It was very difficult for my husband John and I to get pregnant, but we wanted it more than anything. It was the piece missing from our lives. When we found out we were pregnant with twins, it was the greatest day of our lives up to that point. He was scared to death at the prospect of having two, but we were excited. At my 19 week appointment, John couldn’t be there. So my mom came and we kept him on speaker phone so he could find out what we were having. We saw our little girl first and then our boy. We cried happy tears. To have one of each seemed beyond perfect. And then the doctor came in and our world fell apart. Our little girl was already head down and ready to come out. They immediately put me in a wheelchair and took me to the antepartum floor to be on bed rest. We were devastated because we knew it was too early. The first few days, all I could think was that I was going to lose them. I couldn’t fathom it. We’d wanted this so badly. But as it sunk in, my stubbornness came out. I knew I could do it. Our goal was to get to 24 weeks, but our hope was 28. We had an amazing doctor during that time. She gave it to us straight, which is what we needed. We were so out of our element. Everything was so new and daunting.
I was 23 weeks and 4 days. Things seemed to be okay. But when I got up to use the bathroom, I was bleeding. I yelled for my mom in the hallway. It was immediate chaos. I’d heard magnesium horror stories, but we had no choice. We had to stop my preterm labor. I was sobbing the entire time. I still wasn’t 24 weeks, the point of viability. The chances of survival were very low. They gave my husband and family a sheet with statistics. I have never looked at it. It had survival rates and complications that happen. Those next few days were devastating. Hour by hour, we didn’t know what would happen. I reached 24 weeks on a Sunday. One of my favorite nurses, Sue, came in and washed my hair and painted my nails. She was a true blessing. She helped me so much. And then on Monday, surrounded by what seemed like a million people, our little Madelyn entered the world. I remember seeing her. She was 1lb 7oz. She looked like a baby, but also not. We didn’t know anyone who had even used the Children’s Hospital, let alone a baby this early. They immediately intubated Madelyn and took her to the NICU. Then they cranked up my magnesium and I was out again.
The next few days are gone for me. I woke up on Thursday and a friend was sitting next to my bed praying. My back immediately started hurting. I was in labor again. Our little boy had turned around the wrong way. I was wheeled in for a C-section. It was more violent than I thought it would be, but they got our Jake out. John left right away to go with him as he was rushed to the NICU. The doctor stayed with me. I was terrified. There was so much rushing and running. After some time had gone by, I remember them wheeling my bed through the hallways to see him. My whole family was there sobbing. He almost died that day.
I had never seen babies that small before. I had no idea what I was walking into with the NICU. I didn’t know what the machines meant, what the tubes were doing, what was next. The staff didn’t overwhelm me at first. They just wanted me to be a mom. I didn’t dare ask to hold them because I was scared to. I didn’t even think it was an option. Jake was 7 days old when I first held him. I have this amazing picture of him laying on me for 2 hours. And like magic, his stats got better. It was the first time I felt like I was doing something as a mom. We craved anything that was normal like that. We cherished those firsts because we didn’t know if we would have any more. I would spend all day at the hospital and go home to sleep. The first week was just learning bits and pieces. A new word, a new medication, a new scar, a new diagnosis for us to learn and face. It turned into a bit of a blur. If the hospital called and it was the middle of the night, we were immediately there. Madelyn was our slow and steady. She took forever to get the next step, but she continued to improve. I remember Dr. Hocker looking at her and saying how amazing she was. Jake had all the stuff preemies deal with. His first week was the honeymoon period, as they call it. But he had stomach issues and had a blood transfusion early on. He also developed brain bleeds. It was grade 4 on both sides, the worst it can be. There was no positive info out there for that diagnosis. The statistics were horrible. His head started getting bigger because his cerebral fluid wasn’t draining. One specialist talked about putting in a shunt. I remember throwing up in the bathroom afterwards. Later, Dr. Hocker came in and told us that things were starting to shut down and there wasn’t anything we could do. He cried with us that day because he couldn’t fix it.
The next day was Father’s Day. John hadn’t held either of them yet. They placed Jake in his arms. He wanted to hold him before anything. We hoped it wasn’t the only time, but things just kept getting worse. Jake was 23 days old when he died in my arms.
Our nurse, Theresa, was a God send to us that day. No one could have done more to make that day less painful. When John was holding Jake she cranked everything up so he was comfortable. She let us give him a bath and then stay with him as long as we wanted before going home. She took pictures of him after we left for us. Theresa told me she would take care of Madelyn if we needed a day or two. As I left Jake’s room she hugged me. She reminded me that I was still a mom and had a little girl that needed me to help her fight. She said go home and sleep, but that I still had work to do. From that day forward, Theresa always cared for Madelyn when she was on shift. She became part of our family forever.
After Jake, everything became a bit more high emotion with Madelyn. There was no way I was losing her too. I wanted to be involved in everything. The next month, I had to be forced to go home and rest. I was terrified. Dr. Javed was a blessing to us when he came on rotation. He had a different approach with her and it worked. We started having a lot of firsts. First bottle, first time my parents could hold their grandchild. She was 10 weeks old when we gave her a bath for the first time. Some moms might not remember that, but we have an entire photo album. It was so normal and fun.
After we lost Jake, I worried that the some people might not want to take care of the family whose child died. But the staff was amazing. They checked in on us in different ways and always encouraged. They took care of our whole family just as much as they took take of Jake and Madelyn. They took every call from me in the middle of the night asking for an update. They told me congratulations when I had my babies, even when no one else did. We didn’t have a bad experience with anyone. There is nothing I would change or ask for that could have been better. These people truly became our family and gave us the greatest care possible.
Being up here on the floor is healing for me. Some parents never want to set foot on this floor again and I get it. But this is the only place I had Jake. My only memories are here. So yes, it is heartbreaking, but it also heals me. When we got out of the NICU it wasn’t even a month before I was looking for ways to get involved, to give back, to help other parents. This place is so personal to me because I have a miracle in my life and I also lost a child. I know how hard and painful it is and if I can help even just one family, have one better day, then I will do it. One Sunday every month, the NICU family advisory board provides a family dinner to the floor. We meet with parents living this right now. I remember when we were here I could never picture Madelyn as a normal little girl. I always saw the tubes and machines. I would have done anything to be able to picture it. So when Madelyn was two, I started bringing her with me. The first time I did, a family with twins born at 28 weeks cried. Madelyn was eating crackers and throwing a fit like any other two-year old. I saw them breathe a sigh of relief. They needed the same thing I did. That is why I do this.
I love everything about Madelyn. Her smile can light up an entire room. She’s four years old now and continues to amaze me. She defied every odd in front of her and always will. I love experiencing all the new things with her. Everything is a wonder. She immediately loves new places and experiences and doing those things with her makes me happy. That is why I became a mom. Riding a bike took a lot for her, but the day she found out how to work the pedals and get down the street, she was screaming that she was doing it. In our house we never say can’t, because she can do anything. I’ve seen it.