finished and said the doctor would be back in to discuss the findings.

Jim and I chatted in the room while we waited. And waited. And waited. 20 or so minutes went by until two doctors walked into the room. I was still so naïve, I did not think anything was wrong. They began doing their own ultrasound, I remember laughing trying to make some small talk and the one doctor told me to stop laughing because he was trying to get a good picture. At that moment I started to get a little nervous. The two doctors were talking back and forth. ‘Legs are bowed, all long bones are bowed, extremely short, looks like clubbed feet.’ I felt my heart sink to the pit of my stomach. ‘Huh, what do you mean?’ I asked.

The doctor told me they were trying to figure it out, but it appeared to be some type of skeletal dysplasia, on the more severe side. They did not know for certain, but at this point it was looking ‘lethal.’ The word ‘termination’ was brought up several times.

The tears started flowing. It didn’t make sense. None of this was making sense. In between the conversations, we agreed to do an amniocentesis to try to get a diagnosis. You see, there are over 500 different types of skeletal dysplasias. We needed to know more.

I honestly don’t remember if the amniocentesis was painful or not, I was in so much shock. We met with a genetic counselor and after 5 hours in the hospital, we were sent on our way. We started telling our family and friends the news. We didn’t know exactly what we were telling them because there was still so much unknown. We did however come up with a name, Waverly Maeve.

We didn’t know how much time we would get, so we wanted to cherish every single second loving our beautiful baby. It was like walking on a balance beam. Trying to find the hope but grieving the pregnancy we once had.

After about 5 weeks, we got the results from the amniocentesis. Osteogenesis Imperfecta, suspected to be type 2. I was glad we had a diagnosis. I started a blog. I joined Facebook groups. I made amazing friends that have children with OI. I wanted all the information I could have.

Courtesy of Emily Gray

I continue with my OB appointments and I was met with doctors who did not agree with our decision to continue the pregnancy. One doctor told me, ‘I don’t see the point in continuing. You can end it now quickly, you’re still early. If you continue, I see you coming in at 26 weeks and we will not find a heart beat.’ I was about 22 weeks pregnant at the time. I couldn’t believe the words that were coming out of his mouth. Jim and I made the decision to transfer our care elsewhere. We were not expecting a miracle, but we were not giving up hope either. We transferred our care over to an amazing hospital that specializes in high risk pregnancies. We met with their palliative care team and made an amazing birth plan. We had so many ultrasounds. So many appointments. Each appointment confirmed the very grim outlook. Waverly’s measurements were getting further and further behind. We still remained hopeful.

As we reached the end of my pregnancy, Waverly was measuring close to 20 weeks behind. She was also breeched so a c-section date was made. August 16th, 2019.

We took so many maternity pictures, we cherished every single second because we did not know what was going to happen once she was born.

Courtesy of Emily Gray

Before I knew it, it was August 16th.  My parents met us at our house bright early to help us load our bags into the car. They were going to follow us up because they were going to watch Maverick for us.

It was a beautiful day. A perfect day. The sun was shining, no traffic. Just perfect.

We arrived at the hospital and began our check in. I met my nurses, I was handed a gown and we made ourselves ‘at home.’ I was originally planned to be the second surgery that day but there were many delays. I honestly did not mind. We had our family there in and out of the room keeping us company. A little after lunch time, my nurse came in and told me it was time. What!? Already? I quickly texted Jim because he was in the cafeteria at the time. He rushed back to the room and they handed him his scrubs. We were told the OR was ready. Jim and I walked down the hallway to the OR doors. This is where we had to say good-bye. I would not see him again until right before Waverly was ready to be born. It was such an emotional moment.

I entered the OR and got on the table. I was greeted by the entire care team and I am then prepped for surgery. I prayed like I never prayed before. Let me hear her cry. Let me see her eyes. Please let Maverick meet her alive. Please. Please please.

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 coudln’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.

Courtesy of Emily Gray

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 at 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.

Courtesy of Emily Gray

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.

Courtesy of Emily Gray

The next day, we were met with the neonatologist and the plan on how we would proceed were 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.

Courtesy of Emily Gray

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 heart beat 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, went to heaven in our arms. She waited until everyone said goodbye. She waited until we got one more kiss.

It was such a sad moment. My eyes were so swollen from crying I could hardly keep them open. She was supposed to come home with us.

Courtesy of Emily Gray

We spent the next two days with Waverly in our room. Maverick still loved her so much. He would run into the room each morning excited to see her. We did so much memory making. Our parents got to hold her and continually tell her how much they love her.

Courtesy of Emily Gray

On August 19th, we did a final prayer. Jim, Maverick, myself and Waverly soaked in every last moment before we handed her off to the nurse. I thought watching her die was hard, but it was leaving her behind at the hospital… that was even harder. The worst thing I have ever done. A moment I will never forget.

It was a silent car ride home.

Those first few days were a blur. We had to plan a funeral and lay her to rest. It was all so hard. We got by, though.

Courtesy of Emily Gray

After her funeral, we went to a restaurant with a couple friends and family. The hostess asked me when I was due. ‘Huh?’ I asked. She asked again. I looked her in the eye and said, ‘We actually just buried my daughter today.’ She apologized profusely.

I was reminded I still look pregnant; I had engorged breasts with no baby to feed the milk to and an overall mess.

We slowly learned how to cope. Jim’s work family planted a tree in her honor. We hung pictures up in our house. We spoke of her often.

Courtesy of Emily Gray

We’ve gone to infant loss memorial services.. We’ve gone to support groups. Any chance we get to speak her name, we go.

We found our new ‘normal.’ It consists of visiting the cemetery several times a week.. We returned to our jobs.

We are still grieving and will for the rest of our lives. But we are still able to find joy and happiness. We live to tell her story and bring awareness to Osteogenesis Imperfecta. Waverly’s story is not over, we are meant to continue that story.

Courtesy of Emily Gray

We recently learned we are expecting again, a baby boy, due early December of 2020. This brings a whole new roller coaster of emotions we are learning to manage. It’s tough. It’s not easy. This is not the life we expected, but it is the cards we were dealt. One day we will all be reunited again, but for now we have to live. We have to live for Waverly. We have to make her proud.”

Courtesy of Emily Gray
Courtesy of Emily Gray
Courtesy of Emily Gray

This story was submitted to Love What Matters by Emily Gray. You can follow her journey on her blog and Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more touching last moments here: 

‘Can I see my boy for one more goodbye?’ A nurse gave him his first and only haircut. He was truly perfect.’: Couple loses son to stillbirth, anxious about new pregnancy, ‘My first is in heaven, I’ll meet him there someday’

‘My baby was born perfect, except for the knot in her umbilical cord. That day I was introduced to 2 concepts: stillbirth and grief.’: Mom loses daughter at birth, thanks friends who ‘saved her life’

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