“Alexander is the light that came out of the darkness. We found out he would be joining our family a few months after I had suffered a miscarriage. His presence came when we were still reeling emotionally from that loss, and he shined a light into our lives that was very needed at the time. Just over a year after his unexpected early birth, he continues to be the brightest part of our lives, but the road to get here has been difficult.
Alexander was due in early October 2019. It was a little bit comical because my older two children were born in November and December, so we were going to be spending the later part of the year, every year, celebrating these beautiful humans we created. What a wonderful way to finish off the years together. As life tends to do sometimes, things did not go as we had planned and Alexander began his life earlier than expected. In late June, at 25 weeks pregnant with him, I experienced a placenta abruption which caused my water to break. We knew then Alexander was going to be a summer baby, joining us at the end of August at the latest. While we didn’t make it quite that far, three weeks later, at 28 weeks pregnant, he joined us after an emergency c-section. It became apparent Alexander had a better chance on the outside than he did inside of my belly.
After a difficult c-section, Alexander came into the world weighing 2 pounds and covered in the most beautiful dark hair. He was small and he struggled to breathe at birth. His lungs were not fully developed despite steroids I had taken to help them progress faster. His skin was thin, and my husband and I had to learn how to touch him without causing pain. I saw him so briefly as he was wheeled out of the operating room and into what would be his home from the foreseeable future, the NICU. He was intubated shortly after birth and hooked up to various machinery to assess and assist him.
My memory is very fuzzy from the first time I saw him in his isolette in the NICU, as I was wheeled over in my recovery bed. What does stand out to me was my second visit the following day. This would be the first time I saw Alexander’s determination, and this moment will forever be a favorite of mine. I remember sitting in a wheelchair next to his bed and he had a u-shaped pillow around the bottom portion of his body. This was meant to keep his legs tucked up as they would be if he was in the womb. Alexander did not like his legs being tucked and he pushed them out and over the pillow. He did this every time his sweet nurse tucked them up again. I didn’t know it then, but that determination and that small fight I saw in him every time he pushed his legs out would carry on through his NICU stay and beyond. It would be a defining characteristic of his, even when he appeared so fragile.
Alexander continued to do what preemies do. He experienced typical bumps in the road as he struggled with weight gain and had events that affected his heart rate and breathing, but every day, he became a little bit bigger and a little bit stronger. Everything was how you would expect a 28-week old premature baby to grow and develop until it very suddenly wasn’t.
After having spent the morning with Alexander and the afternoon with our 3 and 1-year-old, my phone rang and the NICU’s name flashed across my screen. Every parent can imagine the dread that flows throughout your entire body when the hospital caring for your infant calls. Usually, when they call, they start by saying everything is fine. They did not say that when I picked up the phone. Alexander’s nurse had noticed his belly looked distended and it seemed painful to touch. They needed to run some tests to see what was ailing him, but I already knew. Knowing Alexander was coming early, I researched any and every NICU complication I could find to prepare myself. One of them I came across was necrotizing enterocolitis. It progresses quickly and can be fatal. I asked his doctor on the other end of the line if they thought it was NEC, and I will never forget her voice as she said, ‘We believe so.’ I was at the hospital 15 minutes later.
Alexander’s fight against NEC was the most terrifying and humbling experience of my life. He was fine earlier in the day and then he very suddenly was not. In my heart of hearts, I know his nurse that night saved his life. If his care time had been pushed back by even a small amount of time, I don’t know if he would be with us today. By the time I had arrived, Alexander had taken a turn and his body was tired. He had blood work done and tests completed and he was deteriorating quickly. He was intubated again that night and as his team did that, I sat in the hallway of the hospital on the floor. The same hallway I had carried both of my older children down when they were born. The same hallway I walked down for date nights with my husband while in antepartum. The same hallway I used when I left the hospital without Alexander every day. I sat on that floor and prayed a million prayers and begged everyone I knew to do the same. I cried and cried on that floor as I waited for them to finish his intubation, and I wondered if these were going to be my final days with my son. If he would ever meet his siblings, his family, our golden retriever. After they brought me back into the NICU, I sat in that same rocking chair I had used every single day with one of the nurses beside me as she answered every question I had, realistically and compassionately. She sat with me in silence when I didn’t have words and she sat with me when I cried. She kept me grounded as we watched him overnight.
The days that followed Alexander’s initial diagnosis were scary. At one point, we discussed him possibly needing surgery, which would mean a transfer to a more equipped NICU. Every moment felt like years as we watched and prayed for him to recover, and he did. By the grace of God and modern medicine, Alexander not only survived but he thrived and his resilience shone through like meteorite. That determination I saw in his tiny one-day-old body weeks before was bright and clear again. It was blinding.
The remainder of Alexander’s NICU stay was as uneventful as a NICU stay could be. He continued to grow and learned to breathe while simultaneously eating. That was the final hurdle for him to overcome. We left the NICU for the very last time in late September, a week and a half before his due date. This time, we had our rainbow with us.
Every day in the NICU felt like another mountain to climb. Small setbacks are devastating and every progression is a celebration. Making it through that time in his life was hard, both emotionally and mentally, and there was a heavy weight lifted from my shoulder when we walked out of there with him. That lightness was short-lived as we then had to begin addressing the developmental delays that come with being born so prematurely.
We knew Alexander would have some developmental delays from the moment he was born. He began physical therapy in our home one month after he left the NICU, and speech therapy shortly after. He had torticollis, which caused a flat spot on the back of his head from laying in his isolette, and he was struggling a lot with eating, which has continued throughout his life. Over time, other delays have become apparent as he grows, and an occupational therapist was added to his early intervention team and he continues to see these three women once a week. They have worked so hard with him and for him, and I could not imagine a better team to help my son reach all of his goals.
Alexander eventually experienced another setback. He very suddenly regressed in a number of different areas. He had always had various issues with his muscles on the right side of his body, but he had stopped using them altogether. He stopped waving and stopped using his right side to support himself or feed himself, sparking a huge concern in us, we contacted his pediatrician. Since then, Alexander has seen a number of specialists and has had a number of evaluations in a very short amount of time to determine what, if any, could be an underlying cause for his regression and how we can best help him.
Alexander is just a year old. Developmentally though, he is months younger than that. Throughout his first year, he has seen a number of doctors and spends three hours a week with therapists. He has been through more and accomplished more than anyone person should have to, especially at the start of their life, and he does it with such a happy disposition. He holds true to that strength and happiness in his personality I saw shine so brightly when he was first born, even when he is being guided to the brink of his capabilities.
Alexander brings a light into our lives that was missing before he came. I cannot tell this story through Alexander’s eyes; I can only tell it through my own as his parent. What I can do though is hope throughout all of his challenges, I have shown him love and grace. That I haven’t pushed him too far and have advocated for the absolute best for him. I can hope he has always felt my love as it flows deep in my veins for him and his siblings. I can hope he knows, without a fraction of a doubt, there is nothing, no diagnosis or delay or struggle, I would not fight for him and love him through. I will forever celebrate all of his victories because I know the struggles he has faced and continues to face to get there. He shone so brightly in our lives the moment he was born, with his fierce spirit, and I can only hope we are shining a bit of that light back onto him.”
This story was submitted to Love What Matters by Jennie Gallagher from Reading, PA. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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