Continued from: The Day My Daughter Almost Died- Alice’s Fight With NEC (Part 1)
“The plan was to take her and start heading to Chapel Hill, but probably we would be diverted to Greenville, as they were more likely to take her. So, the ambulance was going to get on the road, and we were going to head up after them. We should put Chapel Hill in the GPS, but the transfer team would call us if we in fact were being diverted to Greenville.
So, with that, we said goodbye to Alice. Not sure where we were going, not sure if we would see her alive again. We set out hoping for the best but preparing for the worst, with 2+ hours of driving ahead of us.”
It felt so crazy dark that night. We were on Route 40 heading out of Wilmington. The ambulance left before we did, but I think by now it was only maybe a half hour ahead of us. We were driving towards Chapel Hill, but really had no idea where we were going. Waiting on a phone call to tell us if we were changing course. We were trying to get in good spirits, trying not to worry- because worrying never helps a situation. All we could really do was wait.
The phone rang, but it was choppy and staticky on the other end. We couldn’t really understand what the woman on the transfer team was saying. Then she hung up. For about a minute, we were in a bit of a panic. Luckily, a text message made its way through, even though she clearly had poor service.
She was being diverted. Chapel Hill wouldn’t take her.
I looked up the address of the hospital, and we pulled off the highway to update the GPS. The car is oh-so-helpful, and won’t let you change the address while driving- for safety reasons. Luckily, we got the message at the right time, because our exit hadn’t come up yet. It actually happened to be the very next exit- which was still 20 miles, but good timing nonetheless.
So, we continued on our way to Greenville, still trying to keep our minds off of what was really happening. Keeping the conversation light, even joking and laughing. Trying not to focus on the dark cloud in the back seat reminding us where we were going. Reminding us that she may not make it, we may get there and have to turn around with a dead baby. (In writing this, I am stopping here thinking how harsh that last line sounds. I considered reworking it, not using “dead baby”, making the line more reader-friendly and airy. This is the truth though. This is what kept trying to crawl into our brains during that drive. There’s no use in masking the truth when writing a real story. So here it is.)
The drive, in the middle of the night, is ridiculous.
The way from Wilmington to Greenville is a bunch of country-back roads. Dark as you will never see in a city, or even suburb for that matter. Pitch black around your car, with your headlights the only area you can see. (Except for the rare car coming towards you with their blinding headlights.) The speed limit is 55mph on almost all of the roads, you can’t see a thing except what is directly in front of you, so that curve in the road up there? Looks like a dead end. It was nerve-wracking. As we got closer to Greenville, it became a little easier, with lights in the towns and other cars on the road.
We finally arrived to the hospital, which was clearly being expanded, and figured out how to get in. The children’s hospital, where the NICU would be, was the first building. We had to drive past it on a one-way drive to get to the expansive parking lot. Miraculously, we found an open spot on the side of the lot closest to the children’s hospital. (It was the middle of the night, so maybe it was more timing than miracles, but everything feels like a sign for you when you’re hyper-emotional)
“Seriously though, where are we?”
When we walked in, it felt like a stereotypical dramatic hospital entrance. It was quiet and empty, the lighting felt too dim. The murals of sea creatures on blue walls reminiscent of waves was supposed to make the lobby feel inviting. It felt empty and swallowing.
There was one woman sitting at the front desk who pointed us in the direction we needed to go, mentioning that there were some extra turns because of construction. They were currently redoing the NICU. (Of course they were.)
So we headed through the little lounge area, past the small café-type tables, benches, a gift shop and a snack shop into the hallways. There was an orange laminated sign stuck to the wall directing us to go right to the NICU. This started the maze of what felt like never-ending hallways. We felt as if we were transported into a hospital horror movie. The lights were actually flickering down long, deserted hallways. The detour around the NICU because of the construction, included back hallways and heavy doors. There was a deranged, masked killer behind us at one point. Ok, there wasn’t, but there could’ve been and neither of us would’ve been surprised.
It was the most surreal 10 minutes of my life.
We were confused, not sure if we were lost, in a creepy “deserted” hospital. We were laughing at the situation. Full on making jokes because, what else do you do in this situation? All while being terrified.
Terrified of finally getting to the door that had the doctors on the other side, the door with our answer. Terrified of what that answer is. We finally got there and on the other side was a makeshift waiting area with three or four chairs, a computer on a fold-out table, and a woman behind it who seemed disorganized and unaware of her position and surroundings.
Since it was such a mess from construction, and this was clearly not her normal set up, she seemed to be a bit out of her element. It was a confusing few minutes while we explained what was going on, that our daughter was just transferred here, that we have no idea how she is and her subsequent quest to find someone who knew something.
We sat waiting for someone to come back to tell us what was going on, in a poorly lit (the lighting everywhere this night was seriously in line with how we felt) pseudo-waiting area. It was the first time since the other hospital that we really felt the weight of what was going on. The longer it took, the heavier my heart felt and the deeper the pit in my stomach.
Finally someone came around the corner, and immediately I tried to read his face. You do that a lot when talking to doctors and nurses, try to read if they are happy, sad or calculated, to prepare yourself for what they are about to say.
He didn’t look apologetic.
Which was a good sign. That apologetic look, you see it on Grey’s Anatomy when they are going to talk to families of a patient that died, it’s a real look. It’s what we got when we showed up to the other hospital and she was so sick, and before she left when we had to say goodbye “just in case”. So, the straight face he had instead was a tiny bit of hope.
He told us it had been a rocky ride, but she made it. He wasn’t sure what happened on the way, but she was actually doing better now than when she was in a fast decline when leaving Wilmington. Because she was pretty much stable, and the x-rays they took here didn’t show any air bubbles in her abdomen, they took surgery off the table. At this point we were waiting on some cultures from Wilmington, as we still didn’t know what was making her so sick, but she was stable enough to rest.
She was stable.
That was a huge relief to hear. Still scared, still feeling like we needed MORE answers, but she was still alive, and she was stable. We went to see her, she still looked so sick, we sat with her for a little while then got set up in the emergency overnight room for parents. It was a huge relief to have that room, and it was just steps from where Alice was so we were able to go sit with her through the night when we woke up.
Morning came super quickly. Neither of us slept very well, it was a late night and we were up early. Alice was looking better, but was still unresponsive, and clearly sick. When we woke up, we still didn’t have an answer about what was causing the infection, but we soon got word from the hospital in Wilmington that all of the cultures they did came back negative. The doctors made the decision to go ahead and do an “exploratory” surgery, to see exactly what was going on. Since the cultures were negative, it was definitely her gut making her sick, and the doctors wanted to see how bad the situation was. They were confident at this point that it was NEC, but with the unclear x-rays, there was no way to know how bad it was. If nothing else, they were confident the surgery would help her swelling go down.
So again, we were preparing for the worst, but hoping for the best. We sat there and waited with our coffee.
The doctor came in quicker than we expected.
It worried me at first. Your first thought is always what you think is the worst. Luckily, she didn’t come in saying it was too late and they couldn’t do anything, which is what I was fearing. She came in and said the surgery was successful. A section of her intestine had perforated, which was allowing air, fluid and waste into her abdomen. They were able to remove it and it was a small enough section that she shouldn’t have lasting issues from it.
For the time being, they were keeping her intestine separated. She would focus on healing and growing over the next 6+ weeks and when she was ready, they would reconnect it.
After this experience, we never again let our guard down. There were times when we would be happy and excited because she made big improvements or there were big gains in her growth. Yet, we were always prepared for the other shoe to drop.
She had her intestine reconnected almost exactly two months later on February 22nd, and was able to come home two days after her due date on March 10th. While not the last obstacle we faced, it was by far the most serious, and the scariest.
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For more of her story, and all things Preemie and NICU related, check out: Preemie Life