Finding out we were pregnant was a surprise. Learning it was a boy was equally surprising. But the news we received during our 20 week ultrasound that our son had Gastroschisis? That was a whole different kind of shock.
Gastroschisis is a breech in the abdominal wall through which some amount of intestine or organs protrude. If the organs are exposed to amniotic fluid too long, damage occurs, and digestion problems for the baby are certain.
We watched our plans of a natural birth vanish as the doctors prepared us for the reality of a pregnancy filled with monthly ultrasounds and the high probability of induction. Fortunately, they assured us this was an easy fix with a post-birth surgery and a month of recovery in the NICU.
Still, half our pregnancy was fraught with anxiety and tension.
Finally, on a hot morning in July, Santino was born. Beautiful. Screaming. Just like any other newborn.
He was immediately slipped him into a sterile plastic bag that covered him up to his armpits as the doctors whisked him off to surgery. We were robbed of the joy of holding him—a loss no parent should endure.
Then we waited.
“It was hard to see him on a ventilator, but the news we received was the best we could have hoped for.”
They were able to fit all of his intestine into his abdomen and close his defect completely. He was given a Broviac Central Line that provided nutrition and hydration intravenously.
Again we waited.
We waited for him to breathe on his own. We waited for his bowels to “wake-up” from the trauma.
We waited for eight weeks.
Then came a second surgery where our son lost half his intestine. Santino was now a Short Gut Syndrome patient.
On day 100, our baby boy came home. A Central Line was still attached straight to his heart, he was given an ostomy—an external hole to his intestines that allowed him to heal before reconnection surgery—and we were joined by a mountain of supplies needed to take care of him.
From there the medical supplies and hospital visits were relentless. We received boxes and boxes each week and had hospital stays for everything from blood infections to fevers.
The expense of it all was overwhelming.
We received bills with staggering numbers accompanied by explanations, “This is how much this cost, but we don’t know how much you owe yet.” Frustration became best friends with fear.
There were deductibles. There were co-pays. There was always an out-of-pocket expense. Our insurance covered some. Our mounting financial stress covered the rest.
That’s when Trigger’s Toys stepped in.
They took care of essentially everything we couldn’t. Their pledge and follow-through allowed us to not only spend what we needed to keep our son alive, but also to buy the equipment that helped him grow and develop.
We couldn’t be more grateful for the support. Thank you, Trigger’s Toys, for allowing us the freedom to shift our focus off our financial responsibilities, and on to our son.
Santino had his Central Line removed a few weeks after his second birthday.
He’s happy. He’s healthy. He eats like a maniac. Or more accurately, thanks to Trigger’s and an army of medical experts, he eats like any other two-year-old…whenever he’s “in the mood”.