This is a day we’ve shared with few people, but one I reflect on often, and increasingly so with Sammy’s open heart surgery officially scheduled (more on that later).
The first morning after Sammy was born, I sent Mike ahead to meet his doctors for what they call “rounds.” Every morning at 9 o’clock, the team of doctors from each department begins discussing the latest in each infant’s case, and parents were encouraged to attend the session on their child to ask questions. Not something to be missed! Still wheelchair-bound I waited, somewhat impatiently, for Mike to return and take me to the NICU, so I could see Sammy. Soon Mike walked in, and I could tell by the curious smirk on his face–something was up.
“What?” I asked.
He shook his head.
“What?! Tell me!” I pleaded.
“Ok…so…there’s a chance that…Sammy might not have heterotaxy.”
His words sucked the air right out of the room. My mind raced. Heterotaxy complicates everything. In large part, it is the reason for such dismal outcomes for CHD babies—having no spleen causes their immune systems to be compromised and work against doctors’ efforts, and…
Suddenly my rambling thoughts were disrupted by waves of laughter and tears. Mike cautioned me not to get my hopes up. A repeat scan was ordered, but the initial report from doctors was that—apart from his structural heart problems—Sammy’s organs appeared to be present and normal. This was nothing short of a miracle! Mike and I decided to wait for confirmation from the second scan before sharing the news with family.
And wait we did! We couldn’t get in front of Sammy’s doctors again to discuss the latest results until the following morning. This time, I attended rounds as well. As the team discussed Sammy, my heart was pounding waiting for the moment where they ask us if we have any questions. Finally, our time came.
“So, just to be clear,” said Mike, “you are saying Samuel does not have heterotaxy?”
And with a smile and nod, the lead doctor said, “Yes.”
“Wow,” said Mike.
We went straight to Sammy’s room to celebrate with him and wait for the cardiologist from Children’s Medical Center to come discuss the plan for transitioning Sammy from my delivery hospital’s NICU to his room at their hospital. No longer able to contain our excitement entirely, we called our family back in Oklahoma and told them they needed to come to Dallas for a big surprise.
Hours later, just as family started arriving, so did the on-call cardiologist from Children’s. As family was detained in the waiting room, we sat there huddled in Sammy’s NICU room, where it quickly became apparent the cardiologist had come to talk about…everything.
“So as for the heart, it looks like he might need surgery soon and you’ll need to go to Houston for that. It requires bypass, which comes with the danger of neurological complications. And as you already know, his heterotaxy means he has no spleen, his intestines are malrotated, his liver is midline, his stomach is on the wrong side, and his left kidney is duplicated….”
Perplexed, I shook my head at Mike, who then interrupted the doctor. Someone started to suck the room of air again.
“This morning we were told that Samuel does not have heterotaxy,” said Mike.
“Really?” she said, “Well our radiologist does this every day and according to our scans he does have heterotaxy.”
“So, he doesn’t have a spleen,” Mike asked.
“Correct,” she said.
As they went back and forth, I desperately stared at Mike trying to find words to end the conversation. Mike’s return glance confirmed what I feared was about to happen. Like a dam caving in to the unbearable weight of relentless flooding waters, I was suddenly gasping and sobbing. Shaking with panic, I was terrified by feeling as if I was outside my body watching events unfold. Mike asked everyone to leave and sat there holding me until I could breathe again.
I must have scared the doctor too because she never came back. (Ever.)
But now what?! We had no clue what was going on with our son, and we had a room full of family waiting for this big surprise–and they were about to get one, for sure. While Mike went out to bring family up to date, Sammy’s NICU nurse–who had been in the room with the cardiologist– came in and asked if I wanted to hold Sam. As I held him, she told me she often prays for him, how she wished she could fix this for me, and reminded me that I am not alone. In that moment, she was my very own angel of mercy. Although her job was to take care of babies, I believe God sent her to minister to me in my moment of need. Soon my angel sent me back to my room with strict orders to rest and not try to return again that evening—all the while reassuring me she had Sammy, and he was safe.
Dinner is always a good distraction, so Mike took the family out while I tried to rest. It was hard at first to stay put, but with rest came some clarity and hope as I recalled a simple passage of Scripture.
“God saw the people of Israel — and God knew” Exodus 2:25
God knew. He knew then and He knows now. While there were still so many unanswered questions, these two words brought great peace. God knew. He sees me, and He knows.
With Sammy’s open-heart surgery officially scheduled for March 1st, my body has again begun to show intermittent signs of anxiety, yet I am immediately brought back to this day when God sent an angel and a Word to uplift my heavy heart. And while I can’t see ahead, one thing I do know is He promises an exodus.
Photo credit: Jonathan Burkhart, High Five Media OKC