Time for the next installment of my memoir, A Thousand Reasons Why!
My now new daily routine consisted of pumping every 3-4 hours, storing the milk, getting dressed, driving to the hospital, spending the majority of the day with Paxton, learning about his care, and driving back home, and collapsing on the couch. With each day the strength slowly came back to my legs. Each day also brought new information and new meetings with different members of the hospital staff. Paxton had six doctors on his team, two rotated every two weeks and each had different specialties like Gastroenterology, Cardio-pulmonology, Dietician, Endocrinology. We also had the head of nursing and social workers who met with us regularly. Paxton also had day, night and graveyard shift nurses, plus Respiratory Therapists.
On one particular morning this week, one of the doctors came to give me an update on Paxton’s progress while I was at his bedside.
“So we did a CT scan of Paxton’s chest to look at his lungs earlier today, and we discovered that the membrane that closes over the aorta after birth, didn’t close for him. We’ve given him 3 courses of this new medicine that is supposed cause it to close, but those courses didn’t work. The bad news is that he will need heart surgery soon. The good news is that the head surgeon of Pediatric Cardiology will be doing the surgery. He’s the very best in the Bay Area, so Paxton is in good hands.”
More information to process - too much information. Paxton wasn’t even a week old yet and someone was going to operate on his teeny tiny heart?! I was in shock. I didn’t know what to say. I mumbled a “thank you” after he told me we would need to have a consultation meeting with the surgeon so he could go over the procedure with us and inform us of the risks. Risks!
The day arrived for Paxton’s heart surgery - what would be the first of many surgeries on his tiny body. We had called our pastor to come to the hospital so we could dedicate him because we didn’t know if he would make it through the intricate and delicate surgery that was to be done on his tiny heart.
As we gathered around the warming table and began to pray, I kept picturing Abraham, standing over Isaac on the altar. He didn’t know what God would do, but had unshakable faith that God would either provide a substitute for the sacrifice that was about to be made, or God would carry him through what he was called to do. In my prayer, I offered up my son to God, sincerely dedicating his life to honor the Lord. We didn’t know what the outcome of the surgery would be, but entrusted God with the life of my child and that He would carry me through whatever the outcome would be.
At the time, I didn’t fully understand the significance of the test God put Abraham’s faith through. Only many, many years down the road would the lightbulb actually click as I read the scripture for the hundredth time during a Bible Study. The picture of Abraham’s sacrificing his only son foreshadows a much greater and Best Sacrifice - of God, the Father, sacrificing His only Son, Jesus, to take on the punishment for all our sins, so that we may stand holy and righteous in His eyes and be His children!
In the waiting room, outside of the doors of the OR, Casey and I learned our first lesson in navigating the intricate and confusing world of “no absolutes” in the medical industry. They told us it would be a two hour surgery. It had already been four - and no one had come out to tell us why. There was no one to page or talk to. We just had to wait.
I began to think back to the consultation with the surgeon. He was the head of Pediatric Cardiac Surgery, and we were grateful for that. He entered the small conference room, and we stood to shake his hand. For such a meaty, large hand, his grip was incredibly feminine. I thought, How can those pudgy, sausage fingers hold surgical instruments small enough to operate on Paxie’s tiny, little heart?! We were reassured by NICU staff afterwards that he truly was the best in the field and surgeons always give “loose” handshakes to protect their most valuable asset to their profession.
“It’s so very nice to meet you two,” he said. “I want to assure you that we will do our absolute best to repair your child’s ductus. This is a surprisingly common occurrence in preemies, as I’m sure the staff has told you. With the invention of the drug, Surfactant, it has made it quite easy to get it to close on its own without surgery. Did the doctors explain this to you?”
We nodded yes. We had been briefed on how a preemie newborn’s system works and what was normal and abnormal. We were told about the invention and introduction of this “new” drug that had been given to our son, not once, but 3 times, to try and close the ductus, a valve that is open in utero between the aorta and pulmonary artery, and automatically closes after birth with the first breath of life. We were informed that after 3 rounds of the 3-course injection, the next step is surgery.
“Good, “ he continued. “I want you to know that this surgery is a very common surgery - I have performed hundreds, maybe thousands, myself over my career - and there is minimal risk. But I do have to tell you there is a risk. There is a 10% chance of death as a result or during this surgery.”
Now for some people who have had many surgeries or are familiar with hospital liability protocol, this would be par for the course. But as new parents and very little experience with signing off on surgical procedures under our belts, we were in utter shock. Did he just say death?!
I felt my heart climb up into my throat as he handed us the surgery consent papers to sign. 10%…10% - that’s not too bad. They told us Paxton had a 10% chance of living if he were born at 22 weeks, and a 50% chance of being born that early, but we beat those odds, right?
I looked at Casey who was voraciously devouring every single word in the contract. He didn’t want to miss a thing. I just wanted to sign it and get on with the thing that would “90% chance” fix our baby.
*Stay tuned for the conclusion of this episode!!*
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