Hurry Up and Wait

Layla is 13 days old and I’m writing this as we sit in her room at the Children’s Mercy PICU. There are what looks like a thousand wires and tubes connecting machines to each other and to her. Her heart and lungs are currently being supported by ECMO (Extracorporeal Membrane Oxygenation), which she’s been relying on for more than four days now. This is the last and most extreme intervention available to help her, other than surgery. For various reasons, all out of our control, she has not had surgery yet, which we thought would have taken place sometime in the previous week. Her surgery was officially on the schedule for this morning, until “an emergency came up” and the surgeon had to cancel. We are awaiting the reason and a reschedule date, and praying and hoping that she remains stable enough for as long as it takes to get her heart fixed.

Backing up a bit as to how we got to this extreme situation – Layla was born without complication after 13 hours of labor at 12:02 am, November 3rd. Since the NICU was awaiting her arrival with the heart condition, they were able to stabilize her quite successfully using medication called prostaglandins to keep the holes in her heart open to help with proper mixing of oxygenated blood since the plumbing she was born with is backwards. In the first couple days she developed a fever as a side effect of the medication, so they stopped it and watched to see if her oxygen levels remained stable without the meds. She did fantastic, so they kept her off. We spent just over a week being able to hold her and nurse her and enjoy her during her stay in the NICU while we waited for a surgery date. On Monday the 9th, are nerves were tested as they put her under for a cardiac catheter procedure to take some better pictures of her coronary arteries so the surgeons could be fully prepared with the unique landscape of her heart. She bounced back rather quickly and surgery was scheduled for today. We planned on spending the week leading up to surgery continuing to nurse/feed her, helping her to establish healthy feeding habits and continue to fatten up.

But Wednesday afternoon, November 11th, things started to get sketchy. I can’t describe all the scurrying around of dozens of medical people around her and the process of trying to figure out why her condition was turning the wrong direction so suddenly. It was just scary, and it lasted for hours, while we stood by and watched all her numbers falling and the alarms on the monitors going off nonstop. Ultimately, as nature always intended, one of the holes in her heart that was helping her blood mix effectively, had closed up, and it did it in a matter of minutes. They tried to restart the medicine they used at birth, but it couldn’t get there fast enough. She was suffocating and being doused with a medication that also had side effects that made her ill. Some adjustments were made and she achieved a bit of stability, and the staff decided to move her to the PICU, so she had a room established for surgery. In the middle of the night, we moved with her to her new room in the PICU, and not minutes after being here, things went haywire again. Her oxygen levels dropped out and her blood pressure went out of whack, something we hadn’t seen yet. On top of all this her white blood cell count had risen and she was running a high fever. Doctors talked of infection, which not only put her at risk , but would mean postponing surgery until any infection had cleared. They kicked us out of the room while they frantically tried to save her.

I don’t know how much time passed while we waited alone in a dirty old private room on a couch in the wee hours of the morning; crying, praying, pleading, holding each other. The nurse said someone would come update us as soon as someone was free from trying to save her life. I was overdue to pump breastmilk, so someone brought me a pump and I sat there syphoning milk from my boobs, dazed with exhaustion and fear, wondering if I would even have a baby to drink it some day. It was terrifying and paralyzing. I pleaded with God and threatened God, and when I couldn’t think of any more words to pray, I just prayed over and over and over, hundreds of times, “God help her fight. God help her fight. God help her fight.”

Finally the doctor came in and I feared the worst. Thankfully he said she was stable but highly medicated and not in a sustainable way, and another intervention had to be done. The surgeons met and presented us multiple scenarios, and ultimately the decision was made to put her on ECMO since there was a concern she had an infection and no other procedures were possible till that was ruled out, which could take a few days for lab results. Our hearts were broken that it had come to this, after such a promising week, yet relieved it had not come to the worst. Time had been bought, though not without major risks, and she was out of options.

Since that night she has been stable and all the labs have come back negative for infection. They believe it was just the ripple effect of that hole closing up, and no one realized how much she was relying on that particular hole for oxygenation (she has a couple others still). We were all geared up and she was optimized for surgery this morning, which we narrowly missed that opportunity for whatever reason. I’m sure it was a good one – probably another child in a life-threatening emergency that required surgery overnight or first thing this morning. It’s a hard pill to swallow that Layla hasn’t been priority enough to get her heart fixed, but we hope and pray it is a testament to her strength, and that her time for surgery will come and be the best time for her to have the best outcome. In the meantime, hopefully several other baby’s lives have been saved while she rests and waits for an available surgeon.

Though we sit her in the room with her and can stand by her bedside, we miss her dearly. She is kept mostly sedated so she doesn’t squirm or grab onto the equipment keeping her alive. We caress her and kiss her head. We hold her hands, and if we are lucky to catch her as her last dose of sedation wears off, we’ve been lucky to see her open her eyes and look at us, or squeeze our fingers in her fist. She gets angry when nurses mess with her, setting her alarms off temporarily, but whenever Ronnie or I are near and touching her, all is calm. She knows us, and shows us how strong she is. She is our warrior princess, and we have faith she will continue to fight through this and come out stronger in the end.