Leo’s Story

November 21, 2017

Our Leo Ezra was born at 25 weeks weighing only 15 ounces. It was miraculous that he survived his birth and even more miraculous that he went on to fight so bravely for nearly a month before passing away due to complications from his prematurity.

My pregnancy with Leo was challenging – arguably more emotionally challenging than physically challenging. After Ollie’s traumatic and unexpected early arrival and being diagnosed with HELLP Syndrome, I was terrified that the same would happen with my second pregnancy. We were very vigilant when it came to seeking specialized doctors to consult with about whether or not another pregnancy was a responsible decision. We were told that I had a 25% chance of developing some form of preeclampsia but that if we wanted to grow our family, there was no reason we shouldn’t pursue that.

From the moment I became pregnant I was riddled with anxiousness that something was going to go wrong. I had sought out a well respected maternal-fetal medicine doctor who was affiliated with a hospital that offered the highest level NICU care, just in case we found ourselves in a similar situation. I received wonderful care from her, but right around 23 weeks, we received some heartbreaking news. Our baby was growth restricted and I had multiple blood clots in my umbilical cord. This was preventing him from receiving what he needed from me to grow and develop. Because we were so close to viability at 24 weeks, it became a delicate decision about when to deliver the baby. We wanted to keep him in as long as possible, but not so long that he would we’d lose him.

The doctors were faced with making a decision about when his chances for life were better outside of the womb rather than inside. After our appointment at 23 weeks where we learned of the growth restriction and blood clots, we were given 2 options: I could deliver then with a very low chance of survival, or receive a steroid shot that day, wait a week and return at 24 weeks when his chances of survival would increase and hopefully he’d have a bit more time to grow. The risk was a stillbirth. So after choosing to receive the steroid shot and wait, I was instructed to go home and call if I stopped feeling movement. It was an awful week of waiting for the worst, but we made it to 24 weeks and returned to my doctor only to learn that his condition was worsening and that I’d need to be admitted to the hospital until he was born. In a best-case scenario that would be weeks, in a worst case scenario, it would be that day.

I was admitted to the hospital for constant monitoring where the doctors were constantly evaluating if they should take the baby or give him more time. It was an awful state of limbo. I was also starting to show signs of developing HELLP Syndrome once again with increased liver enzymes, dropping platelets, and blood pressure that kept creeping higher. We had many scares, one being so drastic that we refer to it as the “Grey’s Anatomy” moment. I had been taken to a different floor for a more in depth ultrasound. In the middle of the ultrasound, the baby’s heart stopped beating and my doctor literally ran through the hallways of the hospital back to the floor where they would perform a c-section to get the baby out as soon as possible. Just before fully prepping me for surgery they were able to get a heartbeat – crisis averted for the time being.

This limbo went on for days and I was constantly dealing with magnesium infusions. (If you’ve ever had magnesium before you know how awful this is) There had been research done that magnesium could reduce the risk of cerebral palsy in premature babies if the magnesium had been received within 12 hours of delivery. It would also prevent the seizures that I was at risk for as I continued to trend towards developing HELLP Syndrome. Needless to say, it was a lot. Eventually, the day came when the doctors made the call that it was time to take the baby. They performed an emergency c-section and our teeny tiny Leo was born. He survived his birth and was immediately attended to by the NICU team. There were no cries and no celebrations. Our baby had arrived and had a very big fight ahead of him.

We were told that if Leo survived his first ten days that there was a very high likelihood that he’d make it. As fragile as he was and as critical as the situation was, I never really thought he’d die. I thought more about what it would be like to potentially raise a child with special needs and how Ollie would become some an important big brother to this very special boy. I thought about things like him being blind, deaf, or having cerebral palsy, but I never really thought we’d lose him. We’d already been NICU parents that spent months in a NICU and I never saw a baby pass away. We had been so diligent with this pregnancy that it all just felt terribly unfair for so many reasons.

Leo did really well given the circumstances and made slow and steady progress. We had ups and downs and our fair share of setbacks but things were looking good for the most part. We were positioned next to another baby who had been born around the same gestational age as Leo but twice his size. He was a few weeks ahead of us and we were so grateful to look to him and think that our Leo would eventually make the progress that he was making.

Ollie was able to meet his brother and cheer him on from outside his isolette. He was so small. So small that in one of the most advanced NICUs in the country doctors would stop and remark about his small size. Despite his small size he truly was a fighter. All of our nurses and doctors commented on how active he was for his size and how his skin looked so good. They mentioned time and time again that he may be the size of a 21 weeker, but his organs were strong. It was also crazy to see this teeny tiny human being that looked just like his older brother. He looked like he belonged to our family and we so desperately wanted to give him every chance to succeed.

As Leo slowly progressed I, unfortunately, contracted an infectious disease called C. Diff while I was in the hospital. The doctors aren’t really sure how I contracted it, but believe that I may have got it from the antibiotics I received during my c section. It’s an awful infection that affects the colon and can potentially be very serious. It’s also highly contagious, so I had to be quarantined in my hospital room until I’d been treated with antibiotics to get things under control. Nothing is worse than delivering a baby that weighs less than a pound, having a serious infection post-c-section, and being told that you have to be isolated. Anyone who entered my room had to put on a gown with gloves and a mask – I’d never felt so hopeless and so alone. Eventually, the antibiotics kicked in and I was able to be discharged from the hospital. Once again I was a mother who’d had a baby that she had to leave behind at the hospital, but this time it was so much worse. Leo’s NICU experience made Ollie’s feel like a cakewalk. He was one of the sickest and smallest babies in the NICU and I knew that we’d be there longer than anybody else. I mentally geared up for a stay that could be as long as 6 months. What I didn’t mentally prepare for was losing my baby.

After a week of great progress, Leo developed an infection due to his chest cavity filling with fluid. His central line that was delivering the TPN that was sustaining him and shifted and rather than delivering the medication and nutrition to his heart it filled his poor chest with fluid that caused an infection. His body was so small and he was just too little to fight it off. Within 24 hours we’d lose him.

It was all very surreal. We were told that he likely wouldn’t make it through the night and that if we wanted the chance to hold our baby while he was still alive, then we begin the process of preparing to take him off his ventilator and make him comfortable. We were taken to a room to be with our baby and I held him for the first time as he died in my arms. Nothing will ever prepare a mother or father for this.

Leo continually impressed us with his bravery and spirit. Since his death, I have felt strongly that there must have been a purpose in those few weeks that he lived. That it had to have been for a reason. I don’t believe that God would allow him to suffer as he did for nothing. With time and reflection, I believe that Leo’s purpose was to inspire bravery and lead our family to Nora. If Leo had survived I don’t believe we would have pursued gestational surrogacy which eventually brought us our beautiful Nora. We wouldn’t have considered growing our family in such a unique way. So I feel that I have Leo to thank for Nora. She is a gift from this incredible baby who has made such an impact on my life.

I will always grieve Leo’s death and I believe that my grief will be a companion of sorts – something that connects me to my Leo. I’ve made a lot of progress, but I have a long way to go. As his mother, I want to share just how special he was and express how much love we have for this brave baby that impacted our lives so drastically. It was beyond difficult to lose him, but I’m so grateful for the experiences that his short, yet impactful life has led to.

Oh, how we miss you, Leo.


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