Life is full of miracles that change our world forever! Our little son Simon was nothing short of that miracle to our family! Our story of pregnancy began as anyone would expect. Having been newly married in June of 2016, being open to life and finding out our family was growing by one in the fall of 2016 and anxiously dreaming and anticipating our growing family was an exciting and unknown chapter that we had never yet entered.
Our pregnancy seemed nothing short of ordinary until I began noticing having increased swelling of my lower legs and slightly increased puffiness to my face. Assuming this was just a typical response to the later stages of pregnancy, I took steps of wearing compression socks and elevating my legs to help with increased inflammation. Not long after however, my symptoms began to worsen. One morning I woke up with a splitting headache and just feeling "off". My husband took my blood pressure and we soon realized that my pressures were highly elevated. I called my OB for triage and fortunately was able to be seen that afternoon for an urgent OB clinic visit; labs were ordered, urine analysis undergone, and an ultrasound was performed to check on our son. It was then that our OB doctor walked in and shared the news that our son was not receiving the proper blood flow to grow properly, there was excess protein in my urine, abnormal blood levels, and that our next step would be to transfer emergently to a larger city with a NICU available as both our son and I would need added support with a critical timeline. So many thoughts were racing through my head. Would our son be healthy enough to survive delivery? How would I be able to deliver our son when we hadn’t even had a chance to attend any birthing classes yet? What were those first moments as a family going look like at his birth? These questions along with so many others came over me.
We made the decision to rush by our own vehicle to St. Louis (a 2-hour drive from where we were currently living at the time) to be admitted to the hospital on bedrest and close observation. Over a 24-hour period, our pregnancy went from uneventful to life altering when our son was just 26 and 5 days old gestationally. I couldn’t help but wonder, how could this be happening to our family and why was my body not able to do what I always imagined pregnancy and giving birth to look like? I was given the diagnosis of severe pre-eclampsia which progressed quickly into HELLP syndrome and subsequently caused our son to have fetal growth restriction of weight below the 10th percentile for his age called IUGR. Our prognosis was poor and the plan to begin corticosteroid injections to stimulate our son's lungs, medications to manage blood pressure, constant fetal monitoring, and complete bedrest was begun. Delivery was anticipated to be anywhere from immediately to 3 months from admission to await our son arriving as close to term as possible. Our hearts were yearning for his delivery to be as close to term delivery as possible, but the medical signs remained to show us otherwise.
Overnight, my blood draw lab levels continued to deplete and the only way to support both our son and I was to have an emergency cesarean section performed the day after our progressive diagnosis. At 26 weeks and 6 days (3 months premature), our son Simon Jacob Paul, came into the world at 11:56am on January 5, 2017 weighing 1 lb 6.5 oz and 12 inches long. Life was forever changed from that instant onwards as our hearts would never be the same! Because Simon was born so early, he was immediately intubated and placed on a ventilator to support his immature lungs and assist in his breathing. He was immediately transferred over to the care of St. Louis Children's Hospital in his isolette while I was transferred to the post-op recovery room at the OB floor of the connecting hospital.
And so began the story of Simon's NICU journey! Simon's journey of life involved numerous triumphs and heartbreaks that taught us to continue to just live in the moment and savor any and all time we had together. Simon spent his entire 3 months of life in the NICU in St. Louis. But in those 3 months, we know he touched more lives than we will ever realize and changed my and my husband's hearts forever! Some of his greatest triumphs included being baptized, having numerous family and friends visit, and enjoying kangaroo care snuggle time. Some of the darker moments included never weaning down further than the oscillator ventilator to conventional ventilator, frequent heel sticks/chest x-rays, and constant medications needing to be administered to just keep a stable course. In Simon's last several days, he was diagnosed with a condition called SIADH due to his prematurity of his lungs which caused excessive swelling in his body. With this condition, the treatment is to limit fluids to reduce the overproduction of fluid buildup, however, in order to grow, Simon needed any and all nutrition he could get. In his last several days, Simon was placed on NICU hospice as the medical providers had done all they could to provide for our son and his ventilator support was removed as we gathered as a family and gave our son back to his true heavenly home on March 31, 2017.
Did we go through all the stages of grieving not only during his earthly life but especially after his passing? No doubt. Did I go through "what if" scenarios regarding what I wish would have changed or wish I would have known to not have our son go through this? For sure. Our story almost seems unreal at times when you consider all the suffering and yet beauty in our beautiful son's life. We can ask, how could our child who was given a start at life under a seemingly normal pregnancy take a turn for the worse and have no further options then to be removed from life support and need to be given back to God even before he really got a start? It is very difficult for us as human parents to accept these things no matter if you had your child for only a moment in the womb, days/months in the world or even a lifetime. But this is when we must remember that there are certain things in life we have no control over (something I continue to need to remind myself of daily). After losing Simon, it was difficult to talk about and relive all the moments when sharing his journey, but I came to realize it was in sharing our son's story that I was reminded of the true gift of Simon, how his presence still lives on and that his life continues to be worth celebrating including every birthday and his heavenly day each year! Yes, it is always difficult to know how to answer the question, “how many children do you have?” Our current response is “we have one in heaven, one on earth, and one on the way!” We never want Simon’s life to go uncelebrated, so even if that means shedding tears when sharing our son’s story or when it hurts to flashback to those raw moments in the NICU, we know that we must embrace those feelings because we were able to truly love and be loved by our son!
We don’t know God’s reasons for calling Simon to heaven at such a young age, but we must know and trust wholeheartedly that God was there every step of the way walking beside us. Never underestimate the power of prayer. God had a purpose for our son's life and death. In the end, all we have and all we are belongs to God. So embrace your children and love them through all the moments. Enjoy every minute God gives you with them because He is going to need them back some day as they are only on loan to us from heaven!
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