The next 5 days consisted of a myriad of tests, doctors, and waiting. The doctors were confused because the scans showed that there wasn’t a complete intestinal blockage, but Claire still wasn’t pooping.
On day 6, a surgeon came and explained we could do one more test or go into surgery. My husband and I looked at each other and immediately felt surgery was the answer. Deciding to send your 6-day old baby into surgery was heart wrenching but things quickly turned urgent and we knew we made the right choice. The doctors prepped for an evening surgery. It was the day before Thanksgiving, so Claire’s lead surgeon had to drive back to the hospital as he had left to go home for the holiday. I felt something was going really wrong. Claire’s blood pressure spiked to over 200 and she was screaming crying in pain. I told the nurses I felt like something was wrong and begged to get her to surgery as soon as possible.
The surgery transport team arrived, and I remember walking down the NICU hall to the surgery elevators, with some NICU nurses stopping in the halls to watch us pass. I tried to stay strong, but each step felt harder than the next to take.
We made it the operating room prep room and the doctors also suspected they needed to get her into surgery as soon as possible based on her blood pressure and demeanor. We said our goodbyes, praying we would see her again but not knowing for sure. She was wheeled off and a nurse and my husband assisted me to sit down in the nearest chair. Another nurse handed me apple juice as they were concerned that I was going to faint. My husband and I waited in the surgery waiting room for over 3 hours. I can’t even tell you what we did but we barely talked to each other. In that silence, I think we knew there was a chance we wouldn’t see her again. Those hours felt like days. Finally, the doors opened and I spotted Claire’s lead surgeon. He said she had made it through the surgery, but they were glad they did the surgery when they did because her intestines had perforated or burst internally probably within the last couple hours before the surgery.
I was in disbelief. That was what was happening as I held her in the NICU when her blood pressure spiked. I couldn’t believe my baby’s organs were bursting inside as I held her. I felt sick inside. They told us she was on a ventilator and would be back in the NICU soon. We made our way back up to the NICU and into the room. Seeing her on the ventilator was awful. It was hard to look at her but I tried to tell myself she was here and that’s what mattered. Because her intestines had burst, the doctors were scared she could get a systemic infection so we had infectious disease doctors monitoring her constantly. We had a few scares when her temperatures spiked but the big thing from her surgery was that an ostomy was created. An ostomy is basically where they bring part of the intestines outside of the body. A small bag goes over the exposed intestines and poop collects in it. Sounds scary because it is. A lot of medical stuff happened after her surgery but I am going to save you from a lot of medical details. Let’s just say things went from bad to worse. The ostomy wasn’t working the way it should and I could tell the doctors and nurses were getting anxious. She wasn’t following the normal path of recovery. I tried to maintain hope but each passing day gave me more anxiety. One night, thirteen days after the first surgery, my husband and I left the NICU together. My phone rang and we answered if over my car speaker. Our lead surgeon’s voice boomed over the line and I immediately knew something was wrong. If the lead surgeon was calling you from his cell phone at 10 pm, it was not a good sign. He informed me he had a feeling that something was going wrong with Claire’s recovery and wanted to go back into the operating room the next morning. I had no words. How did this happen? Hadn’t we been through enough?
We agreed to a second surgery. Claire was 19 days old and we were heading back to the operating room. I cried a lot but at that point my body almost felt out of tears if that’s possible. That night was probably the weakest I ever felt along this journey. I didn’t even know if I would physically make it through another surgery. I wanted to be strong for Claire, but I felt like I had nothing left.
The next morning, we went through the same routine. The same surgery transport team, the same operating room prep area, the same waiting room. We said our second goodbye and sat in silence again.
Suddenly, a receptionist walked over and told us the surgeons were calling us from the operating room. My husband looked surprised but followed the receptionist to a desk just far enough that I couldn’t hear the phone conversation. He took the phone and I saw his face drop followed by his head into his hands. I could tell he was crying. Seconds later, he was walking towards me, with tears in his eyes. He couldn’t speak. “Please tell me what is going on?!?,” I practically shouted at him. He couldn’t respond. He was about to tell me she didn’t make it.
I immediately got dizzy; the room felt like it was spinning. He finally caught his breath and informed me that the surgical team was coming out to get our consent for a blood transfusion. Claire was losing a ton of blood during surgery and they needed our consent to give her blood if necessary.
As crazy as it sounds, I was relieved. I thought he was about to tell me our daughter was dead. A blood transfusion seemed so minor at the time. I don’t remember signing the consent or even what it said. I could have been signing my life away and didn’t know it.
We continued to wait. The surgery was almost 5 hours, 2 more hours than the first.
About 5 hours in, a huge team, including our head surgeon, walked out the doors. They told us they wanted to speak to us in a private room off the main waiting room. That didn’t happen the first time. They had told us all went well right in the waiting room after her first surgery. I looked from face to face trying to read their expressions but couldn’t get any vibes. Again, my heart sank. Were they about to tell me after all this she didn’t make it?
We walked the longest walk of my life into the small room off the waiting room where our lead surgeon took a big breath and said “wow, that was a very tough surgery.” He looked tired. He started explaining that Claire’s ostomy had necrotized or died and that her intestines had died inside. They had to remove a very large portion of her intestines. Another surgeon held up a photo of the removed intestines. I winced and turned away, not able to look at my baby’s dead intestines. Claire was intubated again with a ventilator and was being transferred back to the NICU.
The rest of our NICU stay feels more uneventful but it really wasn’t. Even with her revised healthy ostomy, we had complication after complication. At one point, I thought to myself, “there cannot be one more thing that goes wrong, it’s just not even possible” but then I would get nervous thinking I would manifest another complication into reality.
My husband and I rarely saw each other those 9 weeks in the NICU. We split shifts between home and the hospital. I was on the morning shift and he was on nights. We would often be ships passing in the hospital lobby handing off our 2-year-old son or a hospital parking pass. We weren’t in that newborn sleep deprived state most people experience and complain about. We were in a life or death NICU battle where each day seemed to hold more complications and a farther away discharge date. We spent Thanksgiving, Christmas, New Years and my birthday in the NICU before being released for the first time. Yes, you read that right. The first time. We didn’t know it at the time, but we would be back in the NICU in just 19 days.