Some people never meet their hero – I gave birth to mine.
On the eve of my thirtieth birthday, July 1st, 2016, we put our daughter to bed, and ordered takeout from our favorite restaurant. I went into my bedroom to change my clothes, bent down to fix a picture frame, stood back up, and felt my water break. I immediately said to myself, “I’m only 25 weeks. What does this mean? Why is this happening? Will this baby be ok?”
For both pregnancies, I always had extra fluid, known clinically as poly-hydramnios. With my daughter born full-term, I never thought it would be any different this time around. With no warning, and no other medical concerns, this was a total shock. My then, 18-month old daughter stayed home with our babysitter, asleep in her crib, and unaware that she would wake up in the morning for the first time without me there. When I arrived at Monmouth Medical, per my OB’s request, I was rushed to Labor & Delivery, where I was examined, and thankfully, found out I was not yet dilated. This meant they were going to do everything they could to keep that baby safely inside as long as possible. I received steroid injections for his lungs, antibiotics, and a Magnesium drip to help avoid going into active labor.
Three weeks later, due to dangerously low levels of fluid from my water rupturing a second time, and decreased fetal movement, an emergency C-section was performed, 28 weeks into my pregnancy. On July 22nd, 2016, we welcomed our son, Michael Anthony. He was born at 2:56 p.m., weighing only 3 pounds – 4 ounces, and exactly three months early. I never could have imagined how life would challenge us in those weeks to come.
August 2, was the day when everything changed for Michael. The first eleven days of his life weren’t easy to say the least, but it was what we expected, what everyone prepared us for. I was so naïve to think that the worst part of this experience was not being able to bring my baby home right away.
But then, all too quickly, things took a turn for the worst. When Mike and I got to the NICU on Day 12, I knew something was “off” as soon as I saw him. He was pale, lethargic, and not his feisty, little self. The testing began, the medications, the transfusions – our worst nightmare unfolded so quickly.
He went from doing so well, on C-PAP, to being re-intubated within a few short hours. I remember stepping out into the hallway with my Dad for a moment, as they got Michael settled. I looked at him and said, “Dad, for the first time, I’m really scared.” I remember the doctors and nurses advising me to call my husband and ask him to come. I remember them telling me not to touch him for a little while, in an effort to keep him as calm as possible. And then, I remember them bringing over a chair and telling me “Sit with him, touch him, do whatever you need to do.” In that horrifying moment, I knew, with painful clarity, how dire the situation really was.
His heart rate continued to climb and his platelet count continued to drop, the lowest being only 9,000. The lab decided to redraw the blood count because even they couldn’t believe what they were seeing. At one point, his heart rate was 242. Lizzie W., his incredible nurse that evening, reacted and immediately called Dr. Kale. The most difficult thing was watching our child suffer, knowing we would do absolutely anything to save him, and being utterly and completely powerless, all at the same time. We were at the mercy of his doctors and nurses, and of course, our faith. In the middle of the night, in a quiet NICU, all of the bright lights were on Michael. We had to sit back, and let them work. At one point, my face was in my hands, because I felt like I couldn’t watch for one more second. The ice on his face trying to shock his heart out of that rhythm, the triple checking of the calculations, failure to obtain his blood pressure, countless platelet and blood transfusions, and the list goes on.
Dr. Kale is one of the many doctors that saved his life, and saw us through some of his darkest hours. I remember grabbing her hand, and begging her to tell me what was going to happen. She may have prepared us for the worst, but she did the absolute best she could to keep him alive. I thanked her, over and over again. All she said was “Don’t thank me, this is my job,” but she did so much more than that.
Two days later, when Michael’s lab results came back, we learned that he had Sepsis, Staph Aureus. The necessary medications to beat this began, and our little fighter continued to fight. Then, exactly one week after what we thought would be our worst night, we were faced with our biggest challenge yet.
On August 9th, Dr. Hudome called me at five o’clock in the morning and told me that Michael was not oxygenating, and they had no choice but to switch his breathing support over to an oscillator. It was clear that something else was very wrong. That was the day I asked for a priest. Michael was declining, his organs were failing, and we knew there wasn’t much time.
Again, the tests began, searching for a cause. And just when I thought we were clear from another horrifying piece of information, Dr. Rivera, the cardiologist, came in to scan his heart. Shortly thereafter, we were told that Michael had life-threating Endocarditis. He had developed a massive clot, as a result of the Staph Aureus infection, that occupied the entire right ventricle. As his little heart was working so hard to pump, pieces of that clot were moving into his lungs, which is why his breathing had taken such a dramatic hit. Immediately after he was diagnosed, it was explained to us that Michael’s needs were extreme, and exceeded what Monmouth Medical was capable of. Dr. Rivera insisted that he be transferred to the Children’s Hospital of Philadelphia as soon as possible. In a split second, everything changed. That afternoon, Michael’s team of doctors made the arrangements, and a few hours later, the massive transport team came to take our baby. The memories of this night are almost too painful to recount.
I hugged his doctors and nurses, not knowing if we would ever see them again. They took him out of Monmouth Medical, put him in an ambulance, and drove to the Long Branch High School football field. We followed. As they were pushing Michael in the transport isolette towards the grass, I stopped them. I bent down so I could look at him one more time, and said “Michael, you have to keep fighting. Your sister wants to meet you. Mommy and Daddy love you so much.” And with that, they locked the gate. Mike and I were on one side, and our then, 1-pound – 5-ounce baby and a helicopter were on the other. I held onto that fence, and watched until they were out of sight. No control, completely numb, and an unbelievable feeling of desperation. This was the last picture I took of him that night. I know some of these images are hard to look at, but to any of you that are caring for a preemie or a child with needs – I want you to never, EVER, give up hope, because these babies are fighters.
At CHOP, we were told that Michael was very sick, the severity of his condition was rare, and that we needed to prepare ourselves. I remember the head of the cardiology department asking, “Do you have other children?” “An 18 month old little girl,” I replied. He told Mike and I, “Bring her in. Let Michael’s nurse take a picture of the four of you together.” The sobering reality of what they expected to happen was so painful, and beyond scary. He was not a candidate for surgery due to his size. So, our only option was to begin Heparin, and subsequently, Lovenox, both anticoagulants, in an effort to bide more time to allow Michael’s body to break down the clot.
Each day, was an uphill climb, highs and so many heart breaking lows, but our little fighter hung in there.
After five long weeks, and too many uncertain nights to count, Michael returned to Monmouth Medical to finish out his stay. I always thought the best day would be taking him home, but I was wrong. Seeing Michael back with his original team, in a hospital that we now called “home”, knowing he was going to be OK – that was, by far, the best day.
All of the neonatologists from Monmouth Medical – Dr. Carlos Alemany, Dr. Diane Attardi, Dr. Susan Hudome, Dr. Meera Kale, Dr. Kirby Rekedal, and Dr. Erin Qualter all went above and beyond, for him, and for our family. We are eternally grateful. Below is the first picture of Michael with no tubes, no wires, no tape on his face, no alarms beeping. I could just pick up my baby, and walk around his room. What an incredibly surreal feeling. The gold medal my sister had purchased for him the day he was born stayed pinned to a picture of Michael, Lia, and myself, inside his isolette, so we were always with him, even when we couldn’t be. On September 22, 2016, I was finally able to pin that blessed medal on his clothes, and take our baby home.
To all of the nurses that took care of our son, I want to name all of you because you deserve the recognition – Lizzie W., Sue S., Laura N., Jess K., Stephanie T., Mariane B., Kris G., Katy D., Gina Z., Tina V., Kate R., Kim M., Mary Jane D., Christine P., Michele L., Vivian S., Lauren C., Sherri Y., and last, but certainly not least, Allie S.
Allie, Michael’s primary nurse, was with him from the day his was born. She took care of our son before we could – helping us hold him for the first time, and teaching us how to change his diaper with his teeny tiny legs. For everything you did for us then, and all you continue to do for our family, there are truly no combination of words that could ever adequately express what you mean to us, and just how much we love you. You are an angel, a gem, a rare gift, and one that will be treasured forever.
The level of knowledge, attentiveness, compassion, and care that was given from the entire Monmouth Medical staff is immeasurable. Your team is as good as it gets. These photos are from their Big Steps for Little Feet walk. We had the pleasure of being the honorary family on their 50th Anniversary. Our team name was MIRACLE MICHAEL & over a hundred family members and friends of ours joined our team, and came out to walk & support Michael & Monmouth Medical’s NICU. It was such a special day.
To our parents, our siblings, and our families, no one is better than you, and no one is luckier than us. You never, ever, left our side. It is because of you, that we continued to put one foot in front of the other, when it felt like the weight of the world was on our shoulders. Your unconditional love and unwavering support could never be matched. We thank you all, and love you, endlessly.
To our Michael, our miracle, our real life superhero – you struggled, and battled, and fought, and overcame, when all of the odds were against you. Never underestimate the power of a preemie. What a difference three years makes. May your future be as bright as your smile. God Bless you, today and always.
Lastly, I don’t know what we ever did to be so lucky, but I promise to spend the rest of my life being so thankful for my beautiful children. Thank you all for following along on this journey. XO